They seem to be taking offense to being told they have a mental illness when that’s not their experience of what’s happening to them. It doesn’t seem that they have an issue with the existence of mental illness. In my opinion, it doesn’t sound like prejudice, just frustration.
That's true. Having said that, a panic attack is a clear diagnosis that has next steps attached to it. I think people with CFS often get told a variation on it being in their head, now go away. I can see how that's frustrating, and I think it's distinct from prejudice. It's like those college health center stories lots of people have. For instance, I once had pneumonia and was told it was probably just allergies. I wasn't too happy, and it wasn't because I had any hostility towards allergy sufferers.
Or it might have nothing to do with mental illness. Or it might be a combination of etiologies. Or it might exacerbate preexisting neuroses. Whatever.
Just be aware that the consequences of the assumptions you express in your comments are more subtle and more insidious than doctors insulting patients overtly. Most people won't scoff in your face, or accuse you of faking it. They hold such opinions quietly, or express them behind your back. Sometimes they'll joke about your neuropathies being "all in your head," but mostly your co-workers (if you're still trying to work), and even your friends and family, will simply choose to pretend your disease doesn't exist. It's a severe form of gaslighting, since your core existential condition is being perpetually ignored, while another co-worker with a proper label, say "diabetes," receives a normal, appropriate amount of recognition, sympathy, and accommodation for limitations.
It seems remarkable, I know, but the human brain still has major trouble imagining anything that hasn't yet been proven or discovered. This is nothing new. Throughout history we've blamed many diseases on the sufferers until we understood them better.
I've generally felt entirely unqualified to comment under ACT/SSC posts but as I have this diagnosis this is finally my chance... though I should stress just my own views and not necessarily that of the "CFS community" if any such thing really exists:
Firstly, I don't think it's just patients that have such a prejudice. My first experience on being diagnosed was being told by my physician (in response to me asking I how could have contracted a disease that I heretofore didn't believe was real) "no no, there's something actually wrong with you, not like those women who just won't get out of bed all day".
Secondly, and more importantly in my view, a lot of criticism of (IMV) ineffective therapies is framed as prejudice against mental illness. Please trust me when I say that if I could wave a magic wand such that a psychological cause was proven and the two main therapies (CBT/GET) were massively effective, I would jump at the chance. I would much rather have a treatable mental illness than this vaguely defined condition whose prognosis is poor.
And, trying to be as aware of any of my own biases as much as possible ('am I dismissing this because I don't want to believe?'), I still land on the fact that these 'potentially effective treatments' really have an incredibly poor evidence base. The results from unblinded trials with subjective endpoints are consistent with little more than a transient placebo response - the effects are not matched by improvements on objective measures and the effects have never been shown to be maintained at long-term follow up. Couple that with multiple patient reports of getting worse or even being permanently damaged by GET, and I would recharachterise "rejecting potentially effective treatments" as "rejecting a potentially harmful treatment whose efficacy is poor at best, non-existent at worse". The fact that NICE has now moved away from approving these treatments suggests that perhaps the patients might have had a point?
I suppose the final thing that makes me cautious about accepting a psychosomatic explanation (apart, again, possibly from my own biases) is that whilst there is a long history of unexplained conditions throughout the ages as discussed in this book review, there is also a decently long history of conditions being ascribed as psychiatric in nature right up until new evidence comes along, at which point the people who were pushing that narrative seem to move on without any kind of reflection. See stomach ulcers being ascribed to stress, or refrigerator mother theory for autism, or the 'multiple sclerosis personality'. That doesn't mean that CFS will similarly be debunked, but that we should be very cautious about assuming that anything that we cannot explain easily must all be down to "negative beliefs"
Thanks. I think this is why it's important to distinguish between criticism of ineffective treatments and debates about physical/psychological in nature. Personally I'm interested in the latter *only* to the extent that it leads to shoddy treatment and shoddy experimental practice.
The problem with the psychogenic explanation is not only that it's a cop out ("I can't explain this" = "the patient is imagining things") but I think it also explains why some of the evidence base is so poor. Researchers in this field have been blasé about things like the placebo effect because they in some part view their own treatment as being placebo in nature, and blasé about subjective measurements because they view the condition as entirely subjective. It's how we've ended up with apparently serious research output that recommends a process that has multiple sclerosis patients jumping around chanting 'I'm strong like a tree' [1] as being effective for ME/CFS without a scintilla of consideration as to whether that might imply the trial design is nonsense. It also leads researchers into a bunker mentality in which *any* criticism is viewed as bad faith by 'militant activists'.
On the CBT front, in addition to the points raised by C-- below, I would add that CBT in the ME/CFS space has traditionally differed somewhat from that provided for other chronic conditions. In the latter, it's deployed in a supportive/adaptive role in the sense that it's about how to cope with the condition. In ME/CFS it's generally been about correcting the 'maladaptive belief' that you even have the condition in the first place. The recent NICE guidelines do continue to recommend CBT is offered to those who want it, but that it is deployed as for chronic conditions elsewhere.
My sister was never diagnosed with cfs, but she experienced symptoms that match what is described here. The story of how she recovered is pretty unbelievable (as in, I literally don't think anyone here would believe me if I described it), but it was connected to another somewhat known but very poorly understood condition/phenomenon. So I have to ask, have you ever experienced sleep paralysis?
I'm interested! Bordering on the edge of the symptoms described here, have occasionally experienced sleep paralysis in the mornings, chronic snorer (sleep apnoea?)
If that's something you would feel comfortable telling us, I, for one, would love to read it. I had a few events in my life that I had to describe "You would not believe this, but...", but none of them were all that important.
Thank you for sharing your experience. It takes bravery given the widespread skepticism regarding CFS.
As far as I know, I have never met someone with CFS. There is a strange series of questions I've been wanting to ask, and I'm self-centered enough to hope that this is an appropriate moment.
What happens if you have to run to save yourself from grave bodily harm, say from a dog or a bear? I can imagine someone with CFS predicting, 'I run until I'm safe inside a house, and then I'm more exhausted than ever.' But what if the dog/bear finds its way into the house, and the cycle of running for shelter repeats?
To generalize, if someone with CFS has to run for their life for 30 seconds, then gets a 10-second breather, then has to run again, do they collapse sooner than 1) an otherwise comparable person with neither depression nor CFS, or 2) an otherwise comparable person with depression but not CFS?
And when the person with CFS does eventually collapse, does the cause differ from the cause of persons 1) or 2) collapsing?
Happy to respond, though I should point out I'm what would be classified as a 'mild' case in the sense that I'm in the 25% of patients that still works (an office-based job that allows some working from home and involves little physical activity, thankfully) - to give a sense, my step count reduced from ~7k/day pre-illness to, with pacing, just under half that today. Though during one flare I had a month averaging <400/day where I basically couldn't do anything. Some people have it far, far worse.
I think the key thing to bear in mind is that the cardinal symptom of ME/CFS isn't really tiredness per se, it's post-exertional malaise (PEM) - with the emphasis on 'post'. So if I overdo things (not avoiding bear attacks, but say my wife is ill and I have to look after the kids, or I can't find a parking space and have to walk further than planned), the payback really comes the following day. So, in your example, I could run if needed. However, it is the following day that the PEM really kicks in. It's hard to describe, more like when you're just starting to come down with flu, or a really bad hangover*. Everything becomes an effort: moving is hard, thinking is hard. I find I will lose words, can suffer nerve/joint pain. If I've really overdone it, I might become hypersensitive to sound or touch, and find comprehension difficult. At my worst (the 400 steps/day period), I would watch TV and whilst I could understand each individual word, I struggled to understand what was really going on and what people were saying - it was like how I imagine dementia to be. The delayed nature of PEM to my mind also is an argument against the fear/deconditioning hypothesis - if it was fear of action leading to deconditioning, why would the symptoms start with a decent delay *after* activity.
So, back to your bear question: if it was Day 1, I would escape the bear. If it was the following day, it would eventually reach a point where I would no longer be able to will my limbs into action. In terms of comparing with depression (which I've never had, but know people that have), I would draw the following distinguishing factors: 1) no lack of motivation - ask an ME/CFS patient what they'd do without the condition and you'll find we have quite a long bucket list; 2) no anhedonia - even at my worst I've found I can find a grim laugh somewhere.
*Interestingly I've found people recovering from Covid or EBV describe similar symptoms. We seem to have drawn a bright line where this is 'normal' if it lasts for a couple of months and then resolves, but is psychosomatic the moment it crosses that line - yet AFAIK the mechanism for these symptoms in the first couple of months is also not well understood.
Thanks for the thoughtful response. I'm glad you only have a mild case. I hope it resolves somehow, so you can tackle your own bucket list.
With regards to your final paragraph, I wonder if there's a continuous probability distribution for the duration of this class of symptoms, and doctors have somehow decided that any symptoms lasting beyond e.g. 2 standard deviations are more likely psychosomatic than not. Ideally this would have additional data behind it, rather than just distance from the median. (This is just speculation on a subject I have no familiarity with.)
The "gun to the head" argument is the simpler version of your thought experiment. Apparently some people believe that if you could do something with a gun to your head, you should be able to do that same thing anytime. If you can get out of bed when the house is on fire, you should be able to get out of bed every morning, which of course is totally irrational. Chronically sick people have a perfect right to strive to manage their condition so they're not so miserable and constantly deteriorating.
Here's another way to think about it. Research shows mitochondrial energy production is severely limited with CFS/ME. This means when you absolutely have to force yourself to do something, you're using primarily stress energy to get it done, which contributes to the disease cycle just as surely as injecting poison, since the adrenal system has been so chronically abused. So you learn to avoid adrenal activity as much as possible, and you do your best to manage the impact when it can't be avoided. That's the simplified bottom line, but the spectrum is way too diverse to make the kind of summary comparisons you're attempting.
There is good reason for this among women whose symptoms are dismissed as “in your head” and therefore unserious as a matter of course. Studies about ER opioid prescription bear this out, but here’s an anecdote: I had chronic pain for 15 years and was waved away with OTC painkillers, then they finally cut open my gut and found an inflamed hellscape of scarring and adhesions. Years later and unrelated, I had 10/10 acute pain and was sent home from the ER with OTC painkillers; they found out upon my return to the ER that it was internal bleeding. I narrowly escaped death. In the future, if a doctor dares to say that my physical symptom is caused by a psychological issue, I will rage even if there is a chance they are correct.
"Extremely rare" in the sense that it's a small percentage of the total number of patient interactions with medical providers and "extremely rare" in the sense that it hardly ever happens are different propositions, given the high number of interactions. And given that it's known that both sex bias and racial bias are issues in pain management (a quick search for "[racial|gender|sex] bias in pain assessment" will turn up plenty of recent research), I'm not sure it's reasonable to say that this isn't normal for any race or sex. It doesn't seem to be all that uncommon.
Sounds shocking, doesn’t it? My chronic pain condition is endometriosis and affects 10% of women. Diagnosis is delayed on average 7-10 years (plenty of research on this). The internal bleeding was a very rare medical event, but I was at a top ranking teaching hospital in a coastal urban center. It became a case report and they changed some of their procedures in that department afterwards. As Mario said, bias in pain management is well documented. It is not rare.
Yes as I said verbatim, the internal bleeding was a very rare medical event. The dismissal of the extreme pain with a mysterious cause is *NOT rare*. The attending could not be bothered to admit me after initial tests were inconclusive. As I also said, endometriosis affects 10% of women, ~200 million. That’s a huge number of people with chronic pain and abdominal inflammation/scarring who are told it’s no big deal for the first decade of suffering.
Another way you could look at it is that, statistically, doctors will sometimes encounter patients they don't understand. Combine that with a bloated healthcare system leaving doctors perpetually rushed, and you have a perfect environment for rationalist doctors to triage the difficult patients.
Which is exactly what happens, all too often. If you want, you could argue this is the most pragmatic solution, since the system works relatively well for the majority, but do not fool yourself into believing these "bad" experiences are anomalies. They are built in, and predictable.
This is not true. So. Very similar to the famous case of doctors telling women with extreme period related suffering to faff off or saying that various female reproductive medical procedures are painless when they clearly aren't. Or the famous air conditioning issue where it was systematized for a 155 pound 40 year old suit wearing man.
Interesting! I like that this comment finally gave me an excuse to skim Bentham's essay where he argues against banning homosexuality. This passage on masturbation comes at the end, and his point is that no country bans masturbation the way they ban male homosexuality, because obviously they can't, and since masturbation is obviously so much more exhausting than homosexuality, and there's no other harms from homosexuality (at least, in Europe, where women's sexuality is highly regulated - in Tahiti (Otaheite), where people are free to have sex when they want, women would have a right to complain every time two men waste their sex on each other instead of satisfying their demands), they should legalize homosexuality everywhere. (And also should cease the practice of burning the animal that is the victim of bestiality.)
Well what do they mean by exhaustion? Sex with a lover lasts much longer, (hopefully) than masturbation. Do they mean that masturbation gets me to the soporific state sooner? (I'd agree with that.)
You might already be aware of this, but people in the 18th and 19th centuries had a lot of very strong beliefs about the human body that turned out to be nonsense.
He means the loss of vital essences. You must remember Bentham's framing here- the scientific belief at the time was that semen was some kind of distilled elan vital of the male body, and thus masturbation was a waste of this energy.
I would argue this is actually a case of Orientalist thought influencing the West at the time, as the belief that semen = life-force (or rather, yang energy) was extremely prominent in Chinese culture through Taoism, with the belief that men who masturbated excessively would become frailer and more feminine as they disturbed the balance between yin and yang energy in their body. In a counterpart to this it was believed by some Taoists that through the right sexual practices a man could become immortal by attaining a perfect harmony between yin and yang energy in his body (as sex was seen not merely as a wasteful release of energy, but an exchange of it between sexual partners).
Well, the actual word Bentham's using (at least in the quote above) is "enervating." Not "getting tired out," in other words, but "losing vital strength."
I suspect that the background framework for any premodern/early modern physician who's thinking about these questions isn't really subjective sexual experience at all.
Rather, it's the blatantly obvious behavioral differences between intact and gelded male domesticated animals. You could easily get from those observable differences to a paradigm that's something like this:
1. Only males who keep on making sperm can sustain a high level of aggressivity.
2. Volume of sperm thus seems closely correlated to aggressivity.
3. In general, then, we'd expect depletion of sperm to result in enervation.
4. But intact males don't manifest any obvious loss of aggressivity after having sex.
5. That suggests that enervation for some mysterious reason only results from loss of sperm for reasons *besides* genital sex.
