Re Chronic Lyme disease-I don't have the reference on hand, but one of the "Lyme-literate" books reported a credible instance of blood from a mouse that had gone through the standard treatment transmitted Lyme to a previously uninfected mouse.
Just going to copy/paste this from my comment on your peer review feedback version, which addresses your paragraph about Chronic Lyme Disease being psychosomatic:
Hi, I have ME/CFS. I was also diagnosed with Chronic Lyme Disease last year. (But I decided not to believe it, and that was the final straw to stop seeing that healthcare provider.)
Your paragraph about psychosomatic conditions and CLD is framed in a way that doesn't make sense.
First off, it doesn't make sense to say CLD is universally considered 100% psychosomatic. CLD is not a coherent diagnosis! The diagnostic criteria for CLD varies doctor by doctor. (Err, alternative doctor by alternative doctor.) They try to say it's "the great imitator." They say that basically any vague chronic symptom can be a symptom of CLD.
If you meant something like "the symptoms of CLD are all symptoms that are always psychosomatic": that's not true either. Despite my CLD diagnosis, my symptoms are not psychosomatic. (At least to the best of my knowledge, and at least according to my doctors and therapists from the last few years.)
The set of people who "have CLD" ≈ the set of people with vague chronic symptoms who, at some point, visited the type of "doctor" who gives out CLD diagnoses. (i.e. naturopaths, chiropractors, "Lyme-literate" MDs.)
Secondly: the reaction to calling a condition "psychosomatic" is not simply an aversion to that concept. It sucks to be told your chronic symptoms are psychosomatic because, AFAIK, that's generally not followed up with any treatment (or at least any effective treatment).
I have spoken to many chronically ill people who would be _so happy_ to learn their condition is psychosomatic — if it meant they would get some kind of treatment and therefore relief.
Panic attacks cause weird physical symptoms. These symptoms are therefore psychosomatic. People who get panic attacks have to learn to accept that. But that's fine. Because panic attacks are treatable! If the reason for your lightheadedness is "you're having a panic attack," that's useful, because now you can work on having fewer panic attacks.
By contrast, IME, "your fatigue is psychosomatic" doesn't come with any action items. "Your fatigue is due to depression" means you can go get evaluated for depression, take antidepressants, do other things that work for depression, etc, and see if your fatigue gets better. But if a patient is told their fatigue is psychosomatic with no next steps, it's basically an unfalsifiable dead-end claim.
Rheumatologist here agreeing with you- - I personally think "psychosomatic" is pretty stigmatizing and less reflective of what's actually happening than "functional" (aka it's not structural but things are just not working right) or "pain processing disorder" (you're in pain because your nervous system has its wires crossed not because there's anything structural). These also carry the implications of possibility for treatments like pain CBT, reconditioning, and biofeedback. Psychosomatic implies people need to treat their depression and their symptoms will go away which is unfortunately rarely the case.
"It sucks to be told your chronic symptoms are psychosomatic because, AFAIK, that's generally not followed up with any treatment (or at least any effective treatment)."
"But if a patient is told their fatigue is psychosomatic with no next steps, it's basically an unfalsifiable dead-end claim."
Why would there be no next steps? Prescribe stimulants and see what happens?
My understanding is that "Chronic Lyme" is actually *distinct* from "Post-treatment Lyme disease syndrome". That is, if you have Lyme and get antibiotics for it and then you continue to have fatigue and other such problems (this is my current situation), this is a normal-ish thing that can get treated, probably, hopefully, maybe. Chronic Lyme in cases where one wasn't ever diagnosed with acute Lyme is the one that is considered psychosomatic by everyone except alternative medicine people.
"Chronic Lyme in cases where one wasn't ever diagnosed with acute Lyme is the one that is considered psychosomatic by everyone except alternative medicine people." This still isn't an accurate statement. CLD (in cases where one wasn't ever diagnosed with acute Lyme) is an inconsistent, incoherent diagnosis.
I don't think doctors consider CLD to be psychosomatic. That implies it is a _coherent thing_. I think they consider it to be "not a legitimate diagnosis."
I agree that Post-Treatment Lyme Disease Syndrome is a different thing and a legitimate diagnosis.
Chronic Lyme is the charlatan’s name for a money-printing machine. There have been many previous names and there will be more. The base rate of exploited sufferers makes it hard to discern what’s really happening. But blame the charlatans, not the sufferers.
I'm sympathetic, but also I'm reminded of the recent review Scott wrote of Crazy Like Us. It seems like "symptom or condition X is psychosomatic" getting into the proverbial water can sometimes be an effective prophylactic for X (iff it is, in fact, psychosomatic). I imagine that if you're an X patient during the phase where people are starting to catch on but X hasn't disappeared yet, that would really suck. But I'm not sure it would suck bad enough that we shouldn't try to make "X is psychosomatic" common knowledge anyway, to get it to go away.
Not even remotely a subject matter expert in this, so probably got something wrong about the CLU angle. Would appreciate an explanation if it's an easy mistake to correct.
Once it gets into the water that "X is psychosomatic", people stop mentioning X to their doctors regardless of whether X is a real thing with a concrete physical cause, because no-one wants to be dismissed and humiliated and there's nothing to gain if no treatment will be offered.
This is a fair point, and something worth considering, but it doesn't invalidate my point. If the specific manifestation of General Formless Mental Illness (per CLU) is extremely bad, then we should probably do the whole "lower its status so it goes away" thing, even though, I entirely admit, this will have some collateral damage and that will suck. "This policy has both costs and benefits"!="the costs of this policy outweigh the benefits".
Hi! I also got diagnosed with chronic Lyme and walked away from the diagnosis. Later (much later), a geneticist confirmed the real problem was Ehlers-Danlos Syndrome (EDS). So, not psychosomatic. But often mistaken for psychosomatic.
I wonder how many other "Long Limeys" out there have physical problems easily dismissed as psychosomatic — especially if they're women, or judged unreliable in some other way.
If you've got achy joints and muscles, kinda generally crappy health that's not definitively autoimmune but seems "autoimmune lite"; if nobody thinks to do the dirt-cheap and easy screening test for EDS (the Beighton test) on you; and even *you're* convinced the symptoms are probably psychosomatic — and then you get a positive lab for Lyme...
And that lab means a doctor finally stops trying to "see through" your physical symptoms and instead treats them with extensive supportive care for the very first time, while you're also relieved of the strain of trying to solve non-psychosomatic symptoms by "acknowledging" they're psychosomatic, then it will feel like CLD treatment works, rendering the diagnosis of CLD plausible even if you're a pretty skeptical person.
At least for a while.
I was young and dependent on family when I got the CLD diagnosis. I was aware some labs are so sensitive false positives might not mean much, but I was desperate, the family I was dependent on was invested in "Lyme literate" care, and that care *was* helping me get better. For a while.
I started skeptical of CLD, but that skepticism softened when treatment seemed to be helping. Plenty of us will swallow our pride when something silly seems like it's working. As time wore on, "Lyme literate" advice for what I'd have to do to get even better just got sillier, and I couldn't take it anymore. I figured, if Lyme disease *had* been my problem, I was as cured from *that* as I was gonna get, and I should just be happy with the net improvement.
The net improvement lasted several years. But EDS bodies keep injuring themselves, the sterile tissue injury keeps kicking up the immune system, and stuff got bad again. It took decades between the onset of EDS symptoms and an EDS diagnosis — despite how cheap and low-tech Beighton scoring would have been if anyone had thought to do it! I've got the funny joints, skin that's a bit funny in the characteristic way: it wasn't hard to see if you knew what to look for.
There's nothing unusual about an EDS diagnosis taking this long, with multiple misdiagnoses (likely condescending, quacky, or both) along the way — especially if you're a gal. According to a European study, "A period of 14 years elapsed between the first clinical manifestations of the disease [EDS] and diagnosis for half of patients (28 years for 25% of the latest diagnoses). This delay was longer for females (an average of 16 years) than for males (an average of four years)."
In Spanish hospitals where they screened all anxious patients for hypermobility, they found EDS more common among nonwhites than whites. Still, if you go to an EDS support group in the US, you might be forgiven for supposing EDS is characteristically a disease of entitled white women — as if it were some fake disease to lend drama to their too-easy lives, like CLD. I suspect that EDS seems like a fakey "disease of privilege" because the less privilege you have, the less likely you are to ever be correctly diagnosed with EDS if you have it, and the more likely you are to be written off as some hysterical malingerer — drug-seeking, too, if your pain gets bad enough. This, despite screening for EDS being dirt-cheap and easy if you use Beighton scoring.
I meant "as if it were some fake disease to lend drama to their too-easy lives, like CLD" as the callous stereotype of CLD patients. I know others helped by a CLD diagnosis, as I briefly was, and who seem to have no better alternative. And I definitely would *not* classify them as Karens dressing up the blandness of their Karenness with invented medical drama. No, they're suffering people who don't fit into other diagnoses and treatments. They take what they can get, and are grateful for it.
I have EDS and Lyme and many other things, absolutely have been treated like I was crazy. Until the doctors send me to psychiatrists who say otherwise. I believe in chronic Lyme, as in EDS and possibly long COVID - there are a few genes that make some of us more susceptible - HLA and others
I had an interesting experience with long COVID. (It was being called post-COVID syndrome back in February). I was symptomatic with COVID for two weeks and never recovered over the next two months. I ended up going to the ER 3 times. Doctors ran a million tests and couldn't figure out what was wrong. They told me the diagnosis was a catch-all for "we're not sure but you had COVID and you're still sick so we'll just go with this".
Eventually they figured out that I actually had a super-rare form of cancer called a Ewing's like sarcoma. Which is only one percent of cancer cases in the US annually. I also talked to another sarcoma patient who had a similar thing happen to him this season.
I'm not sure if this is a trend or anything but it would make sense. COVID sucks up so much of the metaphorical oxygen in the room that everyone is naturally going to think about it first if anything weird is going on.
Jonathan - so sorry for your terrible year. But, yes, Covid comes to the top of a lot of our differential lists right now and sometimes causes delayed diagnosis. A lot of folks have abnormal CT scans post-Covid now and some have enlarged a ill art lymph nodes post-vaccination. So, your unfortunate situation isn’t unusual. Hang in there - we’re rooting for you!
When you do these peer review things it would be helpful if you listed any major changes between versions somewhere so we don't have to read the whole thing again.
I would post a diff of the the whole articles to a pastebin but don't want to volunteer myself as allowed to publish the exclusive, subscribers-only peer review version.
I ran the peer review version and published version through a diff tool. That's unified diff formatting. The line with the minus was removed, and the line with the plus was added.
That was one of a few dozen changes.
Scott apparently decided to say he uses Hans Asperger's diagnosis rather than appreciating it.
I was posting that as a teaser and also trying to make a big deal out of it tongue in cheek.
It doesn't help that the formatting looks way worse on a smartphone, which I am only now seeing.
My parents (86, 78) both caught covid in Chennai, India, in April 2020. It wasn't clear if the hospital even knew to diagnose it with a reliable test, but they seemed to diagnose my Dad by CT scan. Dad had severe fatigue, some disorientation, pulseOx of 94 (luckily I'd bought them pulseOx). Dad was forced to get admitted by the city govt. Mom had a cough.
They were the only 2 in the isolation rooms (no other covid patients...it was a new thing in the city still).
They had a negative, a series of positive tests and again 2 consecutive negative tests. In the interim they were given tons of anti-virals, HCQ etc. After being discharged they felt severe fatigue, loss of taste. That probably started earlier. But got worse after they tested negative. So maybe that was the beginning of long covid.
Their CBC results were crazy numbers...but everything settled to normal after they got home, in about 6 weeks. It is easy to get blood drawn and tested in India, so we were doing it. Doctors said these numbers being off was not really concerning. It was normal with any virus.
No one was allowed to come to help them. That was very stressful. The rules were being figured out. We were afraid if their apt complex would let them back in after release...but luckily that all worked out.
The symptoms they had for the longest time, maybe 6 weeks, were fatigue and loss of taste. I sent them Ensure (good protein, nutrients, easy to digest) and begged someone to deliver it to them. This was all hard because they were socially marked as covid positive even after being sent home. Ensure is what saw them through. They could make it themselves.
Soon they were allowed help in the house, as they tested negative repeatedly. They started eating SUPER healthy. They've always been good about that but took it up a notch.
I believe Ensure was the key. And eating healthy overall. Resting too. In some ways they're healthier than before covid, now, a year and a half later.
Nutritional shakes are quite overrated IMO anyway, and the ingredients on it do not look super inspiring (love to get all my fats from canola and corn oil). So it’s just - added sugar and maltodextrin (which, despite being labeled as an added carb on the ingredients list and not as an added sugar, is “Maltodextrin is easily digestible, being absorbed as rapidly as glucose”, which seems misleading). And then soy protein isolate, and canola and corn oil., some ingredient for taste like cocoa powder, and then a bunch of ingredients roughly equivalent to a multivitamin, which are generally as far as I know not considered super awesome - source gwern “as parting thought: millions of Americans (estimated at around a third or more of adults) regularly take multivitamin supplements. These supplements are unlikely to help a balanced diet, there is little evidence they do, and there are studies which have indicated actual harm from the consumption of multivitamins39 from Gaston” with source here https://www.gwern.net/Melatonin#fn39 . And while that extra random % of daily value worth of vitamins (Ensure seems to randomly choose between 20% and 80%, except 0 folate) is probably good relative to a vitamin less meal replacement, I think everyone would be better off just eating normal food.
You know, in their situation, where they were fatigued and unable to buy food or cook, this was an amazing option. It was the very first lockdown and very little else was possible. This had calories, protein, etc in easily digested form.
I agree it is highly processed food and generally not a great idea.
I guess I’d recommend, in that case, precooked/microwaveable meals made out of a variety of whole ingredients, which are widely available, including for delivery, if they’re genuinely too sick to cook themselves. Or just ordered ingredients for them to cook.
Lockdown was extreme in India, and new then. You had to be tech-savvy to order stuff.
And the pre-prepared food industry never took off in India because I guess of cultural views (specially in previous generations) that eating "old" food is ultimately unhealthy. People try to eat freshly made food.
I've tried to convince my relatives to freeze food, to no avail.
Food cooked in the morning, if eaten at dinner - you would be seen as living a sorry life.
Still, diabetes rates are high, because sugar consumption is high and processed grains are consumed a lot in the past 50 years.
Anyway, microwavable or frozen prepared foods are simply not available widely, as you seem to suggest.
The Tanzania case sounds more like encephalitis lethargica (most known from legacy cases in the Robin Williams, Robert De Niro movie "Awakenings"). The illness was concurrent with Spanish flu, but the trademark for EL was post-infection fatigue.
I don’t know to what extent it’s consensus, but my understanding is that many experts have come around to the idea that encephalitis lethargica *is* long Spanish flu, so to speak. I guess Scott is in the camp that believes this.
I just wanted to comment that one theory on post-viral CFS/ME and one that seems to be related to some people's long covid (see this twitter thread for an example: https://twitter.com/ar_pnw/status/1432772600480944128) is that viruses can lead to a degradation of connective tissue which leads to cranial and spinal instability which leads to the long list of CFS/ME symptoms.
There are a growing number of CFS/ME patients being cured by getting surgery to correct cranial/spinal issues, and there is growing awareness that some patients with CFS/ME had connective tissue disorders before getting CFS/ME.
Two cases that anyone interested in CFS/ME (whether they're just interested in it or they have it or know someone with it) may be interested in are those of Jen Brea (recounted here, https://jenbrea.medium.com/cci-tethered-cord-series-e1e098b5edf) and Jeff Wood (recounted here, https://www.mechanicalbasis.org/). It is incredible how these people have recovered, how they may have gotten sick in the first place, and how horribly the medical system can be until you figure out what's wrong with you and how to navigate it.
Also, while the documentary Unrest (mentioned above in the WSJ comments) sounds like it is really great and I plan on watching it, the documentary is missing what surely is the best part of Jen Brea's story, her recovery.
Another note, I've been reading Ron Chernow's biography of John D Rockefeller and I'm convinced with wife had CFS/ME. It sounds like she had the classic post-exertional malaise that is hallmark of the disease (maybe caused by your spine poking your brain when you move)
I clicked through to a few of these and, while I know precisely nothing about any of this, I’m extremely nervous that a lot of it seems ... ehhh ... a bit suspiciously alternative sounding. Especially combined with recommending surgery. It would not be the first time, or even the 100 thousandth time, that hundreds of people swore an invasive treatment helped them even though it actually didn’t. But again no clue what I’m talkin about, entirely possible that all works. I just recommend caution in areas of “niche under recognized diseases”, because a lot of them end up being either wrong or misconstrued, especially popular social media ones.
Hopefully everyone is cautious before they get a serious surgery! This includes a lot of personal research to make sure that they have a competent surgeon, that they've had second opinions, that they've had all the proper diagnostic procedures, and more. Sadly all of this takes someone being smart and competent enough to do a lot of hard work.
If you read Jen Brea and Jeff Wood's cases, both of them had clear signs of CCI on their MRIs and both of them had very clear remission of disease with cervical traction. They were also fairly advanced cases of ME/CFS who were bed ridden.
Could you expound what specifically sounds alternative about spinal issues leading to ME/CFS?
Also, I am not familiar with cases of "hundreds of people swore an invasive treatment helped them even though it actually didn’t". I believe you that they exist, but I'm skeptical about the number of these cases and can't actually come up with any off the top of my head.
> Take what happened with spinal fusion, an operation that welds together adjacent vertebrae to relieve back pain from worn-out discs. Unlike most operations, it actually was tested in four clinical trials. The conclusion: Surgery was no better than alternative nonsurgical treatments, like supervised exercise and therapy to help patients deal with their fear of back pain. In both groups, the pain usually diminished or went away. The studies were completed by the early 2000s and should have been enough to greatly limit or stop the surgery, says Dr. Richard Deyo, professor of evidence-based medicine at the Oregon Health and Sciences University. But that did not happen, according to a recent report. Instead, spinal fusion rates increased — the clinical trials had little effect.
Back pain and CFS are different, but, lol
> In 2009, the prestigious New England Journal of Medicine published results of separate clinical trials on a popular back operation, vertebroplasty, comparing it to a sham procedure. They found that there was no benefit — pain relief was the same in both groups. Yet it and a similar operation, Kyphoplasty, in which doctors inject a sort of cement into the spine to shore it up, continue to be performed.
So here’s a bunch of examples of supposedly sham surgeries. Ouch!
If I had to guess they, again idk what I’m talking about, probably did have the CCI and it helped, and that probably was a “cause” of the symptoms they called CFS, but i dunno how many others that’s true of - a lot of different causes mah be lumped into that term. And for all I know they might even be wrong about that somehow, which is always a possibility. It seems like quite a few common surgical procedures aren’t that necessary, and the CFS community has ... a lot of nonsense, and individual accounts of benefit in medicine are often really not great. I know I haven’t evidenced the claim that for above ineffective surgeries people claimed great benefit, but I’ve personally heard it and I strongly suspect a significant portion of people who went through them claimed benefit.
Oh, back pain is definitely a case of surgery ending up being no better than placebo. I should have thought of that one! And I think you're right that people who get the surgery often claim great benefit.
Also, the CFS community does have a lot of nonsense and accounts of people miraculously getting cured from XYZ and then still having CFS.
Spinal fusion is the only thing that worked for me, after several years of not even being able to put my own shoes on, periods of near complete paralysis from spasms, pissing into a bottle my wife had to empty for me, becoming unable to drive, unable to sit.
Thankfully, due to very obvious structural damage even a layperson could see on an x-ray and MRI, I never had to deal with people trying to tell me I was imagining this and CBT would solve all my problems. The surgeon explained to me quite clearly that, given the amount of narrowing of my nearly non-existent discs at that point, my spine was going to fuse one way or another. This eventually happens to all people, but usually not until your 80s or so. Pathological tissue degeneration meant it happened to me in my early 30s. So, at a certain point, you can wait 5 years for your vertebrae to fuse themselves, going through incredible pain as you live with bone-on-bone joints where the largest nerve in your body lives, or you can do it surgically.
I guess it's entirely possible recovery could have just happened on its own and this was all placebo, but you can't fake visible tissue damage, and I have a hard time believing I was going to end up fine with no intervention or just psychological therapy when I was using floor-mounted assistive tube devices designed for people in hospice care to put my socks on at age 35.
I don't think the chance of being hit by an airplane is 1/250,000, that would be 1300 Americans per year and that does not seem possible.
Also, I don't think that "What’s my yearly risk of getting COVID if I try to live a normal life?" is a useful question. I think "If I live a normal life, how much does the risk of Long Covid increase?" Or more generally, "If we all go back to normal lives, how much does my risk of long covid increase?"
> Preliminary estimates of the total number of accidents involving a U.S.-registered civilian aircraft decreased from 1,347 in 2018 to 1,302 in 2019. The number of civil aviation deaths increased from 395 in 2018 to 452 in 2019. All but 8 of the 452 deaths in 2019 were onboard fatalities. Four of these deaths involved a commercial airline.
People keep quoting this same chart... I think it turned out that the airplane number is chance *per lifetime* of an airplane hitting *any part of your house*, and is possibly skewed by a few specific events that happened in the UK.
I suspect a lot of it is light aircraft, (single digit passengers or just a pilot) which crash fairly regularly, but don't do that much damage, so don't get into the news.
yeah, that whole chart was various lifetime risks - if serious Long Covid is a comparable risk *per year* to various somewhat standard *per lifetime* risks, that's really bad!!
I'm sorry, but after reading the portion about willpower and me/cfs I am still skeptical and unconvinced. Heron's post, especially read to me as Heron deciding they felt unwell, going to many doctors and undergoing extensive tests to find nothing, and then self-diagnosing that they have an extremely rare condition their doctors haven't heard of that doesn't manifest itself on any testing known to medical science.
Is there any hard evidence that it is a physical condition that wasn't mentioned? Having read the article the impression I got is that it's just a psychological disorder, one that conveniently can't be disproven through medical science
For some ME/CFS is maybe a psychological disorder, but for others, and it looks like it could be a decently large subset of those with ME/CFS from recent research, ME/CFS is caused by craniocervical instability (CCI) or other spinal issues that do manifest themselves on tests known to medical science. Very few doctors are going to know this though, which shouldn't be surprising at all. And of the doctors that do know this, very few are going to be experts on CCI or other spinal issues, the related tests, and the effective treatments.
There's no diagnostic test for ME/CFS (/ Long COVID cases that appear to be ME/CFS). But that doesn't mean ME/CFS patients cannot objectively prove they are disabled.
I'll tell you about medical tests that ME/CFS patients use to prove they are disabled in an insurance context. Disability benefit providers argue claimants are malingering until proven disabled; they have a high bar for proof. Maybe this will help demonstrate the legitimacy of ME/CFS symptoms.
There's this thing called a 2-day CPET. It stands for "cardiopulmonary exercise testing." I don't know a ton about these, but I know they involve a lot of physical exertion. Physical exertion causes "post-exertional malaise" (PEM) in ME/CFS patients. This test can measure PEM.
(But this is a risky test for ME/CFS patients. Not something to do casually. Some are fine afterwards, some take months to recover, some never recover. Triggering large amounts of PEM appears to permanently damage the health of many ME/CFS patients.)
ME/CFS patients also do neuropsych testing to demonstrate their cognitive deficits.
And there's this one condition that super commonly co-occurs with ME/CFS: Postural Orthostatic Tachycardia Syndrome (POTS). This condition actually has a straightforward and objective diagnostic test. Basically, a doctor observes how a patient's heart rate is affected by standing up after lying down. POTS patients see a 30+ bpm increase.
(In my experience, my POTS symptoms and ME/CFS symptoms are heavily entangled. I don't know where one starts and the other begins.)
Regarding this, "In my experience, my POTS symptoms and ME/CFS symptoms are heavily entangled. I don't know where one starts and the other begins," what do you think of Jen Brea, Jeff Woods and others having all their POTS and ME/CFS symptoms disappear with cervical traction and then CCI and tethered cord surgery?
It seems to me that POTS and the other symptoms have, for many (given a recent paper on the prevalence of CCI in the MRIs of those with ME/CFS), a common cause.
> what do you think of Jen Brea, Jeff Woods and others having all their POTS and ME/CFS symptoms disappear with cervical traction and then CCI and tethered cord surgery?
Not sure exactly what you're asking. I think it's amazing. I am very happy for them. I think this area of ME/CFS treatment validates the legitimacy of the condition, since it involves diagnosis through MRI and treatment through surgery.
On a personal level: I have already been evaluated for CCI by my ME/CFS specialist, and she does not think I have it. Traction doesn't help me. I suspect tethered cord may be possible in my case, but it still seems unlikely and I'm investigating other treatments first.
Julie Rehmeyer fell ill with ME/CFS in Berkeley. It seems that mold triggered her illness. In her memoir, Through The Shadowlands, she talks about how she ended up doing "extreme mold avoidance," and that put her in remission. IIRC, she was doing well until she suffered some extreme mold _exposure_ through a neighbor's improper handling of moldy material. Then she developed structural issues such as tethered cord. (Or maybe these issues just worsened and she wasn't previously aware of them?) She has gone through multiple surgeries, and now she seems well again.
Mold appears to be the most likely trigger for my own illness too. I think it's plausible I'll develop structural issues down the road, like Julie Rehmeyer. So it's on my radar.
I don't deny that orthostatic tachycardia may be correlated with ME/CFS, but I fail to see how the two could interact directly with each other. Anecdotally I was formally diagnosed with orthostatic tachycardia roughly 20 years ago but have nothing like ME/CFS; just a small risk of fainting when standing too quickly. Which, frankly, proves nothing but made me interested enough to comment.
I've heard about the 2-day test in a New York Times article. Basically, the test works like this: they have you exercise until you get tired, and then do the same thing 24 hours later. Most people, regardless of whether they're fit athletes or frail grandparents, will do about the same on both days, but CFS patients do significantly worse on their second day - they don't recover their stamina the way most people do.
I also know about Bhupesh Prusty working on it and claiming to be succesfull on his twitter, not about his publications about it. But there seems to a special issue in Biomolecules planned about it where he is the special issue editor.
Also there is a long list for diagnostic biomarkers in the mepedia wiki but haven't looked at most of them. I think most there wouldn't be specific enough.
As far as I remember both Prusty and Davis claim to have a specific enough test but it requires special equipment and/or is currently too expensive to do in a larger scale.
> Is there any hard evidence that it is a physical condition [...] the impression I got is that it's just a psychological disorder
Just a nitpick because I see this claim a lot: psychological disorders *are* physical conditions. Unless you believe human psychology is driven by some kind of voodoo magic, every psychological condition has a physical manifestation, they're just too subtle and complex to detect and treat like other physical conditions, so we use blunt instruments like "therapy" which have indirect associations in modulating the physical mechanisms causing them.
You've gotten a lot of people posting relatively technical things, so I'll just contribute a simple anecdote: you might be picturing someone who avoids work but is capable of various recreational activities, fitting some mental stereotype of laziness. When I first got ill, I was sleeping over 20 hours a day. Throughout the many years I have had CFS I have usually sacrificed recreation to conserve energy for work, rather than the other way around (assuming I had energy for either; that's varied). This really isn't a matter of avoiding unpleasant tasks, it's things like being hungry and not having enough energy to get out of bed and go to the kitchen.
I also though about mentioning my own experience with it and how the symptoms were was quite clearly contrary to my believes. As you mentioned many have to priorities work over pleasure and its also typical for patients to be in denial about their own limitations for a long time. That normally leads to a push-crash cycle. Patients push there activity when they feel okay (often doubting there own symptoms at the beginning) and the severe reaction to it (post exertional malaise) often comes with a delay of hours to a few days (also highly untypical for a psychological effect). This crash reaction then forces you to rest until you feel better to push again, but the cycle often causes a long term decline at the beginning of the disease.