Huh? OK unless I've gotta squeeze, (lover), I get a stiffy every morning ~5-6am. I masturbate, and go back to sleep... because it is soporific. I don't think this has caused any health or happiness effects. Well only as much as not having a lover sucks.
I hope you mean "100% 'partly,'" Unsigned. The evidence that anti-depressants have effects beyond placebo for many patients isn't disputable. But certainly the promotion of biological as opposed to psychological/psychosocial etiologies is motivated in part by the fact that the explanation is moderately destigmatizing.
"because it isn't *really* a psychological problem if you can dig deep enough and find an explanation in tissue"
I don't get why. Unless we take a radical dualist position on the mind body problem, presumably it's possible to find an explanation for every thought, emotion, and personality trait in tissue. Why did the criminal commit murder? Because such-and-such neurons are linked in such-and-such a way, giving him a propensity to murder; and certain neurons fired at the right moments, causing his hand to lift up his gun and squeeze the trigger. But this does not mean his propensity to murder is not really psychological, or even that he's not morally responsible for his acts.
I don't think general reduction to neuron-level description is a relevant frame for this, dionysus: correlations between actions and neural states answer "how" questions, but not "why." All mental states are equally reducible to material correlates, even for non-Cartesians who view consciousness as emergent from a material base. All the reduction does per se is reduce the behavior from a holistic to a granular model.
However, when you specify that certain neuronal patterns yield propensities to murder, you are not just describing the specific material correlate to a mental state, you moving from description to analysis, distinguishing a particular neuronal array from a regularity--lack of propensity to murder--which does not share the same neuronal pattern or behavioral correlate. That can indeed have explanatory value.
We see this sort of thing in forensic practice in cases of CTE, where, for example, aging ex-athletes in contact sports exhibit bizarre and violent behavior, and an explanation is provided by post-mortem observation of brain abnormalities caused by a history of concussions. Whether the propensity for violence is "psychological" or not depends on how you use the term, but the neuronal pathology certainly affects judgments of moral responsibility. Those are cases where reduction to the neuronal level provides explanatory power, and there are many others.
CFS is an affective/behavioral pathology. It's a broad enough category to expect there are multiple etiologies. All may be "psychological" (generated by habitual personality features and personal experience), all may be organic (generated by genetic or environmentally produced drivers, outside the awareness and control of the individual), or there may be many complex combinations of both (place your bet here).
Well, this is the crux of the issue. Psychopaths are held to be morally responsible for their antisocial behavior, whereas those afflicted with many other conditions aren't. Everybody is obviously incentivized to absolve themselves of responsibility, and the less your case is considered to be amenable to willpower the better.
"Everybody is obviously incentivized to absolve themselves of responsibility"
After the fact, of course. Many people do this pretty routinely when they've caused social damage--make excuses that shift responsibility/blame. ("I'm sorry I behaved that way, but I wasn't myself because of a migraine and a sleepless night . . .") It's standard in all kinds of legal defenses. And in both cases it tends to work to a degree--we forgive people, we mitigate sentences . . . if we believe them and judge the excuse sufficient.
Why you think this is not true of "psychopaths" is a puzzle to me. My understanding is that it is ordinary for diagnosed psychopathology to be introduced as evidence in legal proceedings, both pertaining to guilt and to sentencing (length and conditions of incarceration). Claims concerning any level of cognitive/affective dysfunction are subject to examination and adjudicated by the court. But perhaps you are using some restricted definition of "psychopath." Would Ted Kaczynski have fit your definition? His psychopathology allowed him to evade the death penalty (apparently against his wishes).
Quote: "The insanity defense is generally not available to psychopaths under U.S. legislation, because they fail to satisfy the conditions outlined in the M’Naghten Rules. They can identify and provide full details of the crimes they committed, and they know that carrying out actions of this nature is legally wrong."
The Kaczynski case is entirely in line with this. He considered himself sane, and the insanity defense of his lawyers was based on additionally diagnosed conditions.
Thanks for replying with data, Xpym. Your citation supports your use of the term, and under that use you're correct when it comes to verdicts of "innocent by reason of insanity."
Having cultivated expertise on this over the course of many minutes, including research beyond even Wikipedia, the reason your use of the term works seems to be because in legal contexts, the definition of "psychopath" is generally entirely in terms of conduct: e.g., failure to conform to social norms; deceitfulness; impulsivity; aggressiveness; reckless disregard for safety; lack of remorse (this is abridging the DSM-IV). These all describe histories of antisocial behavior, and it makes sense that histories of antisocial behavior cannot be used to mitigate punishment for antisocial behavior. Consequently, your sentence, "Psychopaths are held to be morally responsible for their antisocial behavior," unpacks as, "People with established histories of antisocial behavior are held to be morally responsible for their antisocial behavior." (Lack of remorse is an outlier, but more below.)
In Kaczynski's case, he refused to use the insanity defense, but his lawyers ultimately brokered a deal based on a diagnosis of paranoid schizophrenia. Some definitions of psychopathy include schizophrenia as a common component. In fact, there are many other challenges to the adequacy of the DSM-IV definition, and Kaczynski would fit some of them. Some neuroscientists, including Antonio Damascio (who is both a researcher and a good popular science writer, though not to my taste), have found that the empathy deficits linked to behavior common to psychopaths are associated with damage or deformation in certain areas of the prefrontal cortex, leading to difficulty in engaging ethical calculation in action choices. (This is Wikipedia stuff.) This would alter the role of lack of remorse in the DSM definition to the essential feature. If that were so, it could change both the forensic tests for psychopathy and its legal status.
When I sent my message, I replaced John Hinckley, much in the news lately, with Kaczynski. Hinckley was, in fact, sentenced under an insanity plea--perhaps I should have chosen him. However, I actually learned a lot trying to put together this face-saving response, which gives you the win in the argument.
“But what is CFS really? Schaffner’s view is that it’s the newest explanation for an age-old set of linked experiences that people have suffered and written about for thousands of years.”
This doesn’t count as an “explanation” to me, just a characterization. *Why* are they linked, what if anything unites the cases? A viral agent, a hormonal imbalance, a psychological cause, mere malingering? Perhaps a combination of the above, different ones for different people? Perhaps none of the above, maybe people are mistaking causally and experientially distinct phenomena for a single thing and inventing a false category?
It’s fine, even advisable, for the author of a book on the topic to remain agnostic on this question, since it seems unsettled. But that refusal to explain shouldn’t be presented as an explanation in itself. I can’t tell if this is principally the book’s or the reviewer’s failing.
It’s fine to not be more specific. But to present that as an explanation, rather than the absence of an explanation—that’s what bothers me. Again, no idea if that’s a fair representation of the book, this could be purely a misrepresentation by the reviewer.
Hang on, seems like you’ve got the book and the reviewer backwards. They’re not trying to explain the underlying cause in this passage, they’re trying to explain CFS, the current medical term, which is distinct from the historical phenomenon. The historical phenomenon, as alluded to later, has no empirically proven mechanism of action, which both book and reviewer state.
I had exactly the same thought reading it. "So really the explanation is <not an explanation>". Agreed that explicitly stating the lack of an answer would have been preferable. (Overall very good though, especially given the difficulty of trying to interestingly summarize a topic whose real summary is "🤷♂️".)
Of Moliere's two quotes that are hugely famous in the English speaking world, I always felt the "dormitive property" one was overstated:
"I am asked by the learned doctor the cause and reason why opium causes sleep. To which I reply, because it has a dormitive property, whose nature is to lull the senses to sleep."
OK, but lots of important scientific concepts get named in exactly that way.
In contrast, I have no objections to the wonderful:
"My faith! For more than forty years I have been speaking prose while knowing nothing of it, and I am the most obliged person in the world to you for telling me so."
It doesn't sound like Schaffner believes that she has explained the phenomenon. She's saying that CFS seems to be the newest name for a historically well documented phenomenon, and that nobody knows what causes it. In other words, we don't know why it happens but we know its a real thing and has been since time immemorial. Which at least is evidence that CFS people aren't faking.
Malingering is also a real thing and has been since time immemorial.
(To be clear, I don’t argue that CFS is purely malingering. To me it’s obviously a lot of things but mostly psychosomatic depression, a somatic symptom disorder, with maybe a few cases being malingering, and a few more factitious illness.)
What I do argue is that the standard of evidence you’re holding up to dispute faking is really low. The only conclusive way to rule out faking is to find evidence that cannot plausibly be faked; mere similarity with other historical illnesses doesn’t prove anything or even suggest anything: that also could have been faking!
I don't see how, from the presented evidence, you can decide that CFS is clearly anything in particular, except, possibly, real. To me it sounds like a syndrome rather than a disease. I.e. a collection of different diseases that happen to have the same symptoms. But I wouldn't give even that a high certainty.
I don’t know what “real” means in this context: not psychological? Not psychosomatic? Not all malingering? Not factitious? All of those phenomena are real. Maybe I can tell you what I think if you define your terms.
Anyway, I agree with you, as I said: it’s almost certain that CFS is not *one* disease with *one* cause. But I’m fairly confident that most cases of CFS are psychosomatic for the following reasons: none of the symptoms can’t be caused psychosomatically; it appears most often in populations that are particularly vulnerable to psychosomatic illness; the most effective treatments are psychological treatments, not physical, and they are about as effective as psychological treatments prescribed for similar psychological ailments; the malaise experienced by sufferers is not alleviated by rest, but the sufferers desire rest regardless and push back against treatments that work badly in favor of those that don’t work at all; there is significant crossover in symptoms and sufferers with depression, anxiety, and fibromyalgia (another somatic symptom disorder). And lastly, the more your living conditions are directly supported by necessary physical labor (a case that does not occur in the First World due to safety nets), the less likely you are to have it.
I could be wrong about this. But my personal experience with CFS and fibro sufferers is what led me to investigate this, so anecdotes from the same elicit little change in my opinion now. I’m looking for a more scientific grounding to change my mind and the probabilities aren’t looking good for that.
I would push back on most of your assumptions, but just to pick a couple: many neurologists equate fibromyalgia with small-fiber neuropathy, so it should not be written off as somatic. In fact it's just one example of the many umbrellas that CFS can fall under. Connective tissue disorders is another common one. POTS is another. And of course many patients are still searching for relevant associations while society tells them to shut up and see a shrink.
When you say "the sufferers desire rest regardless and push back against treatments that work badly in favor of those that don’t work at all," I believe you're referring to patients who choose no-action versus action that is likely to trigger a painful crash and continuation of debilitation. This is something only they can gauge, using the experience of their bodies as a guide, and they have every right to try to manage their chronic disease and lead happier lives as sick people.
I don’t find the evidence that fibromyalgia is not a somatic symptom disorder very convincing. Perhaps someone will find something new someday.
People have every right to choose whatever course of action they wish. No one said otherwise. But I’m not going to bandy words about ‘lived experience’; I’m interested in what society can do for people afflicted, and at this point letting treatment be led by the sufferer’s feelings and fatigue appears to yield nothing.
A quarter of a century ago, I reviewed a similar book "Hystories" by Elaine Showalter, another literary critic, on "hysteria" -- i.e., problems that might be medical or might be physical that caused 19th Century ladies who could afford servants to take to their beds for months or years at a time and how they might possibly be related to other more recent maladies. It doesn't sound like much has changed:
H Y S T E R I A, H I S A N D H E R S, published in National Review, 9/1/97 -- by STEVE SAILER
SOMETIMES you get what you ask for. Back in 1985 Elaine Showalter, a Princeton English professor specializing in the social history of mental health, concluded her critique of the traditional psychotherapy profession by proclaiming: "The best hope for the future is the feminist therapy movement."
By 1997, the mental-health industry has become thoroughly feminized, but Professor Showalter has had second thoughts: "The therapist's role is more and more to affirm, support, and endorse the patient's narrative, . . . and not to challenge the truth or historical reality of the patient's assertions." This credulous atmosphere, she believes, has helped unleash "hysterical epidemics," such as the disgraceful witchhunts for satanic cults running day-care centers.
Mrs. Showalter cites five other "hysterical'' outbreaks: the booms in recovered memory of incestuous abuse, multiple-personality disorders, alien abductions, Chronic Fatigue Syndrome, and Gulf War Syndrome. For an academic treatise with a first printing of only 7,500 copies, Hystories has already generated quite a backlash. In hounding the author, Chronic Fatigue sufferers have proved especially energetic...
Mrs. Showalter's strongest chapters are on epidemics like the satanic-abuse and alien-abduction scares, whose alleged causes are wholly imaginary; and on Gulf War Syndrome, whose primary cause is real but not specific to that conflict: "war makes people sick." While it may turn out that chemical weapons or sand fleas really did afflict some minority of the sufferers, on the whole GWS appears to be the latest version of what other eras labeled "shell shock," "battle fatigue," or "post-traumatic stress disorder." America must realize that one of the costs of going to war is later paying fully for treatment and disability leaves for a substantial number of psychologically injured soldiers, although treating mental traumas as honorable wounds will no doubt let some hypochondriacs and malingerers slip through. . .
Unfortunately, Miss Showalter's literary world view is too black-and-white for those epidemics where some but not all of the patients' stories are true, e.g., incestuous abuse. The acrimony of these debates stems in part from both sides' thinking about all patients as Platonic abstractions ("incest victims" v. "hysterics"). In reality, mental health is more like an unsettlingly random pachinko game. The classic case study of how psychological debates tend toward dogmatism has been running for a full century since Sigmund Freud analyzed 18 unhappy young women. After much bullying by Freud, they all produced stories of childhood sexual abuse. First announcing an epidemic of incest, Freud then publicly changed his mind and blamed all the women for repressing Oedipal fantasies. Millions of words have since been written about this controversy. Most feminists contend that all 18 really were incest victims. In contrast, after a decade of listening to the nonsensical narratives that present-day therapists can elicit, Professor Showalter thinks Freud was right to recant...
Few, however, seem to have remarked how unlikely it is that any single diagnosis was right for all 18. In truth, some of the troubled women probably were child-abuse victims, while some others may have been repressing guilty fantasies. Probably a large proportion were suffering from other root problems that weren't understood back then, such as chemical imbalances in the brain that strike largely at random. ...