In general looking into people who got me/cfs you will see that many of them had a very active lifestyle before and didn't show any risk factors for suddenly having a psychosomatic illness or just "deciding they felt unwell". Also the pattern of the symptoms usually don't line up with how you would expect such an psychosomatic illness to look like from my experience based on doing my masters in psychology.
Yes, dozen of abnormalities have been found in immune cells, cytokines, EEGs, mitochondria function, and so on in ME/CFS.
Institute of Medicine in 2015: "Key findings
"Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."
ME "is a medical-not a psychiatric or psychological — illness"
"This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort."
"Many people with ME/CFS report difficulty completing everyday tasks, and at least one quarter have been home- or bed-bound at some point as a result of their illness."
"The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."
"ME/CFS can severely impair patients’ ability to conduct their normal lives."
How is chart B from Logue et al supposed to be interpreted? It can't be that mild and severe symptoms are counted separately, because in several cases, the bars for mild and severe symptoms during acute COVIC-19 sum to more than 100%. And it can't be that "mild" means "at least mild", because in several cases, the severe bar is higher than the mild bar.
speculating, but since they were testing symptoms of multiple kinds, maybe the bars represent "People who have some symptoms at severity mild" and "people who have some symptoms at severity severe", which would be counting separately for each symptom but in the combined "all symptoms" plot would double count people who have "mild symptom A" and "sever symptom B"
I don't see this explicitly expressed in your article here, but I've been hearing more and more anecdotes regarding problems in extremities with respect to (possibly) long COVID, ie finger and toe pain and/or numbness, Reynaud Syndrome, etc. Is that just represented as the "tingling" entry in your neurological are of the charts?
FWIW, one of the early symptoms reported for COVID cases in babies was "swollen toe". I, personally, attribute this to circulating tiny blood clots getting stuck in the capillaries. (We know COVID can cause that.) But there's no particular reason that I can see why only toes or babies would be affected. So I also tend to consider this a likely cause for heart, kidney, and brain damage. If this is indeed occurring frequently (as per my hypothesis), then blockages of capillaries in any part of the body may be expected, including those feeding the neurons. And neurons take a long time to recover, if they live through it.
This particular cause could explain any number of symptoms, and could (in general) only be checked for by examining the particular areas suspected for blocked capillaries. (Specific cases might have other checks, but one would hope that the blood clots don't continue to be generated after COVID has disappeared.)
There's one argument about long COVID that I never see addressed anywhere, and which makes me believe this is NOT some huge threat that would massively disrupt society and/or warrant indefinite restrictions: there are plenty places in the world that have been, in fact, rather heavily hit by COVID and/or consciously do not implement major restrictions. Certainly there are places where double percent-digits of population had COVID. Yet we never hear about these places particularly suffering from long COVID. I mean, of course there are some sufferers, you might hear some anecdotes, but you'd think if "if a few percent of COVID patients get long-term unremitting genuine CFS/ME, that has the potential to overwhelm government welfare budgets and long-term depress the economy", we should be ALREADY seeing it in some places.
I'm Russian, although currently not resident in Russia, and Russia is my main reference country here: the country seems to have become fatalist about COVID and it stopped being newsworthy many months ago. Vaccination levels are low (25% fully vaccinated) and the vaccine is widely perceived as not particularly necessary and/or beneficial. Some low-level restrictions persist, varying by region, but adherence is low despite occasional police enforcement; masks are very often worn under the nose, if worn at all. Official death rate is close to 200,000 (in a country of 144 million) and estimates based on excess deaths make it closer to 600,000. And despite this all... there's no catastrophe? Life seems to be going on more or less as usual? Long COVID is occasionally discussed in Russian social media but nowhere to the same scale as I see in the Western world. It's not denied, in fact many people know someone who had or is having prolonged symptoms (my own mom got it in June 2020 and it took over half a year for her senses of smell and taste to recover, and it's still not 100% as it was before). The point is, the society is not really being overwhelmed by long COVID at all.
Is that because those societies also don't have good central government welfare, so people with these conditions just disappear, either looked after by family / friends or dying quietly?
The thing with Russia is that they have very high distrust for their government. So as soon as officials start a vaccination campaign lots of people start avoiding it as default behavior. State TV says "our vaccine is super-duper great" and all the social media instantly gets filled with antivaxers even though there weren't that many of them before. Antivax sentiment ranges from "I don't trust Sputnik, give me Pfizer" to "government is purposefully kiling you". And the fact that they don't approve any of the western vaccines adds fuel to the fire
Sure. A lot of people around here day "I won't get vaccinated because they don't let me choose the vaccine". I personally was hesitant for this reason too
I definitely agree that society isn't going to obviously overwhelmed by long COVID, but I think that many individuals will be and society will be worse off for it.
If you don't have good measurements, much of this might be difficult to detect. A few percent of GDP might be hard to detect without good GDP measurements. And even with GDP measurements, something that affects human welfare in equivalent ways, but doesn't affect purchasing and employment behavior, might be very hard to track.
Most Western countries also pushed a bunch of cash benefits out to their people, which would make it very hard to measure enrollment in programs. We may not see conclusive results for several years.
The countries that let it run rampant also tend to be the countries that don't really have much in the way of welfare for disabled people - so the sick people won't much affect the gov budget - or for that matter much in the way of good data collection in most cases.
Some countries have entire wars I don't hear about until long afterward, so I certainly don't expect to hear about long COVID in far-off places. Anyway, we're talking about something whose risk is a few percentage points, right? How scary that feels will vary from person to person - and from tribe to tribe.
Disabled people are ignored all over the world. In the US, a large group of long covid patients has been very prominent in media. Your point seems very weak.
Seems like that would be incredibly vulnerable to confounders, since people with the symptoms described would be likely to be at home using social media rather than in person social interaction. And you have the counterbalancing issue that people who are not exposed to media about long covid, but who do have it, are less likely to be reported
It certainly would be difficult to control for, but not more difficult than the other factors in existing studies.
The fact is that behavioural scientists in organisations like Sage in the UK have advised governments that fear is rational when the threat is real, and that by amplifying fear the government could increase compliance.
The CDC published data on 600k in-patients with covid that showed that anxiety and fear based conditions were the second largest commorbidity that signalled for severe covid after diabetes.
I'm not saying the government scared a whole lot of people to death but... No actually I am saying that. Yes, the WHO sent a directive to health institutions that modified the MCCD protocol specifically for covid, to break precedent to amplify death rates, so the death figures aren't reliable in themselves. But it is certainly plausible and supported by some evidence that fear worsened real symptoms by causing panic attacks that disrupted breathing and exacerbated the severity of symptoms in both vulnerable and healthy cohorts.
Social media derangement syndrome is real, but sadly since most academics and journalists have it it's an uncomfortable thing to study or cover.
You say it's "supported by some evidence that fear worsened real symptoms", can you point me to said evidence? I've not seen it and that's really interesting.
Also, I'm really suspicious of the CDC's 600k patient comorbidity report. If I recall correctly, the group of ICD codes that they had categorized as "anxiety and fear based conditions" included a bunch of drug addiction ICD codes and other things that could have made it look like generalized anxiety disorder or this-or-that phobia are much more correlated with severe covid than they really are.
I had a mild case of Covid in December 2020, immediately followed by heart palpitations (something I never experienced before) and neurological symptoms (tremors, intense twitching).
I was given an EKG holter on a cardiological clinic that showed a ton of extrasystoles, and one of the doctors asked me for description of my neurological symptoms. It turned out that this doctor had the very same post-Covid symptoms and was afraid of the possibility that it was actually onset of yet-undiagnosed ALS. After comparing our experiences, we came to the conclusion that it would be highly unlikely.
Sure enough, soon a third person known to both of us appeared with the same neurological problems.
But the really interesting observation: even though the problems persisted for months, they diminished after the first dose of Pfizer vaccine and basically went away after the second one in all of us. Not immediately, more like in a week. I recently got the EKG holter again to confirm. Zero extrasystoles over 24 hours, so back to normal.
So maybe subsequent vaccination has a healing effect on long Covid. That should be taken into account when mapping the long term aftereffects.
Diagnosing complete strangers over the Internet is, AFAIK, not a recommended practice.
As for your questions, I deleted my social media accounts many years ago. The above mentioned doctor has AFAIK never had them, he has got enough work as it is. I cannot vouch for the third person.
With regard to media, I dislike media hype and I try to inform myself over blander but more fact-oriented channels.
I also never had any type of a panic attack in my 43 year life. Whatever was on my heart was adjudicated as organic problem of uncertain etiology by the people who evaluated the 24 hour EKG record. A mild dose of beta blockers could get it under control and I am now being weaned off them without any major problems.
Glad to hear it. I think the implication that the vaccine cured your long covid is wish fulfilment. Organic conditions can have psychological or behavioural roots, as anyone with a stomach ulcer will tell you. I'm not trying to be rude or to diagnose you on the internet, just that is valid speculation, as valid as the vaccine having a direct curative effect on long covid without a known mechanism.
Pretty much everyone in my group of contacts had to rest for one to three days after vaccination with various aftereffects, the second dose effects being worse. I saw my own wife lying exhausted and weak after her Moderna shot. So if placebo was in play, I would expect to go down too; and I indeed planned my work in advance around that expectation.
Instead, I had just a bit of pain around the shot site and sweated a little, but nothing that I would call a problem.
Certain people are exposed to covid a lot. I have had covid twice, and it hit me pretty good both times. My lymphocyte levels were really crushed down, and it took a long time for them to come back, and they still have not returned to their previous levels. I'd be curious if there is any data looking at lymphocytes, CRP, and other markers in people with non severe covid. Get blood tests a few times a year, so I was able to track this. The low lymphocytes definitely correlated with me feeling like garbage. (that is a technical term for fatigue, shortness of breath and weakness)
Well, cheer up, it can't go on forever no matter what. Eventually long COVID would have to smoothly merge with what it's like to just be old ha ha. Feeling chronically fatigued -- check. Weird muscle and joint aches for no reason -- yup. Brain and digestion not working as well as it used to -- alas, check.
Right. If you're lucky you get born and grow up, learn and do stuff and have a kinda good time until you get sick and / or old and die. Not much of a problem. More interesting but sometimes shortened with motorcycles and booze.
I think the interesting question is how much "what it's like to be old" just absorbs other background conditions and is not worsened by them, vs how much "what it's like to be old" just *is* having lots of background conditions that have built up from various injuries and illnesses over the course of your life. To the extent that it's at all the latter, it would be very good to be able to avoid these illnesses and injuries over your life, to make your old age less bad.
Well, I'm pretty skeptical. I realize it's the optimistic hope of all the thirtysomethings I see in the gym, but my impression is that, outside of a few notorious cases (e.g. chronic alcoholism, HIV and assorted STDs, mercury or lead poisoning) the accumulated environmental damage theory of aging is dubious. I can't think of any good mechanism for it, and FWIW it's certainly not consistent with the people I know who've grown old. Some have been fit and healthy in their youth but got age-related disabilities and diseases young, some were slobs and couch potatoes when young and trundled on into old age the same way. I don't doubt there's *some* effect, but mostly age-related infirmities seem to arrive on their own timescale, driven largely by genetics and perhaps some mysterious epigenetic clock buried deep in the mitochondria -- which if anything might be influenced by very long-term trends in diet and activity, but probably not to the extent that there's a significant difference in being a marathoner and just able to trot around the block without huffing and puffing.
On the other hand, it's certainly true that these infirmities can be significantly enhanced or ameliorated by lifestyle choice. Your digestion may start to fail, but you can compensate (or make it worse) by a better choice of diet. You don't get fit the way you used to, but you can make that worse by being a slob and slow its effects considerably by judicious exercise. But I've never seen evidence (and can't think of a mechanism) whereby if you eat right and exercise right you can have the digestion, physical resilience of a 35-year-old when you're 65.
Sure it is. You can stop worrying about whether you're doing exactly the right thing to preserve the ideal health of your 20s and 30s forever -- because you can't. Instead, you can start thinking about what to *do* with your limited period of ideal health, and how to prepare for the next stage (or for unexpected weird accidents like long COVID) so that when (and not if) that stuff happens, you react constructively.
The kind of fatigue and muscle pain that accompany post-viral symptoms are nothing like natural aging. I was bedbound for two years in my early 40s with post-viral ME/CFS. Muscle pain regularly was 6-8 on the pain scale for those two years. Does that sound like the creaks and aches of aging?
But the mind is part of the brain and the brain is part of the body and all sorts of physical and non-physical stimuli affect and impact any of the mind/brain/body which in turn affects other parts of our kooky and complicated system.
We need LongCovid studies with proper controls and premorbid information, we need LongCovid studies in Japan, in South Africa, in Belarus, in Argentina, in Morocco, etc. We need to understand what this is or could be across a variety of cultures and environments because, as it stands, I simply do not buy it. The Western-Anglo culture encourages and abets solipsism to the point that self-reporting fatigue, as a condition and not a temporary feeling, is simply something I do not buy. Call me callous or naïve but I simply don't buy it.
This sounds like you're just imposing your strong prior about what is real, based on vague cultural stereotypes, rather than seriously engaging with the prevalence levels. Would your argument not equally apply to ME, depression, or basically any illness diagnosed via self reported symptoms? What about long covid induced fatigue makes it more suspect?
Not saying it doesn't exist, saying it appears to exist majorly in loud, selfish, modern Anglo cultures -- maybe there's other factors than simply the virus that exacerbate these psychosomatic (and psychosomatic-looking) illnesses.
Sure. But even if something is caused or exacerbated by cultural features, it's still a real something, and it still has real effects on well-being. If we understand that it's caused by cultural features, then maybe we can do a quick and easy fix, like eliminating parking lots, or changing the norms of popular YouTube influencers, or whatever cultural oddities of Anglo cultures are causing it, rather than something difficult like an intervention on the body of the patient.
taking your very appropriate snark seriously, there's mounting evidence that a lot of apparently mental conditions are due to issues with the gut microbiome
As somebody with an interest in this area*, I think this is an excellent overview. With regards to ME/CFS, I find the following things relevant:
1) It's hard to understate just how poor a lot of ME/CFS research is, even from mainstream institutions. Rubbish case definition (see next point), tiny sample sizes, lack of blinding, subjective outcomes not matched by objective measures, outcome switching. Certainly on the treatment side (regardless of whether this is a psychological or physical treatment), a lot of it fails the 'homeopathy test' - i.e. 'is this trial design so flawed that it is possible to get a positive result if testing homeopathy using the same design?'. (Special shout out here to the SMILE trial that found a therapy that appears to consist of drawing chalk circles on the floor whilst chanting 'I'm strong like a tree', and that claims to cure all manner of ills including Multiple Sclerosis, to be effective)
2) Case definition in ME/CFS is a mess, and Long Covid seems to be following the same path. Little care is taken to differentiate patients with general fatigue and those with post exertional malaise (aka post exertion symptom exacerbation). If one's fatigue is down to mild depression then an exercise therapy might be a good intervention; whereas for somebody with PEM it might be pretty much the worst thing to recommend. The ONS data in the UK is likely to be garbage because it is just so nonspecific.
Similarly, misdiagnosis is high. Newton et al found that 40% of patients referred to a CFS clinic had alternative diagnoses upon further investigation.
3) On the psychosomatic issue, I hesitate. On one level, it doesn't really matter as to aetiology, if people are suffering. And, regardless of aetiology, prognosis for ME/CFS is poor and the treatments pretty ineffective. On the other hand... medical practitioners like to talk about inappropriate mind/body dualism but one is still referred to *either* neurology or psychiatry departments. I also find is surprising that if it is down to 'false illness belief' that CBT or GET interventions are not more successful in leading to recovery, especially with respect to success rates in treating phobias etc.
Finally, I find the distinction between 'normal post-viral fatigue' and (assumed psychosomatic) ME/CFS really weird. Assume that somebody gets a bad case of glandular fever/mono. If, two months later, they are suffering from fatigue/brain fog despite the virus having been effectively cleared from their system, this is considered 'normal' *even though AFAIK nobody can explain the mechanism as to why they are still experiencing symptoms*. The moment they hit the 3 month/6 month mark (depending on case criteria used), many doctors will confidently decide this is now down to a psychiatric issue. Does this mean that a patient experiencing post-EBV fatigue at two months is also temporarily delusional? I don't think I've ever seen a good explanation of the difference between the two from those who hold a psychosomatic explanation for ME/CFS.
*I started looking at the evidence regarding ME/CFS when somebody close to me was diagnosed with it. It's fair to say that, prior to that, my view (prejudice) was that ME patients were just very angry hypochondriacs.
"I started looking at the evidence regarding ME/CFS when somebody close to me was diagnosed with it. It's fair to say that, prior to that, my view (prejudice) was that ME patients were just very angry hypochondriacs."
It's a common view and it has led to immense suffering as governments, med schools, and medical societies have all neglected ME/CFS. It's easier to neglect a debilitating illness when docs are taught it's not a real disease.
Hah, I was thinking about whether I should add physicist as a third option!
I'm in philosophy, and there's a definite culture split between the LaTeX and MS Word people within the field. It's weird that most other fields are all one or all the other, and even weirder that chemistry (my partner is a chemist) seems to be an all-MS Word field.
I expect that most chemists aren't writing code as part of their research (though I know there are subspecialties that do), and that is what I expect to be the primary correlate of MS Word or LaTeX
That "Being hit in your home by a crashing airplane" figure is a couple orders of magnitude bigger than I would have guessed. That means that in a city of 1M inhabitants, 4 of them in average have been or will be hit in their homes by a crashing airplane?
Also depends on if it counts "bits of aeroplane"; if a plane disintegrates over a city, then hundreds or potentially thousands of houses will be hit by fragments.
- Ask them if they are experiencing any Long COVID symptoms (without mentioning it specifically).
- Test for antibodies.
- Look at the responses of those who said that they have *not* had COVID or a vaccine but *do* have antibodies.
This way, it would be possible to get data on Long COVID incidence from people who've had COVID unknowingly. That group (previously infected + unvaccinated + unaware) may be quite small, but I still think it could be a useful exercise. Comparing their responses to the knowingly COVID-positive group might be revealing.
There is considerable evidence that in some people the antibodies disappear fairly quickly, and others never raise a significant number of them even though they did have COVID.
Doing a proper study is a lot more difficult than you are implying. Even that " Get a random sample of the population", as people are less likely to be willing to participate if they are tired all the time, and others have objections to taking part in a survey. You end up with "Well, it's as random as I could get, and it's not biased in any way I think of as important that I could easily fix."
So, yes, it's a study that needs to be done. But it's not a simple thing to do...at least not to do well. (Note the number of studies with small sample sizes, and consider how random a selection a population of that size could possibly be.)
Probably because since it's a rare effect and to get good statistics the random sample needs to be about 50,000 people and should sample from multiple regions of the country. Which leads to (1) how much would they have to pay you to participate, and (2) how much would they have to pay you to recruit all those people, give them some value for their time (e.g. maybe $20 each, or at least cover their costs), then set up and collect the questionnaire, direct them to a medical facility for an IgG assay, pay for the assay, collect and collate the data? This all sounds like a 7-8 digit number of dollars -- who is going to pay for that?
Because that would require a whole lot of hard, tedious work and the market for good data on COVID probably wouldn't support it. This is the sort of thing the CDC *should* be good at doing, and actually be doing, but the CDC hasn't exactly covered itself in glory on this one. Anyone else will find a more rewarding use of their time.
Count me as surprised that dying from "being hit in your home by a crashing airplane" was about 3x more likely than "drowning in the bath next year". The former sounds like one of those ludicrously unlikely things that only happens in the movies (e.g. Donnie Darko), the latter sounds like it should be one of those stereotypical "causes of death no-one talks about but are actually quite common".
Now I think about it again, the former is lifetime risk and the latter annual, right? That changes the ratio appreciably. Still not what I'd have guessed.
it's "bit of your house hit by bit of airplane" accidents where eg. an engine disintegrates in the air scatter a lot of small debris over a large-ish area - if that's over a city then many hundreds of houses are being hit by debris. Note that it's *not* the chance of *you* being hit by debris, let alone dying of it.
I have to tell you - I find your dismissal of psychosomatic illness, in a context where we've known hypochondria and Munchausen's to be real for a very long time, to be quite strange and to stand in sharp contrast with the typical evidentiary standards of this blog.
I didn't feel psychosomatic illness was "dismissed" by Scott. I thought it was considered quite thoughtfully - sort of 'Western medicine doesn't have much time for it, but for it's sufferers, it's just as real and experientally painful (if not more..) than physically based illness'
Western medicine is in fact forced to spend far, far too much time on it, when those resources could be vastly better invested in people who have tangible diseases they can't afford to get care for.
I find that an interesting comment. If, for hypothetical purposes (I remain unconvinced), some post-viral conditions are psychosomatic but cause suffering are they not worth medical attention?
Would you make, for example, a similar argument for depression? “This person has nothing to be sad about! We should invest our resources in something more tangible!”
What!!?!? I’m shocked you of all people is being so dismissive of mental health concerns. Mental illness is just as real as any other illness and in many cases just as debilities. As you of course are intimately familiar.
As an example, some percentage of debilitating lower back pain is psychosomatic. What that means is there is no damage to the back but in the brain the neurons are firing as if there is pain. It’s just not based on a nerve signal from the lower back. But in terms of human misery, if the signal is real or the brain is manifesting a false signal, the patient is equally debilitated.
This is the exact point: if it's mental illness, it's mental illness and must be understood and treated that way. By jumping immediately to the assumption that it is mental illness you're assuming precisely the thing that Long Covid advocates think you shouldn't assume.
But at this point we don’t know. We need to investigate both possibilities. To use my example, we need to be open to the possibility that there is a back or nerve disease process that we haven’t yet identified. And keep open the idea that the disease process is actually occurring in the brain.
Ed Yong explains very well why it makes sense to think long Covid is proably not a mental illness. "One of the biggest misconceptions about long COVID is that it is entirely new. The SARS-CoV-2 coronavirus may have emerged in 2019, but many infections can lead to similar long-term symptoms. Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS). Although long COVID isn’t identical to any of them, the overlaps are substantial. “There are likely several things unique to COVID-19, but we’re not starting from scratch,” McCorkell told me."
The commonalities with those chronic and mysterious diagnoses are exactly what many people are pointing to as highly suggestive that many “Long COVID” cases are mental illness. Because it seems very likely that those things are also mental illness (note: not hypochondria).
I think we underestimate the power of psychosomatic responses. A few years ago, I was listening to an episode of Dan Carlin's Hardcore History about the history of public torture (https://www.dancarlin.com/product/hardcore-history-61-blitz-painfotainment/). One fascinating point he made was there's apparently no evidence that people would report vomiting or other illness at the sight of torture/gore. Compare this with modern sentiments, where many people faint or vomit at the sight of blood.
I'm not confident in this, because it's difficult to prove a negative from hundreds of years ago, but if true it has fascinating implications. I've never before heard of a psychosomatic reaction that is generally thought to be involuntary (such as vomiting at the sight of torture) to be downstream of cultural cues. How many more such 'involuntary' responses are externally influenced?
I think there's sane intellectual ground between mind-over-matter extremism and the hypothesis that all behavior is pre-programmed and involuntary.
From hanging around in some unseemly internet haunts, I can confirm that plenty of resources are absolutely wasted on psychosomatic illnesses and Munchausens (“munchies”). I don’t know the scale of it, but it absolutely happens. And it’s reasonable to question if it really is “just as real”, and it certainly is not for a subset of people who abuse the medical system, although I dunno for CFS broadly.
"They point out that long COVID was first thrust into the public consciousness in surveys run by Body Politic, who self-describe as “a queer feminist wellness collective merging the personal and the political”. I agree this is a weird source for something to come from, but Hans Asperger was a Nazi and I still use his diagnosis, so I probably have to accept these people’s as well."
Well, "Asperger's syndrome" was a diagnosis in which broadly the same group of children Kanner et al described were described in somewhat more optimistic terms for, ahem, 'sociocultural reasons', which has been deprecated for the better part of a decade, and for which studies of adults didn't find meaningful differences between it and similar cases of high-functioning autism with speech delay, so probably there's a good question about whether you should be.
(In practice, I think Asperger's was a bit different to HFA, but in that it was getting at a more heterogeneous cluster of neurodivergent children and might even have been more comparable to PDD-NOS on that point -- "schizotypal disorder of childhood" pretty much stopped being a diagnosis when AS got popular, for instance.)
This discussion omits one important data point: long term effects from the original SARS virus. I’ve long believed this is a major piece missing from the Covid discourse. The original SARS virus has a ~10% fatality rate, but it also has well documented long term debilitating symptoms. My recollection is that something like 30% of SARS survivors were permanently disabled (I thought I’d seen this on Wikipedia, but the current article doesn’t quote a percentage). From that perspective, it’s quite natural to assume that Covid will also have long term debilitating effects, perhaps at about three times the CFR. This is one of the main points that convinced me of the severity of Covid back in March 2020, and I wish it had become more widely known at the time.
This is subject to reference class tennis though. SARS-COV2 has an IFR roughly halfway between that of SARS-CoV1 and seasonal flu. Why should it's `long' version be closer to one than the other? Just because of the similarity in name? SARS-COV1 also had antibody driven enhancement for the vaccine candidates IIRC, which SARS-COV2 definitely doesn't...
I don't have any medical expertise, but I don't understand why this falls under reference class tennis. What better comparison is there? SARS-CoV1 is the most closely related disease to SARS-CoV2 (and MERS exhibits similar longterm behavior). It doesn't seem like we've uncovered the mechanisms that cause longterm symptoms, but for an initial order of magnitude estimate what better reference was there? The studies Scott discusses all seem to suggest ~3x IFR as a reasonable estimate for debilitating longterm symptoms, most likely within a factor of ten of the truth.
Why is SARS-Cov1 a closer parallel than seasonal flu? Just because it has a similar name? In other respects (IFR, contagiousness, presymptomatic transmission, lack of ADE) SARS-Cov-2 seems not at all like SARS-Cov-1 or MERS.
3x IFR is believable, but (a) that leaves us with 1.8%, not 30%, (b) should it be 3x age adjusted IFR? If so, then the risk to Scott is pretty much negligible.
I should clarify that when I say 3x IFR for debilitating longterm symptoms, I'm referring to permanent disabilities and not minor aches and pains.
Also, I think it's fair to expect that closely related diseases that attack the same systems in the human body in mechanistically similar ways and exhibit similar short term symptoms, albeit with different distributions of severity, are useful references for trying to understand possible long term progression of symptoms. More importantly, they should have been considered this from the very start of the pandemic! SARS-CoV-1, MERS and SARS-CoV-2 all bind to the ACE2 receptor, which is not a feature of influenza.
Regarding ADE, do we have reason to believe this is what leads to longterm symptoms? It seems like you've settled on "reasons they are different" to rule out the comparison, but your evidence is plausibly orthogonal to longterm progression of disease. I think the shared mechanism plus the broad similarities in symptoms are far more important for building a reference class.
We'll have to agree to disagree. I don't think either SARS or MERS are an appropriate reference class (nor is flu); COVID-19 appears to be sui generis. However your claim of 3x IFR for debilitating longterm symptoms seems plausible, with the caveat that I expect it should be age adjusted IFR. This seems much more likely than a step function which turns on at age 18 and has no further age dependence. If so, then IFR for a man in his mid 30s (Scott) is about 0.05%, so the risk of debilitating long COVID would be 0.15% - more than an order of magnitude lower than what you would get using age unadjusted figures. Also it seems weird to me that the effect of vaccination should be so much more muted on frequency of long COVID than on death rate, and I wonder if this is just an artifact of age stratification in vaccination rate (assuming debilitating long COVID rate is also strongly age dependent).
Maybe you will say `SARS-1 and MERS are the right reference class because those are also coronaviruses!' But there are also coronaviruses that cause common cold and have no `long' version at all. Why are those not the right reference class? (I am not arguing that long COVID is not real, I am arguing that reference class forecasting based on using SARS-1 as the reference class is deeply suspect and most likely wrong).
I think it would be interesting to know how often people specifically get any particular viral infection that gets classified as "common cold". Different studies have identified about a dozen or so different viruses in common cold cases, but I don't think they ever find precisely the same set, and I think they find somewhat different prevalences.
But if four coronaviruses together cause 15% of common colds, as one study I recall claims, then I guess the average person has at least one of these coronaviruses each year, and therefore probably a particular coronavirus repeatedly every fiveish years?
"After the first SARS epidemic, which sickened 8,000 people worldwide in 2002-2003, one study found that 27 percent of 369 survivors of that variety of coronavirus met the criteria for chronic fatigue syndrome several years later."
I remember Sarah Constantin had some Twitter thread about why chronic Lyme might actually be a real thing, I can no longer find it though I'm afraid...
The Australian study "Post-infective and chronic fatigue syndromes precipitated by viral
and non-viral pathogens: prospective cohort study" is not that useful for comparison, though.
We have to take into account the myriad of negative health effects of living under lockdown/in a permanent state of emergency?
We would have to compare "Long Covid" to other postviral syndroms as they occur DURING this pandemic. Not how bad they are in 2006. Who cares about 2006?!
My strong prior would be that ALL chronic conditions are worse now. That people's prodromes become syndromes faster, that subclinical illnesses become clinical.
So during the pandemic the health of the non-infected and infected should be considered "compromised" to varying degrees.
Does anyone account for this and actually do the relevant comparisons, assuming the data is available. Or uses a model that accounts for this?
Without that, I have low priors, that any of the discussion on Long Covid is worth taking seriously.
Many of these studies are indeed looking at contemporary control groups, and measuring difference in long-term symptoms between people living in the UK in 2020 with a positive covid test and people living in the UK in 2020 without a positive covid test, or something similar.
My wife was having health problems that no one seemed to be able to figure out and she started self diagnosing as Chronic Lyme. I pushed back after tests and one visit to a Lyme literate doctor alerted me to probable chicanery. It took a trip to the ER to realize she actually had a staph infection.
In this case, the word psychosomatic from her PCP was dramatically unhelpful. She had a real problem, just nobody was able to figure out what it was.
The chart with the 1 in 250,000 chance of having your house hit by an airplane seems likely to not be reputable. The source appears to be a 1997 revised 2nd edition of a self-published book called "Up to Your Armpits in Alligators? How to Sort Out What Risks Are Worth Worrying About!" by John Paling. I can't find any evidence the book is still in print or a review of it anywhere except a very old article in a paygated Wiley journal. Paling's bio is here: https://www.riskcomm.com/pdfdocs/JPfullbio2.pdf. It appears he was a zoology lecturer for a while at Oxford, then became a documentary filmmaker for 23 years, then founded something called the Risk Communication Institute in Gainesville, FL, and that was when he wrote the book.
I'm not going to say he isn't reputable or anything. I have no idea. But this is just a rabbit hole game of telephone being played with no way to get at the actual citation, unless you're going to buy the book to find out where he got the number from. It doesn't pass a basic smell test, though. Obviously, nowhere near 1 in 250,000 units of land surface area on the earth contain a house, and airplanes spend a lot of time not over land. The chance that, when they crash, it might happen over a city goes up a lot given most flight paths are between airports and most airports are at least near a city. But most airports are not near the densest part of a city, many have coastal or rural approach routes, flight paths intentionally take those routes to reduce the risk that they might actually crash over populated areas.
This reeks of a guy who probably cherry picked a year where some spectacular crash over a populated area occurred, saw in that instance 1 in 250,000 houses where it happened were hit with debris, and called it a day. It calls into question everything else in that table, too, because the entire graphic is just pulled from his book.
It also doesn't make sense that everything else in the same graphic is explicitly given as a period risk. If they were all 1 year, you might reasonably conclude this was also supposed to be the risk this will happen in the next year. Except the death by traffic accident is over a 50-year period. This also doesn't make for a useful comparison. Why is the chart presented in a ranked order when the top-ranked item is the risk of something happening over 50 years and everything else presented as the risk over 1 year? The probability of anything at all happening in 50 years is higher than the chance of it happening in 1 year. If you assume the risk of each of those is constant per year, then both #2 and #3 on that list have a greater chance of occurring over 50 years than #1.
The study that concerned me the most was this recent Lancet article on cognitive deficits after COVID. Not a perfect study by any means (they don't have true longitudinal data), but they are suggesting persistent IQ declines (no indication of recovery 9 months later):
1 point loss for respiratory symptoms at home without assistance
2 point loss for respiratory symptoms at home with medical assistance
In terms of psychology I was interested to note all the various coping mechanism people utilized during the pandemic. One of the bigger ones was discounting any bad outcome short of death.
One thing I wonder about self-reported long-lasting symptoms: a healthy baseline may include some amount of negative symptoms, e.g. you still cough/sneeze on occasion, you are still fatigued on occasion, etc. Yet you consider yourself healthy. Then you get COVID and all these symptoms skyrocket and you are clearly sick. Now your symptoms slowly decrease day by day as you recover. *If they decrease slowly enough, might you never notice you've recovered?* Each day you still feel approximately the same as the day before, and even when you get back to your healthy baseline the symptoms aren't 100% *gone*, so unless you are good at comparing your state to that of a few months ago (which seems hard to me, unless you actually took notes on how often you were tired/coughed/etc in the past), you might now attribute your baseline fatigue etc to lingering COVID symptoms rather than healthy normal?
I had COVID back in December and had trouble with determining when it was "gone" for this reason. The only really big symptom I had was how tired I was. I would take multiple 2 hour naps a day and still sleep 9-10 hours at night. What I didn't notice until I started getting better was that I was also cognitively impaired (not major, I actually worked most of the days, but I had trouble remembering things and being creative). I didn't notice the brain fog feeling until I would wake up the next day and notice a difference, thinking it had cleared up. Then I would wake up the next day and have that feeling again, like my fog was lifting over a period of time. I've felt fine for many months, but really couldn't have ever given you a definitive "and now I don't have long COVID anymore" date.
I was wondering precisely this in 2019, about how often I actually get colds, and how long they actually tend to last for me (it seems like I've often had three weeks of coughing). So in January 2020, I started a spreadsheet tracking any daily symptoms. I did in fact have a moderately bad cold at the beginning of January, and then one with a day or so of fever and other significant symptoms while attending a conference in late February (I was definitely feeling self-conscious about it then!). But then my dataset runs out, since I haven't been aware of any symptoms due to infection, other than food poisoning once a couple months ago.
However, the spreadsheet did turn out to be helpful in identifying what times of year I have allergies in Texas.
Still, the point relevant to what you're saying, is that many people do have several weeks of coughing and other mild symptoms after a cold, but still notice some day that their symptoms are finally gone, even if they don't quite remember what day it was.
I shared this article in a group chat and the preview image was a photograph of a bat. Not really sure where it comes from since it's not in the post and could possibly influence a potential reader to the quality of the post
Second, you say that the chance of long covid after a mild, non-hostpital case is about 20%. By “mild” do you mean showing at least some symptoms? Or do you include non-symptomatic cases as well?
What is the age dependence of (the debilitating version of) long COVID? Is it in fixed proportion to age adjusted IFR? i.e. can one take a flat 3X age adjusted IFR as your risk of serious long COVID? If so, then your age adjusted IFR (pre-vaccine) is about 0.05%, and your long COVID risk is about 0.15%, assuming you are in your mid thirties. This is much lower than you would get if you used age averaged figures.
It also seems weird to me that the effect of vaccination on long COVID risk should be so much more muted than the effect on death risk. I wonder if this could be an artifact of age stratification of vaccination rates (assuming risk of long COVID is also strongly age dependent).
This large UK study into long Covid in children, not yet published but reported yesterday by BBC https://www.bbc.co.uk/news/health-58410584 case-controls for reported symptoms to suggest 'between 2% and 14% still had symptoms caused by Covid 15 weeks later'... look forward to the paper when published, and declaration of interest, I work for the funder NIHR (though not in this area).
I had CFS/ME in my 20s after being in the hospital with a virus, It lasted years, but I think I know what happened. TLDR: started a physical problem, the real problem trained my brain, and caused prediction errors that outlasted the actual problem. I think the same thing often happens with other chronic pain conditions.
1. Not a contagious mind virus: First I'm male in my 40s, when this happened I was an undergrad, and I had no idea what it was, people didn't talk about stuff like this in the 90s, and the internet was a much smaller thing, so no one gave me the idea to be sick.
2. Like many woman, I have an auto-immune disease, specifically b12 and iron anemia, rare in 20 year old men. which I had but didn't know about then, but I now require treatment for monthly. (I eat a ton of meat,FYI, but my body attacks cells that produce enzymes needed to absorb it.)
3. I got better after about 2 years, but I didn't know I was better. I was used to feeling tired and achy. so my expectation is I would continue to feel tired and achy. I was making a prediction, it was wrong, and my brain was making the prediction come true.
I think the understanding that people have been trained to feel pain and can be trained to be pain free is helpful and non-moralizing. The initial pain and discomfort is real, the brain learns to expect it, and it becomes a very normal cognitive bias, that exists because our brains rock and are good a learning and making predictions.
One thing that always bothers me about these percent results, eg
<< And even though the study started with 5000 children, so few of them got COVID, and so few of those got long COVID, that the 2.9% turns out to be about five kids. I don’t really want to update too much based on five kids >>
is that you can actually estimate exactly how much to update. But there's not often much discussion on uncertainty in medicine papers.
The question is binary (either they have it or not). The 2.9% are 5 - so we have p*N=5 out of N=170 in a binomial distribution. The expected probability p*N of the event is 2.9%, and uncertainty on that probability sqrt(p*(1-p)/N) is around 1.3%. Using the rule-of-thumb hack that two-deviations correspond to pvalue < 0.05, you end up being able to say with "some confidence" that it's between 0.3% - 5.5%.
That was very back-of-the-envelope, and now we'd have to apply Bayes with a prior. But the short no-calculus story is: the interval is very wide. If you have any prior about that probability with a reasonable confidence interval (eg by what we know from other diseases) you should not change it much.
To illustrate the point, say your prior is 0.95%-1.05% (at two sigma level like above). Another back-of-the-envelope calculation then updates it to roughly 1.16% - 1.20%. I.e. a bit higher but not much. This was computed with a gamma prior for the binomial - because it's easy (see https://en.wikipedia.org/wiki/Conjugate_prior#Table_of_conjugate_distributions). It's actually not very good for modelling small probabilities with large-ish uncertainties, and as a result updates too fast away from zero. A proper discussion would end up giving an even more conservative estimate for the update.
> Unfortunately, having a symptom for psychosomatic reasons sucks just as much as having it for any other reason.
Psychosomatic conditions seem like ripe targets for psychedelic therapy.
I was also interested in whether anyone with CFS had tried MDMA or something. Couldn't find any reliable info from searching online.
> Flu is as common as COVID, but nobody really talks about it having a significant postviral syndrome so probably it’s not that bad.
Or maybe nobody had made this connection. I think COVID has been revealing a lot of long-term associations, like long COVID, that people hadn't previously considered.
I think there are a lot of things about flu that we've finally had confirmed by covid (probably aerosol transmission is the big one, but maybe also asymptomatic transmission). However, I do think that a common postviral syndrome would have been noticed, given that we figured it out for a really rare virus like Epstein-Barr.
I expect the rarity of EB to make it easier to diagnose postviral syndrome, not harder. Any symptoms that follow or persist a diagnosis would be immediately suspect. Most people who catch the yearly flu probably don't even know they had it. It's a signal:noise ratio problem.
>>Of vaccinated people who got symptomatic COVID, about a third ended up with Long COVID symptoms, the same rate as in unvaccinated people.
One would expect vaccinated people (in the US at least) to belong to a group that is more prone to health anxiety and especially COVID anxiety than un-vaccinated people. There is so much correlation between vaccination and beliefs about the seriousness of the pandemic that that seems like a major possible confounder.
I was vaccinated, and seemed to end up with some sort of long-term fatigue after the vaccination. I've been repeatedly tested for COVID (including an antibody test shortly before the first vaccine shot) and always showed up negative. I thought it was just vaccine side effects, but my fitness tracker shows significantly decreased performance which remained low going on 6 months now, although I still feel just as tired after each workout.
I wouldn't describe myself as prone to health anxiety or COVID anxiety, just unusually unafraid of experimental medicine and married to someone with very strong COVID anxiety. Maybe my self-perception is incorrect.
I've also been recently found to be deficient in Vitamin D. Maybe the lockdown got to me. Maybe the lack of sunlight in hospitals is the entire cause of post-viral fatigue. Maybe someone smarter than me ruled this out already, but it seems suspicious to me.
Lockdown has almost certainly reduced vitamin D intake for many people, and while I wouldn't care to speculate about hospitals and sunlight, you personally should probably go sit in the yard for a few hours and soak up some autumn sun, along with taking some supplements too.
I'm wondering if anyone has seen research on people having a certain tendency toward this sort of effect? Ie, if you’ve had a post viral syndrome before, are you more likely to get long covid?
Personal anecdote:
As a teen I returned from a trip to Africa with mild but persistent symptoms. Fatigue, headaches, nausea - all of which intensified with any exercise. No acute illness but the ultimate conclusion of the doctors was that I picked up a virus that wasn’t that bad (hence no acute period of illness), but was unusual enough to my immune system (being from another continent) that it freaked out. I was sick about a year.
I am a woman and have vitiligo, an autoimmune disease.
I THINK I had covid early March 2020 but was never tested. It presented as a mild cold but I had fatigue for about three weeks afterwards.
I'm someone who was pretty strongly in the "Long Covid is almost certainly not a real thing" camp prior to reading this article. Now I'm in this, "I still think Long Covid is likely not a real thing, albeit with some exceptions camp" now.
First - Yes, the people with lung scarring and post-ICU syndrome and maybe some of the people suffering the misunderstood post-viral symptoms are truly suffering, but they're not suffering from Long Covid. They're suffering from lung scarring and post-ICU syndrome and maybe some of the people suffering the misunderstood post-viral symptoms. It doesn't make sense to classify these individuals as having "Long Covid."
This sounds like a semantic point, but I really don't agree that it is. There hasn't been a disease that's gotten this much public focus since... the Spanish flu? Definitely not one since our world got connected like this. This is the largest story of the past decade, and large stories like this attract hangers-on.
Maybe I'm cynical, but I think that if we accept that there is a vague condition like "Long Covid" out there that has amorphous symptoms, no ability to test and no ability to cure it, we're going to get hordes of people who (for whatever reason) start to glom onto it.
It is because we tend to talk about symptoms more than mechanistic action. Plus long covid rolls off the tongue better than lung scarring/post icu syndrome/lymphopenia/increased il-2r cytokines etc.
I remember discussion of Long COVID that began way too early in the pandemic for there to have been much analysis of the few cases that could even have had it. I think it's often a significant conflating of multiple things, and as you mention, some have a clear alternate cause than some interaction of COVID in your system. Spending 4-6 weeks on a ventilator, as the early "Long COVID" patients might have been, has obvious reasons to create a long term health problem.
It really bothered me that by May 2020 Long COVID was being talked about like a real thing we needed to be worried about, despite now 15 months later we're still not sure it's even real. Long COVID went in my brain as "this is potential fear-mongering, because there's no way we know the 6 month symptoms of the virus already, let alone indefinite/permanent."
I do know one person who got COVID and is still sick from it about a year later. What sounds like has happened with her is that she got so sick that several things broke down in her body, which means she now has organ failure issues. Of course that isn't going to go away quickly, but I'm quite hesitant to say that it has anything to do with lingering effects of COVID itself.
"There hasn't been a disease that's gotten this much public focus since... the Spanish flu?" Polio got a lot of attention over the years, and when the vaccines came out in the late 50s and early 60s, people wouldn't shut up about them.
This feels like a semantic distinction - "we can trace the long term symptoms to specific intermediary causes that themselves were caused by a covid infection"; what a layperson cares about is "will a Covid infection possibly make me sick for many months or even years?", not whether the mechanism is novel vs something "mundane" like scarring.
There are some important differences though. If you are healthy prior to getting COVID, it matters a lot if the people with long term symptoms are more like very old flu patients or getting ICU syndrome, instead of COVID itself hanging on.
1. I'm pretty sure that in the last week I've read at least a half dozen articles in reputable news outlets that featured people who's covid infection was incredibly minor and are now suffering a vague series of symptoms. The articles all pushed the theory that something about COVID was creating these lingering symptoms; that's the same line being pushed by Long COVID support groups who are gaining public presence if not power.
2. This just kinda sounds like celiac disease to me. Sure, it is a real thing that really hurts a few people with a specific allergy, but the symptoms are vague enough that anyone who wants (or anyone with psychosomatic tendencies) starts also avoiding gluten.
This piece made me want to read a lot more about psychosomatic illness (ideally from Scott, but open to suggestions if people know of good resources here). In particular I'd like to see someone explain how psychosomatic illness differs from mental illness. My first instinct is to say that both originate in the brain, but mental illness expresses itself in "mental" symptoms (changes in mood, hallucinations etc.) and psychosomatic illness expresses itself in "physical" symptoms. But of course mental illness has physical manifestations as well (e.g. depressed people can have reduced sense of taste/smell). Is psychosomatic illness best understood as a subset of mental illness, or a distinct category?
Related question: when contrasting psychosomatic illness with non-psychosomatic illness, what's the term for "non-psychosomatic"? My first instinct was to use the word "real" but that implies psychosomatic == fake which isn't correct. Scott uses "organic" above but that feels weird too (not sure how psychosomatic illnesses are "not organic").
I may pick up Ross Douthat's "The Deep Places" which deals with his experience with Chronic Lyme. Seems like it's more of a meditation on the nature of chronic/psychosomatic illness than a medical perspective on the issue but it may be illuminating here.
"Organic" is the traditional term in medicine, for a condition caused by a disorder in some bodily organ other than the brain. Whether this is better or worse than the use of "organic" in food labeling is not clear to me. Neither seems as clear-cut as the chemists' use involving hydrocarbons or carbohydrates or whatever.
Hey Scott, can you give us an update on how your workouts are going? (I'm not a paying subscriber so if that's paying-folks-only information, by all means ignore this.)
I have some rather personal data points. Putting the conclusion first: I find long COVID to be hard to study, because I maybe had COVID, and maybe long COVID. However the symptoms are conflated with other things. If I were asked if I had long COVID, I could not give a survey a useful "yes" or "no" answer.
I had Mono in 2018. It was bad enough that I took a trip to the ER, and got meds for reducing pain and swelling. Their testing confirmed I had it, days after a previous misdiagnosis of strep throat from inconclusive tests. After my main recovery, I had at least half a year of fatigue. I could do my desk job, but would need to sleep shortly after getting home. It seemed to slowly fade, and was entirely gone somewhere between 9 months and a year later.
I got sick from something at the start of March 2020. (following what were likely colds in December and February...it was a rough few months.) COVID tests were unobtainable. I don't recall breathing problems or loss of smell but it was something more severe than a normal cold, especially the fatigue. My city at that point was one of the few in the US with confirmed community spread. My primary care physician denied my request for an antibody test - indicating that it was company policy that the tests weren't specific nor useful enough. Overall I put the probability that I had COVID as undecidable.
I started lockdown early because of it, so I didn't notice for quite awhile that I had persistent fatigue. I mentioned mono because the new fatigue was exactly like the fatigue I got from mono. However since then I have identified: depression (medical diagnosis), burnout (self diagnosis), and stress induced physical problems (mixture of both, the strength of the symptoms at their peak was eye opening, and I will never have a shred of doubt again that such problems can be very real). I also commonly have headaches caused by neck stiffness caused by who knows what, likely unrelated to any potential COVID. All of this has combined and fed into one another to be one giant bundle of misery, but a combination of medication, help from family, quitting my job, and time have mostly abated the symptoms. The March illness was the kickoff point, though.
Oh, forgot to mention: I also clearly had brain fog or some form of mental difficulty after the March illness; I had lots of difficulty returning to work, but a few weeks after the illness ended I was able to resume enough to get some things done, but problems were off and on for one reason or another until I quit.
Did you ever manage to get an antibody test? In May 2020 I found a local medical center that was doing $20 antibody tests, and mine unfortunately came back negative, confirming that whatever I had in late February while traveling wasn't covid. (I had a fever, but the cough was clearly "wet", and I always heard that covid was "dry", though I don't even really know what that means.)
What exactly is psychosomatic? When I was in kindergarten I suffered from severe eczema, the outbreaks started when I started school. A family member - a professional nurse - suggested to my mother that it was psychosomatic. The nurse based her argument/diagnosis on the fact that the eczema started when I went to school, and subsided during the school holidays, and thus concluded that the eczema was a stress reaction. Years later, when I was 25, I learned after testing by an ENT specialist, that I am severely allergic to dust mites. This explained my eczema, as follows: During my kindergarten years the teachers loved to have the children gather around in a circle, sitting on the floor, for sing song -and story time sessions. Though the floors were swept daily, they were not vacuum cleaned. This was South Africa in 1961 after all. Vacuum cleaners were a rarity in those days, especially in rural schools. I think its advisable to be skeptical of any diagnosis that categorizes a physical condition as psychosomatic.
Are those control group numbers for mental health for Amin-Chowdhury et al. normal? They seem rather high.
Perhaps the long mental health problems are from 'Pandemic Exists', rather than from anything particular to COVID. This might also be an interpretation of the increase in mental health problems after the Spanish flu - were former flu patients more likely to be admitted to mental hospitals or was this increase from the entire population?
Scott: what do you see as the endgame for COVID? I believe (courtesy Zvi) that the UK was at 90% seropositivity among its adult population in June, and then it had one spike (which much have left pretty much the entire adult population either vaccinated or recovered), and now it is having another. I am thus increasingly coming to the view that herd immunity is impossible to achieve even with 100% vaccination. So where is the cavalry? Do you think pediatric immunizations (when they finally become available) will be enough to stem the tide? (and what about the animal reservoirs - deer, cats etc?). Or is it just a choice between maintaining extreme precautions (isolation whenever possible, N95 when not) for the rest of your life, or giving up and getting on with life, trusting to the vaccine to do its job in protecting you? What is the plausible argument that says there is a better choice than this available?
And if the choice is indeed between `living like a hermit for the rest of your life' and `giving up and trusting in the vaccine,' and furthermore, if long COVID is at least sometimes psychosomatic, then arguably publicity about long COVID is an infohazard liable to boost your risk of developing long COVID.
it would be interesting if long COVID turned out to at least partially be an infohazard, since I'm not really aware of any others that can affect the general public. Add another entry to the SCP index?
On the more serious note, I think we have a chance of reaching a better endgame if the COVID variants can infect people faster than they mutate. My understanding is that most of these later waves are being driven by new variants, but those should eventually stop popping up (or at least slow down their appearances) as other countries get higher immunity rates. But I don't think there's much we can do right now if you're in a highly vaccinated country. My policy is to give up most of the time, and make an effort when hospitals are near overload.
On the other hand, talking publicly about how long COVID is likely to be psychosomatic is a form of vaccination against the infohazard, so maybe we should be doing that instead.
Everything suggests that more doses of vaccine lead to stronger protection, and infection+vaccine is stronger than either alone. I believe the 90% UK figure included seropositivity from vaccines and seropositivity from infections, but couldn't tell the difference between one or the other or both or multiple rounds of both. That leaves room for some point at which enough people have been vaccinated enough times and infected enough times that it stops having waves even as big as flu (if immunity lasts better than flu immunity seems to).
There’s an interesting treatment in Therapeutic Plasma Exchange (the same technique used in recent mouse aging-rejuvenation studies (which amounts to mechanically filtering out the immune system and any accumulated damage to the blood)) which has shown promise in the treatment of long covid: https://www.youtube.com/watch?v=nnv0fcr_Hd4&t=381s
If Long-COVID is caused by the presence of something in the blood plasma (like a “rogue antibody”), then I hope these studies will help us get to the bottom of it.
"For the disease profile analysis, 3825 users from cases 1 were included in cases 3 and 906 users from cases 2 were included in cases 4. Vaccination (compared with no vaccination) was associated with reduced odds of hospitalisation or having more than five symptoms in the first week of illness following the first or second dose, and long-duration (≥28 days) symptoms following the second dose. Almost all symptoms were reported less frequently in infected vaccinated individuals than in infected unvaccinated individuals, and vaccinated participants were more likely to be completely asymptomatic, especially if they were 60 years or older."
For those group identifiers, cases 1 and 2 are people who were partially vaxxed or fully vaxxed, but then got breakthrough infections. "Controls 1 and controls 2 were matched (1:1) with cases 1 and cases 2, respectively, by the date of the post-vaccination test, health-care worker status, and sex. In the disease profile analysis, we sub-selected participants from cases 1 and cases 2 who had used the app for at least 14 consecutive days after testing positive for SARS-CoV-2 (cases 3 and cases 4, respectively). Controls 3 and controls 4 were unvaccinated participants reporting a positive SARS-CoV-2 test who had used the app for at least 14 consecutive days after the test, and were matched (1:1) with cases 3 and 4, respectively, by the date of the positive test, health-care worker status, sex, body-mass index (BMI), and age."
So if I'm understanding right, they seem to have a quite large comparison of breakthrough infections, against unvaxxed infections, and they're finding that long-lasting symptoms are significantly less likely in the vaxxed-but-still-infected group. The numbers seem large enough to have statistical power.
I had an extremely bad bout with flu turned into bronchitis turned into pneumonia when I was 20. I was stupid and arrogant with the illusion of invincibility that comes with youth. I figured I'd just eventually get better and made no specific efforts to do anything about it. I stayed out late, kept clubbing, kept drinking. I ended up remaining sick for over 6 months until I finally had to go to the hospital and get blasted with high-dose antibiotics and corticosteroids after some nebulizer treatments to clear up my lungs. After the symptoms finally went away, I had enough of an immune system drag that I caught another flu just two weeks later. That one wasn't quite as bad.
But it took a really long time to fully recover. I'm not just talking about persistent fatigue. I actually don't remember anything like that. The actual problem is I caught another flu, and not just flu but ended up with secondary bronchitis, every single flu season like clockwork. It made no difference if I got a vaccine or not. Every single flu season I'd catch flu, and every single I caught flu I'd get bronchitis. I also developed allergic asthma responses to grass pollen.
Until I didn't any more. Since about 32 or so, I haven't had bronchitis a single time. No more asthmatic allergy responses.
I think something like "long flu" is a perfectly apt way of describing this. I had a drastically weakened respiratory and immune system for over a decade, but it wasn't actually permanent. At least, I don't think it was. I have no idea if I have lung scarring or reduced capacity compared to before, but I don't really care. It's the more explicit symptoms that kept killing me, and they've been gone a while now.
I'm wondering if you may have linked the wrong article for "weird x-rays" by mistake? I was expecting an article about x-rays and lung scarring, but it links to "What Is the Evidence for Post-COVID Fatigue?".
I'm really annoyed that the BMJ risks table doesn't directly cite any sources and doesn't give any indication of who the stats apply to. I guess we can assume it's about the US? And they all specify a timeframe (which is good) except the most interesting one, the crashing airplane. I guess that one is easy to guess too (it's about lifetime risk... I assume) but they shouldn't leave it up to readers to guess the context, or to guess which if any of the article's five references back up the numbers in the table.
I wrote this in my earlier comment, but it's from a book called "Up to Your Armpits in Alligators? : How to Sort Out What Risks Are Worth Worrying About!" Specifically, the 2nd revised edition released in 1997, but the table is probably the same as from the original 1994 publication. It's written by John Paling, an Oxford zoology lecturer turned documentary filmmaker for National Geographic turned risk consultant. He wrote it at the time he was making the transition from National Geographic to opening up the Risk Communication Institute in Florida, so probably US centric, but the book was self-published, seems to be out-of-print, and you'd need to find a copy somewhere or email him or something to figure out what the *actual* source of the information is.
Frankly, BMJ should not have used it without citing the real source.