A beneficial side effect of a more realistic conception of hysterical epidemics allows this useful concept to be profitably applied to other current brouhahas where facts and feelings get hopelessly entangled, e.g., date rape and sexual harassment... This sensible but limited book illustrates the strengths and weaknesses of what has recently become a lonely rump of feminism: "equity" or "rationalist" feminism. Appalled by the flapdoodle peddled by most feminists today, Mrs. Showalter wearily protests, "Feminism has a strong Enlightenment, rationalist tradition of debate and skepticism, whose memory I attempt to recover and reassert." She bravely points out that the great majority of these epidemics' self-proclaimed victims are women, even the alien abductees. (Gulf War Syndrome, of course, is the exception, but the number of soldiers' wives who have also come down with GWS is striking.)...
Unfortunately, rationalist feminism is itself founded on a death-defying leap of faith: the assumption that there are no biological bases for differences in behavior between the sexes. Thus, equity feminism was much to blame for the imprisoning of so many young women day-care workers on absurd charges of raping children and eating babies. If we know anything about sex abuse, we know it's a solitary male crime, not something women do, especially not in groups. But equity feminism has made such stereotypes unacceptable, so all those young women, whose only crime was that they loved little kids so much they'd work with them for $5 an hour, had to go to jail...
Further, rationalist feminism's fundamental dogma of sexual uniformity prevents Miss Showalter from grasping why feminist movements are so vulnerable to the irrationalism she despises. It's not because women aren't as smart as men. Although the sexes do differ on average in mathematical skills, women may well be superior in verbal logic. (Try eavesdropping on two teenage girls analyzing the endless possibilities of what some boy really meant when he said, "Maybe, like, I'll see you around sometime, you know?")
So why, in practice, are the terms "feminist theory" and "scientific theory"" mutually exclusive?... The particular form of rationality that originated in the Enlightenment requires more than just the ability to construct castles of logical conjecture in the air. Galileo wasn't any more ingenious at conceiving interlocking celestial spheres than his ancient rival Ptolemy. What distinguished Galileo, and the Enlightenment in general, was that masculine competitive delight in risking the destruction of your own hypotheses in order to smash the other guy's beautiful celestial spheres of theory.
The Enlightenment turned reason into a contact sport.
Feminist movements careen into gullibility because women, especially when talking mostly to other women, find it more emotionally difficult than men to treat intellectual debate as a game. Women tend to take it much more personally, closing their minds to opponents and pulling their punches with friends.
I don't really get what's meant to be wrong with Shorter - he just seems to be arguing that it’s a psychosomatic condition, which seems to be the likeliest explanation. What all the people with the various historical versions of this seem to have in common is that they can get away with it: monks, Oscar Wilde, people with access to disability benefits etc. A certain type of person (myself entirely included) will have an almost overwhelming bias against doing anything that involves getting out of bed; up to and including going to sleep hungry because ordering takeout is too much of a faff. This will include everyone you meet who only shaves intermittently or smells like they don't shower. We can force ourselves to get up and do things when we have to (whatever that means). Some people can get away with not doing anything, so they don't do anything. The people who cant get away with it don’t, so we don’t hear about them (Marcus Aurelius is the only historical figure in this camp who springs to mind).
The post-viral side of it obviously flows from this; when you’re off work with covid or whatever, you get to do nothing, so the temptation is always to stretch it out (I definitely kept testing positive long after I started testing negative). I doubt its a conscious fraud, but more a desire to believe there’s something medical to justify your overwhelming preference for inactivity.
(Going back to the Shorter point, I think he’s taking a way more moderate position than I am and just saying it’s psychosomatic.)
Doesn’t that fall pretty short of the point where it’s handwaving? The existence of people who have a history of accomplishments and also claim CFS doesn’t seem incompatible to me at first blush. A life of sprinting from accomplishment to accomplishment has few off-ramps, but one of those is chronic illness: if you’re sick, you have a great excuse not to keep doing all that stuff and nobody can tell you you’re lazy.
Having a successful career and founding an organization to look for a cure for your condition doesn't strike me as laziness. Like, it might be physically less strenuous than sailing a yacht, but writing as a career is still *work.*
Also, like... you don't need an excuse to stop sailing yachts. "I've decided to spend more time with my family" is the internationally accepted excuse for rich people to stop doing literally anything.
I think you’re coming at it from the wrong angle. People will do, say, and believe a lot of things to enable behavior that they might otherwise chastise themselves for, or other people (including their family) chastise them for.
If you become depressed and want to quit life, people might try to stop you. If you get a Condition which forces you to quit life, you’re a hero for getting out of bed.
It’s not suggested that the majority of CFS patients are consciously malingering; Shorter thinks it’s a somatic symptom disorder: the excuse is required.
“Character or life course”? Of course not. I’m baffled at the very idea that you think somebody’s career or their moral fiber has something to do with whether they have a somaticized psychological disorder. I’ve had clinical depression before and I assure you it wasn’t because I was a bad person or I didn’t try hard enough in college.
As far as CFS making you a hero, struggling against the system: it’s not about what forces arrayed against them believe, it’s what the CFS patient (and their community, the community of CFS patients) believe. The valiant struggle against uncaring doctors, an ignorant medical system, and a public that indicts you as lazy or malingering seems to be a big part of the chronic diagnosis of exclusion’s draw; whereas mental illness is a difficult personal struggle, the chronic ‘organic’ ailment indicts the system, not the self.
This certain type of person (which includes you, me, and and a large proportion of the people I've known well) will receive what when we get our UBI? I guess a one way ticket straight to misery.
Or a UBI will give us the breathing room we need to rediscover the joys of life, and the freedom to pursue them without reserve. That may require a push in the right direction, which could come in the shape of therapy or a social support network/group; the former may or may not be affordable on a UBI, but the latter should be far easier to find when everyone is free to act according to their values rather than compromising to earn a living. Doubly so because many will find joy in helping others in such a way, or so I believe.
I've had this fear for myself too, but... (1) Do you do anything currently besides work and the basic requirements of living? If so, wouldn't you still enjoy those things if you didn't have to work? (2) If not having to work truly makes you miserable, probably you can muster the willpower once (or once a month?) to send your UBI to charity or a friend or something.
What you describe certainly is a thing that exists. However, actual CFS is an entirely different beast. Even if you wanted to do something, with CFS you often can't, because after the initial euphoric feeling of getting your life in motion again, post-exertional malaise quickly sets in, and drags you down into inactivity and chronic pain. That's what sets it apart from things like depression and akrasia.
Then perhaps you need to listen more closely. Depression has always been more mentally driven to me, while CFS is more physically driven. Yes, I've experienced both.
Of course, the two are strongly interlinked and influence each other, that's what psychosomatics is. There are all sort of feedback loops and calibration issues (sensitivity to stressors, etc) that make it hard to be active even when you really want to.
I have known a few "type A personality" people who got hit with this malaise and kept fighting, progressively getting worse and worse, more and more frustrated with themselves, remembering what they used to be like and what they used to be able to do, before they learned to count their spoons very carefully. Some never have. So, this is direct (though anecdotal) evidence against your model of people getting habituated to not having to work.
Ha! Spoons. I have leukemia, and before a bone marrow transplant I had to 'pass' a telephone psychosocial interview conducted by a sociology student. She went into the spoons theory. Frankly, it was all my wife and I could do to not burst out laughing. We would not have passed in person with out fists and clothing jammed into our mouths to prevent her hearing our giggles. Sure the transplant was a big deal, a couple of months of in-patient isolation misery, and issues that continue over a year later. I'd rate the whole thing as easier, subjectively, than a weekend on call in the summer (cottagers!) where you are the only doctor in the community. As we commented after the interview, 'she doesn't know who she's dealing with!' She meant well, was completely professional, and I rated her highly when her supervisor followed up because she was just doing exactly what she was being taught to do. But it's much easier for me, not because of medical training, but because I'm old enough to come from a time when you didn't complain, you made do with what you had, and you were grateful for it. I'm not saying my life was hard: I have been very lucky and in the areas where things have gone to hell, I cope. I have seen capable and valued colleagues go under with self-doubt and find a diagnostic home in CFS and sick-building syndrome (which, BTW, is very contagious!), and I'm sorry for them. But it is completely obvious that there is a psychosomatic underpinning to their symptoms. We have to be honest about that if we are to offer help.
If we are to use that as a guide we shall end up saying there is no such thing as a psychosomatic illness. And that looks awfully like the urge that some have to show their psychological conditions are actually more "respectable" physical conditions. I would decry that, and likely you would too. There's nothing wrong with a psychological/psychiatric/mental (take your pick) diagnosis. I'm saying those things are just as real, worthy and miserable as having H. pylori in your stomach, that's all.
Which is fine, on its own. Where it's not fine is when the insistence on a psychosomatic cause leads, as it has, to ineffective-to-harmful treatments being promoted as effective through laughably flawed studies and a refusal to look into other, potentially more fruitful, lines of research.
You seem to be saying that your disease, being "the real deal," makes you an authority on other diseases, to the degree that you can confidently diagnose others as being afflicted by "self-doubt."
I've seen this muscular stance from others living with (or recovered from) serious conditions. Some people seem to take special offense at anyone struggling with conditions that aren't yet understood. You've been to battle. You've seen the front lines. And you assume that the "complainers," unless they have a diagnosis as weighty as yours, just couldn't cope.
Did you know this was widely said about tuberculosis in the 19th century? It was considered indicative of a character unable to rise to the challenges of "the modern world."
It's an unfortunate blind spot, but I can guess from your language you are quite secure in your conclusions, which is frankly unfortunate for your colleagues, who I suspect are not sitting around comparing disease states. They're just trying to get by day to day with the particular body they're living in. And I suspect they're not "complaining" so much as asking for necessary accommodation for their disease, just as you had to do while laid up.
30 years as the only doc in a remote/rural community necessitates a certain amount of confidence, misplaced or not. If I have "blind spots" they are a result of having to prioritise diagnoses. I'll be as caring and sorry as possible if you have CFS, but excuse me I have to go and do CPR on the arrest over there! And then there's yet another chainsaw cut after that. Then I'll get back to your fatigue. You might see how one simply has to put some things before others. Triage as a way of life. Yes, that meant many of my own family moments were placed into the 'unimportant, do later' category. I can regret all that on my own, but the job I was hired to do (the job that allowed me to immigrate to this country) required me to place patient requirements well in advance of anything personal. I chose to go along with that. If I can make sacrifices, maybe I'll be somewhat less understanding when I see patients exploit minor injuries into reasons for long term disability. And that is a very frequent issue.
I'm not asking for any medals for coping with my own diagnosis, and I'm sure I shall receive none here. My point, which I think still stands, is that the way we respond to adversity depends a hell of a lot on how we were brought up, and how we were taught or modelled to deal with it. And it seems to me that those matters have a great deal to do with neurasthenia and its descendants.
I understand the economics you describe. It's an issue. But let's be clear about what you have demonstrated here. You have shown your patients that you continue to equate CFS/ME with routine fatigue and hysteria, and that you have zero interest in learning what the disease is really about, which frankly is a pretty good argument for choosing younger doctors, if it's too much of a sacrifice for older doctors to keep up with the research. Your overconfidence in your beliefs would certainly translate directly into just one more predictably miserable experience with the healthcare system for anyone with CFS/ME who has the misfortune to require your care.
Further, you have bolstered your lack of empathy by sharing the conviction that your patients' presumed hysteria should have been prevented by something they had no control over. You say this is your point, and it's the reason you bring up your own genuine illness, to demonstrate what a properly functioning family system ought to look like, but I guarantee you this: if all the doctors you saw for your cancer told you it was just in your head, you would not have handled your situation with nearly as much of that stoic good grace you were raised to demonstrate.
Hilarious. Do carry on. You'd rather I let the cardiac arrest die while I entertain all sorts of unproven theories about your fatigue? I'd lose my license that way, and deservedly so. No matter how old or young I am. Ageism for the win!
Can you concede that, in the current pool of people with idiopathic diagnoses like CFS, there may be a few subsets that have causes more akin to tuberculosis/ulcers than malingering? Why or why not?
(This is directed at Christopher Moss--sometimes I don't thread correctly, so I just wanted to be clear)
Why would a healthy animal have an overwhelming preference for inactivity?
Even cats, known for sleeping all day, get "frenetic random activity periods" or colloquialy, zoomies. A constant, overwhelming preference for inactivity gets you killed in the evolutionary environment.
Shorter's book From Paralysis to Fatigue, is well worth a read. The similarity between acedie, hysteria, neurasthenia, chlorosis, CFS, ME, sick-building syndrome and total allergy syndrome makes it fairly clear we have been dealing with this for a long time. He feels it is psychosomatic, but there again he would: he's a psychiatrist. That doesn't mean it isn't real (we all get a headache when stressed, or diarrhoea when scared) and it distresses me to see people making death threats at honest attempts to help them. I guess they are revealing their own bigotry against mental illness in doing so. Whatever the cause, the only things we know of that help the condition are SSRIs, graded exercise and CBT. That's all we know. Seems daft to stamp your foot and say 'No! I won't do that!' when that is literally all we have to offer.
Not quite true. Current research shows "graded exercise" is not just ineffective for many with ME/CFS, it can be harmful (depending on the protocols). Think of exertion, including mental exertion, as a type of poison in the body, and you'll be close to the mark. The individual learns how much she can tolerate in various circumstances and how best to recover. The now-outdated notion that the individual's only path is to keep trying to push toward higher levels of exertion is unhelpful; it reinforces the false impression that cognitively responsible people (those without lazy characters) need to just keep trying harder, which has been proven to make the disease much worse for many.
"Whatever the cause, the only things we know of that help the condition are SSRIs, graded exercise and CBT. That's all we know. Seems daft to stamp your foot and say 'No! I won't do that!' when that is literally all we have to offer."
Don't fall into the trap of thinking that just because we don't yet understand a system we should address it with existing, limited assumptions. You could have said the same thing in the past about people stamping their foot saying no to leaches.
When you imagine yourself doing "nothing", are you reading books on your backlog? playing videogames? Catching up with friends? Or are you lying in bed because the idea of getting up to make yourself breakfast seems daunting? I can easily believe that most people would rather be out surfing or otherwise indulging hobbies than working, but when a person can't muster enough energy to have fun, they are clearly unwell!
Oh, lying in bed doing nothing. Will use laptop if I left it next to the bed, but otherwise phone. Breakfast (and cooking your own meals vs ordering takeout) are miles into the effort-taking activity side of the aisle, and catching up with friends actually involves putting clothes on and going outside. The things that get me out of bed are 1) work or something else I just have to do; 2) needing the loo to the point where it's causing substantial discomfort (followed by lying on the sofa or going back to bed). If you eliminate the contents of category 1, eg. by having a medical condition that excuses you from work/social commitments, then you'll eventually get out of bed to let the food delivery guy in but that's about it.