Agree that table is annoying. But it would be really nice to see something similar that was well done, ranking actual risks on a per year basis. I expect motor vehicle accidents to be #1, but how does shark attacks compare to bathtub drownings?
A comment about the difficulty of getting a diagnosis if the pain is the most obvious symptom.
****quoted in full****
*Many have been told by medical professionals that they’re just having anxiety or making up their symptoms. Even now, “it happens more often than not,” Lisa McCorkell of the Patient-Led Research Collaborative told me.*
Somebody needs to do a study on how many people actually make up their symptoms to get attention from doctors. Because according to doctors, it's an epidemic of extreme proportions, a plague ravaging health care services around the world, and it's taking up enormous quantities of their time that would better be spent elsewhere.
Let's ignore for a moment how self-serving that sentiment is; doctors are convinced that people will fake a huge range of symptoms just to be prodded for a few minutes in an exam room. I'm not sure what they think is so outrageously wonderful about that experience that people will commit to acting miserable to get in there, but they're pretty certain that a vast swath of the population is malingering performatively to just bask in their presence.
On the other hand, if you go to any message board dedicated to any chronic disease, one of the most popular conversation is 'how long did it take to get your diagnosis.' Patients trade stories of how often their symptoms were attributed to attention-seeking and malingering until they were able to convince the right doctor to do the right test, at which point they got a diagnosis. And that's for diseases that have definitive tests available; I can't imagine how bad it is for diseases which are diagnosed through exclusion.
I walked around with a painful hernia for four years. I'd been diagnosed with Crohn's, and every doctor I went to said the pain was Crohn's-related, and that there was nothing they could do about it, and I was in remission so it couldn't be as bad as I was saying. I was told by one GI doc that the pain I was feeling couldn't be related to the hernia that showed up on my CT scan. That same doctor put a diagnosis of hypochondriasis on my chart. Over a year later, a different gastroenterologist noted that my pain was in the inguinal area, and had I considered that it might be a hernia?
And the test for a hernia is, you know, 'turn your head and cough.' Once a general surgeon did that test, he had me set up for surgery two days later.
The post-surgical pain from the hernia was less than the pain from the hernia itself within 24 hours.
When huge quantities of patients have to go through an ordeal to get relatively common, run of the mill conditions diagnosed, there's something deeply broken about the medical system. I keep thinking about every doctor I saw during those years I was experiencing enormous pain from an easily curable condition, and how they're all still convinced I was making shit up, and I'm struck by the fact that there's no way for them to learn from these mistakes. Doctors have no idea how many of their diagnoses were later revised or contradicted by other doctors, so they have no way to learn which patients weren't desperate for their attention, but for medical attention.
And now that we're seeing a disease that's difficult to diagnose spreading in this new plague, the condescending, dehumanizing, contemptuous chant of 'it's all in your head, it's anxiety, it's depression, go away' (never accompanied by a psych referral, strangely), is ringing out loud and clear. And until we figure out objective ways to measure things like pain and fatigue, they're going to keep dismissing genuinely sick people as attention-seeking malingerers unless we find a way to let them learn from their mistakes.
Yeah, 'all in your head'/'anxiety' is a frustrating bias. I've had daytime tiredness for decades (CPAP eventually helped) and for some years a weird "discomfort" in my thighs. Well, multiple doctors prescribed anxiety medication (occasionally SSRIs) even though I made it clear that I didn't have anxiety. They didn't SAY it was all in my head, but they acted like it. Of course, those prescriptions did nothing for my symptoms... luckily the leg thing mostly went away eventually.
And I know I'm one of the lucky ones (as my symptoms weren't debilitating).
Great post, but it's not so convincing in addressing the concern that seropositive and seronegative people have the SAME long-term.
It wasn't just WSJ opinion; NYT ran one too, pointing out:
NYT: "One peer-reviewed study of people who reported long Covid symptoms noted that most of those who were tested for antibodies that provide evidence of a previous SARS-CoV-2 infection had negative results. The level of symptoms, moreover, was virtually the same whether the person was positive or negative for antibodies. A second study, not peer reviewed, of adults referred for long Covid management similarly reported that no Covid antibodies were found in 61 percent of them, again without differences in symptoms whether testing was positive or negative."
"I feel like some of the case-control studies above, which clearly show that seropositive people have higher rates of Long COVID than seronegative people, are pretty convincing here."
Do they? And why then do they conflict with these two other studies find no difference?
The conflict between those studies seems like a crucial question to get to the bottom of, in establishing existence/non-existence of "long Covid" beyond the obvious respiratory/smell aspects. I plan to dig into it, but thought I'd mention in case others have answers already!
I feel too much attention is paid to antibodies. I suspect that its the TCells that do the work. Some people seem to clear COVID without ever raising a significant crop of antibodies. Unfortunately, it's a lot harder to test TCell reactions, so just about nobody does it. (Or, I suppose, it could be some other, less publicized part of the immune system. But some studies have found TCells remembering that COVID/SARS should be attacked, so that's what I'm guessing.)
Hmm, interesting. But are there any studies that show "Some people seem to clear COVID without ever raising a significant crop of antibodies"? I have heard anecdotes but not sure it's at all a significant thing. And if it's not, then "antibody" still basically works as a stand-in for "previously infected".
So, I have a question about the sermon re: CFS. If most people who haven't suffered from CFS severely underestimate how bad it is, then wouldn't this tend to lead to systematic overreporting of CFS? Like, if someone feels tired all the time because they have a demanding job, 2.4 children, and don't get enough sleep, isn't it possible that they might go to their doctor complaining of "chronic fatigue"? Or if they get COVID, are later surveyed about their symptoms, and the surveyor asks about chronic fatigue, they might say "yes, I've had that", even though their actual symptoms are much milder and more treatable than CJ and Heron describe. If there's a prima facie problem with this story, I can't see it. Do the numbers for chronic fatigue rely on something better-screened than self-reports? If not, wouldn't the systematic underplaying of chronic fatigue in our society lead to some people mis-self-diagnosing regular tiredness as clinical chronic fatigue?
I must confess (as one does after a sermon), I've been guilty of underestimating how bad chronic fatigue is in the past. But my updated world model doesn't necessarily include assuming everyone has the very bad symptoms CJ and Heron are talking about just because they use the words "I have chronic fatigue". But it's also possible that I'm so eager to avoid overcorrecting that I'm undercorrecting. Are there any good estimates of the prevalence of CFS either post-COVID or just in general based on some diagnostic criteria that aren't self-reports, so I can get a handle on the actual numbers beyond "exists" or "doesn't exist"?
So, this ties into my point above that case definitions are an absolute mess when it comes to chronic fatigue vs. ME/CFS.
Many studies use the Fukuda criteria, which has been recommended for retirement as it has post-exertional malaise and concentration problems as optional rather than required symptoms and so the view is that it captures too many general fatigue conditions rather than ME/CFS. Then there are the stricter 'Canadian Consensus' and 'International Consensus' definitions, that would exclude around 40% of those diagnosed using Fukuda.
The Australian (Dubbo) study cited above uses the International Consensus criteria and found a prevalance of 11% at six months post-infection. A similar longitudinal study (Jason et al) focusing on university students with mono gave a rate of 23% meeting at least one of Fukuda/Canada/IOM criteria at six months, with roughly half of those meeting more than one. If we assume that Canada criteria are the most exclusionary, that would tie in pretty neatly with the 11% Dubbo study. Based on this, it is reasonable (IMHO) to conclude that these infections cause ~10% of patients to suffer from ME/CFS (with PEM, 'brain fog' etc rather than just general fatigue), at least at the six month point.
General chronic fatigue rates are far higher - I can't find the reference but I believe the number was 18% of all adults self-report prolonged fatigue. This is why my earlier comment states that the ONS data is pretty much useless.
I think we may need to re-evaluate these numbers since we're now starting to deal with the delta variant and it may skew these numbers upwards if you're not vaccinated.
> maybe women’s immune systems are permanently upregulated to be prepared for attempts by the placenta to secrete immune-downregulating chemicals during pregnancy
For me the question is less "why are women's immune responses so strong?" than "why are men's so weak?" Like, what are the costs to a strong immune system? Aren't autoimmune disorders only a problem because of some (unknown?) features of the modern environment? And even today, arguably women get the better deal: yes, women get more Long COVID, but when men get COVID they're the ones who are more likely to end up in the ICU/dead. So why hasn't evolution built a stronger immune response into men?
[End contribution to the discussion; commence brain dump of things I find interesting/puzzling vaguely in the space of sex difference in immune response]
Wild speculation, but: is the fact that women are 1.5-2x as likely as men to be depressed *and* have stronger immune systems evidence for the "chronic psychitis" view of depression? https://slatestarcodex.com/2015/01/05/chronic-psychitis/ Anyone know of research on this?
Women also have had more COVID vaccine side effects, including (anecdotally) really weird periods (e.g. super long, heavy, or happening post menopause; self-reports in this thread: https://twitter.com/KateClancy/status/1379847815636135941) The stronger side effects obviously make sense because of stronger immune systems (and susceptibility to psychosomatics too), but this makes me realize that I don't understand why you wouldn't get post-viral syndromes after vaccines. I get "poorly understood," but I would have naively thought that in one way or another these syndromes are caused by your immune system never quite getting back to baseline after an infection. Why wouldn't that happen after the vaccine triggers an immune response too? Why aren't we getting Long Post-Vaccine-COVID? Can anyone who understands biology better than I do help me out?
Well, it's known that the immune systems need to be down-regulated to allow the placenta to remain unattacked. But I suspect that it only needs to be down-regulated in specific ways. But perhaps if we evolved with an expectation that adult women would frequently be pregnant, the non-pregnant periods would have significant up-regulation?
Well, perhaps. IIUC there's a lot of argument about that entire theory. The down-regulation is known, but the details aren't, and everything else about the theory is, I believe, speculation.
I'm no expert, but maybe the location of the infection matters; most of the pseudo-infection of a vaccine stays in your arm muscle. I also wonder if, somehow, live viruses can sometimes keep replicating in small enclaves that the immune system contains, but fails to destroy for whatever reason (what's Scott saying about "sympathetic magic"?) Covid mRNA vaccines in particular lack most proteins from the live virus, which could alter or lessen the immune reaction.
My bottom-line assesment of the draft version was: An average unvaccinated adult infected with COVID will suffer an average:
~5 days of Acute COVID
~20 days of Long COVID
~20 extra days of Being Dead
Being vaccinated probably knocks all of those numbers down, maybe by a factor of two, on top of the very substantial reduction in the probability of being infected in the first place.
The severity of Long COVID symptoms seems particularly hard to assess, but anything close to "I wish I were dead" seems to be extremely rare. Therefore, the risk of COVID can be properly rounded off to the risk of dying from COVID, plus a small correction factor that probably shouldn't tip the balance in most risk:reward calculations.
As someone who has CFS, I am a little relieved that the Long Covid odds seem lower than I feared, but I gotta say that the way section 4 presented it read as "it's bad, but hey, at least it's not CFS!"
What you wrote in section 5 was excellent though, and your compassion shone through, but since section 4 came first it did feel like a bit of a gut punch.
While I'm here and thinking about it, did any studies try and quantify fatigue levels? There's a huge gap between "bed-ridden", "Can't work", and "life significantly affected, but can still work (perhaps only part time)", but all of those describe some fraction of CFS patients....
I had the good luck of having a series of very stressful life events fuck me up, followed by a bad injury, followed by a stressful job.
This put me in an uncomfortable situation of having to meet my life commitments while suffering through a onslaught of severe headaches, fatigue and generally just wanting to die. This I was able to do... But only just very barely. This kept me miserable for many years, and I'm only recovering now.
I wonder how many people are in similar scenarios. No doubt there are some viruses that produce similar effects ad infinitum. But you can be swimming comfortably, and a few waves can have you gasping for air and desperately treading water. Once you're in the life hole, life has a way of keeping you there.
Sorry to hear that. (in the last few months, Scott wrote about how our society kicks people when they're down, but I wasn't able to quickly find the article.)
No bother. But I really wanted to make the point because while chronic fatigue is very real, so are life holes. Tools and strategies to climb out could probably benefit lots and lots of people.
Can we discuss the risk communication here that somewhat trivializes this when there are small rates but large populations affected? It's IFR all over again.
Based on Scott's estimates and our current policy trajectory, 50+ million people would have severe debilitating lifelong COVID.
How do I arrive that?
> 8. Your chance of really bad debilitating lifelong Long COVID, conditional on getting COVID, is probably somewhere between a few tenths of a percent, and a few percent. Your chance per year of getting it by living a normal lifestyle depends on what you consider a normal lifestyle and on the future course of the pandemic. For me, under reasonable assumptions, it’s probably well below one percent.
Given that the current public health policy approach to the pandemic (which I oppose) is essentially that we focus on vaccines (but with a slow pace globally given vaccine apartheid) and that everyone otherwise can self-protect while waiting for or declining vaccines, with an explicit or implicit assumption now with Delta's infectiousness that "everyone will get it." Again, I disagree with the fatalism here but that is the apparent approach given waning use of NPI policies. And I also think a harmful assumption is that people will get it once and that the level of vaccine- and infection-acquired immunity will hold, when in reality reinfection and breakthrough infections are known, and the risks with waning immunity are more of an unknown.
Regardless, let's assume everyone is infected once, 25% of humanity is fully vaccinated is now, 75% is not, and another 25% will be vaccinated before catching COVID. And let's assume Scott's rate ranges and simplify to 1% with COVID will get long COVID and vaccine halves that.
If they are debilitated, why would you expect to see them? They're tired, they may be bed ridden, they don't have energy to do even what they need to do, why would you expect to see them or hear from them?
FWIW, I've got a very sick brother (not COVID related) and he's essentially just dropped out of sight. I know about him because one of my sisters can talk to his wife. (OK, family problems *are* involved, but still...) He was too sick to ask me for help.
So why would you expect to hear from those who are severely debilitated?
My mother is one. Hundreds of thousands of people doesn't mean they'll be all that noticeable. Heart disease and cancer remain the top killers of Americans and kill over a million people a year, yet in 41 years, I've known only two people who died of either. Clearly, they're out there nonetheless.
Just an unsubstantiated general point-- it seems like every account I see of diseases where exhaustion is the major symptom is about someone who was previously high energy-- worked for a lot of hours, family and social life, and athletic, too. All of the sudden, they're flattened.
Surely being sort of average (fried by long hours, netflix is primary hobby) can't be protective. Or is it? Maybe exhaustion diseases are more of a risk for people who are frying themselves. Maybe it's only high-energy people who have enough to spare to write about their problems when they're exhausted. Or what?
Or is my sample biased by media preference for drama?
With CFS/ME the disease usually gets way worse following attempts to exert yourself (it's called post-exertional malaise, pem). If people find CFS/ME really early then maybe they can stay the rest of their life without being bed ridden by being very careful and not exerting themselves.
If someone is reclusive, and drops out of sight, you can't expect to notice.
If someone is "socially invisible" and drops out of sight, you can't expect to notice.
If Elon Musk were to drop out of sight, everyone would hear about it.
It's not exactly "media preference for drama", but you only have attention available to notice so many people. The people that lots of other people notice are the ones that you will hear about when something unusual, whether good or bad, happens.
Chronic autoimmune diseases are tilted towards women, but diseases the follow from an acute autoimmune attack are, if anything, tilted towards men. Everyone describes juvenile diabetes as autoimmune and it is mainly men. The literature describes narcolepsy as autoimmune, and it has even sex ratio, maybe tilted towards men. Greg Cochran describes schizophrenia as autoimmune and it is mainly men. Narcolepsy and schizophrenia occur earlier in men, but diabetes earlier in women.
"We found that the odds of having symptoms for 28 days or more after post-vaccination infection were approximately halved by having two vaccine doses. This result suggests that the risk of long COVID is reduced in individuals who have received double vaccination, when additionally considering the already documented reduced risk of infection overall."
One way to test how much of long covid is Psychosomatic would be to see if Republicans or Democrats are more likely to have the condition. Or use an other proxy(e.g occupation,religion,population density,zip code). And or asking directly how bad they think covid is and how long the symptoms last before they contracted covid.
You would, of course, have to control for gender at the very least. But there are probably some genetic risk factors (maybe Ehlers-Danlos Syndrome (EDS) for instance) that could also be correlated with things like occupation, religions, population density, and zip code. I know that EDS is found to correlated with psychiatric comorbidities like OCD, anxiety, and bipolar for instance.
I agree you should control for sex, age and race and pre existing conditions, etc if you can.But it depends on how big the relative risk by proxy as to how important controlling for every possible confounding variable is before you can say anything meaningful about how psychosomatic long covid is.
I prefer Republican Democrat relative risk over other proxy's as there is a well known difference in how they perceive the risks of covid 19. As well as lots of data on how they differ on other factors.The only problem is that voting pattern data is not routinely collected in health studies. So you may have to administer your own study and not just analyze someone else's data. To get around this you could look at the correlation between democrat vote by zip code and long covid after controlling for age, sex and race. Ideally from a study that recruits its participants from people who test positive not just people who later say they have long covid.
I'm saying that if you find that Democrats are more likely to get long covid, you may be actually finding that women are more likely to get long covid (because women are more likely to be Democrats) or that people with EDS are more likely to get long covid (because maybe people with EDS end up being Democrats more often).
Also, if you found that Democrats are much more likely to get long covid than republicans, you still don't have any good evidence that long covid is psychosomatic.
Controlling for sex, age, race, pre-existing conditions, etc aren't just something you do if you can. They are what you do if you want to have any hope of determining causality. If you can't control for everything (as you sometimes can through randomization), then you need to look at the theory to determine what needs controlling. Just looking at politcal affiliation will give you a pretty bad model.
What I was trying to get at was if you found e.g democrats are 10 x more likely to have long covid it couldn't realistically be explained by other variables.As well as you would only need to control for the major confounding factors not every conceivable variable.
Age and sex would be the most important variables to control for.I don't know what the independent effect of race would be but probably smaller than sex. Pre existing conditions probably would not differ too much by voting patterns after controlling for other factors but I am not very sure about this.There is or so a risk of over controlling, for example controlling for occupation as it taps in to the same construct as R vs D
your risk of breakthrough covid is probably really really serially correlated
Immunocompromised people make up a huge proportion of breakthrough infections; almost half in one study, despite being like 3% of the population.
If they get vaccinated at the same rate as everyone else then, by Bayes' rule,
P(bt|ic) = P(ic|bt)P(bt)/P(ic)
so that means if 1% of vaccinated people get breakthrough infections each year then vaccinated IC people have about a 1/6 chance of getting covid in a particular year(!); if 10% of vaccinated people get breakthrough infections in a year, then we're looking at more than one infection per year for the average IC person(!!!)
the law of total probability or something means that a vaccinated non-IC person has a breakthrough infection risk of
p(bt|~ic) =(1 - P(ic|bt))p(bt)/p(~ic)
ie about 0.5% if p(bt) = 1% and about 5% if p(bt) = 10%
this is assuming IC people are vaxxed at the same rate as the general population, which maybe isn't true. if every IC person in the US is vaccinated right now, then P(ic|vax) = P(ic)/P(vax) ~= 6% of the vaccinated population. then the IC get infected at a rate of about 8%/yr (at a 1% breakthrough rate) to 80%/yr (at 10%), while the non-IC get infected at about 0.5%-5%/yr
this suggests to me that probably 10% is too high, because otherwise there'd be sensationalistic news articles about Guy Who Got Covid 3 Times After Being Vaccinated and i haven't heard about that at all
obviously you might end up immunocompromised in the future, but it's obviously strongly serially correlated. so your estimated lifetime risk should (I think) be a lot closer to whatever you get by cutting your annual risk in half, assuming you're not currently IC, and close to 1 if you are
breakthrough infection risk probably varies with a bunch of other serially correlated stuff like age and sex, too, but i find it hard to believe any of that is going to make a big difference compared to being immunocompromised or not. previous covid infection might matter? but idk
all calculations were done before 10 am so i cannot be held responsible for any errors
Is it possible that patients diagnosed with CFS/ME don’t get better (as compared with people informally deemed as having postviral syndromes) because they are more likely to be medicated for it (because they and their doctor have decided it’s serious, won’t be going away on its own, and medication for it will be covered by insurance if a formal diagnosis is on file)?
I ask because I have known many people who, once prescribed Adderall for fatigue or a similar malady, have a hard time functioning without it—which would certainly make them answer on a survey that, at present, they would function far suboptimally if they stopped taking stimulants. Both because of downregulation, and because once you get used to a new baseline with a stimulant (including caffeine or nicotine), the prospect of living without that stimulant certainly could register as a chronic disability.
If that stimulant is caffeine or nicotine, we say this as a joke (but deep down still mean it); whereas if it’s a prescription drug, we are being literal. (Even if originally we were only going along because otherwise our medicine would cost five times as much.)
I suspect that a lot of people with CFS/ME do try stimulants at some point along their diagnostic odyssey. Stimulants probably do help them get stuff done, too. But the chronic fatigue is only one part of the disease. (Chronic fatigue syndrome is a really bad name for what they experience.)
CFS/ME is marked by post-exertional malaise which involves having an adverse reaction to exertion. So, someone with CFS/ME who started taking Adderall and then started to work or exercise or whatever would then have a crash where they would be bed ridden for a time or would at least feel that much worse.
I know…I sort of suspect I may suffer from a version of this cycle myself. (Of course, it’s always hard to differentiate one’s baseline from what’s normal and what’s diagnosable. But these aren’t just the idle musings of a hypochondriac; it’s been a 6-year dialog with my physician to try to solve a number of interrelated symptoms.)
The question isn't really "do people suffer long-term effects after COVID infection" but rather "is there a specific 'long COVID' that's different from other viral infections?". And the answer to that - with the exception of anosmia - pretty much seems to be no.
“Getting hit in your home by a crashing airplane”?? 1 in 250,000!? No way. That would be 1200 people in America alone dying from this every year. Whoever wrote that is completely full of shit.
Re. Chronic Lyme Disease, the Wikipedia page you linked is constantly monitored by anti-CLD fanatics who reverted each of my attempts to make the page less biased within hours. Every one of the Lyme studies that the NIH and the CDC list on their webpages to dismiss CLD is so fatally flawed as to be completely valueless. One, for instance, "proved" that chronic Lyme doesn't exist by showing that none of the patients in a set of patients who complained of chronic Lyme /and tested negative for Lyme disease/ tested positive for Lyme disease.
The suppression of CLD is the only actual legit medical conspiracy I know of, where a bunch of people packed the IDSA panel on Lyme, deliberately excluding anybody who believed in chronic Lyme, and never considered any of the papers which suggest that chronic Lyme exists. It was a total kangaroo court, rigged from the start.
Would pay money to see how this analysis should be updated in light of the much more rapid spread of the omicron variant, especially that final "below one percent" number.
Long covid still seems like this huge question mark that's looming large in the minds of my progressive friends, especially now that Fauci has said everybody's gonna get the thing. Even I'm creeped out by the way that official sources haven't come out with new research showing the phenomenon has decreased; they've just kinda stopped talking about it.
Who wrote this? I have chronic Lyme and long Covid, and assure you they are very real. Like Lyme, Covid seems to hit weaker areas of your body. This has been the biggest nightmare I have lived through.
Skinks are a lot less like humans than are, say, rabbits. IIUC adult female rabbits are essentially always pregnant.
Re Chronic Lyme disease-I don't have the reference on hand, but one of the "Lyme-literate" books reported a credible instance of blood from a mouse that had gone through the standard treatment transmitted Lyme to a previously uninfected mouse.
Just going to copy/paste this from my comment on your peer review feedback version, which addresses your paragraph about Chronic Lyme Disease being psychosomatic:
Hi, I have ME/CFS. I was also diagnosed with Chronic Lyme Disease last year. (But I decided not to believe it, and that was the final straw to stop seeing that healthcare provider.)
Your paragraph about psychosomatic conditions and CLD is framed in a way that doesn't make sense.
First off, it doesn't make sense to say CLD is universally considered 100% psychosomatic. CLD is not a coherent diagnosis! The diagnostic criteria for CLD varies doctor by doctor. (Err, alternative doctor by alternative doctor.) They try to say it's "the great imitator." They say that basically any vague chronic symptom can be a symptom of CLD.
If you meant something like "the symptoms of CLD are all symptoms that are always psychosomatic": that's not true either. Despite my CLD diagnosis, my symptoms are not psychosomatic. (At least to the best of my knowledge, and at least according to my doctors and therapists from the last few years.)
The set of people who "have CLD" ≈ the set of people with vague chronic symptoms who, at some point, visited the type of "doctor" who gives out CLD diagnoses. (i.e. naturopaths, chiropractors, "Lyme-literate" MDs.)
Secondly: the reaction to calling a condition "psychosomatic" is not simply an aversion to that concept. It sucks to be told your chronic symptoms are psychosomatic because, AFAIK, that's generally not followed up with any treatment (or at least any effective treatment).
I have spoken to many chronically ill people who would be _so happy_ to learn their condition is psychosomatic — if it meant they would get some kind of treatment and therefore relief.
Panic attacks cause weird physical symptoms. These symptoms are therefore psychosomatic. People who get panic attacks have to learn to accept that. But that's fine. Because panic attacks are treatable! If the reason for your lightheadedness is "you're having a panic attack," that's useful, because now you can work on having fewer panic attacks.
By contrast, IME, "your fatigue is psychosomatic" doesn't come with any action items. "Your fatigue is due to depression" means you can go get evaluated for depression, take antidepressants, do other things that work for depression, etc, and see if your fatigue gets better. But if a patient is told their fatigue is psychosomatic with no next steps, it's basically an unfalsifiable dead-end claim.
Rheumatologist here agreeing with you- - I personally think "psychosomatic" is pretty stigmatizing and less reflective of what's actually happening than "functional" (aka it's not structural but things are just not working right) or "pain processing disorder" (you're in pain because your nervous system has its wires crossed not because there's anything structural). These also carry the implications of possibility for treatments like pain CBT, reconditioning, and biofeedback. Psychosomatic implies people need to treat their depression and their symptoms will go away which is unfortunately rarely the case.
"It sucks to be told your chronic symptoms are psychosomatic because, AFAIK, that's generally not followed up with any treatment (or at least any effective treatment)."
"But if a patient is told their fatigue is psychosomatic with no next steps, it's basically an unfalsifiable dead-end claim."
Why would there be no next steps? Prescribe stimulants and see what happens?
My understanding is that "Chronic Lyme" is actually *distinct* from "Post-treatment Lyme disease syndrome". That is, if you have Lyme and get antibiotics for it and then you continue to have fatigue and other such problems (this is my current situation), this is a normal-ish thing that can get treated, probably, hopefully, maybe. Chronic Lyme in cases where one wasn't ever diagnosed with acute Lyme is the one that is considered psychosomatic by everyone except alternative medicine people.
"Chronic Lyme in cases where one wasn't ever diagnosed with acute Lyme is the one that is considered psychosomatic by everyone except alternative medicine people." This still isn't an accurate statement. CLD (in cases where one wasn't ever diagnosed with acute Lyme) is an inconsistent, incoherent diagnosis.
I don't think doctors consider CLD to be psychosomatic. That implies it is a _coherent thing_. I think they consider it to be "not a legitimate diagnosis."
I agree that Post-Treatment Lyme Disease Syndrome is a different thing and a legitimate diagnosis.
Chronic Lyme is the charlatan’s name for a money-printing machine. There have been many previous names and there will be more. The base rate of exploited sufferers makes it hard to discern what’s really happening. But blame the charlatans, not the sufferers.
Agreed!
There is no difference between chronic and post Lyme other than the 'doctors' who came up with the name.
I'm sympathetic, but also I'm reminded of the recent review Scott wrote of Crazy Like Us. It seems like "symptom or condition X is psychosomatic" getting into the proverbial water can sometimes be an effective prophylactic for X (iff it is, in fact, psychosomatic). I imagine that if you're an X patient during the phase where people are starting to catch on but X hasn't disappeared yet, that would really suck. But I'm not sure it would suck bad enough that we shouldn't try to make "X is psychosomatic" common knowledge anyway, to get it to go away.