It's the existence of category 1, and the answering-the-door type things, that gives the lie to it being a physical disease. It's just a strong preferential bias towards inactivity, shared by countless lazy people (myself included), and if society doesn't let us get away with it then we won't.
The description made this book sound quite similar to Elaine Showalter's "Hystories", but that covered multiple conditions of which CFS/fibromyalgia was one.
I believe the rage about graded exercise is about being prescribed the very thing that makes symptoms worse. If ordinary walking is exhausting, more walking might just lead to more exhaustion.
I don't understand your question. I think most of them would have post-exertional malaise. Many people with CFS/ME can exercise, they don't recover normally though.
Perhaps some people with CFS/ME have affluenza, but there are those that don't: for example, those that have ended up cured of their CFS/ME symptoms after having cranial traction.
i sincerely hope u experience severe suffering at some point and i also hope that everyone around u scoffs and waves it away...then maybe u will understand
I think the grade is important. If something exhausts you, then you do something that doesn't exhaust you first. I read an account of a woman with CFS who successfully used graded exercise to get well. She didn't start with walking, she started with sitting up in bed. Eventually she was doing full sessions of yoga.
Is it just me, or does the picture accompanying this review really not describe it so well? If, like me, you're one of the people described in the first paragraph of the review, I bet your bedroom doesn't look like something from HGTV - mine certainly doesn't.
I was hoping for some useful information for dealing with exhaustion, but no such luck.
I have a lot of complicating factors and, unfortunately, no particularly good ideas to exchange. I doubt I'll be a useful conversation partner, though I'm more than happy to try if I don't have to deanonymize myself.
Long story short, our kids had sleep issues and developmental issues, and our house had a mice problem, and just around the time these were all resolved, the summer weather hit. I've never felt all that well in summer, but this summer seems hotter than before - and it came after a long period of not enough sleep and a bunch of other problems. So I can't tell if my problems are long-term, or if they will go away when the weather becomes normal, but right now I'm pretty much what's described in the first paragraph - except that I can't withdraw from basic activities. I somehow do most things that need to get done and get through the day while wanting to just lie down on the floor and sleep. I daily come up with plans for catching an extra hour of sleep, either just to see these get derailed when reality doesn't cooperate or to fail to take advantage of that hour.
On the bright side I think there's a fairly good chance that I'll be a new person when temperatures hit low 70s, or, if that fails, then around the time when the first snow falls. What really scares me is the possibility that this won't happen.
Any chance of getting (more) AC? I've made a habit for well over 15 years to just "skip" summer heat - everywhere I live, work and travel is air conditioned. It ended up being a lot more affordable and practical than I expected. Pretty much the only consideration I've found critical is to never use it as a hammer and have it on full blast. Just set it on a very moderate temperature, and hide the remote until October.
Re: sleep. I have moderate chronic insomnia for a long time, which I'm managing reasonably well. But the gamechanger was adding stims in the mix: after a long time hesitating with occasional use, this year I took the plunge and started using modafinil as a lifestyle drug, aka 1-4 days a week. The difference between those days and the average is pretty much mindblowing.
I'd love to just skip the summer heat, but we have two kids and live in an area famous for its outdoors where there're really not so many air-conditioned places to spend an afternoon in summer (I can count all the options in a reasonable drive range on the fingers of one hand). Around here, you don't spend your summers indoors unless you're really sick.
I suspect that stims might not be a solution for me, but I'll look into this. Thank you for the suggestion.
I see. I think I can give you a few general pointers that might help:
1) Stress + lack of sleep is a vicious cycle. You're tired, but it's very hard to rest in that state. If you have a spare hour, instead of focusing on sleep, I'd advise focusing on *relaxation*. There are a bunch of things that might work here, but one good starting point is to just reduce sensory stimulation. Lie down in a dark, quiet room, and do nothing other than letting your body sink down. Take slow, deep breaths. There's actually a reflex that triggers relaxation when breathing deeply: imagine breathing as far down as possible, imagine that you're pulling the air down all the way into your hips. Fill your lungs from the bottom up (if that makes sense), then breathe out with an aaaaah.
2) Tension. Make sure your muscles are relaxed. Specially the shoulders and neck, which might be the cause of tension headaches. A spot that many people neglect are the muscles at the back of the neck, just below the base of the skull, on both sides of your spine.
3) Pain. You might be in pain and not know it. Many CFS sufferers describe a sort of pressure on their head, which is also strongly associated with the famous "brain fog". Try taking a painkiller once in a while. You might realize "yep, I was in pain alright" once it's gone. It's important to not overdo it, as painkillers have really bad long-term side effects. But a few times a week is safe. I would recommend trying it not when the symptoms are worst, but rather before some activity that stretches you beyond your usual daily routine. This prevents post-exertional malaise to some degree. Another good time to take a painkiller is right before going to sleep after an exhausting day.
4) Pacing. Don't overdo it on days you're feeling well. It's really tempting because feeling well tends to come associated with a certain euphoria and an urge to "finally do stuff".
I'd be curious to know what your experiences with these ideas are.
Yes, certainly these are some helpful ideas for civilians dealing with stress and fatigue and sleep hygiene. Just don't confuse this sort of approach as relevant to severely, chronically sick people who have spent years, decades, trying absolutely everything.
Civilians have a tough time imagining the true reality of CFS/ME, partly due to semantics. E.g. you know what "fatigue" is in your life, and you've approached it smartly, but you need to recognize the disease of fatigue is not the same thing. It's a totally different existence.
It's like someone who goes around saying they have "the flu" every time they catch a cold. And then one year they get the real flu, and the idea of getting out of bed just to go pee becomes an absurd fantasy. Try to imagine that kind of "fatigue" next time you encounter someone with this awful disease.
Yes, and it's important to keep reminding civilians that "fatigue" is just a word, and it doesn't capture the pain, burning, pressure, migraines, frozen brain, etc, that many who suffer from CFS/ME experience every time they say, "I'm wiped, and I'm going to go lie down."
In fact, if anything, I'll bet most patients learn to downplay the symptoms, after witnessing how deeply uninterested people are in learning what's actually behind that word, "fatigue."
I am a bit annoyed at you because I think you weren't quite honest in your original comment. But I recognize that you did your best to be helpful here - thank you for this! - and in another situation you might have been.
Unfortunately, I am really well acquainted with everything you mentioned, and with a bunch of things you did not (hydration, blood tests to check for culprits such as inflammation, thyroid issues, anemia, blood sugar issues - did I miss something?). My current hypothesis is that in my case this might be just about sun exposure, due to a certain neurological disease in my medical history. If that's the case, all I can do is avoid the sun (easier said than done with two kids).
Thank you for trying to help.
EDIT: Forgot to mention getting tested for sleep apnea.
I'm confused... how exactly was I being dishonest?
It's really hard to help someone in a single comment. It takes a longer conversation than that. I have a bunch of ideas and tacit knowledge in this domain, but these are much harder to articulate. So I went for some of the more basic stuff (which a lot of people don't know about / don't take seriously). I really wasn't trying to downplay your problems or anything like that.
Looks like I might owe you an apology, then. Sorry for jumping to a conclusion.
Your original comment seemed to say that you have a similar problem and might be able to share some ideas for dealing with this. When I asked for ideas, you gave me a standard list of things that most people who complain of fatigue, migraines, or back pain have heard from their doctors or seen elsewhere. (Not only this, but you also asked me to let you know if any of this works!) Instead of something insightful, I got the most generic possible advice from someone who sounded as if he was playing doctor (or was a doctor?), which led me to assume that you weren't engaging in this conversation in good faith.
I apologize for assuming that. I do understand that you were trying to help, one way or another, and I do appreciate it. Thank you, and sorry.
> This is particularly pronounced in men, for whom the loss of seminal fluid is allegedly forty times more damaging to vital energy than losing an equivalent amount of blood.
This is obviously true. Take a pint of blood from me, give me a cookie and some orange juice and I'll be good as new the next day. But take a pint of seminal fluid from me, and I'll be bedridden for a month.
Sometimes I wonder how migraine would be treated if it created all the same symptoms *except* pain. Sporadic episodes of partial blindness, brain fog, numbness, lethargy, confusion? Occurring mainly when you’re overexerted or annoyed by stimuli? Sounds like it’s all in your head.
You don’t think migraines are in the head? I get them maybe one or twice a year when I am underslept and over-stressed, but they are definitely “in the head”.
Saturn is the planet associated with melancholia in classical astrology. The link to Saturn got played up a lot in Renaissance esoteric literature and art, when people started to think of melancholia not in terms of the sin of sloth but as a morally neutral disposition toward intellectuality, even a desirable marker of creative genius.
In ancient/medieval/renaissance astrology it was held that the planets influence Earth in various ways, and each planet had different qualities. For instance, it was believed that metal formed deep in the Earth during times that the planets had strong influence, and each planet was associated with a different metal (Moon:Silver, Mercury:Mercury (duh), Venus:Copper, Sun:Gold, Mars:Iron, Jupiter:Tin, Saturn:Lead). Rich people would take out their gold items on very sunny days and lay them out to bask in the sun, under the belief that the Sun's influence would make them purer.
C. S. Lewis describes the idea of planetary "influences" in his book "The Discarded Image":
"Besides movement, the spheres transmit (to the Earth) what are called Influences-the subject-matter of Astrology. Astrology is not specifically medieval. The Middle Ages inherited it from antiquity and bequeathed it to the Renaissance. The statement that the medieval Church frowned upon this discipline is often taken in a sense that makes it untrue. Orthodox theologians could accept the theory that the planets had an effect on events and on psychology, and, much more, on plants and minerals. It was not against this that the Church fought. She fought against three of its offshoots.
(I) Against the lucrative, and politically undesirable, practice of astrologically grounded predictions.
(2) Against astrological determinism. The doctrine of influences could be carried so far as to exclude free will. Against this determinism, as in later ages against other forms of determinism, theology had to make a defence. Aquinas treats the question very clearly. On the physical side the influence of the spheres is unquestioned. Celestial bodies affect terrestrial bodies, including those of men. And by affecting our bodies they can, but need not, affect our reason and our will. They can, because our higher faculties certainly receive something (accipiunt) from our lower. They need not, because any alteration of our imaginative power produced in this way generates, not a necessity, but only a propensity, to act thus or thus. The propensity can be resisted; hence the wise man will over-rule the stars. But more often it will not be resisted, for most men are not wise; hence, like actuarial
predictions, astrological predictions about the behaviour of large masses of men will often be verified."
Lewis describes Saturn's influence thusly:
"In the earth his influence produces lead; in men, the melancholy complexion; in history, disastrous events. In Dante his sphere is the Heaven of contemplatives. He is connected with sickness and old age. Our traditional picture of Father Time with the scythe is derived from earlier pictures of Saturn. A good account of his activities in promoting fatal accidents, pestilence, treacheries, and ill luck in general, occurs in The Knight's Tale (A 2463 sq.). He is the most terrible of the seven and is sometimes called The Greater Infortune, Infortuna Major."
This phenomenon is also where we get the world jolly, jovility, and jovial: all of them referring to Jove, the other name of Jupiter, the "fortuna major". Under his influence Earth experienced peace, prosperity, and a general sense of happiness and wellbeing.
>the initial thoughts that EBV was a robust cause of CFS, the subsequent discovery that about 95% of the population has had EBV so this explanation couldn’t be complete
Minor nitpick: there is no "has had" EBV, EBV is a lifelong infection so either you have it or don't.
Also I wouldn't rule out EBV, since it's definitely known to cause rare things like cancer (Hodgkin's lymphoma) and multiple sclerosis even though most infected people don't get them. See: https://denovo.substack.com/p/epstein-barr-virus-more-maladies
I've read a book called Acedia, and wondered whether what was knocking people out was that the rules made life so drab that some people stopped functioning, or possibly stopped obeying the rules.
I don't think the issue was that the rules made life drab. The rules made life vividly, unbearably intense. Acedia was the temptation to say, "Wouldn't it be just as good to putter around being normies, and let God take us as He will? Must we *always* be *trying* to make ourselves acceptable to the Divine?"
It's interesting to me that explanations popular in previous eras are simply dismissed out of hand. That would be reasonable if we found the causative agent behind CFS and could cure it with a pill, but we haven't. We still have no idea what causes it. And so when I read this:
"Occurring as it did in monastic orders, the explanation for acedia was moral in nature – it was due to weak willpower or a moral defect. Schaffner, quoting Thomas Aquinas:
...
…which is something that might reasonably be referred to today as victim-blaming."
I wonder how we know it's *not* due to weak willpower or a moral defect at least some of the time . Yes, it's victim blaming--and sometimes, the victim is to blame. There is no logical reason to not take this explanation seriously just because it's no longer politically correct.
Ideally, because a person you trust emphatically tells you it's not about willpower or morality. From there the most parsimonious explanation is that this cluster of symptoms indeed corresponds to an underlying health condition.
The person I trust the most is myself, but I'm not sure how I'd know if CFS is about willpower or morality if I got it. I'm not even sure what it means to not be about willpower. Does it mean that no matter how hard I try, I can't do physical activity? That seems clearly false--there's nothing wrong with my muscles, even if using them is exhausting. And what does it mean to not be about morality? One common characteristic of a moral fault is that the person with the fault doesn't recognize it as a fault. Clearly I do have moral faults, even if I don't know what they are, so why can CFS not be one of them?
Does an ultramarathon runner who collapses at the end of a race simply lack the willpower to keep going? Their muscles demonstrably work, having gotten them as far as the point where they collapsed. If you have never experienced your body flat out refusing to do what you want, I suppose it’s difficult to understand that experience. But, yes, sometimes one’s muscles do not function as expected, even if there’s nothing wrong with them specifically. Sometimes, no matter how hard you try, you cannot do the physical activity.
One experiment that could identify this distinction: find people who have collapsed during marathons, as well as people who have CFS, and then hold them at gunpoint and tell them that if they don't make it another 1000 feet they will die (or, more realistically, offer them some incentive like a sizeable quantity of money for making it a little bit farther).
I suspect that if we did this experiment, people with CFS who claim to be unable to do physical activity no matter how hard they try would find a sudden burst of strength given a large incentive like this, whereas a marathon runner who has collapsed from exhaustion likely would not.
Bodybuilders sometimes use “train to failure” protocols as part of their weightlifting routines. This takes a lot less time than running an ultramarathon, if anyone wants to actually try experimenting along these lines
A lot of the problem is that even if the person can do a thing, the cost to them afterwards can be very high. Or were you planning to keep offering them money when they've collapsed after the first task?
If I had to run 1000 feet I'd probably collapse. Any physical activity more strenuous than walking immediately causes me to become dizzy, progressing into lack of air and nausea. Even if I did make it, you'd have to pay me a really large amount of money to offset the weeks or months this would set me back on my path of recovery.
If you offered me $5000 to run 1000 feet, I'd decline.
1) you are strawmanning. The claim is not thst they are physically unable to do stuff, rather that it is excruciatingly painful to do so
2) you might be pleased to know that both versions of your experiment have been tried. The version with a gun was called "slavery" or some other euphemism for forced work, and the version with a sizable amount of money is called "jobs". In both situations, there are people who cannot bring themselves to work, full knowing the consequences. NB: people who stay in bed all day don't forego only a pretty sizable amount of money, but also the possibility of finding romantic and sexual partners, social life, hobbies, and so on. Probably a good amount of health too. It comes really close to the gun when you consider everything. But aside, I repeat: there were people that chose a very literal gun/rope/knife/gas chamber over working.
I also suspect that many people throughout history, but also today, have died because their character did did not allow them to fail, so they kept pushing until they dropped dead. This could help explain why these invisible diseases supposedly strike many more women than men; men are maybe more likely to simply refuse this type of debilitation. And then self-medication starts with a 12-pack every night, etcetera, and health spirals down fast to a death at 50.
What would you do if you got CFS/ME/FM as, say, a garbageman supporting an entire family? You'd push forward until you died of stroke (or whatever) -- and hopefully your family would get decent death benefits. You wouldn't have much of a choice.
The thing is, many with a Randian mindset would actually expect the man to push through until death before admitting to his weakness, but I think today's garbageman could find dignity in other ways if society wasn't such a dick.
Perhaps you and the others who've responded to your comment would be interested to know that essentially this experiment has been done (although just on the high-level athletes, not people with CFS). From Endure by Alex Hutchinson:
"Marcora himself produced a similar mind-over-muscle demonstration with a group of elite rugby players who competed in a time-to-exhaustion cycling test. At an average target power of 242 watts, which corresponded to 80 percent of their peak power, the players lasted for about 10 minutes, with cash prizes to ensure they fully exhausted themselves. As soon as they gave up—within three to four seconds—they were asked to see how much power they could generate in a single 5-second burst of pedaling. Curiously, although they had just declared themselves incapable of producing 242 watts, they managed to average 731 watts during this five-second sprint."
No, their muscles would demonstrably have serious physical problems. They'd be full of lactic acid, due to cellular respiration in conditions of oxygen deficiency. They'd also be full of microtears, which are what cause soreness after intense workouts. The runner's blood glucose level would be extremely low. The runner is going to recover from these problems, but the problems nevertheless exist at the moment and pose physical limits to continued activity through logical and well understand mechanisms.
Indeed. Without doing weightlifting or endurance stuff, i can feel it in my preferred sports (dirtbike, snowboarding, wakeboarding, this sort of stuff). I don't feel fatigue as strong as in the gym or running because most of muscle work is reflex balance keeping (that coupled with some physical laziness is probably why i enjoys those sports in the first place) ... But at one point your muscles becomes unable to do the work and it is extremely dangerous to keep doing tricks. The reflex will still be there but the muscles will not be strong enough, resulting in hard falls or muscle tearing...
Sometimes i feel generally tired or unmotivated, but still do a session because it was planned, or paid in advance, or a group activity... While it's no big fun and you feel tired early, it's not like the dangerous muscles-are-off at the end of a session. They're is a clear difference between general fatigue/lack of motivation and muscle fatigue (the end of marathon-like one). If cfs is similar to the latest (i doubt it) it should be extremely easy to measure by chimical markers in the blood or muscles, or by measuring muscular reflex response...
The comparison with muscle fatigue seems pretty off to me. I think it is more of a stress response overload, but it is somewhat analogous.
Have you ever had a near-miss (e.g. almost hit by a car), or a similar experience? you're shaking, your thoughts fail to cohere into directed action, your senses get clouded, etc etc. Think of this as short-term stress overload, analogous to training to failure when weightlifting (caused by local, temporary glycogen exhaustion IIRC). You're fundamentally fine, and can continue doing stuff as soon as your body has the chance to rest even a little.
CFS is more like a longer-term stress overload, that you're describing the muscle analogue of.
As others have pointed out, the muscle fatigue analogy is not the best. However, there are measurable physical differences in ME/CFS patients. See, for example,Keller, Betsy A et al. “Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment.” Journal of translational medicine vol. 12 104. 23 Apr. 2014, doi:10.1186/1479-5876-12-104 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/)
I think a big issue here is that it's hard to measure a "lack of willpower". For example, in many ways I feel like I have less energy than my friends. But on the other hand, when we do stuff like sports together, I feel like they go harder, and they can push me to go harder too. Is this a lack of willpower? Is this a moral failing on my part? I'm not sure.
Another possibility would be a lack of systems instead of a lack of willpower or morality. Lots of self-improvement stuff talks about willpower being overrated, and that you should have systems and/or habits, because these works even when you don't have willpower. But I have a hard time building habits and can break them very easily, while the friend that, to me, has the most willpower told me that if he tells himself to do something every day, he'll just do it without using willpower. It's hard for me to know what is the difference between "forcing yourself to do something, even if you don't want to, every day" and "automatically doing things, every day". I don't know what his internal experience is like and I have no way of comparing it to mine through my perception.
"At least some of the time" is conceding that there are also times where that's *not* the cause - in which case we're still left with a medical mystery.
If we can't distinguish between moral and biological causes in some way, then saying "Have you considered it's due to your moral failings?" to a CFS patient is no better than saying "Have you considered it's because of foul miasmas?" to a cholera patient. Maybe it is, maybe it isn't, but the explanation is dangerously incomplete.
Thanks. I loved your review and was strongly considering making it a finalist, but I decided I could only get away with one psychosomatic-related book, and this essay's section on the West Cure (which led me down a really fascinating rabbit hole) made me unable to resist posting it. I will probably give you an Honorable Mention if I decide to have those.
This was mercifully short compared to the competition, which was a nice change of pace. No footnotes or addenda or appendices or nothing! Only 3 chapters!
Went into the topic expecting a reference to Chronic Lyme and Long Covid; good to see those both covered. I do find it fascinating that CFS is possibly the single biggest determinant of whether Long Covid is A Thing to worry about or not[1][2] - even aside from the exhaustion knocking people out of the workforce, the potential for permanent...IQ loss? brain damage?...is pretty alarming. Whether it's ultimately psychosomatic or not, the grab bag of disabilities is no joke, the bureaucratic diagnostic process is onerous, and losing lots of QALYs for young otherwise healthy sufferers is potentially Big If True. (Although it continues to look like the supposed "9%" figure being out of work due to Long Covid just isn't showing up in aggregate statistics, and therefore suspicious, so I've been updating the other way.)
The lack of any conclusion as to "what is CFS really?" is a bit disappointing; it's certainly okay to look at all the competing theories, decide there's not-especially-distinguishable probabilities for each, and say I Don't Know. Historical intractability certainly leans in this direction. But one generally expects, going into a book like this, that there will be some author-favoured hypothesis. Even if it's totally wrong and off the wall, seeing that thought pocess of selection is useful for calibrating other parts of a book. (Or a review, for that matter.) For my money, I'd be interested to see the anthropological angle of "do pre-agricultural societies suffer exhaustion?" (since pre-industrial is already a yes).
Lastly, I thought the New Big Idea with EBV is that it's got helpful explanatory power because Infections Are Bad Actually? That is, this is one of the viruses we do know is sometimes linked with EBV, and it turns out way more people are infected than we originally supposed. So, even if any given infection is a tiny probability to progress into CFS, there are suddenly a lot more coin flips. I seem to remember reading that this was getting expanded into a new Paradigm, where rather than looking at particular pathogens of concern, generic infection and suboptimal recovery itself is the culprit. So preventing preventable diseaes and infections in general is more important than previously thought, even for things with seemingly-mild acute symptoms. (One could easily mix this with another thing off the Fad Dartboard and declare "ah, it's inflammation that causes CFS!")
CFS from Covid should no longer be a worry, or if a worry at least not a mystery. It's pretty much limited to the normal response after a severe illness: you get very sick, spend some time intubated/ventilated, with days of very low blood oxygenation and viral infection in all your organs - surprise surprise, you have a small but significant change you're not fully recovering from that. It's a real risk, and it's as bad as it's advertised, but it's very much not something you get from flu-like symptoms, the way we used to worry in the beginning of the pandemic.
To avoid Long Covid you do all the normal things you do to avoid regular covid (vaccines, live in a country with Paxlovid etc), and if you're at risk of Long Covid, then you should also worry about simply dying from Covid because they pretty much overlap.
Ah - I haven't kept up beyond what trickles into occasional news summaries from Zvi. If that particular really-poor-outcome outcome actually has been narrowed down to "basically only realistically happens with Real Bad Cases"...then that's pretty much settled and I recalibrate my personal Worry Meter to effectively-zero. It's sure weird living through a Developing Situation. Good test for Bayesian reasoning under uncertainty. Appreciate the update.
I know the hawks still cling to the redoubt of "okay, sure, young people almost never *die*, but they get Long Covid more often/it's the real risk for them! [also vaccinate every child!]". Which would not be valid if the Venn diagram has that much overlap. I do still feel bad for the existing CFS sufferers - I've got a relative like that, wish she could get a cure - but once again it seems like improving society-wide general health is the fairest (or least controversial) approach. Don't think anyone's actually literally against combatting obesity or whatever other comorbidities.
Do you have a citation for that? Because everything I've read still indicates that mild cases of covid can lead to long covid symptoms. If you're saying that there's evidence that long covid is only a result of severe illness and hospitalization, I'd like to see it.
I’m thinking of doing a book review on Oxfordians next time. But it’s better if multiple books, on the same subject, are reviewed. Anyone know if that’s possible.
None of them are interesting except in their duplicity, and illogic. Multiple reviews were/are common enough in newspaper reviews. I’ll just send it off. A year away anyway I suppose.
Just a note on shinkeisuijaku (神経衰弱) which you say is still diagnosed in Japan. Actually this term is rarely used in a medical context anymore; instead it is typically used to refer to the card game where you have to pick up identical pairs of cards, which are placed face down, by remembering their position. In my experience most CFS-type presentations in Japan are blamed on overwork or stress.
Surprised the reviewer didn't mention the popular Spoon Theory. I assume that means that the author didn't, either.
Hopefully with long covid being acknowledged as a real and ubiquitous condition there will be some research and resources into figuring out where the missing spoons go.
Not convinced long Covid isn’t people are generally less active due to lockdown, feel slightly worse but don’t notice> get Covid and get very sick and are substantially less active for a few weeks > people are now under conditioned compare to their normal equilibrium, and 20 lbs heavier > people want an explanation beyond “you got fat and last during Covid/lockdown and need to push through a period of unpleasantness to get back to the place you were”.
And I say that as someone who had Covid, got serious pleurisy a couple weeks later, was hospitalized, and then has had off and on recurring pleurisy since (with no current diagnosis other than “you will probably get better in a. Couple days” which has turned out true).
Do I have “long Covid”? Intermittent serious lung pain for over a year? Shortness of breath.
It has seemed obvious to me since medical school that there could be more than one distinct cause of these symptoms. Lots of patients have fever and we know not to treat all fevers as one clinical entity but with fatigue we seem to keep looking for a single cause. It is very believable that these different entities are different or that there are different patients within any one entity.
Speaking for myself I’ve had disablingly severe fatigue for 27 years but it was diagnosed simultaneously with my very unmistakable brain full of multiple sclerosis lesions. So I have what sure seems familiar to what I hear other fatigue patients go through but I never get the faintest skepticism from any provider about it. I’m lucky to have a clear diagnosis. But it’s easily possible to have far fewer lesions and far more subtle MS. Someone with nearly invisible lesions but my fatigue symptoms could easily be lumped into the chronic fatigue category and not taken seriously despite having the exact same etiology for fatigue.
While I agree on relating to it, I think there is a significant difference there though.
MS symptoms incl. fatigue generally improve with exercise (so much so that HIIT works best, I am currently participating in a follow up study to previous ones showing exactly that and its subjectively been true for me for a long time) , CFS if anything seems to get worse.
I wonder ... scratch that, google is my friend. It seems like people did think to use stimulants (amphetamines, modafinil and such) with some success, albeit with risk of long term crashes. This suggests it's not a purely psychosomatic problem - if it were, you'd expect either failure or better long term response, instead of the murky, success-crash cycles google seems to suggest.
To me it suggests the opposite. Taking stimulant drugs changes the way you think about energy expenditure; it doesn’t actually change your energy expenditure itself. So, for example, if you take amphetamines when you’re about to die of starvation, it’s not likely to lengthen your lifespan.
If people with CFS do lots of things when they take a drug that is known to cause people to suddenly decide they have a ton of energy and do lots of things, it suggests they’re responding typically. What you would expect to see is that it would be entirely ineffective—they would want to do lots of things but they would simply be too tired to do them, the same way a literally starving person given amphetamines will still be too weak to get up and walk.
Not exactly. Stims are commonly prescribed early on in someone's CFS/ME journey. And most accounts on chat boards reveal that any hope is usually quashed soon after discovering the stims make you sick. You're likely to be left "wired and tired" at first, and if you keep trying, your overactive adrenal response leads to flu-like states and a serious crashes. So they are typically unsustainable, but in general, if you can stand the regular use of stims, great, that probably indicates a neurological basis for your illness, and you're one of the lucky ones to get your specific etiology figured out.
So far this is one of the best of the reviews. (Or so I think before reading the actual book.)
But the review and the program of reviews has made me think about the process of rating reviews. Is it possible to properly rate a review without reading some or most of what is being reviewed?
But if a review is critical of a book AND a "well done review", it is unlikely that one would read the underlying tome. (And for good reason.) On the other hand a book review that leads one to pick up the book is planting seeds for its own critique.