Not even remotely a subject matter expert in this, so probably got something wrong about the CLU angle. Would appreciate an explanation if it's an easy mistake to correct.
Once it gets into the water that "X is psychosomatic", people stop mentioning X to their doctors regardless of whether X is a real thing with a concrete physical cause, because no-one wants to be dismissed and humiliated and there's nothing to gain if no treatment will be offered.
This is a fair point, and something worth considering, but it doesn't invalidate my point. If the specific manifestation of General Formless Mental Illness (per CLU) is extremely bad, then we should probably do the whole "lower its status so it goes away" thing, even though, I entirely admit, this will have some collateral damage and that will suck. "This policy has both costs and benefits"!="the costs of this policy outweigh the benefits".
Hi! I also got diagnosed with chronic Lyme and walked away from the diagnosis. Later (much later), a geneticist confirmed the real problem was Ehlers-Danlos Syndrome (EDS). So, not psychosomatic. But often mistaken for psychosomatic.
I wonder how many other "Long Limeys" out there have physical problems easily dismissed as psychosomatic — especially if they're women, or judged unreliable in some other way.
If you've got achy joints and muscles, kinda generally crappy health that's not definitively autoimmune but seems "autoimmune lite"; if nobody thinks to do the dirt-cheap and easy screening test for EDS (the Beighton test) on you; and even *you're* convinced the symptoms are probably psychosomatic — and then you get a positive lab for Lyme...
And that lab means a doctor finally stops trying to "see through" your physical symptoms and instead treats them with extensive supportive care for the very first time, while you're also relieved of the strain of trying to solve non-psychosomatic symptoms by "acknowledging" they're psychosomatic, then it will feel like CLD treatment works, rendering the diagnosis of CLD plausible even if you're a pretty skeptical person.
At least for a while.
I was young and dependent on family when I got the CLD diagnosis. I was aware some labs are so sensitive false positives might not mean much, but I was desperate, the family I was dependent on was invested in "Lyme literate" care, and that care *was* helping me get better. For a while.
I started skeptical of CLD, but that skepticism softened when treatment seemed to be helping. Plenty of us will swallow our pride when something silly seems like it's working. As time wore on, "Lyme literate" advice for what I'd have to do to get even better just got sillier, and I couldn't take it anymore. I figured, if Lyme disease *had* been my problem, I was as cured from *that* as I was gonna get, and I should just be happy with the net improvement.
The net improvement lasted several years. But EDS bodies keep injuring themselves, the sterile tissue injury keeps kicking up the immune system, and stuff got bad again. It took decades between the onset of EDS symptoms and an EDS diagnosis — despite how cheap and low-tech Beighton scoring would have been if anyone had thought to do it! I've got the funny joints, skin that's a bit funny in the characteristic way: it wasn't hard to see if you knew what to look for.
There's nothing unusual about an EDS diagnosis taking this long, with multiple misdiagnoses (likely condescending, quacky, or both) along the way — especially if you're a gal. According to a European study, "A period of 14 years elapsed between the first clinical manifestations of the disease [EDS] and diagnosis for half of patients (28 years for 25% of the latest diagnoses). This delay was longer for females (an average of 16 years) than for males (an average of four years)."
https://www.eurordis.org/IMG/pdf/voice_12000_patients/DIS_Ehlers_Danlos_Syndrome.pdf
EDS patients often seem anxious:
https://www.intechopen.com/chapters/48398
In Spanish hospitals where they screened all anxious patients for hypermobility, they found EDS more common among nonwhites than whites. Still, if you go to an EDS support group in the US, you might be forgiven for supposing EDS is characteristically a disease of entitled white women — as if it were some fake disease to lend drama to their too-easy lives, like CLD. I suspect that EDS seems like a fakey "disease of privilege" because the less privilege you have, the less likely you are to ever be correctly diagnosed with EDS if you have it, and the more likely you are to be written off as some hysterical malingerer — drug-seeking, too, if your pain gets bad enough. This, despite screening for EDS being dirt-cheap and easy if you use Beighton scoring.
I meant "as if it were some fake disease to lend drama to their too-easy lives, like CLD" as the callous stereotype of CLD patients. I know others helped by a CLD diagnosis, as I briefly was, and who seem to have no better alternative. And I definitely would *not* classify them as Karens dressing up the blandness of their Karenness with invented medical drama. No, they're suffering people who don't fit into other diagnoses and treatments. They take what they can get, and are grateful for it.
Now about that Karen stereotype I just used...
I have EDS and Lyme and many other things, absolutely have been treated like I was crazy. Until the doctors send me to psychiatrists who say otherwise. I believe in chronic Lyme, as in EDS and possibly long COVID - there are a few genes that make some of us more susceptible - HLA and others
I had an interesting experience with long COVID. (It was being called post-COVID syndrome back in February). I was symptomatic with COVID for two weeks and never recovered over the next two months. I ended up going to the ER 3 times. Doctors ran a million tests and couldn't figure out what was wrong. They told me the diagnosis was a catch-all for "we're not sure but you had COVID and you're still sick so we'll just go with this".
Eventually they figured out that I actually had a super-rare form of cancer called a Ewing's like sarcoma. Which is only one percent of cancer cases in the US annually. I also talked to another sarcoma patient who had a similar thing happen to him this season.
I'm not sure if this is a trend or anything but it would make sense. COVID sucks up so much of the metaphorical oxygen in the room that everyone is naturally going to think about it first if anything weird is going on.
Jonathan.... Tjarks?
Jonathan - so sorry for your terrible year. But, yes, Covid comes to the top of a lot of our differential lists right now and sometimes causes delayed diagnosis. A lot of folks have abnormal CT scans post-Covid now and some have enlarged a ill art lymph nodes post-vaccination. So, your unfortunate situation isn’t unusual. Hang in there - we’re rooting for you!
For some reason “axillary” came out as “a ill art” in my comment above.
When you do these peer review things it would be helpful if you listed any major changes between versions somewhere so we don't have to read the whole thing again.
This is the really telling one.
They point out that long COVID was first thrust into the public
consciousness in surveys run by Body Politic, who self-describe as “a
queer feminist wellness collective merging the personal and the
political”. I agree this is a weird source for something to come from,
- but Hans Asperger was a Nazi and I still appreciate his diagnosis, so I
+ but Hans Asperger was a Nazi and I still use his diagnosis, so I
probably have to accept these people’s as well.
I would post a diff of the the whole articles to a pastebin but don't want to volunteer myself as allowed to publish the exclusive, subscribers-only peer review version.
It's far from clear to me what point you are trying to make.
Sorry, lame joke.
I ran the peer review version and published version through a diff tool. That's unified diff formatting. The line with the minus was removed, and the line with the plus was added.
That was one of a few dozen changes.
Scott apparently decided to say he uses Hans Asperger's diagnosis rather than appreciating it.
I was posting that as a teaser and also trying to make a big deal out of it tongue in cheek.
It doesn't help that the formatting looks way worse on a smartphone, which I am only now seeing.
Sorry again for being lame.
Thank you so much for writing about this. Glad to have this sane analysis.
Hit "post" too early!
My parents (86, 78) both caught covid in Chennai, India, in April 2020. It wasn't clear if the hospital even knew to diagnose it with a reliable test, but they seemed to diagnose my Dad by CT scan. Dad had severe fatigue, some disorientation, pulseOx of 94 (luckily I'd bought them pulseOx). Dad was forced to get admitted by the city govt. Mom had a cough.
They were the only 2 in the isolation rooms (no other covid patients...it was a new thing in the city still).
They had a negative, a series of positive tests and again 2 consecutive negative tests. In the interim they were given tons of anti-virals, HCQ etc. After being discharged they felt severe fatigue, loss of taste. That probably started earlier. But got worse after they tested negative. So maybe that was the beginning of long covid.
Their CBC results were crazy numbers...but everything settled to normal after they got home, in about 6 weeks. It is easy to get blood drawn and tested in India, so we were doing it. Doctors said these numbers being off was not really concerning. It was normal with any virus.
No one was allowed to come to help them. That was very stressful. The rules were being figured out. We were afraid if their apt complex would let them back in after release...but luckily that all worked out.
The symptoms they had for the longest time, maybe 6 weeks, were fatigue and loss of taste. I sent them Ensure (good protein, nutrients, easy to digest) and begged someone to deliver it to them. This was all hard because they were socially marked as covid positive even after being sent home. Ensure is what saw them through. They could make it themselves.
Soon they were allowed help in the house, as they tested negative repeatedly. They started eating SUPER healthy. They've always been good about that but took it up a notch.
I believe Ensure was the key. And eating healthy overall. Resting too. In some ways they're healthier than before covid, now, a year and a half later.
It wasn’t the “Ensure.” lol
Nutritional shakes are quite overrated IMO anyway, and the ingredients on it do not look super inspiring (love to get all my fats from canola and corn oil). So it’s just - added sugar and maltodextrin (which, despite being labeled as an added carb on the ingredients list and not as an added sugar, is “Maltodextrin is easily digestible, being absorbed as rapidly as glucose”, which seems misleading). And then soy protein isolate, and canola and corn oil., some ingredient for taste like cocoa powder, and then a bunch of ingredients roughly equivalent to a multivitamin, which are generally as far as I know not considered super awesome - source gwern “as parting thought: millions of Americans (estimated at around a third or more of adults) regularly take multivitamin supplements. These supplements are unlikely to help a balanced diet, there is little evidence they do, and there are studies which have indicated actual harm from the consumption of multivitamins39 from Gaston” with source here https://www.gwern.net/Melatonin#fn39 . And while that extra random % of daily value worth of vitamins (Ensure seems to randomly choose between 20% and 80%, except 0 folate) is probably good relative to a vitamin less meal replacement, I think everyone would be better off just eating normal food.
You know, in their situation, where they were fatigued and unable to buy food or cook, this was an amazing option. It was the very first lockdown and very little else was possible. This had calories, protein, etc in easily digested form.
I agree it is highly processed food and generally not a great idea.
I guess I’d recommend, in that case, precooked/microwaveable meals made out of a variety of whole ingredients, which are widely available, including for delivery, if they’re genuinely too sick to cook themselves. Or just ordered ingredients for them to cook.
Lockdown was extreme in India, and new then. You had to be tech-savvy to order stuff.
And the pre-prepared food industry never took off in India because I guess of cultural views (specially in previous generations) that eating "old" food is ultimately unhealthy. People try to eat freshly made food.
I've tried to convince my relatives to freeze food, to no avail.
Food cooked in the morning, if eaten at dinner - you would be seen as living a sorry life.
Still, diabetes rates are high, because sugar consumption is high and processed grains are consumed a lot in the past 50 years.
Anyway, microwavable or frozen prepared foods are simply not available widely, as you seem to suggest.
Interesting. But if it comes in a bottle like Ensure is it considered "old?" I wonder how Soylent would do.
The Tanzania case sounds more like encephalitis lethargica (most known from legacy cases in the Robin Williams, Robert De Niro movie "Awakenings"). The illness was concurrent with Spanish flu, but the trademark for EL was post-infection fatigue.
I don’t know to what extent it’s consensus, but my understanding is that many experts have come around to the idea that encephalitis lethargica *is* long Spanish flu, so to speak. I guess Scott is in the camp that believes this.
I just wanted to comment that one theory on post-viral CFS/ME and one that seems to be related to some people's long covid (see this twitter thread for an example: https://twitter.com/ar_pnw/status/1432772600480944128) is that viruses can lead to a degradation of connective tissue which leads to cranial and spinal instability which leads to the long list of CFS/ME symptoms.
There are a growing number of CFS/ME patients being cured by getting surgery to correct cranial/spinal issues, and there is growing awareness that some patients with CFS/ME had connective tissue disorders before getting CFS/ME.
Two cases that anyone interested in CFS/ME (whether they're just interested in it or they have it or know someone with it) may be interested in are those of Jen Brea (recounted here, https://jenbrea.medium.com/cci-tethered-cord-series-e1e098b5edf) and Jeff Wood (recounted here, https://www.mechanicalbasis.org/). It is incredible how these people have recovered, how they may have gotten sick in the first place, and how horribly the medical system can be until you figure out what's wrong with you and how to navigate it.
Also, while the documentary Unrest (mentioned above in the WSJ comments) sounds like it is really great and I plan on watching it, the documentary is missing what surely is the best part of Jen Brea's story, her recovery.
Another note, I've been reading Ron Chernow's biography of John D Rockefeller and I'm convinced with wife had CFS/ME. It sounds like she had the classic post-exertional malaise that is hallmark of the disease (maybe caused by your spine poking your brain when you move)
I clicked through to a few of these and, while I know precisely nothing about any of this, I’m extremely nervous that a lot of it seems ... ehhh ... a bit suspiciously alternative sounding. Especially combined with recommending surgery. It would not be the first time, or even the 100 thousandth time, that hundreds of people swore an invasive treatment helped them even though it actually didn’t. But again no clue what I’m talkin about, entirely possible that all works. I just recommend caution in areas of “niche under recognized diseases”, because a lot of them end up being either wrong or misconstrued, especially popular social media ones.
Hopefully everyone is cautious before they get a serious surgery! This includes a lot of personal research to make sure that they have a competent surgeon, that they've had second opinions, that they've had all the proper diagnostic procedures, and more. Sadly all of this takes someone being smart and competent enough to do a lot of hard work.
If you read Jen Brea and Jeff Wood's cases, both of them had clear signs of CCI on their MRIs and both of them had very clear remission of disease with cervical traction. They were also fairly advanced cases of ME/CFS who were bed ridden.
Could you expound what specifically sounds alternative about spinal issues leading to ME/CFS?
Also, I am not familiar with cases of "hundreds of people swore an invasive treatment helped them even though it actually didn’t". I believe you that they exist, but I'm skeptical about the number of these cases and can't actually come up with any off the top of my head.
First, a reminder - I HAVE NO CLUE WHAT IM TALKING ABOUT AT ALL
I googled “useless surgeries”. The first result was a NYT piece highlighting ... uh ... https://www.google.com/amp/s/www.nytimes.com/2016/08/04/upshot/the-right-to-know-that-an-operation-is-next-to-useless.amp.html
(More: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5234149/ https://regenexx.com/blog/useless-orthopedic-surgery/ https://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande )
> Take what happened with spinal fusion, an operation that welds together adjacent vertebrae to relieve back pain from worn-out discs. Unlike most operations, it actually was tested in four clinical trials. The conclusion: Surgery was no better than alternative nonsurgical treatments, like supervised exercise and therapy to help patients deal with their fear of back pain. In both groups, the pain usually diminished or went away. The studies were completed by the early 2000s and should have been enough to greatly limit or stop the surgery, says Dr. Richard Deyo, professor of evidence-based medicine at the Oregon Health and Sciences University. But that did not happen, according to a recent report. Instead, spinal fusion rates increased — the clinical trials had little effect.
Back pain and CFS are different, but, lol
> In 2009, the prestigious New England Journal of Medicine published results of separate clinical trials on a popular back operation, vertebroplasty, comparing it to a sham procedure. They found that there was no benefit — pain relief was the same in both groups. Yet it and a similar operation, Kyphoplasty, in which doctors inject a sort of cement into the spine to shore it up, continue to be performed.
So here’s a bunch of examples of supposedly sham surgeries. Ouch!
If I had to guess they, again idk what I’m talking about, probably did have the CCI and it helped, and that probably was a “cause” of the symptoms they called CFS, but i dunno how many others that’s true of - a lot of different causes mah be lumped into that term. And for all I know they might even be wrong about that somehow, which is always a possibility. It seems like quite a few common surgical procedures aren’t that necessary, and the CFS community has ... a lot of nonsense, and individual accounts of benefit in medicine are often really not great. I know I haven’t evidenced the claim that for above ineffective surgeries people claimed great benefit, but I’ve personally heard it and I strongly suspect a significant portion of people who went through them claimed benefit.
Oh, back pain is definitely a case of surgery ending up being no better than placebo. I should have thought of that one! And I think you're right that people who get the surgery often claim great benefit.
Also, the CFS community does have a lot of nonsense and accounts of people miraculously getting cured from XYZ and then still having CFS.
Spinal fusion is the only thing that worked for me, after several years of not even being able to put my own shoes on, periods of near complete paralysis from spasms, pissing into a bottle my wife had to empty for me, becoming unable to drive, unable to sit.
Thankfully, due to very obvious structural damage even a layperson could see on an x-ray and MRI, I never had to deal with people trying to tell me I was imagining this and CBT would solve all my problems. The surgeon explained to me quite clearly that, given the amount of narrowing of my nearly non-existent discs at that point, my spine was going to fuse one way or another. This eventually happens to all people, but usually not until your 80s or so. Pathological tissue degeneration meant it happened to me in my early 30s. So, at a certain point, you can wait 5 years for your vertebrae to fuse themselves, going through incredible pain as you live with bone-on-bone joints where the largest nerve in your body lives, or you can do it surgically.
I guess it's entirely possible recovery could have just happened on its own and this was all placebo, but you can't fake visible tissue damage, and I have a hard time believing I was going to end up fine with no intervention or just psychological therapy when I was using floor-mounted assistive tube devices designed for people in hospice care to put my socks on at age 35.
I don't think the chance of being hit by an airplane is 1/250,000, that would be 1300 Americans per year and that does not seem possible.
Also, I don't think that "What’s my yearly risk of getting COVID if I try to live a normal life?" is a useful question. I think "If I live a normal life, how much does the risk of Long Covid increase?" Or more generally, "If we all go back to normal lives, how much does my risk of long covid increase?"
I poked around a bit on the airplane question, and found this source: https://injuryfacts.nsc.org/home-and-community/safety-topics/airplane-crashes/
From that page:
> Preliminary estimates of the total number of accidents involving a U.S.-registered civilian aircraft decreased from 1,347 in 2018 to 1,302 in 2019. The number of civil aviation deaths increased from 395 in 2018 to 452 in 2019. All but 8 of the 452 deaths in 2019 were onboard fatalities. Four of these deaths involved a commercial airline.
People keep quoting this same chart... I think it turned out that the airplane number is chance *per lifetime* of an airplane hitting *any part of your house*, and is possibly skewed by a few specific events that happened in the UK.
I suspect a lot of it is light aircraft, (single digit passengers or just a pilot) which crash fairly regularly, but don't do that much damage, so don't get into the news.
It will be, but the number will be in the single digits per year as per thaunatos ' link rather than 1300 per year
yeah, that whole chart was various lifetime risks - if serious Long Covid is a comparable risk *per year* to various somewhat standard *per lifetime* risks, that's really bad!!
I'm sorry, but after reading the portion about willpower and me/cfs I am still skeptical and unconvinced. Heron's post, especially read to me as Heron deciding they felt unwell, going to many doctors and undergoing extensive tests to find nothing, and then self-diagnosing that they have an extremely rare condition their doctors haven't heard of that doesn't manifest itself on any testing known to medical science.
Is there any hard evidence that it is a physical condition that wasn't mentioned? Having read the article the impression I got is that it's just a psychological disorder, one that conveniently can't be disproven through medical science
For some ME/CFS is maybe a psychological disorder, but for others, and it looks like it could be a decently large subset of those with ME/CFS from recent research, ME/CFS is caused by craniocervical instability (CCI) or other spinal issues that do manifest themselves on tests known to medical science. Very few doctors are going to know this though, which shouldn't be surprising at all. And of the doctors that do know this, very few are going to be experts on CCI or other spinal issues, the related tests, and the effective treatments.
Check out this series of blog posts: https://jenbrea.medium.com/cci-tethered-cord-series-e1e098b5edf
There's no diagnostic test for ME/CFS (/ Long COVID cases that appear to be ME/CFS). But that doesn't mean ME/CFS patients cannot objectively prove they are disabled.
I'll tell you about medical tests that ME/CFS patients use to prove they are disabled in an insurance context. Disability benefit providers argue claimants are malingering until proven disabled; they have a high bar for proof. Maybe this will help demonstrate the legitimacy of ME/CFS symptoms.
There's this thing called a 2-day CPET. It stands for "cardiopulmonary exercise testing." I don't know a ton about these, but I know they involve a lot of physical exertion. Physical exertion causes "post-exertional malaise" (PEM) in ME/CFS patients. This test can measure PEM.
(But this is a risky test for ME/CFS patients. Not something to do casually. Some are fine afterwards, some take months to recover, some never recover. Triggering large amounts of PEM appears to permanently damage the health of many ME/CFS patients.)
ME/CFS patients also do neuropsych testing to demonstrate their cognitive deficits.
And there's this one condition that super commonly co-occurs with ME/CFS: Postural Orthostatic Tachycardia Syndrome (POTS). This condition actually has a straightforward and objective diagnostic test. Basically, a doctor observes how a patient's heart rate is affected by standing up after lying down. POTS patients see a 30+ bpm increase.
(In my experience, my POTS symptoms and ME/CFS symptoms are heavily entangled. I don't know where one starts and the other begins.)
Here's a page by the Workwell foundation about their 2-day CPETs: https://workwellfoundation.org/testing-for-disability/
Here are anecdotes about ME/CFS patients getting CPETs: https://howtogeton.wordpress.com/stories-from-two-day-cpet-me-chronic-fatigue-cardiopulmonary-exercise-testing/
Some other tests are listed here: https://howtogeton.wordpress.com/2019/06/25/chronic-fatigue-syndrome-disability-survey-results/
Regarding this, "In my experience, my POTS symptoms and ME/CFS symptoms are heavily entangled. I don't know where one starts and the other begins," what do you think of Jen Brea, Jeff Woods and others having all their POTS and ME/CFS symptoms disappear with cervical traction and then CCI and tethered cord surgery?
It seems to me that POTS and the other symptoms have, for many (given a recent paper on the prevalence of CCI in the MRIs of those with ME/CFS), a common cause.
> what do you think of Jen Brea, Jeff Woods and others having all their POTS and ME/CFS symptoms disappear with cervical traction and then CCI and tethered cord surgery?
Not sure exactly what you're asking. I think it's amazing. I am very happy for them. I think this area of ME/CFS treatment validates the legitimacy of the condition, since it involves diagnosis through MRI and treatment through surgery.
On a personal level: I have already been evaluated for CCI by my ME/CFS specialist, and she does not think I have it. Traction doesn't help me. I suspect tethered cord may be possible in my case, but it still seems unlikely and I'm investigating other treatments first.
Julie Rehmeyer fell ill with ME/CFS in Berkeley. It seems that mold triggered her illness. In her memoir, Through The Shadowlands, she talks about how she ended up doing "extreme mold avoidance," and that put her in remission. IIRC, she was doing well until she suffered some extreme mold _exposure_ through a neighbor's improper handling of moldy material. Then she developed structural issues such as tethered cord. (Or maybe these issues just worsened and she wasn't previously aware of them?) She has gone through multiple surgeries, and now she seems well again.
Mold appears to be the most likely trigger for my own illness too. I think it's plausible I'll develop structural issues down the road, like Julie Rehmeyer. So it's on my radar.
I don't deny that orthostatic tachycardia may be correlated with ME/CFS, but I fail to see how the two could interact directly with each other. Anecdotally I was formally diagnosed with orthostatic tachycardia roughly 20 years ago but have nothing like ME/CFS; just a small risk of fainting when standing too quickly. Which, frankly, proves nothing but made me interested enough to comment.
I've heard about the 2-day test in a New York Times article. Basically, the test works like this: they have you exercise until you get tired, and then do the same thing 24 hours later. Most people, regardless of whether they're fit athletes or frail grandparents, will do about the same on both days, but CFS patients do significantly worse on their second day - they don't recover their stamina the way most people do.
There are scientist who claim to have found diagnostic biomarkers in me/cfs lately.
Ron Davis working at Stanford is very active in me/cfs research and published a paper about a diagnostic biomarker
https://pubmed.ncbi.nlm.nih.gov/31036648/
I also know about Bhupesh Prusty working on it and claiming to be succesfull on his twitter, not about his publications about it. But there seems to a special issue in Biomolecules planned about it where he is the special issue editor.
https://www.mdpi.com/journal/biomolecules/special_issues/Biomarkers_in_CFS
Also there is a long list for diagnostic biomarkers in the mepedia wiki but haven't looked at most of them. I think most there wouldn't be specific enough.
https://me-pedia.org/wiki/Diagnostic_biomarker
As far as I remember both Prusty and Davis claim to have a specific enough test but it requires special equipment and/or is currently too expensive to do in a larger scale.
> Is there any hard evidence that it is a physical condition [...] the impression I got is that it's just a psychological disorder
Just a nitpick because I see this claim a lot: psychological disorders *are* physical conditions. Unless you believe human psychology is driven by some kind of voodoo magic, every psychological condition has a physical manifestation, they're just too subtle and complex to detect and treat like other physical conditions, so we use blunt instruments like "therapy" which have indirect associations in modulating the physical mechanisms causing them.
You've gotten a lot of people posting relatively technical things, so I'll just contribute a simple anecdote: you might be picturing someone who avoids work but is capable of various recreational activities, fitting some mental stereotype of laziness. When I first got ill, I was sleeping over 20 hours a day. Throughout the many years I have had CFS I have usually sacrificed recreation to conserve energy for work, rather than the other way around (assuming I had energy for either; that's varied). This really isn't a matter of avoiding unpleasant tasks, it's things like being hungry and not having enough energy to get out of bed and go to the kitchen.
I also though about mentioning my own experience with it and how the symptoms were was quite clearly contrary to my believes. As you mentioned many have to priorities work over pleasure and its also typical for patients to be in denial about their own limitations for a long time. That normally leads to a push-crash cycle. Patients push there activity when they feel okay (often doubting there own symptoms at the beginning) and the severe reaction to it (post exertional malaise) often comes with a delay of hours to a few days (also highly untypical for a psychological effect). This crash reaction then forces you to rest until you feel better to push again, but the cycle often causes a long term decline at the beginning of the disease.
In general looking into people who got me/cfs you will see that many of them had a very active lifestyle before and didn't show any risk factors for suddenly having a psychosomatic illness or just "deciding they felt unwell". Also the pattern of the symptoms usually don't line up with how you would expect such an psychosomatic illness to look like from my experience based on doing my masters in psychology.
Yes, dozen of abnormalities have been found in immune cells, cytokines, EEGs, mitochondria function, and so on in ME/CFS.
Institute of Medicine in 2015: "Key findings
"Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."
ME "is a medical-not a psychiatric or psychological — illness"
"This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort."
"Many people with ME/CFS report difficulty completing everyday tasks, and at least one quarter have been home- or bed-bound at some point as a result of their illness."
"The total economic costs of ME/CFS are estimated at $17 to $24 billion annually."
"ME/CFS can severely impair patients’ ability to conduct their normal lives."
https://www.ncbi.nlm.nih.gov/books/NBK284892/
How is chart B from Logue et al supposed to be interpreted? It can't be that mild and severe symptoms are counted separately, because in several cases, the bars for mild and severe symptoms during acute COVIC-19 sum to more than 100%. And it can't be that "mild" means "at least mild", because in several cases, the severe bar is higher than the mild bar.
speculating, but since they were testing symptoms of multiple kinds, maybe the bars represent "People who have some symptoms at severity mild" and "people who have some symptoms at severity severe", which would be counting separately for each symptom but in the combined "all symptoms" plot would double count people who have "mild symptom A" and "sever symptom B"
I don't see this explicitly expressed in your article here, but I've been hearing more and more anecdotes regarding problems in extremities with respect to (possibly) long COVID, ie finger and toe pain and/or numbness, Reynaud Syndrome, etc. Is that just represented as the "tingling" entry in your neurological are of the charts?
FWIW, one of the early symptoms reported for COVID cases in babies was "swollen toe". I, personally, attribute this to circulating tiny blood clots getting stuck in the capillaries. (We know COVID can cause that.) But there's no particular reason that I can see why only toes or babies would be affected. So I also tend to consider this a likely cause for heart, kidney, and brain damage. If this is indeed occurring frequently (as per my hypothesis), then blockages of capillaries in any part of the body may be expected, including those feeding the neurons. And neurons take a long time to recover, if they live through it.