For example, the review of Debord's The Society of the Spectacle lead me to actually read GD's work, but it made me think a bit less of review because I'm slightly doubtful how well the reviewer understood Hegel, Marx, the history of post-Marx socialist theoreticians, the situationalists and letterists, and philosophy of art, which are prerequisite to understanding and critique of GD.
Is the purpose of a good review to be a substitute for reading the text or is it something else? A synopsis that is a good starting point for careful consideration of the value of the underlying text. Should book reviews always be read in pairs or groups of reviews?
I will probably seek out "Exhaustion" . The review was a good read. But does make it a good review?
> Should book reviews always be read in pairs or groups of reviews?
This is what I usually look for before committing to reading a nonfiction book. Not because I think there's a strong chance that reviewer variability is unreasonably high - just because I think there's *a* chance. (For the same reason, I think executives and politicians who really care about some issue should commission at least 2 reports. And they shouldn't tell each writer who else is writing a report.)
I also value reviews of 2-5 books on similar subjects. It helps me infer what the reviewer's evaluation criteria really are.
I regard a book review as a literary convention, providing a useful category for essays which start off with some specific source material and then explore territory adjacent, sometimes meandering so far that one has to squint to see a connection to the original book. This seems to be a standard category and it has a long history. Enjoying such an essay does not, in my view, create an obligation to read the source material. That is, unless one wants to be a fair judge in a book review contest where fidelity is a criterion. I don't see anything in Scott's guidelines about fidelity, though.
But every book review in the NYTIMES and any reputable publication is fact checked, so I'd think "fidelity" would necessarily be one aspect of a good review.
Now it could be the case that Scott in coming up with as list of finalists has done that job for us by reading all of the underlying books.
I was a great books undergrad (a zillion years ago) so I might be a snob and think you should always end up reading the actual underlying text.
Almost all the books that are going to be reviewed here do not exist in a vacuum, they are contributions to some field or other. The value of these book reviews (for me) is to put the books in the context of their field. What is the main thesis of the book? How is this new or different from what went before? What are the competing arguments? How convincing is the thesis in the context of wider research?
For books that are arguing directly against the conventions of their field, the context will often be in the book itself. For books that start from first principles and try to root their theses in some history that goes back to the Big Bang/Garden of Eden (looks like this book might be one of those), a good book review would require an author who is a domain expert or at very least widely read in the field to supply the context from their own knowledge.
It is for this reason that I don't particularly rate this review, even though I enjoyed reading it and like the writing style. I want reviews that give me a bigger picture and this one is myopically focused only on its subject book.
For future contests, Scott might consider requiring one upvote from someone who claims to have read the source material or is otherwise familiar with it. This might not require much effort -- Scott's readership is broad enough that such readers already exist in most cases. This would help address the "fascinating review, but reviewer didn't understand or read all of book" problem that seems to have emerged this year.
I got this cluster of fatigue symptoms 3.5 times in my life. Twice, after getting ACL surgeries. Lasted about 5 weeks each time. It was very distinct when it ended, like a light switch got turned back on in my brain.
Then last summer I got a milder case of "blehs" that led me on a blood test wild goose hunt. I found my Vitamin D low and thyroid antibodies high. Macrodosing with Vitamin D for a couple months raised Vitamin D to supraphysiological level with no other symptoms or signs. Thyroid antibodies still aren't all the way down. Sometime last fall, the blehs faded away.
The 0.5 time was this June when I tweaked my back and was on ibuprofen and muscle relaxants over a weekend. I eventually dragged my bum to the gym and did a kettlebell workout for lower back pain. Pain didn't come back, and fatigue cleared the morning after.
Based on personal experience, I conclude that fatigue (at least in some people) is the body's natural convalescence mechanism that is failing to shut down.
Yes, certainly the nervous system is out of whack, meaning parasympathetic responses are deprecated, and research has shown sympathetic responses are unnaturally elevated. It's not yet known why, but clearly your experiences are of the world of the normal, and are unrecognizable to those with severe CFS/ME, those who have been waiting for that "switch" to turn back on for years, trying everything with no success.
My guess (above) is that this fatigue is your body thinking it's still sick.
If my guess is right: figure out why your body thinks it's still sick and address the underlying problem.
I assume there's also medical literature out there on convalescence that would be more useful than literature on CFS or anything else cited in this book. I haven't looked myself.
Do you have post-exertional malaise, meaning you feel more exhausted after exerting yourself physically or mentally while other people seem to recover? If so, then you ought to read more about CFS/ME. A lot more is known than when this book was written (2016). For instance, it now appears that a number of people with CFS/ME have neck/spine instability that can be treated.
The stories I hear about CFS/ME seem to be about extremely energetic people-- high pressure job, athlete, raising a family, possibly another hobby in addition.
It is just that CFS is a strong contrast when it hits that sort of person, or is it less likely to hit people with low or average energy expenditure?
I've seen anecdotal evidence on chat boards that do indicate a particular pattern of Type-A types getting sick, so that's definitely one manifestation, but I don't get the sense they make up a massive majority.
One important project would be an extremely comprehensive survey about all aspects of life and history of those with CFS/ME. I'd love to see if patterns show up -- whether biological, psychological, behavioral, etc.
Does the former marathon runner have the same basic systemic disruption as the person who never recovered after a viral infection, or the person who was abused as a child? My suspicion is that long after such stressors have been removed and dealt with, they can still physically lock up the nervous system in remarkably similar ways -- and it could have just been an idiosyncratic fluke in some, like getting an infection at just the wrong time. We simply do not yet know.
CFS/ME could be caused by overexertion exacerbating or creating cerebrospinal injury/malformation. Many people with CFS/ME seem to have craniocervical or altoaxial instability and at least some have had their CFS/ME cured through surgery or simply through cranial traction. The instability is theorized to be caused by genetic susceptibility or through a reaction to EBV or some other virus causing lax ligaments.
This is interesting-- it never occurred to me that CFS/ME could be the result of a macro brain problem rather than something more subtle and metabolic.
If you want to read more about this, Jen Brea's series about it on her Medium blog is really great. For part of her reasoning for why she thinks a lot more people with CFS/ME have similar issues as she had, see this:
I'd just like to add that this book is from 2016 and is thus missing the last 6 years of thought and research on CFS/ME. One of the greatest findings in the last 6 years is that a number of people with severe CFS/ME have their symptoms disappear following cranial traction.
I didn't read the whole thing yet - but I think I did have this 'syndrome' when I was a teenager. It mostly went away - through possibly I have timing wrong\* - when I started using modafinil. Before I started earning income to purchase it through _unofficial_ channels I wanted to try it - few annoying doctor's visits later I was just told I'm lying by some neurologist (IIRC) and gave up. I hate the guild system which enables state paternalism.
\* seems unlikely because if I don't use it or other stims, I think I function much the same as I did before I started (sleepy/tired most of the time, despite adequate sleep). Unless my memory is faulty and it's just substance dependence.
Writing in which disparagement of Christian intellectual history outstrips understanding of it is a pet peeve of mine, and this review's superficial treatment of "acedia something something sexual sin something something Protestant ethic" certainly qualifies. (I suspect this is mostly the reviewer's fault and not Schaffner's because Alan Jacobs cites her approvingly: https://blog.ayjay.org/exhaustion-its-causes-and-treatments/) Between that and the generally disappointing level of engagement and critique in this review, I don't expect to vote for it. On the other hand, it's well written (except for the last sentence), covers an interesting and relevant topic informatively, and does a great job of communicating the book's overall argument concisely. It made me want to actually read the book to understand the topic better, which is how an effective review of a good book should work. As always, many thanks for contributing!
There are some comments accusing historical monks of malingering, being able to “get away with fatigue”, and this is so magnificently incorrect that I had to make an account to comment. (If you don’t know what life was like for a member of a monastic order, you really shouldn’t produce such terrible opinions, which is a true intellectual version of malingering.)
A medieval monk existed in a culture that prioritized obligation to the order over everything. It took on spiritual importance, literally: everything that a medieval religious person valued was associated with God, and failure to adequately worship God would be the most punishing and shameful thing imaginable, something that could lead eternal damnation, virtual eternal suffering. In other words, all psychological and spiritual value would be motivating the monk to continue his duties. It’s hard for us moderns to grasp how significant religion was to a medieval person, but failing to meet one’s religious duties would be worse than an immigrant student disappointing his parents’ wishes to become a doctor, while also disappointing all of his teachers, while also disappointing most celebrities and his favorite musicians, while also disappointing the producer of all of your favorite art and media (the church).
But not only is the monk maximally motivated to fulfill his obligations in a psychological and emotional sense. He was also maximally motivated because he would face social punishment and physical punishment if he failed. He would be disappointing virtually everyone that he interacted with (his brethren). He would be criticized by his order’s leadership. Last but not least, the monk would face punishments that are no longer found in the modern era: long daily fasts, long painful hours kneeling in prayer, and corporal punishment which may include self-flagellation or the wearing of rough painful hairshirts and “bracelets” that stabbed the thighs.
So to sum up, a monk is not someone who can “get away” with malingering. This betrays profound ignorance of history. A monk is someone who existed within one of the most sensitive contexts of reward and punishment in history. The fact that monks suffered from this means we ought to exclude malingering entirely from the options.
What the victims had in common was intense intellectual work. Lots of abstract creative and wordy work. The cures invariably reduced the amount of intellectual labor, both the “Rest” and the “West” cures. True deep creative work is costly. We’re not talking about “reading a passage and replying with the answer”, which is schoolwork and non-intellectual. We’re talking about creative insight which relies on stressing the mind to produce new answers, something very different than the rote response of normal reading/writing.
The masturbation passages are interesting. Insofar as intercourse is a motivator in human behavior, masturbation would reduce motivation and thus perceived energy. This is obvious. But the overemphasis on masturbation was likely (1) moralistic and (2) confusion over cause/correlation. Many mentally I’ll men compulsively masturbate and this may have lead doctors to believe masturbation was the cause. These combined likely explain the emphasis on masturbation in some of the 18th century literature. Frequent sex is not a social “demotivator” because it requires pro-social actions for coitus with a woman to occur. Even going to a prostitute requires much more physical effort than masturbation.
One more comment: low dose naltrexone, an opioid *ant*agonist has recently been used with some success in treating CFS. This implicates pain sensitivity in CFS, as naltrexone induces the body to upregulate opioid receptors. This calls back to historical views on intellectual activity and “sensitivity”: for most of European history it was believed intellectual activity required a sensitivity to pain (and all stimuli). This is where “nervous” diseases come from, the belief that the nerves were particularly sensitive. If CFS is indeed linked to a long-developed hyper-sensitivity to pain and stimuli (likely), it does sort of justify the old view on neurasthenia as sensitive nerves.
Just a guess, but maybe could be due to issues with inhibitory neurons producing epileptic-like over excitatory behaviour.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4721588/#:~:text=Autism%20is%20thought%20to%20arise,function%20%5B188%2C%20222%5D.
Wondering if you can flesh out this statement some more:
"The biopsychosocial model failed,"
Thanks!
They seem to be taking offense to being told they have a mental illness when that’s not their experience of what’s happening to them. It doesn’t seem that they have an issue with the existence of mental illness. In my opinion, it doesn’t sound like prejudice, just frustration.
That's true. Having said that, a panic attack is a clear diagnosis that has next steps attached to it. I think people with CFS often get told a variation on it being in their head, now go away. I can see how that's frustrating, and I think it's distinct from prejudice. It's like those college health center stories lots of people have. For instance, I once had pneumonia and was told it was probably just allergies. I wasn't too happy, and it wasn't because I had any hostility towards allergy sufferers.
Or it might have nothing to do with mental illness. Or it might be a combination of etiologies. Or it might exacerbate preexisting neuroses. Whatever.
Just be aware that the consequences of the assumptions you express in your comments are more subtle and more insidious than doctors insulting patients overtly. Most people won't scoff in your face, or accuse you of faking it. They hold such opinions quietly, or express them behind your back. Sometimes they'll joke about your neuropathies being "all in your head," but mostly your co-workers (if you're still trying to work), and even your friends and family, will simply choose to pretend your disease doesn't exist. It's a severe form of gaslighting, since your core existential condition is being perpetually ignored, while another co-worker with a proper label, say "diabetes," receives a normal, appropriate amount of recognition, sympathy, and accommodation for limitations.
It seems remarkable, I know, but the human brain still has major trouble imagining anything that hasn't yet been proven or discovered. This is nothing new. Throughout history we've blamed many diseases on the sufferers until we understood them better.
I've generally felt entirely unqualified to comment under ACT/SSC posts but as I have this diagnosis this is finally my chance... though I should stress just my own views and not necessarily that of the "CFS community" if any such thing really exists:
Firstly, I don't think it's just patients that have such a prejudice. My first experience on being diagnosed was being told by my physician (in response to me asking I how could have contracted a disease that I heretofore didn't believe was real) "no no, there's something actually wrong with you, not like those women who just won't get out of bed all day".
Secondly, and more importantly in my view, a lot of criticism of (IMV) ineffective therapies is framed as prejudice against mental illness. Please trust me when I say that if I could wave a magic wand such that a psychological cause was proven and the two main therapies (CBT/GET) were massively effective, I would jump at the chance. I would much rather have a treatable mental illness than this vaguely defined condition whose prognosis is poor.
And, trying to be as aware of any of my own biases as much as possible ('am I dismissing this because I don't want to believe?'), I still land on the fact that these 'potentially effective treatments' really have an incredibly poor evidence base. The results from unblinded trials with subjective endpoints are consistent with little more than a transient placebo response - the effects are not matched by improvements on objective measures and the effects have never been shown to be maintained at long-term follow up. Couple that with multiple patient reports of getting worse or even being permanently damaged by GET, and I would recharachterise "rejecting potentially effective treatments" as "rejecting a potentially harmful treatment whose efficacy is poor at best, non-existent at worse". The fact that NICE has now moved away from approving these treatments suggests that perhaps the patients might have had a point?
I suppose the final thing that makes me cautious about accepting a psychosomatic explanation (apart, again, possibly from my own biases) is that whilst there is a long history of unexplained conditions throughout the ages as discussed in this book review, there is also a decently long history of conditions being ascribed as psychiatric in nature right up until new evidence comes along, at which point the people who were pushing that narrative seem to move on without any kind of reflection. See stomach ulcers being ascribed to stress, or refrigerator mother theory for autism, or the 'multiple sclerosis personality'. That doesn't mean that CFS will similarly be debunked, but that we should be very cautious about assuming that anything that we cannot explain easily must all be down to "negative beliefs"
<returns to another decade lurking>
Thanks. I think this is why it's important to distinguish between criticism of ineffective treatments and debates about physical/psychological in nature. Personally I'm interested in the latter *only* to the extent that it leads to shoddy treatment and shoddy experimental practice.
The problem with the psychogenic explanation is not only that it's a cop out ("I can't explain this" = "the patient is imagining things") but I think it also explains why some of the evidence base is so poor. Researchers in this field have been blasé about things like the placebo effect because they in some part view their own treatment as being placebo in nature, and blasé about subjective measurements because they view the condition as entirely subjective. It's how we've ended up with apparently serious research output that recommends a process that has multiple sclerosis patients jumping around chanting 'I'm strong like a tree' [1] as being effective for ME/CFS without a scintilla of consideration as to whether that might imply the trial design is nonsense. It also leads researchers into a bunker mentality in which *any* criticism is viewed as bad faith by 'militant activists'.
On the CBT front, in addition to the points raised by C-- below, I would add that CBT in the ME/CFS space has traditionally differed somewhat from that provided for other chronic conditions. In the latter, it's deployed in a supportive/adaptive role in the sense that it's about how to cope with the condition. In ME/CFS it's generally been about correcting the 'maladaptive belief' that you even have the condition in the first place. The recent NICE guidelines do continue to recommend CBT is offered to those who want it, but that it is deployed as for chronic conditions elsewhere.
[1] https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue
My sister was never diagnosed with cfs, but she experienced symptoms that match what is described here. The story of how she recovered is pretty unbelievable (as in, I literally don't think anyone here would believe me if I described it), but it was connected to another somewhat known but very poorly understood condition/phenomenon. So I have to ask, have you ever experienced sleep paralysis?
I don't know whether I'll believe the story, but I've had enough weirdness that I'm interested to read it.
I'm interested! Bordering on the edge of the symptoms described here, have occasionally experienced sleep paralysis in the mornings, chronic snorer (sleep apnoea?)
If that's something you would feel comfortable telling us, I, for one, would love to read it. I had a few events in my life that I had to describe "You would not believe this, but...", but none of them were all that important.
Thank you for sharing your experience. It takes bravery given the widespread skepticism regarding CFS.
As far as I know, I have never met someone with CFS. There is a strange series of questions I've been wanting to ask, and I'm self-centered enough to hope that this is an appropriate moment.
What happens if you have to run to save yourself from grave bodily harm, say from a dog or a bear? I can imagine someone with CFS predicting, 'I run until I'm safe inside a house, and then I'm more exhausted than ever.' But what if the dog/bear finds its way into the house, and the cycle of running for shelter repeats?
To generalize, if someone with CFS has to run for their life for 30 seconds, then gets a 10-second breather, then has to run again, do they collapse sooner than 1) an otherwise comparable person with neither depression nor CFS, or 2) an otherwise comparable person with depression but not CFS?
And when the person with CFS does eventually collapse, does the cause differ from the cause of persons 1) or 2) collapsing?
Happy to respond, though I should point out I'm what would be classified as a 'mild' case in the sense that I'm in the 25% of patients that still works (an office-based job that allows some working from home and involves little physical activity, thankfully) - to give a sense, my step count reduced from ~7k/day pre-illness to, with pacing, just under half that today. Though during one flare I had a month averaging <400/day where I basically couldn't do anything. Some people have it far, far worse.
I think the key thing to bear in mind is that the cardinal symptom of ME/CFS isn't really tiredness per se, it's post-exertional malaise (PEM) - with the emphasis on 'post'. So if I overdo things (not avoiding bear attacks, but say my wife is ill and I have to look after the kids, or I can't find a parking space and have to walk further than planned), the payback really comes the following day. So, in your example, I could run if needed. However, it is the following day that the PEM really kicks in. It's hard to describe, more like when you're just starting to come down with flu, or a really bad hangover*. Everything becomes an effort: moving is hard, thinking is hard. I find I will lose words, can suffer nerve/joint pain. If I've really overdone it, I might become hypersensitive to sound or touch, and find comprehension difficult. At my worst (the 400 steps/day period), I would watch TV and whilst I could understand each individual word, I struggled to understand what was really going on and what people were saying - it was like how I imagine dementia to be. The delayed nature of PEM to my mind also is an argument against the fear/deconditioning hypothesis - if it was fear of action leading to deconditioning, why would the symptoms start with a decent delay *after* activity.
So, back to your bear question: if it was Day 1, I would escape the bear. If it was the following day, it would eventually reach a point where I would no longer be able to will my limbs into action. In terms of comparing with depression (which I've never had, but know people that have), I would draw the following distinguishing factors: 1) no lack of motivation - ask an ME/CFS patient what they'd do without the condition and you'll find we have quite a long bucket list; 2) no anhedonia - even at my worst I've found I can find a grim laugh somewhere.
*Interestingly I've found people recovering from Covid or EBV describe similar symptoms. We seem to have drawn a bright line where this is 'normal' if it lasts for a couple of months and then resolves, but is psychosomatic the moment it crosses that line - yet AFAIK the mechanism for these symptoms in the first couple of months is also not well understood.
Thanks for the thoughtful response. I'm glad you only have a mild case. I hope it resolves somehow, so you can tackle your own bucket list.
With regards to your final paragraph, I wonder if there's a continuous probability distribution for the duration of this class of symptoms, and doctors have somehow decided that any symptoms lasting beyond e.g. 2 standard deviations are more likely psychosomatic than not. Ideally this would have additional data behind it, rather than just distance from the median. (This is just speculation on a subject I have no familiarity with.)
The "gun to the head" argument is the simpler version of your thought experiment. Apparently some people believe that if you could do something with a gun to your head, you should be able to do that same thing anytime. If you can get out of bed when the house is on fire, you should be able to get out of bed every morning, which of course is totally irrational. Chronically sick people have a perfect right to strive to manage their condition so they're not so miserable and constantly deteriorating.
Here's another way to think about it. Research shows mitochondrial energy production is severely limited with CFS/ME. This means when you absolutely have to force yourself to do something, you're using primarily stress energy to get it done, which contributes to the disease cycle just as surely as injecting poison, since the adrenal system has been so chronically abused. So you learn to avoid adrenal activity as much as possible, and you do your best to manage the impact when it can't be avoided. That's the simplified bottom line, but the spectrum is way too diverse to make the kind of summary comparisons you're attempting.
There is good reason for this among women whose symptoms are dismissed as “in your head” and therefore unserious as a matter of course. Studies about ER opioid prescription bear this out, but here’s an anecdote: I had chronic pain for 15 years and was waved away with OTC painkillers, then they finally cut open my gut and found an inflamed hellscape of scarring and adhesions. Years later and unrelated, I had 10/10 acute pain and was sent home from the ER with OTC painkillers; they found out upon my return to the ER that it was internal bleeding. I narrowly escaped death. In the future, if a doctor dares to say that my physical symptom is caused by a psychological issue, I will rage even if there is a chance they are correct.
"Extremely rare" in the sense that it's a small percentage of the total number of patient interactions with medical providers and "extremely rare" in the sense that it hardly ever happens are different propositions, given the high number of interactions. And given that it's known that both sex bias and racial bias are issues in pain management (a quick search for "[racial|gender|sex] bias in pain assessment" will turn up plenty of recent research), I'm not sure it's reasonable to say that this isn't normal for any race or sex. It doesn't seem to be all that uncommon.
Sounds shocking, doesn’t it? My chronic pain condition is endometriosis and affects 10% of women. Diagnosis is delayed on average 7-10 years (plenty of research on this). The internal bleeding was a very rare medical event, but I was at a top ranking teaching hospital in a coastal urban center. It became a case report and they changed some of their procedures in that department afterwards. As Mario said, bias in pain management is well documented. It is not rare.
Yes as I said verbatim, the internal bleeding was a very rare medical event. The dismissal of the extreme pain with a mysterious cause is *NOT rare*. The attending could not be bothered to admit me after initial tests were inconclusive. As I also said, endometriosis affects 10% of women, ~200 million. That’s a huge number of people with chronic pain and abdominal inflammation/scarring who are told it’s no big deal for the first decade of suffering.
Another way you could look at it is that, statistically, doctors will sometimes encounter patients they don't understand. Combine that with a bloated healthcare system leaving doctors perpetually rushed, and you have a perfect environment for rationalist doctors to triage the difficult patients.
Which is exactly what happens, all too often. If you want, you could argue this is the most pragmatic solution, since the system works relatively well for the majority, but do not fool yourself into believing these "bad" experiences are anomalies. They are built in, and predictable.
This is not true. So. Very similar to the famous case of doctors telling women with extreme period related suffering to faff off or saying that various female reproductive medical procedures are painless when they clearly aren't. Or the famous air conditioning issue where it was systematized for a 155 pound 40 year old suit wearing man.
People like you are the problem.
Interesting! I like that this comment finally gave me an excuse to skim Bentham's essay where he argues against banning homosexuality. This passage on masturbation comes at the end, and his point is that no country bans masturbation the way they ban male homosexuality, because obviously they can't, and since masturbation is obviously so much more exhausting than homosexuality, and there's no other harms from homosexuality (at least, in Europe, where women's sexuality is highly regulated - in Tahiti (Otaheite), where people are free to have sex when they want, women would have a right to complain every time two men waste their sex on each other instead of satisfying their demands), they should legalize homosexuality everywhere. (And also should cease the practice of burning the animal that is the victim of bestiality.)
http://www.columbia.edu/cu/lweb/eresources/exhibitions/sw25/bentham/
How is masturbation more exhausting than sex between two people? I could argue otherwise.
So could I, but Bentham says "The reason of this is not clear; but the fact is certain. Physicians are all agreed about it."
Well what do they mean by exhaustion? Sex with a lover lasts much longer, (hopefully) than masturbation. Do they mean that masturbation gets me to the soporific state sooner? (I'd agree with that.)
You might already be aware of this, but people in the 18th and 19th centuries had a lot of very strong beliefs about the human body that turned out to be nonsense.
He means the loss of vital essences. You must remember Bentham's framing here- the scientific belief at the time was that semen was some kind of distilled elan vital of the male body, and thus masturbation was a waste of this energy.
I would argue this is actually a case of Orientalist thought influencing the West at the time, as the belief that semen = life-force (or rather, yang energy) was extremely prominent in Chinese culture through Taoism, with the belief that men who masturbated excessively would become frailer and more feminine as they disturbed the balance between yin and yang energy in their body. In a counterpart to this it was believed by some Taoists that through the right sexual practices a man could become immortal by attaining a perfect harmony between yin and yang energy in his body (as sex was seen not merely as a wasteful release of energy, but an exchange of it between sexual partners).
Well, the actual word Bentham's using (at least in the quote above) is "enervating." Not "getting tired out," in other words, but "losing vital strength."
I suspect that the background framework for any premodern/early modern physician who's thinking about these questions isn't really subjective sexual experience at all.
Rather, it's the blatantly obvious behavioral differences between intact and gelded male domesticated animals. You could easily get from those observable differences to a paradigm that's something like this:
1. Only males who keep on making sperm can sustain a high level of aggressivity.
2. Volume of sperm thus seems closely correlated to aggressivity.
3. In general, then, we'd expect depletion of sperm to result in enervation.
4. But intact males don't manifest any obvious loss of aggressivity after having sex.
5. That suggests that enervation for some mysterious reason only results from loss of sperm for reasons *besides* genital sex.
Galen taught that sperm was from the bone marrow, so jacking off was squirting out your bone marrow. Hollow bones = enervated.
He obviously wasn't doing it right "~}
Huh? OK unless I've gotta squeeze, (lover), I get a stiffy every morning ~5-6am. I masturbate, and go back to sleep... because it is soporific. I don't think this has caused any health or happiness effects. Well only as much as not having a lover sucks.
Oh I need to add that at the moment I'm very happy and healthy.... neither of which has to do with masturbation.
So with apologies to UCL alumni, Bentham was a pathetic wanker "~}
Pretty sure that was already the monks’ explanation
I hope you mean "100% 'partly,'" Unsigned. The evidence that anti-depressants have effects beyond placebo for many patients isn't disputable. But certainly the promotion of biological as opposed to psychological/psychosocial etiologies is motivated in part by the fact that the explanation is moderately destigmatizing.
"because it isn't *really* a psychological problem if you can dig deep enough and find an explanation in tissue"
I don't get why. Unless we take a radical dualist position on the mind body problem, presumably it's possible to find an explanation for every thought, emotion, and personality trait in tissue. Why did the criminal commit murder? Because such-and-such neurons are linked in such-and-such a way, giving him a propensity to murder; and certain neurons fired at the right moments, causing his hand to lift up his gun and squeeze the trigger. But this does not mean his propensity to murder is not really psychological, or even that he's not morally responsible for his acts.
I don't think general reduction to neuron-level description is a relevant frame for this, dionysus: correlations between actions and neural states answer "how" questions, but not "why." All mental states are equally reducible to material correlates, even for non-Cartesians who view consciousness as emergent from a material base. All the reduction does per se is reduce the behavior from a holistic to a granular model.
However, when you specify that certain neuronal patterns yield propensities to murder, you are not just describing the specific material correlate to a mental state, you moving from description to analysis, distinguishing a particular neuronal array from a regularity--lack of propensity to murder--which does not share the same neuronal pattern or behavioral correlate. That can indeed have explanatory value.
We see this sort of thing in forensic practice in cases of CTE, where, for example, aging ex-athletes in contact sports exhibit bizarre and violent behavior, and an explanation is provided by post-mortem observation of brain abnormalities caused by a history of concussions. Whether the propensity for violence is "psychological" or not depends on how you use the term, but the neuronal pathology certainly affects judgments of moral responsibility. Those are cases where reduction to the neuronal level provides explanatory power, and there are many others.
CFS is an affective/behavioral pathology. It's a broad enough category to expect there are multiple etiologies. All may be "psychological" (generated by habitual personality features and personal experience), all may be organic (generated by genetic or environmentally produced drivers, outside the awareness and control of the individual), or there may be many complex combinations of both (place your bet here).
Well, this is the crux of the issue. Psychopaths are held to be morally responsible for their antisocial behavior, whereas those afflicted with many other conditions aren't. Everybody is obviously incentivized to absolve themselves of responsibility, and the less your case is considered to be amenable to willpower the better.