This particular cause could explain any number of symptoms, and could (in general) only be checked for by examining the particular areas suspected for blocked capillaries. (Specific cases might have other checks, but one would hope that the blood clots don't continue to be generated after COVID has disappeared.)
There's one argument about long COVID that I never see addressed anywhere, and which makes me believe this is NOT some huge threat that would massively disrupt society and/or warrant indefinite restrictions: there are plenty places in the world that have been, in fact, rather heavily hit by COVID and/or consciously do not implement major restrictions. Certainly there are places where double percent-digits of population had COVID. Yet we never hear about these places particularly suffering from long COVID. I mean, of course there are some sufferers, you might hear some anecdotes, but you'd think if "if a few percent of COVID patients get long-term unremitting genuine CFS/ME, that has the potential to overwhelm government welfare budgets and long-term depress the economy", we should be ALREADY seeing it in some places.
I'm Russian, although currently not resident in Russia, and Russia is my main reference country here: the country seems to have become fatalist about COVID and it stopped being newsworthy many months ago. Vaccination levels are low (25% fully vaccinated) and the vaccine is widely perceived as not particularly necessary and/or beneficial. Some low-level restrictions persist, varying by region, but adherence is low despite occasional police enforcement; masks are very often worn under the nose, if worn at all. Official death rate is close to 200,000 (in a country of 144 million) and estimates based on excess deaths make it closer to 600,000. And despite this all... there's no catastrophe? Life seems to be going on more or less as usual? Long COVID is occasionally discussed in Russian social media but nowhere to the same scale as I see in the Western world. It's not denied, in fact many people know someone who had or is having prolonged symptoms (my own mom got it in June 2020 and it took over half a year for her senses of smell and taste to recover, and it's still not 100% as it was before). The point is, the society is not really being overwhelmed by long COVID at all.
Is that because those societies also don't have good central government welfare, so people with these conditions just disappear, either looked after by family / friends or dying quietly?
Most estimates also have over 30% of the US population as having contracted COVID...
> Russia becoming fatalist
Becoming? :)
I’m surprised vaccination levels are low though, especially since it looks like the Russian vaccine is pretty effective.
Article i just read (by a not exactly neutral source) about their vaccine problems https://carnegieendowment.org/2021/08/03/russia-s-vaccine-diplomacy-is-mostly-smoke-and-mirrors-pub-85074
The thing with Russia is that they have very high distrust for their government. So as soon as officials start a vaccination campaign lots of people start avoiding it as default behavior. State TV says "our vaccine is super-duper great" and all the social media instantly gets filled with antivaxers even though there weren't that many of them before. Antivax sentiment ranges from "I don't trust Sputnik, give me Pfizer" to "government is purposefully kiling you". And the fact that they don't approve any of the western vaccines adds fuel to the fire
Judging from the local antivaxers, perhaps a cultural exchange of vaccine's would benefit both regions.
Sure. A lot of people around here day "I won't get vaccinated because they don't let me choose the vaccine". I personally was hesitant for this reason too
Is the media free to report stories the government would prefer not be reported? Long story short - how would you know if it was a problem?
I definitely agree that society isn't going to obviously overwhelmed by long COVID, but I think that many individuals will be and society will be worse off for it.
If you don't have good measurements, much of this might be difficult to detect. A few percent of GDP might be hard to detect without good GDP measurements. And even with GDP measurements, something that affects human welfare in equivalent ways, but doesn't affect purchasing and employment behavior, might be very hard to track.
Most Western countries also pushed a bunch of cash benefits out to their people, which would make it very hard to measure enrollment in programs. We may not see conclusive results for several years.
The countries that let it run rampant also tend to be the countries that don't really have much in the way of welfare for disabled people - so the sick people won't much affect the gov budget - or for that matter much in the way of good data collection in most cases.
Some countries have entire wars I don't hear about until long afterward, so I certainly don't expect to hear about long COVID in far-off places. Anyway, we're talking about something whose risk is a few percentage points, right? How scary that feels will vary from person to person - and from tribe to tribe.
Disabled people are ignored all over the world. In the US, a large group of long covid patients has been very prominent in media. Your point seems very weak.
Has anyone asked how much social media of other as funded media usage there is amongst people who report long covid compared to people who don't?
Social media addiction would seem to be a key factor hear in generating a nocebo phenomena.
Seems like that would be incredibly vulnerable to confounders, since people with the symptoms described would be likely to be at home using social media rather than in person social interaction. And you have the counterbalancing issue that people who are not exposed to media about long covid, but who do have it, are less likely to be reported
It certainly would be difficult to control for, but not more difficult than the other factors in existing studies.
The fact is that behavioural scientists in organisations like Sage in the UK have advised governments that fear is rational when the threat is real, and that by amplifying fear the government could increase compliance.
The CDC published data on 600k in-patients with covid that showed that anxiety and fear based conditions were the second largest commorbidity that signalled for severe covid after diabetes.
I'm not saying the government scared a whole lot of people to death but... No actually I am saying that. Yes, the WHO sent a directive to health institutions that modified the MCCD protocol specifically for covid, to break precedent to amplify death rates, so the death figures aren't reliable in themselves. But it is certainly plausible and supported by some evidence that fear worsened real symptoms by causing panic attacks that disrupted breathing and exacerbated the severity of symptoms in both vulnerable and healthy cohorts.
Social media derangement syndrome is real, but sadly since most academics and journalists have it it's an uncomfortable thing to study or cover.
You say it's "supported by some evidence that fear worsened real symptoms", can you point me to said evidence? I've not seen it and that's really interesting.
Also, I'm really suspicious of the CDC's 600k patient comorbidity report. If I recall correctly, the group of ICD codes that they had categorized as "anxiety and fear based conditions" included a bunch of drug addiction ICD codes and other things that could have made it look like generalized anxiety disorder or this-or-that phobia are much more correlated with severe covid than they really are.
Typo above, I meant to say "or other and funded". - damn phone...
Ad* funded
N == 3 here.
I had a mild case of Covid in December 2020, immediately followed by heart palpitations (something I never experienced before) and neurological symptoms (tremors, intense twitching).
I was given an EKG holter on a cardiological clinic that showed a ton of extrasystoles, and one of the doctors asked me for description of my neurological symptoms. It turned out that this doctor had the very same post-Covid symptoms and was afraid of the possibility that it was actually onset of yet-undiagnosed ALS. After comparing our experiences, we came to the conclusion that it would be highly unlikely.
Sure enough, soon a third person known to both of us appeared with the same neurological problems.
But the really interesting observation: even though the problems persisted for months, they diminished after the first dose of Pfizer vaccine and basically went away after the second one in all of us. Not immediately, more like in a week. I recently got the EKG holter again to confirm. Zero extrasystoles over 24 hours, so back to normal.
So maybe subsequent vaccination has a healing effect on long Covid. That should be taken into account when mapping the long term aftereffects.
Panic attacks and placebo probably. Do you use social media a lot or get your information from ad funded media?
Diagnosing complete strangers over the Internet is, AFAIK, not a recommended practice.
As for your questions, I deleted my social media accounts many years ago. The above mentioned doctor has AFAIK never had them, he has got enough work as it is. I cannot vouch for the third person.
With regard to media, I dislike media hype and I try to inform myself over blander but more fact-oriented channels.
I also never had any type of a panic attack in my 43 year life. Whatever was on my heart was adjudicated as organic problem of uncertain etiology by the people who evaluated the 24 hour EKG record. A mild dose of beta blockers could get it under control and I am now being weaned off them without any major problems.
Glad to hear it. I think the implication that the vaccine cured your long covid is wish fulfilment. Organic conditions can have psychological or behavioural roots, as anyone with a stomach ulcer will tell you. I'm not trying to be rude or to diagnose you on the internet, just that is valid speculation, as valid as the vaccine having a direct curative effect on long covid without a known mechanism.
Placebo is an interesting topic.
Pretty much everyone in my group of contacts had to rest for one to three days after vaccination with various aftereffects, the second dose effects being worse. I saw my own wife lying exhausted and weak after her Moderna shot. So if placebo was in play, I would expect to go down too; and I indeed planned my work in advance around that expectation.
Instead, I had just a bit of pain around the shot site and sweated a little, but nothing that I would call a problem.
We live in divine ignorance really. I personally believe that being overly health conscious is as bad for one's health as some mild consumption abuse.
Have you heard about H. pylori?
I think they only talk about that on ad supported social media.
I've also heard this from a lot of patients and I think there's something to it. I believe someone at Yale is researching the question
Certain people are exposed to covid a lot. I have had covid twice, and it hit me pretty good both times. My lymphocyte levels were really crushed down, and it took a long time for them to come back, and they still have not returned to their previous levels. I'd be curious if there is any data looking at lymphocytes, CRP, and other markers in people with non severe covid. Get blood tests a few times a year, so I was able to track this. The low lymphocytes definitely correlated with me feeling like garbage. (that is a technical term for fatigue, shortness of breath and weakness)
Well, cheer up, it can't go on forever no matter what. Eventually long COVID would have to smoothly merge with what it's like to just be old ha ha. Feeling chronically fatigued -- check. Weird muscle and joint aches for no reason -- yup. Brain and digestion not working as well as it used to -- alas, check.
Right. If you're lucky you get born and grow up, learn and do stuff and have a kinda good time until you get sick and / or old and die. Not much of a problem. More interesting but sometimes shortened with motorcycles and booze.
I think the interesting question is how much "what it's like to be old" just absorbs other background conditions and is not worsened by them, vs how much "what it's like to be old" just *is* having lots of background conditions that have built up from various injuries and illnesses over the course of your life. To the extent that it's at all the latter, it would be very good to be able to avoid these illnesses and injuries over your life, to make your old age less bad.
Well, I'm pretty skeptical. I realize it's the optimistic hope of all the thirtysomethings I see in the gym, but my impression is that, outside of a few notorious cases (e.g. chronic alcoholism, HIV and assorted STDs, mercury or lead poisoning) the accumulated environmental damage theory of aging is dubious. I can't think of any good mechanism for it, and FWIW it's certainly not consistent with the people I know who've grown old. Some have been fit and healthy in their youth but got age-related disabilities and diseases young, some were slobs and couch potatoes when young and trundled on into old age the same way. I don't doubt there's *some* effect, but mostly age-related infirmities seem to arrive on their own timescale, driven largely by genetics and perhaps some mysterious epigenetic clock buried deep in the mitochondria -- which if anything might be influenced by very long-term trends in diet and activity, but probably not to the extent that there's a significant difference in being a marathoner and just able to trot around the block without huffing and puffing.
On the other hand, it's certainly true that these infirmities can be significantly enhanced or ameliorated by lifestyle choice. Your digestion may start to fail, but you can compensate (or make it worse) by a better choice of diet. You don't get fit the way you used to, but you can make that worse by being a slob and slow its effects considerably by judicious exercise. But I've never seen evidence (and can't think of a mechanism) whereby if you eat right and exercise right you can have the digestion, physical resilience of a 35-year-old when you're 65.
"cheer up, ageing will make all your symptoms worse" isn't exactly cheering.
Sure it is. You can stop worrying about whether you're doing exactly the right thing to preserve the ideal health of your 20s and 30s forever -- because you can't. Instead, you can start thinking about what to *do* with your limited period of ideal health, and how to prepare for the next stage (or for unexpected weird accidents like long COVID) so that when (and not if) that stuff happens, you react constructively.
Yep. But a lot of these diseases ate probably related to getting old before your time. See "inflammaging".
The kind of fatigue and muscle pain that accompany post-viral symptoms are nothing like natural aging. I was bedbound for two years in my early 40s with post-viral ME/CFS. Muscle pain regularly was 6-8 on the pain scale for those two years. Does that sound like the creaks and aches of aging?
Pre-apologies for being glib here:
But the mind is part of the brain and the brain is part of the body and all sorts of physical and non-physical stimuli affect and impact any of the mind/brain/body which in turn affects other parts of our kooky and complicated system.
We need LongCovid studies with proper controls and premorbid information, we need LongCovid studies in Japan, in South Africa, in Belarus, in Argentina, in Morocco, etc. We need to understand what this is or could be across a variety of cultures and environments because, as it stands, I simply do not buy it. The Western-Anglo culture encourages and abets solipsism to the point that self-reporting fatigue, as a condition and not a temporary feeling, is simply something I do not buy. Call me callous or naïve but I simply don't buy it.
This sounds like you're just imposing your strong prior about what is real, based on vague cultural stereotypes, rather than seriously engaging with the prevalence levels. Would your argument not equally apply to ME, depression, or basically any illness diagnosed via self reported symptoms? What about long covid induced fatigue makes it more suspect?
I need to see comparative data from other countries, other non-Anglo countries.
"Are you sure your [e.g. depression] isn't just in your head?" "No s--- Sherlock! Where else would it be, in my butt?"
Not saying it doesn't exist, saying it appears to exist majorly in loud, selfish, modern Anglo cultures -- maybe there's other factors than simply the virus that exacerbate these psychosomatic (and psychosomatic-looking) illnesses.
Sure. But even if something is caused or exacerbated by cultural features, it's still a real something, and it still has real effects on well-being. If we understand that it's caused by cultural features, then maybe we can do a quick and easy fix, like eliminating parking lots, or changing the norms of popular YouTube influencers, or whatever cultural oddities of Anglo cultures are causing it, rather than something difficult like an intervention on the body of the patient.
taking your very appropriate snark seriously, there's mounting evidence that a lot of apparently mental conditions are due to issues with the gut microbiome
As somebody with an interest in this area*, I think this is an excellent overview. With regards to ME/CFS, I find the following things relevant:
1) It's hard to understate just how poor a lot of ME/CFS research is, even from mainstream institutions. Rubbish case definition (see next point), tiny sample sizes, lack of blinding, subjective outcomes not matched by objective measures, outcome switching. Certainly on the treatment side (regardless of whether this is a psychological or physical treatment), a lot of it fails the 'homeopathy test' - i.e. 'is this trial design so flawed that it is possible to get a positive result if testing homeopathy using the same design?'. (Special shout out here to the SMILE trial that found a therapy that appears to consist of drawing chalk circles on the floor whilst chanting 'I'm strong like a tree', and that claims to cure all manner of ills including Multiple Sclerosis, to be effective)
2) Case definition in ME/CFS is a mess, and Long Covid seems to be following the same path. Little care is taken to differentiate patients with general fatigue and those with post exertional malaise (aka post exertion symptom exacerbation). If one's fatigue is down to mild depression then an exercise therapy might be a good intervention; whereas for somebody with PEM it might be pretty much the worst thing to recommend. The ONS data in the UK is likely to be garbage because it is just so nonspecific.
Similarly, misdiagnosis is high. Newton et al found that 40% of patients referred to a CFS clinic had alternative diagnoses upon further investigation.
3) On the psychosomatic issue, I hesitate. On one level, it doesn't really matter as to aetiology, if people are suffering. And, regardless of aetiology, prognosis for ME/CFS is poor and the treatments pretty ineffective. On the other hand... medical practitioners like to talk about inappropriate mind/body dualism but one is still referred to *either* neurology or psychiatry departments. I also find is surprising that if it is down to 'false illness belief' that CBT or GET interventions are not more successful in leading to recovery, especially with respect to success rates in treating phobias etc.
Finally, I find the distinction between 'normal post-viral fatigue' and (assumed psychosomatic) ME/CFS really weird. Assume that somebody gets a bad case of glandular fever/mono. If, two months later, they are suffering from fatigue/brain fog despite the virus having been effectively cleared from their system, this is considered 'normal' *even though AFAIK nobody can explain the mechanism as to why they are still experiencing symptoms*. The moment they hit the 3 month/6 month mark (depending on case criteria used), many doctors will confidently decide this is now down to a psychiatric issue. Does this mean that a patient experiencing post-EBV fatigue at two months is also temporarily delusional? I don't think I've ever seen a good explanation of the difference between the two from those who hold a psychosomatic explanation for ME/CFS.
*I started looking at the evidence regarding ME/CFS when somebody close to me was diagnosed with it. It's fair to say that, prior to that, my view (prejudice) was that ME patients were just very angry hypochondriacs.
Good post
"I started looking at the evidence regarding ME/CFS when somebody close to me was diagnosed with it. It's fair to say that, prior to that, my view (prejudice) was that ME patients were just very angry hypochondriacs."
It's a common view and it has led to immense suffering as governments, med schools, and medical societies have all neglected ME/CFS. It's easier to neglect a debilitating illness when docs are taught it's not a real disease.
> But they wrote up their poll in the scientific paper font
No, that's Times New Roman. The scientific paper font is Computer Modern. Big difference.
Sounds like you're a mathematician or computer scientist, rather than someone who does lots of FDA registered medical trials.
Close enough
(a physicist)
Hah, I was thinking about whether I should add physicist as a third option!
I'm in philosophy, and there's a definite culture split between the LaTeX and MS Word people within the field. It's weird that most other fields are all one or all the other, and even weirder that chemistry (my partner is a chemist) seems to be an all-MS Word field.
I expect that most chemists aren't writing code as part of their research (though I know there are subspecialties that do), and that is what I expect to be the primary correlate of MS Word or LaTeX
That "Being hit in your home by a crashing airplane" figure is a couple orders of magnitude bigger than I would have guessed. That means that in a city of 1M inhabitants, 4 of them in average have been or will be hit in their homes by a crashing airplane?
(remembers about [9/11](https://slatestarcodex.com/2016/08/31/terrorists-vs-chairs-an-outlier-story/)) ...oh.
Also depends on if it counts "bits of aeroplane"; if a plane disintegrates over a city, then hundreds or potentially thousands of houses will be hit by fragments.
Why not:
- Get a random sample of the population.
- Ask them if they have had COVID.
- Ask them if they have been vaccinated.
- Ask them if they are experiencing any Long COVID symptoms (without mentioning it specifically).
- Test for antibodies.
- Look at the responses of those who said that they have *not* had COVID or a vaccine but *do* have antibodies.
This way, it would be possible to get data on Long COVID incidence from people who've had COVID unknowingly. That group (previously infected + unvaccinated + unaware) may be quite small, but I still think it could be a useful exercise. Comparing their responses to the knowingly COVID-positive group might be revealing.
There is considerable evidence that in some people the antibodies disappear fairly quickly, and others never raise a significant number of them even though they did have COVID.
Doing a proper study is a lot more difficult than you are implying. Even that " Get a random sample of the population", as people are less likely to be willing to participate if they are tired all the time, and others have objections to taking part in a survey. You end up with "Well, it's as random as I could get, and it's not biased in any way I think of as important that I could easily fix."
So, yes, it's a study that needs to be done. But it's not a simple thing to do...at least not to do well. (Note the number of studies with small sample sizes, and consider how random a selection a population of that size could possibly be.)
Probably because since it's a rare effect and to get good statistics the random sample needs to be about 50,000 people and should sample from multiple regions of the country. Which leads to (1) how much would they have to pay you to participate, and (2) how much would they have to pay you to recruit all those people, give them some value for their time (e.g. maybe $20 each, or at least cover their costs), then set up and collect the questionnaire, direct them to a medical facility for an IgG assay, pay for the assay, collect and collate the data? This all sounds like a 7-8 digit number of dollars -- who is going to pay for that?
Because that would require a whole lot of hard, tedious work and the market for good data on COVID probably wouldn't support it. This is the sort of thing the CDC *should* be good at doing, and actually be doing, but the CDC hasn't exactly covered itself in glory on this one. Anyone else will find a more rewarding use of their time.
Count me as surprised that dying from "being hit in your home by a crashing airplane" was about 3x more likely than "drowning in the bath next year". The former sounds like one of those ludicrously unlikely things that only happens in the movies (e.g. Donnie Darko), the latter sounds like it should be one of those stereotypical "causes of death no-one talks about but are actually quite common".
Now I think about it again, the former is lifetime risk and the latter annual, right? That changes the ratio appreciably. Still not what I'd have guessed.
I suspect the "airplane" statistic [includes 9/11](https://slatestarcodex.com/2016/08/31/terrorists-vs-chairs-an-outlier-story/)
It doesn't because it was originally published in 1994. But I still doubt its provenance. You can see my top-level comment about it.
Well, if most people only take showers, drowning in the bath is going to be quite uncommon.
it's "bit of your house hit by bit of airplane" accidents where eg. an engine disintegrates in the air scatter a lot of small debris over a large-ish area - if that's over a city then many hundreds of houses are being hit by debris. Note that it's *not* the chance of *you* being hit by debris, let alone dying of it.
I have to tell you - I find your dismissal of psychosomatic illness, in a context where we've known hypochondria and Munchausen's to be real for a very long time, to be quite strange and to stand in sharp contrast with the typical evidentiary standards of this blog.
I didn't feel psychosomatic illness was "dismissed" by Scott. I thought it was considered quite thoughtfully - sort of 'Western medicine doesn't have much time for it, but for it's sufferers, it's just as real and experientally painful (if not more..) than physically based illness'
Perhaps I should read it again.
Perhaps we both should!
Western medicine is in fact forced to spend far, far too much time on it, when those resources could be vastly better invested in people who have tangible diseases they can't afford to get care for.
I find that an interesting comment. If, for hypothetical purposes (I remain unconvinced), some post-viral conditions are psychosomatic but cause suffering are they not worth medical attention?
Would you make, for example, a similar argument for depression? “This person has nothing to be sad about! We should invest our resources in something more tangible!”
What!!?!? I’m shocked you of all people is being so dismissive of mental health concerns. Mental illness is just as real as any other illness and in many cases just as debilities. As you of course are intimately familiar.
As an example, some percentage of debilitating lower back pain is psychosomatic. What that means is there is no damage to the back but in the brain the neurons are firing as if there is pain. It’s just not based on a nerve signal from the lower back. But in terms of human misery, if the signal is real or the brain is manifesting a false signal, the patient is equally debilitated.
This is the exact point: if it's mental illness, it's mental illness and must be understood and treated that way. By jumping immediately to the assumption that it is mental illness you're assuming precisely the thing that Long Covid advocates think you shouldn't assume.
But at this point we don’t know. We need to investigate both possibilities. To use my example, we need to be open to the possibility that there is a back or nerve disease process that we haven’t yet identified. And keep open the idea that the disease process is actually occurring in the brain.
Luckily I'm completely open to investigating both possibilities!
Ed Yong explains very well why it makes sense to think long Covid is proably not a mental illness. "One of the biggest misconceptions about long COVID is that it is entirely new. The SARS-CoV-2 coronavirus may have emerged in 2019, but many infections can lead to similar long-term symptoms. Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS). Although long COVID isn’t identical to any of them, the overlaps are substantial. “There are likely several things unique to COVID-19, but we’re not starting from scratch,” McCorkell told me."
https://www.theatlantic.com/science/archive/2021/09/covid-19-long-haulers-pandemic-future/619941/
The commonalities with those chronic and mysterious diagnoses are exactly what many people are pointing to as highly suggestive that many “Long COVID” cases are mental illness. Because it seems very likely that those things are also mental illness (note: not hypochondria).
I think we underestimate the power of psychosomatic responses. A few years ago, I was listening to an episode of Dan Carlin's Hardcore History about the history of public torture (https://www.dancarlin.com/product/hardcore-history-61-blitz-painfotainment/). One fascinating point he made was there's apparently no evidence that people would report vomiting or other illness at the sight of torture/gore. Compare this with modern sentiments, where many people faint or vomit at the sight of blood.
I'm not confident in this, because it's difficult to prove a negative from hundreds of years ago, but if true it has fascinating implications. I've never before heard of a psychosomatic reaction that is generally thought to be involuntary (such as vomiting at the sight of torture) to be downstream of cultural cues. How many more such 'involuntary' responses are externally influenced?
I think there's sane intellectual ground between mind-over-matter extremism and the hypothesis that all behavior is pre-programmed and involuntary.
From hanging around in some unseemly internet haunts, I can confirm that plenty of resources are absolutely wasted on psychosomatic illnesses and Munchausens (“munchies”). I don’t know the scale of it, but it absolutely happens. And it’s reasonable to question if it really is “just as real”, and it certainly is not for a subset of people who abuse the medical system, although I dunno for CFS broadly.
"They point out that long COVID was first thrust into the public consciousness in surveys run by Body Politic, who self-describe as “a queer feminist wellness collective merging the personal and the political”. I agree this is a weird source for something to come from, but Hans Asperger was a Nazi and I still use his diagnosis, so I probably have to accept these people’s as well."
Well, "Asperger's syndrome" was a diagnosis in which broadly the same group of children Kanner et al described were described in somewhat more optimistic terms for, ahem, 'sociocultural reasons', which has been deprecated for the better part of a decade, and for which studies of adults didn't find meaningful differences between it and similar cases of high-functioning autism with speech delay, so probably there's a good question about whether you should be.
(In practice, I think Asperger's was a bit different to HFA, but in that it was getting at a more heterogeneous cluster of neurodivergent children and might even have been more comparable to PDD-NOS on that point -- "schizotypal disorder of childhood" pretty much stopped being a diagnosis when AS got popular, for instance.)
Man...no need to rain on the funniest paragraph in the piece!
This discussion omits one important data point: long term effects from the original SARS virus. I’ve long believed this is a major piece missing from the Covid discourse. The original SARS virus has a ~10% fatality rate, but it also has well documented long term debilitating symptoms. My recollection is that something like 30% of SARS survivors were permanently disabled (I thought I’d seen this on Wikipedia, but the current article doesn’t quote a percentage). From that perspective, it’s quite natural to assume that Covid will also have long term debilitating effects, perhaps at about three times the CFR. This is one of the main points that convinced me of the severity of Covid back in March 2020, and I wish it had become more widely known at the time.
This is subject to reference class tennis though. SARS-COV2 has an IFR roughly halfway between that of SARS-CoV1 and seasonal flu. Why should it's `long' version be closer to one than the other? Just because of the similarity in name? SARS-COV1 also had antibody driven enhancement for the vaccine candidates IIRC, which SARS-COV2 definitely doesn't...
I don't have any medical expertise, but I don't understand why this falls under reference class tennis. What better comparison is there? SARS-CoV1 is the most closely related disease to SARS-CoV2 (and MERS exhibits similar longterm behavior). It doesn't seem like we've uncovered the mechanisms that cause longterm symptoms, but for an initial order of magnitude estimate what better reference was there? The studies Scott discusses all seem to suggest ~3x IFR as a reasonable estimate for debilitating longterm symptoms, most likely within a factor of ten of the truth.
Why is SARS-Cov1 a closer parallel than seasonal flu? Just because it has a similar name? In other respects (IFR, contagiousness, presymptomatic transmission, lack of ADE) SARS-Cov-2 seems not at all like SARS-Cov-1 or MERS.
3x IFR is believable, but (a) that leaves us with 1.8%, not 30%, (b) should it be 3x age adjusted IFR? If so, then the risk to Scott is pretty much negligible.
I should clarify that when I say 3x IFR for debilitating longterm symptoms, I'm referring to permanent disabilities and not minor aches and pains.
Also, I think it's fair to expect that closely related diseases that attack the same systems in the human body in mechanistically similar ways and exhibit similar short term symptoms, albeit with different distributions of severity, are useful references for trying to understand possible long term progression of symptoms. More importantly, they should have been considered this from the very start of the pandemic! SARS-CoV-1, MERS and SARS-CoV-2 all bind to the ACE2 receptor, which is not a feature of influenza.
Regarding ADE, do we have reason to believe this is what leads to longterm symptoms? It seems like you've settled on "reasons they are different" to rule out the comparison, but your evidence is plausibly orthogonal to longterm progression of disease. I think the shared mechanism plus the broad similarities in symptoms are far more important for building a reference class.
We'll have to agree to disagree. I don't think either SARS or MERS are an appropriate reference class (nor is flu); COVID-19 appears to be sui generis. However your claim of 3x IFR for debilitating longterm symptoms seems plausible, with the caveat that I expect it should be age adjusted IFR. This seems much more likely than a step function which turns on at age 18 and has no further age dependence. If so, then IFR for a man in his mid 30s (Scott) is about 0.05%, so the risk of debilitating long COVID would be 0.15% - more than an order of magnitude lower than what you would get using age unadjusted figures. Also it seems weird to me that the effect of vaccination should be so much more muted on frequency of long COVID than on death rate, and I wonder if this is just an artifact of age stratification in vaccination rate (assuming debilitating long COVID rate is also strongly age dependent).
Maybe you will say `SARS-1 and MERS are the right reference class because those are also coronaviruses!' But there are also coronaviruses that cause common cold and have no `long' version at all. Why are those not the right reference class? (I am not arguing that long COVID is not real, I am arguing that reference class forecasting based on using SARS-1 as the reference class is deeply suspect and most likely wrong).
Everyone has had the common cold repeatedly. If there was a 'long' version of it, how would you know?
I think it would be interesting to know how often people specifically get any particular viral infection that gets classified as "common cold". Different studies have identified about a dozen or so different viruses in common cold cases, but I don't think they ever find precisely the same set, and I think they find somewhat different prevalences.
But if four coronaviruses together cause 15% of common colds, as one study I recall claims, then I guess the average person has at least one of these coronaviruses each year, and therefore probably a particular coronavirus repeatedly every fiveish years?
> Why should it's `long' version be closer to one than the other?
I don't read such a claim into ZachH's comment. A long postviral syndrome at 3x the rate of IFR doesn't sound implausible for flu.
"After the first SARS epidemic, which sickened 8,000 people worldwide in 2002-2003, one study found that 27 percent of 369 survivors of that variety of coronavirus met the criteria for chronic fatigue syndrome several years later."
From this Washington Post article from May 2020 that warned covid would lead to an epidemic of ME/CFS-like illness: https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html
I remember Sarah Constantin had some Twitter thread about why chronic Lyme might actually be a real thing, I can no longer find it though I'm afraid...
The Australian study "Post-infective and chronic fatigue syndromes precipitated by viral
and non-viral pathogens: prospective cohort study" is not that useful for comparison, though.
We have to take into account the myriad of negative health effects of living under lockdown/in a permanent state of emergency?
We would have to compare "Long Covid" to other postviral syndroms as they occur DURING this pandemic. Not how bad they are in 2006. Who cares about 2006?!
My strong prior would be that ALL chronic conditions are worse now. That people's prodromes become syndromes faster, that subclinical illnesses become clinical.
So during the pandemic the health of the non-infected and infected should be considered "compromised" to varying degrees.
Does anyone account for this and actually do the relevant comparisons, assuming the data is available. Or uses a model that accounts for this?
Without that, I have low priors, that any of the discussion on Long Covid is worth taking seriously.
Many of these studies are indeed looking at contemporary control groups, and measuring difference in long-term symptoms between people living in the UK in 2020 with a positive covid test and people living in the UK in 2020 without a positive covid test, or something similar.
Personal experience on Chronic Lyme.
My wife was having health problems that no one seemed to be able to figure out and she started self diagnosing as Chronic Lyme. I pushed back after tests and one visit to a Lyme literate doctor alerted me to probable chicanery. It took a trip to the ER to realize she actually had a staph infection.
In this case, the word psychosomatic from her PCP was dramatically unhelpful. She had a real problem, just nobody was able to figure out what it was.
The chart with the 1 in 250,000 chance of having your house hit by an airplane seems likely to not be reputable. The source appears to be a 1997 revised 2nd edition of a self-published book called "Up to Your Armpits in Alligators? How to Sort Out What Risks Are Worth Worrying About!" by John Paling. I can't find any evidence the book is still in print or a review of it anywhere except a very old article in a paygated Wiley journal. Paling's bio is here: https://www.riskcomm.com/pdfdocs/JPfullbio2.pdf. It appears he was a zoology lecturer for a while at Oxford, then became a documentary filmmaker for 23 years, then founded something called the Risk Communication Institute in Gainesville, FL, and that was when he wrote the book.
I'm not going to say he isn't reputable or anything. I have no idea. But this is just a rabbit hole game of telephone being played with no way to get at the actual citation, unless you're going to buy the book to find out where he got the number from. It doesn't pass a basic smell test, though. Obviously, nowhere near 1 in 250,000 units of land surface area on the earth contain a house, and airplanes spend a lot of time not over land. The chance that, when they crash, it might happen over a city goes up a lot given most flight paths are between airports and most airports are at least near a city. But most airports are not near the densest part of a city, many have coastal or rural approach routes, flight paths intentionally take those routes to reduce the risk that they might actually crash over populated areas.
This reeks of a guy who probably cherry picked a year where some spectacular crash over a populated area occurred, saw in that instance 1 in 250,000 houses where it happened were hit with debris, and called it a day. It calls into question everything else in that table, too, because the entire graphic is just pulled from his book.
It also doesn't make sense that everything else in the same graphic is explicitly given as a period risk. If they were all 1 year, you might reasonably conclude this was also supposed to be the risk this will happen in the next year. Except the death by traffic accident is over a 50-year period. This also doesn't make for a useful comparison. Why is the chart presented in a ranked order when the top-ranked item is the risk of something happening over 50 years and everything else presented as the risk over 1 year? The probability of anything at all happening in 50 years is higher than the chance of it happening in 1 year. If you assume the risk of each of those is constant per year, then both #2 and #3 on that list have a greater chance of occurring over 50 years than #1.
I assumed the entries for which no time period was specified were per lifetime (so ~80× the risk per year).
The study that concerned me the most was this recent Lancet article on cognitive deficits after COVID. Not a perfect study by any means (they don't have true longitudinal data), but they are suggesting persistent IQ declines (no indication of recovery 9 months later):
1 point loss for respiratory symptoms at home without assistance
2 point loss for respiratory symptoms at home with medical assistance
4 points for hospitalization without ventilation
7 points if you were ventilated
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00324-2/fulltext
In terms of psychology I was interested to note all the various coping mechanism people utilized during the pandemic. One of the bigger ones was discounting any bad outcome short of death.
One thing I wonder about self-reported long-lasting symptoms: a healthy baseline may include some amount of negative symptoms, e.g. you still cough/sneeze on occasion, you are still fatigued on occasion, etc. Yet you consider yourself healthy. Then you get COVID and all these symptoms skyrocket and you are clearly sick. Now your symptoms slowly decrease day by day as you recover. *If they decrease slowly enough, might you never notice you've recovered?* Each day you still feel approximately the same as the day before, and even when you get back to your healthy baseline the symptoms aren't 100% *gone*, so unless you are good at comparing your state to that of a few months ago (which seems hard to me, unless you actually took notes on how often you were tired/coughed/etc in the past), you might now attribute your baseline fatigue etc to lingering COVID symptoms rather than healthy normal?
I had COVID back in December and had trouble with determining when it was "gone" for this reason. The only really big symptom I had was how tired I was. I would take multiple 2 hour naps a day and still sleep 9-10 hours at night. What I didn't notice until I started getting better was that I was also cognitively impaired (not major, I actually worked most of the days, but I had trouble remembering things and being creative). I didn't notice the brain fog feeling until I would wake up the next day and notice a difference, thinking it had cleared up. Then I would wake up the next day and have that feeling again, like my fog was lifting over a period of time. I've felt fine for many months, but really couldn't have ever given you a definitive "and now I don't have long COVID anymore" date.
I was wondering precisely this in 2019, about how often I actually get colds, and how long they actually tend to last for me (it seems like I've often had three weeks of coughing). So in January 2020, I started a spreadsheet tracking any daily symptoms. I did in fact have a moderately bad cold at the beginning of January, and then one with a day or so of fever and other significant symptoms while attending a conference in late February (I was definitely feeling self-conscious about it then!). But then my dataset runs out, since I haven't been aware of any symptoms due to infection, other than food poisoning once a couple months ago.
However, the spreadsheet did turn out to be helpful in identifying what times of year I have allergies in Texas.
Still, the point relevant to what you're saying, is that many people do have several weeks of coughing and other mild symptoms after a cold, but still notice some day that their symptoms are finally gone, even if they don't quite remember what day it was.
I shared this article in a group chat and the preview image was a photograph of a bat. Not really sure where it comes from since it's not in the post and could possibly influence a potential reader to the quality of the post
The bat to human origin story we all went off early in the COVID saga.
SARS-CoV-2 originated in bats.
First off, thanks for writing this.
Second, you say that the chance of long covid after a mild, non-hostpital case is about 20%. By “mild” do you mean showing at least some symptoms? Or do you include non-symptomatic cases as well?
What is the age dependence of (the debilitating version of) long COVID? Is it in fixed proportion to age adjusted IFR? i.e. can one take a flat 3X age adjusted IFR as your risk of serious long COVID? If so, then your age adjusted IFR (pre-vaccine) is about 0.05%, and your long COVID risk is about 0.15%, assuming you are in your mid thirties. This is much lower than you would get if you used age averaged figures.
It also seems weird to me that the effect of vaccination on long COVID risk should be so much more muted than the effect on death risk. I wonder if this could be an artifact of age stratification of vaccination rates (assuming risk of long COVID is also strongly age dependent).
This has some data on symptom duration per age group.
https://www.nature.com/articles/s41591-021-01292-y
This large UK study into long Covid in children, not yet published but reported yesterday by BBC https://www.bbc.co.uk/news/health-58410584 case-controls for reported symptoms to suggest 'between 2% and 14% still had symptoms caused by Covid 15 weeks later'... look forward to the paper when published, and declaration of interest, I work for the funder NIHR (though not in this area).
I had CFS/ME in my 20s after being in the hospital with a virus, It lasted years, but I think I know what happened. TLDR: started a physical problem, the real problem trained my brain, and caused prediction errors that outlasted the actual problem. I think the same thing often happens with other chronic pain conditions.
1. Not a contagious mind virus: First I'm male in my 40s, when this happened I was an undergrad, and I had no idea what it was, people didn't talk about stuff like this in the 90s, and the internet was a much smaller thing, so no one gave me the idea to be sick.
2. Like many woman, I have an auto-immune disease, specifically b12 and iron anemia, rare in 20 year old men. which I had but didn't know about then, but I now require treatment for monthly. (I eat a ton of meat,FYI, but my body attacks cells that produce enzymes needed to absorb it.)
3. I got better after about 2 years, but I didn't know I was better. I was used to feeling tired and achy. so my expectation is I would continue to feel tired and achy. I was making a prediction, it was wrong, and my brain was making the prediction come true.
I think the understanding that people have been trained to feel pain and can be trained to be pain free is helpful and non-moralizing. The initial pain and discomfort is real, the brain learns to expect it, and it becomes a very normal cognitive bias, that exists because our brains rock and are good a learning and making predictions.
One thing that always bothers me about these percent results, eg
<< And even though the study started with 5000 children, so few of them got COVID, and so few of those got long COVID, that the 2.9% turns out to be about five kids. I don’t really want to update too much based on five kids >>
is that you can actually estimate exactly how much to update. But there's not often much discussion on uncertainty in medicine papers.
The question is binary (either they have it or not). The 2.9% are 5 - so we have p*N=5 out of N=170 in a binomial distribution. The expected probability p*N of the event is 2.9%, and uncertainty on that probability sqrt(p*(1-p)/N) is around 1.3%. Using the rule-of-thumb hack that two-deviations correspond to pvalue < 0.05, you end up being able to say with "some confidence" that it's between 0.3% - 5.5%.
That was very back-of-the-envelope, and now we'd have to apply Bayes with a prior. But the short no-calculus story is: the interval is very wide. If you have any prior about that probability with a reasonable confidence interval (eg by what we know from other diseases) you should not change it much.
To illustrate the point, say your prior is 0.95%-1.05% (at two sigma level like above). Another back-of-the-envelope calculation then updates it to roughly 1.16% - 1.20%. I.e. a bit higher but not much. This was computed with a gamma prior for the binomial - because it's easy (see https://en.wikipedia.org/wiki/Conjugate_prior#Table_of_conjugate_distributions). It's actually not very good for modelling small probabilities with large-ish uncertainties, and as a result updates too fast away from zero. A proper discussion would end up giving an even more conservative estimate for the update.
> Unfortunately, having a symptom for psychosomatic reasons sucks just as much as having it for any other reason.
Psychosomatic conditions seem like ripe targets for psychedelic therapy.
I was also interested in whether anyone with CFS had tried MDMA or something. Couldn't find any reliable info from searching online.
> Flu is as common as COVID, but nobody really talks about it having a significant postviral syndrome so probably it’s not that bad.
Or maybe nobody had made this connection. I think COVID has been revealing a lot of long-term associations, like long COVID, that people hadn't previously considered.
I think there are a lot of things about flu that we've finally had confirmed by covid (probably aerosol transmission is the big one, but maybe also asymptomatic transmission). However, I do think that a common postviral syndrome would have been noticed, given that we figured it out for a really rare virus like Epstein-Barr.
I expect the rarity of EB to make it easier to diagnose postviral syndrome, not harder. Any symptoms that follow or persist a diagnosis would be immediately suspect. Most people who catch the yearly flu probably don't even know they had it. It's a signal:noise ratio problem.
Thanks, this is very useful.
On this point:
>>Of vaccinated people who got symptomatic COVID, about a third ended up with Long COVID symptoms, the same rate as in unvaccinated people.
One would expect vaccinated people (in the US at least) to belong to a group that is more prone to health anxiety and especially COVID anxiety than un-vaccinated people. There is so much correlation between vaccination and beliefs about the seriousness of the pandemic that that seems like a major possible confounder.
I was vaccinated, and seemed to end up with some sort of long-term fatigue after the vaccination. I've been repeatedly tested for COVID (including an antibody test shortly before the first vaccine shot) and always showed up negative. I thought it was just vaccine side effects, but my fitness tracker shows significantly decreased performance which remained low going on 6 months now, although I still feel just as tired after each workout.
I wouldn't describe myself as prone to health anxiety or COVID anxiety, just unusually unafraid of experimental medicine and married to someone with very strong COVID anxiety. Maybe my self-perception is incorrect.
I've also been recently found to be deficient in Vitamin D. Maybe the lockdown got to me. Maybe the lack of sunlight in hospitals is the entire cause of post-viral fatigue. Maybe someone smarter than me ruled this out already, but it seems suspicious to me.
Lockdown has almost certainly reduced vitamin D intake for many people, and while I wouldn't care to speculate about hospitals and sunlight, you personally should probably go sit in the yard for a few hours and soak up some autumn sun, along with taking some supplements too.
I'm wondering if anyone has seen research on people having a certain tendency toward this sort of effect? Ie, if you’ve had a post viral syndrome before, are you more likely to get long covid?
Personal anecdote:
As a teen I returned from a trip to Africa with mild but persistent symptoms. Fatigue, headaches, nausea - all of which intensified with any exercise. No acute illness but the ultimate conclusion of the doctors was that I picked up a virus that wasn’t that bad (hence no acute period of illness), but was unusual enough to my immune system (being from another continent) that it freaked out. I was sick about a year.
I am a woman and have vitiligo, an autoimmune disease.
I THINK I had covid early March 2020 but was never tested. It presented as a mild cold but I had fatigue for about three weeks afterwards.
I'm someone who was pretty strongly in the "Long Covid is almost certainly not a real thing" camp prior to reading this article. Now I'm in this, "I still think Long Covid is likely not a real thing, albeit with some exceptions camp" now.
First - Yes, the people with lung scarring and post-ICU syndrome and maybe some of the people suffering the misunderstood post-viral symptoms are truly suffering, but they're not suffering from Long Covid. They're suffering from lung scarring and post-ICU syndrome and maybe some of the people suffering the misunderstood post-viral symptoms. It doesn't make sense to classify these individuals as having "Long Covid."
This sounds like a semantic point, but I really don't agree that it is. There hasn't been a disease that's gotten this much public focus since... the Spanish flu? Definitely not one since our world got connected like this. This is the largest story of the past decade, and large stories like this attract hangers-on.
Maybe I'm cynical, but I think that if we accept that there is a vague condition like "Long Covid" out there that has amorphous symptoms, no ability to test and no ability to cure it, we're going to get hordes of people who (for whatever reason) start to glom onto it.
The quote about 20% of elderly flu victims not returning to normal makes the phenomenon seem less likely to be specific to COVID, imo.
It is because we tend to talk about symptoms more than mechanistic action. Plus long covid rolls off the tongue better than lung scarring/post icu syndrome/lymphopenia/increased il-2r cytokines etc.
I remember discussion of Long COVID that began way too early in the pandemic for there to have been much analysis of the few cases that could even have had it. I think it's often a significant conflating of multiple things, and as you mention, some have a clear alternate cause than some interaction of COVID in your system. Spending 4-6 weeks on a ventilator, as the early "Long COVID" patients might have been, has obvious reasons to create a long term health problem.
It really bothered me that by May 2020 Long COVID was being talked about like a real thing we needed to be worried about, despite now 15 months later we're still not sure it's even real. Long COVID went in my brain as "this is potential fear-mongering, because there's no way we know the 6 month symptoms of the virus already, let alone indefinite/permanent."
I do know one person who got COVID and is still sick from it about a year later. What sounds like has happened with her is that she got so sick that several things broke down in her body, which means she now has organ failure issues. Of course that isn't going to go away quickly, but I'm quite hesitant to say that it has anything to do with lingering effects of COVID itself.
"There hasn't been a disease that's gotten this much public focus since... the Spanish flu?" Polio got a lot of attention over the years, and when the vaccines came out in the late 50s and early 60s, people wouldn't shut up about them.
Fair enough.
This feels like a semantic distinction - "we can trace the long term symptoms to specific intermediary causes that themselves were caused by a covid infection"; what a layperson cares about is "will a Covid infection possibly make me sick for many months or even years?", not whether the mechanism is novel vs something "mundane" like scarring.
There are some important differences though. If you are healthy prior to getting COVID, it matters a lot if the people with long term symptoms are more like very old flu patients or getting ICU syndrome, instead of COVID itself hanging on.
Two points:
1. I'm pretty sure that in the last week I've read at least a half dozen articles in reputable news outlets that featured people who's covid infection was incredibly minor and are now suffering a vague series of symptoms. The articles all pushed the theory that something about COVID was creating these lingering symptoms; that's the same line being pushed by Long COVID support groups who are gaining public presence if not power.
2. This just kinda sounds like celiac disease to me. Sure, it is a real thing that really hurts a few people with a specific allergy, but the symptoms are vague enough that anyone who wants (or anyone with psychosomatic tendencies) starts also avoiding gluten.
This piece made me want to read a lot more about psychosomatic illness (ideally from Scott, but open to suggestions if people know of good resources here). In particular I'd like to see someone explain how psychosomatic illness differs from mental illness. My first instinct is to say that both originate in the brain, but mental illness expresses itself in "mental" symptoms (changes in mood, hallucinations etc.) and psychosomatic illness expresses itself in "physical" symptoms. But of course mental illness has physical manifestations as well (e.g. depressed people can have reduced sense of taste/smell). Is psychosomatic illness best understood as a subset of mental illness, or a distinct category?
Related question: when contrasting psychosomatic illness with non-psychosomatic illness, what's the term for "non-psychosomatic"? My first instinct was to use the word "real" but that implies psychosomatic == fake which isn't correct. Scott uses "organic" above but that feels weird too (not sure how psychosomatic illnesses are "not organic").
I may pick up Ross Douthat's "The Deep Places" which deals with his experience with Chronic Lyme. Seems like it's more of a meditation on the nature of chronic/psychosomatic illness than a medical perspective on the issue but it may be illuminating here.
"Organic" is the traditional term in medicine, for a condition caused by a disorder in some bodily organ other than the brain. Whether this is better or worse than the use of "organic" in food labeling is not clear to me. Neither seems as clear-cut as the chemists' use involving hydrocarbons or carbohydrates or whatever.
https://en.wikipedia.org/wiki/Disease#Types_by_body_system
Hey Scott, can you give us an update on how your workouts are going? (I'm not a paying subscriber so if that's paying-folks-only information, by all means ignore this.)
I have some rather personal data points. Putting the conclusion first: I find long COVID to be hard to study, because I maybe had COVID, and maybe long COVID. However the symptoms are conflated with other things. If I were asked if I had long COVID, I could not give a survey a useful "yes" or "no" answer.
I had Mono in 2018. It was bad enough that I took a trip to the ER, and got meds for reducing pain and swelling. Their testing confirmed I had it, days after a previous misdiagnosis of strep throat from inconclusive tests. After my main recovery, I had at least half a year of fatigue. I could do my desk job, but would need to sleep shortly after getting home. It seemed to slowly fade, and was entirely gone somewhere between 9 months and a year later.
I got sick from something at the start of March 2020. (following what were likely colds in December and February...it was a rough few months.) COVID tests were unobtainable. I don't recall breathing problems or loss of smell but it was something more severe than a normal cold, especially the fatigue. My city at that point was one of the few in the US with confirmed community spread. My primary care physician denied my request for an antibody test - indicating that it was company policy that the tests weren't specific nor useful enough. Overall I put the probability that I had COVID as undecidable.
I started lockdown early because of it, so I didn't notice for quite awhile that I had persistent fatigue. I mentioned mono because the new fatigue was exactly like the fatigue I got from mono. However since then I have identified: depression (medical diagnosis), burnout (self diagnosis), and stress induced physical problems (mixture of both, the strength of the symptoms at their peak was eye opening, and I will never have a shred of doubt again that such problems can be very real). I also commonly have headaches caused by neck stiffness caused by who knows what, likely unrelated to any potential COVID. All of this has combined and fed into one another to be one giant bundle of misery, but a combination of medication, help from family, quitting my job, and time have mostly abated the symptoms. The March illness was the kickoff point, though.
Oh, forgot to mention: I also clearly had brain fog or some form of mental difficulty after the March illness; I had lots of difficulty returning to work, but a few weeks after the illness ended I was able to resume enough to get some things done, but problems were off and on for one reason or another until I quit.
Did you ever manage to get an antibody test? In May 2020 I found a local medical center that was doing $20 antibody tests, and mine unfortunately came back negative, confirming that whatever I had in late February while traveling wasn't covid. (I had a fever, but the cough was clearly "wet", and I always heard that covid was "dry", though I don't even really know what that means.)
I think it's a matter of whether snot is involved.
FYI--there's a new Ross Douthat book coming out shortly on Chronic Lyme, which Tyler Cowen has already reviewed favorably.
What exactly is psychosomatic? When I was in kindergarten I suffered from severe eczema, the outbreaks started when I started school. A family member - a professional nurse - suggested to my mother that it was psychosomatic. The nurse based her argument/diagnosis on the fact that the eczema started when I went to school, and subsided during the school holidays, and thus concluded that the eczema was a stress reaction. Years later, when I was 25, I learned after testing by an ENT specialist, that I am severely allergic to dust mites. This explained my eczema, as follows: During my kindergarten years the teachers loved to have the children gather around in a circle, sitting on the floor, for sing song -and story time sessions. Though the floors were swept daily, they were not vacuum cleaned. This was South Africa in 1961 after all. Vacuum cleaners were a rarity in those days, especially in rural schools. I think its advisable to be skeptical of any diagnosis that categorizes a physical condition as psychosomatic.
Are those control group numbers for mental health for Amin-Chowdhury et al. normal? They seem rather high.
Perhaps the long mental health problems are from 'Pandemic Exists', rather than from anything particular to COVID. This might also be an interpretation of the increase in mental health problems after the Spanish flu - were former flu patients more likely to be admitted to mental hospitals or was this increase from the entire population?
Scott: what do you see as the endgame for COVID? I believe (courtesy Zvi) that the UK was at 90% seropositivity among its adult population in June, and then it had one spike (which much have left pretty much the entire adult population either vaccinated or recovered), and now it is having another. I am thus increasingly coming to the view that herd immunity is impossible to achieve even with 100% vaccination. So where is the cavalry? Do you think pediatric immunizations (when they finally become available) will be enough to stem the tide? (and what about the animal reservoirs - deer, cats etc?). Or is it just a choice between maintaining extreme precautions (isolation whenever possible, N95 when not) for the rest of your life, or giving up and getting on with life, trusting to the vaccine to do its job in protecting you? What is the plausible argument that says there is a better choice than this available?
And if the choice is indeed between `living like a hermit for the rest of your life' and `giving up and trusting in the vaccine,' and furthermore, if long COVID is at least sometimes psychosomatic, then arguably publicity about long COVID is an infohazard liable to boost your risk of developing long COVID.
it would be interesting if long COVID turned out to at least partially be an infohazard, since I'm not really aware of any others that can affect the general public. Add another entry to the SCP index?
On the more serious note, I think we have a chance of reaching a better endgame if the COVID variants can infect people faster than they mutate. My understanding is that most of these later waves are being driven by new variants, but those should eventually stop popping up (or at least slow down their appearances) as other countries get higher immunity rates. But I don't think there's much we can do right now if you're in a highly vaccinated country. My policy is to give up most of the time, and make an effort when hospitals are near overload.
On the other hand, talking publicly about how long COVID is likely to be psychosomatic is a form of vaccination against the infohazard, so maybe we should be doing that instead.
Everything suggests that more doses of vaccine lead to stronger protection, and infection+vaccine is stronger than either alone. I believe the 90% UK figure included seropositivity from vaccines and seropositivity from infections, but couldn't tell the difference between one or the other or both or multiple rounds of both. That leaves room for some point at which enough people have been vaccinated enough times and infected enough times that it stops having waves even as big as flu (if immunity lasts better than flu immunity seems to).
To date all of those x% positivity numbers have been wildly inaccurate. I'm pretty skeptical at this point.
As far as causes go, it could be dependent on rare, pre-existing antibodies that enhance the disease:
https://www.nature.com/articles/d41586-021-02337-5
There’s an interesting treatment in Therapeutic Plasma Exchange (the same technique used in recent mouse aging-rejuvenation studies (which amounts to mechanically filtering out the immune system and any accumulated damage to the blood)) which has shown promise in the treatment of long covid: https://www.youtube.com/watch?v=nnv0fcr_Hd4&t=381s
(And a list of studies here: https://www.apheresis.org/page/covid#therapeutic )
If Long-COVID is caused by the presence of something in the blood plasma (like a “rogue antibody”), then I hope these studies will help us get to the bottom of it.
I suspect you would not have seen this as of when you were drafting this piece, but this article in the NYT seems encouraging?
https://www.nytimes.com/2021/09/01/health/breakthrough-infections-long-covid.html
"Breakthrough infections are less likely to lead to long Covid, a study suggests."
Based on a study just released in the Lancet.
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00460-6/fulltext
"For the disease profile analysis, 3825 users from cases 1 were included in cases 3 and 906 users from cases 2 were included in cases 4. Vaccination (compared with no vaccination) was associated with reduced odds of hospitalisation or having more than five symptoms in the first week of illness following the first or second dose, and long-duration (≥28 days) symptoms following the second dose. Almost all symptoms were reported less frequently in infected vaccinated individuals than in infected unvaccinated individuals, and vaccinated participants were more likely to be completely asymptomatic, especially if they were 60 years or older."
For those group identifiers, cases 1 and 2 are people who were partially vaxxed or fully vaxxed, but then got breakthrough infections. "Controls 1 and controls 2 were matched (1:1) with cases 1 and cases 2, respectively, by the date of the post-vaccination test, health-care worker status, and sex. In the disease profile analysis, we sub-selected participants from cases 1 and cases 2 who had used the app for at least 14 consecutive days after testing positive for SARS-CoV-2 (cases 3 and cases 4, respectively). Controls 3 and controls 4 were unvaccinated participants reporting a positive SARS-CoV-2 test who had used the app for at least 14 consecutive days after the test, and were matched (1:1) with cases 3 and 4, respectively, by the date of the positive test, health-care worker status, sex, body-mass index (BMI), and age."
So if I'm understanding right, they seem to have a quite large comparison of breakthrough infections, against unvaxxed infections, and they're finding that long-lasting symptoms are significantly less likely in the vaxxed-but-still-infected group. The numbers seem large enough to have statistical power.
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00460-6/fulltext found that vaccinated breakthrough cases are 50% less likely to report symptoms persisting past 28 days compared to unvaccinated cases.
I had an extremely bad bout with flu turned into bronchitis turned into pneumonia when I was 20. I was stupid and arrogant with the illusion of invincibility that comes with youth. I figured I'd just eventually get better and made no specific efforts to do anything about it. I stayed out late, kept clubbing, kept drinking. I ended up remaining sick for over 6 months until I finally had to go to the hospital and get blasted with high-dose antibiotics and corticosteroids after some nebulizer treatments to clear up my lungs. After the symptoms finally went away, I had enough of an immune system drag that I caught another flu just two weeks later. That one wasn't quite as bad.
But it took a really long time to fully recover. I'm not just talking about persistent fatigue. I actually don't remember anything like that. The actual problem is I caught another flu, and not just flu but ended up with secondary bronchitis, every single flu season like clockwork. It made no difference if I got a vaccine or not. Every single flu season I'd catch flu, and every single I caught flu I'd get bronchitis. I also developed allergic asthma responses to grass pollen.
Until I didn't any more. Since about 32 or so, I haven't had bronchitis a single time. No more asthmatic allergy responses.
I think something like "long flu" is a perfectly apt way of describing this. I had a drastically weakened respiratory and immune system for over a decade, but it wasn't actually permanent. At least, I don't think it was. I have no idea if I have lung scarring or reduced capacity compared to before, but I don't really care. It's the more explicit symptoms that kept killing me, and they've been gone a while now.
I'm wondering if you may have linked the wrong article for "weird x-rays" by mistake? I was expecting an article about x-rays and lung scarring, but it links to "What Is the Evidence for Post-COVID Fatigue?".
I'm really annoyed that the BMJ risks table doesn't directly cite any sources and doesn't give any indication of who the stats apply to. I guess we can assume it's about the US? And they all specify a timeframe (which is good) except the most interesting one, the crashing airplane. I guess that one is easy to guess too (it's about lifetime risk... I assume) but they shouldn't leave it up to readers to guess the context, or to guess which if any of the article's five references back up the numbers in the table.
I wrote this in my earlier comment, but it's from a book called "Up to Your Armpits in Alligators? : How to Sort Out What Risks Are Worth Worrying About!" Specifically, the 2nd revised edition released in 1997, but the table is probably the same as from the original 1994 publication. It's written by John Paling, an Oxford zoology lecturer turned documentary filmmaker for National Geographic turned risk consultant. He wrote it at the time he was making the transition from National Geographic to opening up the Risk Communication Institute in Florida, so probably US centric, but the book was self-published, seems to be out-of-print, and you'd need to find a copy somewhere or email him or something to figure out what the *actual* source of the information is.
Frankly, BMJ should not have used it without citing the real source.
Agree that table is annoying. But it would be really nice to see something similar that was well done, ranking actual risks on a per year basis. I expect motor vehicle accidents to be #1, but how does shark attacks compare to bathtub drownings?
I have nothing pertinent to add, but I wanted to say I like the bat picture 😀
https://www.metafilter.com/192514/Long-Haulers-Are-Fighting-for-Their-Future#8143227
A comment about the difficulty of getting a diagnosis if the pain is the most obvious symptom.
****quoted in full****
*Many have been told by medical professionals that they’re just having anxiety or making up their symptoms. Even now, “it happens more often than not,” Lisa McCorkell of the Patient-Led Research Collaborative told me.*
Somebody needs to do a study on how many people actually make up their symptoms to get attention from doctors. Because according to doctors, it's an epidemic of extreme proportions, a plague ravaging health care services around the world, and it's taking up enormous quantities of their time that would better be spent elsewhere.
Let's ignore for a moment how self-serving that sentiment is; doctors are convinced that people will fake a huge range of symptoms just to be prodded for a few minutes in an exam room. I'm not sure what they think is so outrageously wonderful about that experience that people will commit to acting miserable to get in there, but they're pretty certain that a vast swath of the population is malingering performatively to just bask in their presence.
On the other hand, if you go to any message board dedicated to any chronic disease, one of the most popular conversation is 'how long did it take to get your diagnosis.' Patients trade stories of how often their symptoms were attributed to attention-seeking and malingering until they were able to convince the right doctor to do the right test, at which point they got a diagnosis. And that's for diseases that have definitive tests available; I can't imagine how bad it is for diseases which are diagnosed through exclusion.
I walked around with a painful hernia for four years. I'd been diagnosed with Crohn's, and every doctor I went to said the pain was Crohn's-related, and that there was nothing they could do about it, and I was in remission so it couldn't be as bad as I was saying. I was told by one GI doc that the pain I was feeling couldn't be related to the hernia that showed up on my CT scan. That same doctor put a diagnosis of hypochondriasis on my chart. Over a year later, a different gastroenterologist noted that my pain was in the inguinal area, and had I considered that it might be a hernia?
And the test for a hernia is, you know, 'turn your head and cough.' Once a general surgeon did that test, he had me set up for surgery two days later.
The post-surgical pain from the hernia was less than the pain from the hernia itself within 24 hours.
When huge quantities of patients have to go through an ordeal to get relatively common, run of the mill conditions diagnosed, there's something deeply broken about the medical system. I keep thinking about every doctor I saw during those years I was experiencing enormous pain from an easily curable condition, and how they're all still convinced I was making shit up, and I'm struck by the fact that there's no way for them to learn from these mistakes. Doctors have no idea how many of their diagnoses were later revised or contradicted by other doctors, so they have no way to learn which patients weren't desperate for their attention, but for medical attention.
And now that we're seeing a disease that's difficult to diagnose spreading in this new plague, the condescending, dehumanizing, contemptuous chant of 'it's all in your head, it's anxiety, it's depression, go away' (never accompanied by a psych referral, strangely), is ringing out loud and clear. And until we figure out objective ways to measure things like pain and fatigue, they're going to keep dismissing genuinely sick people as attention-seeking malingerers unless we find a way to let them learn from their mistakes.
posted by MrVisible at 10:50 AM on September 2
Yeah, 'all in your head'/'anxiety' is a frustrating bias. I've had daytime tiredness for decades (CPAP eventually helped) and for some years a weird "discomfort" in my thighs. Well, multiple doctors prescribed anxiety medication (occasionally SSRIs) even though I made it clear that I didn't have anxiety. They didn't SAY it was all in my head, but they acted like it. Of course, those prescriptions did nothing for my symptoms... luckily the leg thing mostly went away eventually.
And I know I'm one of the lucky ones (as my symptoms weren't debilitating).
Great post, but it's not so convincing in addressing the concern that seropositive and seronegative people have the SAME long-term.
It wasn't just WSJ opinion; NYT ran one too, pointing out:
NYT: "One peer-reviewed study of people who reported long Covid symptoms noted that most of those who were tested for antibodies that provide evidence of a previous SARS-CoV-2 infection had negative results. The level of symptoms, moreover, was virtually the same whether the person was positive or negative for antibodies. A second study, not peer reviewed, of adults referred for long Covid management similarly reported that no Covid antibodies were found in 61 percent of them, again without differences in symptoms whether testing was positive or negative."
https://www.nytimes.com/.../opi.../long-covid-treatment.html
Scott responds to this idea with:
"I feel like some of the case-control studies above, which clearly show that seropositive people have higher rates of Long COVID than seronegative people, are pretty convincing here."
Do they? And why then do they conflict with these two other studies find no difference?
The conflict between those studies seems like a crucial question to get to the bottom of, in establishing existence/non-existence of "long Covid" beyond the obvious respiratory/smell aspects. I plan to dig into it, but thought I'd mention in case others have answers already!
I feel too much attention is paid to antibodies. I suspect that its the TCells that do the work. Some people seem to clear COVID without ever raising a significant crop of antibodies. Unfortunately, it's a lot harder to test TCell reactions, so just about nobody does it. (Or, I suppose, it could be some other, less publicized part of the immune system. But some studies have found TCells remembering that COVID/SARS should be attacked, so that's what I'm guessing.)
Hmm, interesting. But are there any studies that show "Some people seem to clear COVID without ever raising a significant crop of antibodies"? I have heard anecdotes but not sure it's at all a significant thing. And if it's not, then "antibody" still basically works as a stand-in for "previously infected".
So, I have a question about the sermon re: CFS. If most people who haven't suffered from CFS severely underestimate how bad it is, then wouldn't this tend to lead to systematic overreporting of CFS? Like, if someone feels tired all the time because they have a demanding job, 2.4 children, and don't get enough sleep, isn't it possible that they might go to their doctor complaining of "chronic fatigue"? Or if they get COVID, are later surveyed about their symptoms, and the surveyor asks about chronic fatigue, they might say "yes, I've had that", even though their actual symptoms are much milder and more treatable than CJ and Heron describe. If there's a prima facie problem with this story, I can't see it. Do the numbers for chronic fatigue rely on something better-screened than self-reports? If not, wouldn't the systematic underplaying of chronic fatigue in our society lead to some people mis-self-diagnosing regular tiredness as clinical chronic fatigue?
I must confess (as one does after a sermon), I've been guilty of underestimating how bad chronic fatigue is in the past. But my updated world model doesn't necessarily include assuming everyone has the very bad symptoms CJ and Heron are talking about just because they use the words "I have chronic fatigue". But it's also possible that I'm so eager to avoid overcorrecting that I'm undercorrecting. Are there any good estimates of the prevalence of CFS either post-COVID or just in general based on some diagnostic criteria that aren't self-reports, so I can get a handle on the actual numbers beyond "exists" or "doesn't exist"?
So, this ties into my point above that case definitions are an absolute mess when it comes to chronic fatigue vs. ME/CFS.
Many studies use the Fukuda criteria, which has been recommended for retirement as it has post-exertional malaise and concentration problems as optional rather than required symptoms and so the view is that it captures too many general fatigue conditions rather than ME/CFS. Then there are the stricter 'Canadian Consensus' and 'International Consensus' definitions, that would exclude around 40% of those diagnosed using Fukuda.
The Australian (Dubbo) study cited above uses the International Consensus criteria and found a prevalance of 11% at six months post-infection. A similar longitudinal study (Jason et al) focusing on university students with mono gave a rate of 23% meeting at least one of Fukuda/Canada/IOM criteria at six months, with roughly half of those meeting more than one. If we assume that Canada criteria are the most exclusionary, that would tie in pretty neatly with the 11% Dubbo study. Based on this, it is reasonable (IMHO) to conclude that these infections cause ~10% of patients to suffer from ME/CFS (with PEM, 'brain fog' etc rather than just general fatigue), at least at the six month point.
General chronic fatigue rates are far higher - I can't find the reference but I believe the number was 18% of all adults self-report prolonged fatigue. This is why my earlier comment states that the ONS data is pretty much useless.
I think we may need to re-evaluate these numbers since we're now starting to deal with the delta variant and it may skew these numbers upwards if you're not vaccinated.
> maybe women’s immune systems are permanently upregulated to be prepared for attempts by the placenta to secrete immune-downregulating chemicals during pregnancy
This doesn't totally make sense to me, since women's immune responses vary during the menstrual cycle and start *decreasing* before ovulation https://helloclue.com/articles/cycle-a-z/the-immune-system-and-the-menstrual-cycle
For me the question is less "why are women's immune responses so strong?" than "why are men's so weak?" Like, what are the costs to a strong immune system? Aren't autoimmune disorders only a problem because of some (unknown?) features of the modern environment? And even today, arguably women get the better deal: yes, women get more Long COVID, but when men get COVID they're the ones who are more likely to end up in the ICU/dead. So why hasn't evolution built a stronger immune response into men?
[End contribution to the discussion; commence brain dump of things I find interesting/puzzling vaguely in the space of sex difference in immune response]
Wild speculation, but: is the fact that women are 1.5-2x as likely as men to be depressed *and* have stronger immune systems evidence for the "chronic psychitis" view of depression? https://slatestarcodex.com/2015/01/05/chronic-psychitis/ Anyone know of research on this?
Women also have had more COVID vaccine side effects, including (anecdotally) really weird periods (e.g. super long, heavy, or happening post menopause; self-reports in this thread: https://twitter.com/KateClancy/status/1379847815636135941) The stronger side effects obviously make sense because of stronger immune systems (and susceptibility to psychosomatics too), but this makes me realize that I don't understand why you wouldn't get post-viral syndromes after vaccines. I get "poorly understood," but I would have naively thought that in one way or another these syndromes are caused by your immune system never quite getting back to baseline after an infection. Why wouldn't that happen after the vaccine triggers an immune response too? Why aren't we getting Long Post-Vaccine-COVID? Can anyone who understands biology better than I do help me out?
Well, it's known that the immune systems need to be down-regulated to allow the placenta to remain unattacked. But I suspect that it only needs to be down-regulated in specific ways. But perhaps if we evolved with an expectation that adult women would frequently be pregnant, the non-pregnant periods would have significant up-regulation?
Well, perhaps. IIUC there's a lot of argument about that entire theory. The down-regulation is known, but the details aren't, and everything else about the theory is, I believe, speculation.
I'm no expert, but maybe the location of the infection matters; most of the pseudo-infection of a vaccine stays in your arm muscle. I also wonder if, somehow, live viruses can sometimes keep replicating in small enclaves that the immune system contains, but fails to destroy for whatever reason (what's Scott saying about "sympathetic magic"?) Covid mRNA vaccines in particular lack most proteins from the live virus, which could alter or lessen the immune reaction.
Thanks, that's helpful!
My bottom-line assesment of the draft version was: An average unvaccinated adult infected with COVID will suffer an average:
~5 days of Acute COVID
~20 days of Long COVID
~20 extra days of Being Dead
Being vaccinated probably knocks all of those numbers down, maybe by a factor of two, on top of the very substantial reduction in the probability of being infected in the first place.
The severity of Long COVID symptoms seems particularly hard to assess, but anything close to "I wish I were dead" seems to be extremely rare. Therefore, the risk of COVID can be properly rounded off to the risk of dying from COVID, plus a small correction factor that probably shouldn't tip the balance in most risk:reward calculations.
As someone who has CFS, I am a little relieved that the Long Covid odds seem lower than I feared, but I gotta say that the way section 4 presented it read as "it's bad, but hey, at least it's not CFS!"
What you wrote in section 5 was excellent though, and your compassion shone through, but since section 4 came first it did feel like a bit of a gut punch.
While I'm here and thinking about it, did any studies try and quantify fatigue levels? There's a huge gap between "bed-ridden", "Can't work", and "life significantly affected, but can still work (perhaps only part time)", but all of those describe some fraction of CFS patients....
I had the good luck of having a series of very stressful life events fuck me up, followed by a bad injury, followed by a stressful job.
This put me in an uncomfortable situation of having to meet my life commitments while suffering through a onslaught of severe headaches, fatigue and generally just wanting to die. This I was able to do... But only just very barely. This kept me miserable for many years, and I'm only recovering now.
I wonder how many people are in similar scenarios. No doubt there are some viruses that produce similar effects ad infinitum. But you can be swimming comfortably, and a few waves can have you gasping for air and desperately treading water. Once you're in the life hole, life has a way of keeping you there.
Sorry to hear that. (in the last few months, Scott wrote about how our society kicks people when they're down, but I wasn't able to quickly find the article.)
No bother. But I really wanted to make the point because while chronic fatigue is very real, so are life holes. Tools and strategies to climb out could probably benefit lots and lots of people.
Can we discuss the risk communication here that somewhat trivializes this when there are small rates but large populations affected? It's IFR all over again.
Based on Scott's estimates and our current policy trajectory, 50+ million people would have severe debilitating lifelong COVID.
How do I arrive that?
> 8. Your chance of really bad debilitating lifelong Long COVID, conditional on getting COVID, is probably somewhere between a few tenths of a percent, and a few percent. Your chance per year of getting it by living a normal lifestyle depends on what you consider a normal lifestyle and on the future course of the pandemic. For me, under reasonable assumptions, it’s probably well below one percent.
Given that the current public health policy approach to the pandemic (which I oppose) is essentially that we focus on vaccines (but with a slow pace globally given vaccine apartheid) and that everyone otherwise can self-protect while waiting for or declining vaccines, with an explicit or implicit assumption now with Delta's infectiousness that "everyone will get it." Again, I disagree with the fatalism here but that is the apparent approach given waning use of NPI policies. And I also think a harmful assumption is that people will get it once and that the level of vaccine- and infection-acquired immunity will hold, when in reality reinfection and breakthrough infections are known, and the risks with waning immunity are more of an unknown.
Regardless, let's assume everyone is infected once, 25% of humanity is fully vaccinated is now, 75% is not, and another 25% will be vaccinated before catching COVID. And let's assume Scott's rate ranges and simplify to 1% with COVID will get long COVID and vaccine halves that.
If there are hundreds of thousands of people in the US with truly debilitating Long Covid, where are they?
If they are debilitated, why would you expect to see them? They're tired, they may be bed ridden, they don't have energy to do even what they need to do, why would you expect to see them or hear from them?
FWIW, I've got a very sick brother (not COVID related) and he's essentially just dropped out of sight. I know about him because one of my sisters can talk to his wife. (OK, family problems *are* involved, but still...) He was too sick to ask me for help.
So why would you expect to hear from those who are severely debilitated?
My mother is one. Hundreds of thousands of people doesn't mean they'll be all that noticeable. Heart disease and cancer remain the top killers of Americans and kill over a million people a year, yet in 41 years, I've known only two people who died of either. Clearly, they're out there nonetheless.
Just an unsubstantiated general point-- it seems like every account I see of diseases where exhaustion is the major symptom is about someone who was previously high energy-- worked for a lot of hours, family and social life, and athletic, too. All of the sudden, they're flattened.
Surely being sort of average (fried by long hours, netflix is primary hobby) can't be protective. Or is it? Maybe exhaustion diseases are more of a risk for people who are frying themselves. Maybe it's only high-energy people who have enough to spare to write about their problems when they're exhausted. Or what?
Or is my sample biased by media preference for drama?
With CFS/ME the disease usually gets way worse following attempts to exert yourself (it's called post-exertional malaise, pem). If people find CFS/ME really early then maybe they can stay the rest of their life without being bed ridden by being very careful and not exerting themselves.
Who would you expect to hear about?
If someone is reclusive, and drops out of sight, you can't expect to notice.
If someone is "socially invisible" and drops out of sight, you can't expect to notice.
If Elon Musk were to drop out of sight, everyone would hear about it.
It's not exactly "media preference for drama", but you only have attention available to notice so many people. The people that lots of other people notice are the ones that you will hear about when something unusual, whether good or bad, happens.
This isn't mostly about famous people, just people who were very energetic before they got sick.
What or how do you view this relating to the suggestive IQ research done? (https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00324-2/fulltext)
I find the potential for moderate Covid cases to have long-term IQ impact to be one of the most concerning features of Long Covid.
Sex differences in autoimmune disease:
Chronic autoimmune diseases are tilted towards women, but diseases the follow from an acute autoimmune attack are, if anything, tilted towards men. Everyone describes juvenile diabetes as autoimmune and it is mainly men. The literature describes narcolepsy as autoimmune, and it has even sex ratio, maybe tilted towards men. Greg Cochran describes schizophrenia as autoimmune and it is mainly men. Narcolepsy and schizophrenia occur earlier in men, but diabetes earlier in women.
Scott, not sure if you saw, but this study about long COVID and vaccine efficacy against it came out on the same day you published this post (Sep 1):
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00460-6/fulltext
"We found that the odds of having symptoms for 28 days or more after post-vaccination infection were approximately halved by having two vaccine doses. This result suggests that the risk of long COVID is reduced in individuals who have received double vaccination, when additionally considering the already documented reduced risk of infection overall."
One way to test how much of long covid is Psychosomatic would be to see if Republicans or Democrats are more likely to have the condition. Or use an other proxy(e.g occupation,religion,population density,zip code). And or asking directly how bad they think covid is and how long the symptoms last before they contracted covid.
You would, of course, have to control for gender at the very least. But there are probably some genetic risk factors (maybe Ehlers-Danlos Syndrome (EDS) for instance) that could also be correlated with things like occupation, religions, population density, and zip code. I know that EDS is found to correlated with psychiatric comorbidities like OCD, anxiety, and bipolar for instance.
I agree you should control for sex, age and race and pre existing conditions, etc if you can.But it depends on how big the relative risk by proxy as to how important controlling for every possible confounding variable is before you can say anything meaningful about how psychosomatic long covid is.
I prefer Republican Democrat relative risk over other proxy's as there is a well known difference in how they perceive the risks of covid 19. As well as lots of data on how they differ on other factors.The only problem is that voting pattern data is not routinely collected in health studies. So you may have to administer your own study and not just analyze someone else's data. To get around this you could look at the correlation between democrat vote by zip code and long covid after controlling for age, sex and race. Ideally from a study that recruits its participants from people who test positive not just people who later say they have long covid.
I'm saying that if you find that Democrats are more likely to get long covid, you may be actually finding that women are more likely to get long covid (because women are more likely to be Democrats) or that people with EDS are more likely to get long covid (because maybe people with EDS end up being Democrats more often).
Also, if you found that Democrats are much more likely to get long covid than republicans, you still don't have any good evidence that long covid is psychosomatic.
Controlling for sex, age, race, pre-existing conditions, etc aren't just something you do if you can. They are what you do if you want to have any hope of determining causality. If you can't control for everything (as you sometimes can through randomization), then you need to look at the theory to determine what needs controlling. Just looking at politcal affiliation will give you a pretty bad model.
What I was trying to get at was if you found e.g democrats are 10 x more likely to have long covid it couldn't realistically be explained by other variables.As well as you would only need to control for the major confounding factors not every conceivable variable.
Age and sex would be the most important variables to control for.I don't know what the independent effect of race would be but probably smaller than sex. Pre existing conditions probably would not differ too much by voting patterns after controlling for other factors but I am not very sure about this.There is or so a risk of over controlling, for example controlling for occupation as it taps in to the same construct as R vs D
> Hans Asperger was a Nazi and I still use his diagnosis
Is this a US/UK difference? I thought at least in the UK we called it all Autism Spectrum Disorder and didn't use the term Asperger Syndrome anymore.
your risk of breakthrough covid is probably really really serially correlated
Immunocompromised people make up a huge proportion of breakthrough infections; almost half in one study, despite being like 3% of the population.
If they get vaccinated at the same rate as everyone else then, by Bayes' rule,
P(bt|ic) = P(ic|bt)P(bt)/P(ic)
so that means if 1% of vaccinated people get breakthrough infections each year then vaccinated IC people have about a 1/6 chance of getting covid in a particular year(!); if 10% of vaccinated people get breakthrough infections in a year, then we're looking at more than one infection per year for the average IC person(!!!)
the law of total probability or something means that a vaccinated non-IC person has a breakthrough infection risk of
p(bt|~ic) =(1 - P(ic|bt))p(bt)/p(~ic)
ie about 0.5% if p(bt) = 1% and about 5% if p(bt) = 10%
this is assuming IC people are vaxxed at the same rate as the general population, which maybe isn't true. if every IC person in the US is vaccinated right now, then P(ic|vax) = P(ic)/P(vax) ~= 6% of the vaccinated population. then the IC get infected at a rate of about 8%/yr (at a 1% breakthrough rate) to 80%/yr (at 10%), while the non-IC get infected at about 0.5%-5%/yr
this suggests to me that probably 10% is too high, because otherwise there'd be sensationalistic news articles about Guy Who Got Covid 3 Times After Being Vaccinated and i haven't heard about that at all
obviously you might end up immunocompromised in the future, but it's obviously strongly serially correlated. so your estimated lifetime risk should (I think) be a lot closer to whatever you get by cutting your annual risk in half, assuming you're not currently IC, and close to 1 if you are
breakthrough infection risk probably varies with a bunch of other serially correlated stuff like age and sex, too, but i find it hard to believe any of that is going to make a big difference compared to being immunocompromised or not. previous covid infection might matter? but idk
all calculations were done before 10 am so i cannot be held responsible for any errors
Great article as usual.
Is it possible that patients diagnosed with CFS/ME don’t get better (as compared with people informally deemed as having postviral syndromes) because they are more likely to be medicated for it (because they and their doctor have decided it’s serious, won’t be going away on its own, and medication for it will be covered by insurance if a formal diagnosis is on file)?
I ask because I have known many people who, once prescribed Adderall for fatigue or a similar malady, have a hard time functioning without it—which would certainly make them answer on a survey that, at present, they would function far suboptimally if they stopped taking stimulants. Both because of downregulation, and because once you get used to a new baseline with a stimulant (including caffeine or nicotine), the prospect of living without that stimulant certainly could register as a chronic disability.
If that stimulant is caffeine or nicotine, we say this as a joke (but deep down still mean it); whereas if it’s a prescription drug, we are being literal. (Even if originally we were only going along because otherwise our medicine would cost five times as much.)
I suspect that a lot of people with CFS/ME do try stimulants at some point along their diagnostic odyssey. Stimulants probably do help them get stuff done, too. But the chronic fatigue is only one part of the disease. (Chronic fatigue syndrome is a really bad name for what they experience.)
CFS/ME is marked by post-exertional malaise which involves having an adverse reaction to exertion. So, someone with CFS/ME who started taking Adderall and then started to work or exercise or whatever would then have a crash where they would be bed ridden for a time or would at least feel that much worse.
I know…I sort of suspect I may suffer from a version of this cycle myself. (Of course, it’s always hard to differentiate one’s baseline from what’s normal and what’s diagnosable. But these aren’t just the idle musings of a hypochondriac; it’s been a 6-year dialog with my physician to try to solve a number of interrelated symptoms.)
The question isn't really "do people suffer long-term effects after COVID infection" but rather "is there a specific 'long COVID' that's different from other viral infections?". And the answer to that - with the exception of anosmia - pretty much seems to be no.
“Getting hit in your home by a crashing airplane”?? 1 in 250,000!? No way. That would be 1200 people in America alone dying from this every year. Whoever wrote that is completely full of shit.
Re. Chronic Lyme Disease, the Wikipedia page you linked is constantly monitored by anti-CLD fanatics who reverted each of my attempts to make the page less biased within hours. Every one of the Lyme studies that the NIH and the CDC list on their webpages to dismiss CLD is so fatally flawed as to be completely valueless. One, for instance, "proved" that chronic Lyme doesn't exist by showing that none of the patients in a set of patients who complained of chronic Lyme /and tested negative for Lyme disease/ tested positive for Lyme disease.
The suppression of CLD is the only actual legit medical conspiracy I know of, where a bunch of people packed the IDSA panel on Lyme, deliberately excluding anybody who believed in chronic Lyme, and never considered any of the papers which suggest that chronic Lyme exists. It was a total kangaroo court, rigged from the start.
A scary thread. Maybe you could do an update on Long COVID risks? Please inject some hopium to my veins. https://twitter.com/IanRicksecker/status/1478611650760437765
Would pay money to see how this analysis should be updated in light of the much more rapid spread of the omicron variant, especially that final "below one percent" number.
Long covid still seems like this huge question mark that's looming large in the minds of my progressive friends, especially now that Fauci has said everybody's gonna get the thing. Even I'm creeped out by the way that official sources haven't come out with new research showing the phenomenon has decreased; they've just kinda stopped talking about it.
An update might be good in light of the French study showing nearly all symptoms correlated to belief in covid, none but anosmia from actually having had covid: https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2785832
Which was a replication of some German research showing the same thing, can't find the original study though: https://twitter.com/andrew_croxford/status/1473408952436240392?fbclid=IwAR0ZhCEf-0B2Dz4wg-pDQVwg-ecPckUTacepPOAc9yERkaMQ75nIBAvlTF0
Who wrote this? I have chronic Lyme and long Covid, and assure you they are very real. Like Lyme, Covid seems to hit weaker areas of your body. This has been the biggest nightmare I have lived through.