"Everybody is obviously incentivized to absolve themselves of responsibility"
After the fact, of course. Many people do this pretty routinely when they've caused social damage--make excuses that shift responsibility/blame. ("I'm sorry I behaved that way, but I wasn't myself because of a migraine and a sleepless night . . .") It's standard in all kinds of legal defenses. And in both cases it tends to work to a degree--we forgive people, we mitigate sentences . . . if we believe them and judge the excuse sufficient.
Why you think this is not true of "psychopaths" is a puzzle to me. My understanding is that it is ordinary for diagnosed psychopathology to be introduced as evidence in legal proceedings, both pertaining to guilt and to sentencing (length and conditions of incarceration). Claims concerning any level of cognitive/affective dysfunction are subject to examination and adjudicated by the court. But perhaps you are using some restricted definition of "psychopath." Would Ted Kaczynski have fit your definition? His psychopathology allowed him to evade the death penalty (apparently against his wishes).
I think I'm using the common definition (they understand that their actions are immoral but disregard it), and mainstream psychology seems to agree: https://www.psychologytoday.com/us/blog/the-superhuman-mind/201909/are-psychopaths-mad-or-bad
Quote: "The insanity defense is generally not available to psychopaths under U.S. legislation, because they fail to satisfy the conditions outlined in the M’Naghten Rules. They can identify and provide full details of the crimes they committed, and they know that carrying out actions of this nature is legally wrong."
The Kaczynski case is entirely in line with this. He considered himself sane, and the insanity defense of his lawyers was based on additionally diagnosed conditions.
Thanks for replying with data, Xpym. Your citation supports your use of the term, and under that use you're correct when it comes to verdicts of "innocent by reason of insanity."
Having cultivated expertise on this over the course of many minutes, including research beyond even Wikipedia, the reason your use of the term works seems to be because in legal contexts, the definition of "psychopath" is generally entirely in terms of conduct: e.g., failure to conform to social norms; deceitfulness; impulsivity; aggressiveness; reckless disregard for safety; lack of remorse (this is abridging the DSM-IV). These all describe histories of antisocial behavior, and it makes sense that histories of antisocial behavior cannot be used to mitigate punishment for antisocial behavior. Consequently, your sentence, "Psychopaths are held to be morally responsible for their antisocial behavior," unpacks as, "People with established histories of antisocial behavior are held to be morally responsible for their antisocial behavior." (Lack of remorse is an outlier, but more below.)
In Kaczynski's case, he refused to use the insanity defense, but his lawyers ultimately brokered a deal based on a diagnosis of paranoid schizophrenia. Some definitions of psychopathy include schizophrenia as a common component. In fact, there are many other challenges to the adequacy of the DSM-IV definition, and Kaczynski would fit some of them. Some neuroscientists, including Antonio Damascio (who is both a researcher and a good popular science writer, though not to my taste), have found that the empathy deficits linked to behavior common to psychopaths are associated with damage or deformation in certain areas of the prefrontal cortex, leading to difficulty in engaging ethical calculation in action choices. (This is Wikipedia stuff.) This would alter the role of lack of remorse in the DSM definition to the essential feature. If that were so, it could change both the forensic tests for psychopathy and its legal status.
When I sent my message, I replaced John Hinckley, much in the news lately, with Kaczynski. Hinckley was, in fact, sentenced under an insanity plea--perhaps I should have chosen him. However, I actually learned a lot trying to put together this face-saving response, which gives you the win in the argument.
You'll find more on this in Foucault's "Madness and Civilization"
“But what is CFS really? Schaffner’s view is that it’s the newest explanation for an age-old set of linked experiences that people have suffered and written about for thousands of years.”
This doesn’t count as an “explanation” to me, just a characterization. *Why* are they linked, what if anything unites the cases? A viral agent, a hormonal imbalance, a psychological cause, mere malingering? Perhaps a combination of the above, different ones for different people? Perhaps none of the above, maybe people are mistaking causally and experientially distinct phenomena for a single thing and inventing a false category?
It’s fine, even advisable, for the author of a book on the topic to remain agnostic on this question, since it seems unsettled. But that refusal to explain shouldn’t be presented as an explanation in itself. I can’t tell if this is principally the book’s or the reviewer’s failing.
It’s fine to not be more specific. But to present that as an explanation, rather than the absence of an explanation—that’s what bothers me. Again, no idea if that’s a fair representation of the book, this could be purely a misrepresentation by the reviewer.
Hang on, seems like you’ve got the book and the reviewer backwards. They’re not trying to explain the underlying cause in this passage, they’re trying to explain CFS, the current medical term, which is distinct from the historical phenomenon. The historical phenomenon, as alluded to later, has no empirically proven mechanism of action, which both book and reviewer state.
I had exactly the same thought reading it. "So really the explanation is <not an explanation>". Agreed that explicitly stating the lack of an answer would have been preferable. (Overall very good though, especially given the difficulty of trying to interestingly summarize a topic whose real summary is "🤷♂️".)
Don't you see, it's obviously engendered by a dormatively potent cause.
I just looked up which Molière play that phrase is from - and it turns out to be a play accusing a chronic fatigue sufferer of making it all up: https://en.wikipedia.org/wiki/The_Imaginary_Invalid
Holy moly, we’ve come full circle!
Of Moliere's two quotes that are hugely famous in the English speaking world, I always felt the "dormitive property" one was overstated:
"I am asked by the learned doctor the cause and reason why opium causes sleep. To which I reply, because it has a dormitive property, whose nature is to lull the senses to sleep."
OK, but lots of important scientific concepts get named in exactly that way.
In contrast, I have no objections to the wonderful:
"My faith! For more than forty years I have been speaking prose while knowing nothing of it, and I am the most obliged person in the world to you for telling me so."
It doesn't sound like Schaffner believes that she has explained the phenomenon. She's saying that CFS seems to be the newest name for a historically well documented phenomenon, and that nobody knows what causes it. In other words, we don't know why it happens but we know its a real thing and has been since time immemorial. Which at least is evidence that CFS people aren't faking.
We know that it has been happening for a while, but not sure how we know that it is 'real'?
Malingering is also a real thing and has been since time immemorial.
(To be clear, I don’t argue that CFS is purely malingering. To me it’s obviously a lot of things but mostly psychosomatic depression, a somatic symptom disorder, with maybe a few cases being malingering, and a few more factitious illness.)
What I do argue is that the standard of evidence you’re holding up to dispute faking is really low. The only conclusive way to rule out faking is to find evidence that cannot plausibly be faked; mere similarity with other historical illnesses doesn’t prove anything or even suggest anything: that also could have been faking!
I don't see how, from the presented evidence, you can decide that CFS is clearly anything in particular, except, possibly, real. To me it sounds like a syndrome rather than a disease. I.e. a collection of different diseases that happen to have the same symptoms. But I wouldn't give even that a high certainty.
I don’t know what “real” means in this context: not psychological? Not psychosomatic? Not all malingering? Not factitious? All of those phenomena are real. Maybe I can tell you what I think if you define your terms.
Anyway, I agree with you, as I said: it’s almost certain that CFS is not *one* disease with *one* cause. But I’m fairly confident that most cases of CFS are psychosomatic for the following reasons: none of the symptoms can’t be caused psychosomatically; it appears most often in populations that are particularly vulnerable to psychosomatic illness; the most effective treatments are psychological treatments, not physical, and they are about as effective as psychological treatments prescribed for similar psychological ailments; the malaise experienced by sufferers is not alleviated by rest, but the sufferers desire rest regardless and push back against treatments that work badly in favor of those that don’t work at all; there is significant crossover in symptoms and sufferers with depression, anxiety, and fibromyalgia (another somatic symptom disorder). And lastly, the more your living conditions are directly supported by necessary physical labor (a case that does not occur in the First World due to safety nets), the less likely you are to have it.
I could be wrong about this. But my personal experience with CFS and fibro sufferers is what led me to investigate this, so anecdotes from the same elicit little change in my opinion now. I’m looking for a more scientific grounding to change my mind and the probabilities aren’t looking good for that.
I would push back on most of your assumptions, but just to pick a couple: many neurologists equate fibromyalgia with small-fiber neuropathy, so it should not be written off as somatic. In fact it's just one example of the many umbrellas that CFS can fall under. Connective tissue disorders is another common one. POTS is another. And of course many patients are still searching for relevant associations while society tells them to shut up and see a shrink.
When you say "the sufferers desire rest regardless and push back against treatments that work badly in favor of those that don’t work at all," I believe you're referring to patients who choose no-action versus action that is likely to trigger a painful crash and continuation of debilitation. This is something only they can gauge, using the experience of their bodies as a guide, and they have every right to try to manage their chronic disease and lead happier lives as sick people.
I don’t find the evidence that fibromyalgia is not a somatic symptom disorder very convincing. Perhaps someone will find something new someday.
People have every right to choose whatever course of action they wish. No one said otherwise. But I’m not going to bandy words about ‘lived experience’; I’m interested in what society can do for people afflicted, and at this point letting treatment be led by the sufferer’s feelings and fatigue appears to yield nothing.
A quarter of a century ago, I reviewed a similar book "Hystories" by Elaine Showalter, another literary critic, on "hysteria" -- i.e., problems that might be medical or might be physical that caused 19th Century ladies who could afford servants to take to their beds for months or years at a time and how they might possibly be related to other more recent maladies. It doesn't sound like much has changed:
H Y S T E R I A, H I S A N D H E R S, published in National Review, 9/1/97 -- by STEVE SAILER
SOMETIMES you get what you ask for. Back in 1985 Elaine Showalter, a Princeton English professor specializing in the social history of mental health, concluded her critique of the traditional psychotherapy profession by proclaiming: "The best hope for the future is the feminist therapy movement."
By 1997, the mental-health industry has become thoroughly feminized, but Professor Showalter has had second thoughts: "The therapist's role is more and more to affirm, support, and endorse the patient's narrative, . . . and not to challenge the truth or historical reality of the patient's assertions." This credulous atmosphere, she believes, has helped unleash "hysterical epidemics," such as the disgraceful witchhunts for satanic cults running day-care centers.
Mrs. Showalter cites five other "hysterical'' outbreaks: the booms in recovered memory of incestuous abuse, multiple-personality disorders, alien abductions, Chronic Fatigue Syndrome, and Gulf War Syndrome. For an academic treatise with a first printing of only 7,500 copies, Hystories has already generated quite a backlash. In hounding the author, Chronic Fatigue sufferers have proved especially energetic...
Mrs. Showalter's strongest chapters are on epidemics like the satanic-abuse and alien-abduction scares, whose alleged causes are wholly imaginary; and on Gulf War Syndrome, whose primary cause is real but not specific to that conflict: "war makes people sick." While it may turn out that chemical weapons or sand fleas really did afflict some minority of the sufferers, on the whole GWS appears to be the latest version of what other eras labeled "shell shock," "battle fatigue," or "post-traumatic stress disorder." America must realize that one of the costs of going to war is later paying fully for treatment and disability leaves for a substantial number of psychologically injured soldiers, although treating mental traumas as honorable wounds will no doubt let some hypochondriacs and malingerers slip through. . .
Unfortunately, Miss Showalter's literary world view is too black-and-white for those epidemics where some but not all of the patients' stories are true, e.g., incestuous abuse. The acrimony of these debates stems in part from both sides' thinking about all patients as Platonic abstractions ("incest victims" v. "hysterics"). In reality, mental health is more like an unsettlingly random pachinko game. The classic case study of how psychological debates tend toward dogmatism has been running for a full century since Sigmund Freud analyzed 18 unhappy young women. After much bullying by Freud, they all produced stories of childhood sexual abuse. First announcing an epidemic of incest, Freud then publicly changed his mind and blamed all the women for repressing Oedipal fantasies. Millions of words have since been written about this controversy. Most feminists contend that all 18 really were incest victims. In contrast, after a decade of listening to the nonsensical narratives that present-day therapists can elicit, Professor Showalter thinks Freud was right to recant...
Few, however, seem to have remarked how unlikely it is that any single diagnosis was right for all 18. In truth, some of the troubled women probably were child-abuse victims, while some others may have been repressing guilty fantasies. Probably a large proportion were suffering from other root problems that weren't understood back then, such as chemical imbalances in the brain that strike largely at random. ...
A beneficial side effect of a more realistic conception of hysterical epidemics allows this useful concept to be profitably applied to other current brouhahas where facts and feelings get hopelessly entangled, e.g., date rape and sexual harassment... This sensible but limited book illustrates the strengths and weaknesses of what has recently become a lonely rump of feminism: "equity" or "rationalist" feminism. Appalled by the flapdoodle peddled by most feminists today, Mrs. Showalter wearily protests, "Feminism has a strong Enlightenment, rationalist tradition of debate and skepticism, whose memory I attempt to recover and reassert." She bravely points out that the great majority of these epidemics' self-proclaimed victims are women, even the alien abductees. (Gulf War Syndrome, of course, is the exception, but the number of soldiers' wives who have also come down with GWS is striking.)...
Unfortunately, rationalist feminism is itself founded on a death-defying leap of faith: the assumption that there are no biological bases for differences in behavior between the sexes. Thus, equity feminism was much to blame for the imprisoning of so many young women day-care workers on absurd charges of raping children and eating babies. If we know anything about sex abuse, we know it's a solitary male crime, not something women do, especially not in groups. But equity feminism has made such stereotypes unacceptable, so all those young women, whose only crime was that they loved little kids so much they'd work with them for $5 an hour, had to go to jail...
Further, rationalist feminism's fundamental dogma of sexual uniformity prevents Miss Showalter from grasping why feminist movements are so vulnerable to the irrationalism she despises. It's not because women aren't as smart as men. Although the sexes do differ on average in mathematical skills, women may well be superior in verbal logic. (Try eavesdropping on two teenage girls analyzing the endless possibilities of what some boy really meant when he said, "Maybe, like, I'll see you around sometime, you know?")
So why, in practice, are the terms "feminist theory" and "scientific theory"" mutually exclusive?... The particular form of rationality that originated in the Enlightenment requires more than just the ability to construct castles of logical conjecture in the air. Galileo wasn't any more ingenious at conceiving interlocking celestial spheres than his ancient rival Ptolemy. What distinguished Galileo, and the Enlightenment in general, was that masculine competitive delight in risking the destruction of your own hypotheses in order to smash the other guy's beautiful celestial spheres of theory.
The Enlightenment turned reason into a contact sport.
Feminist movements careen into gullibility because women, especially when talking mostly to other women, find it more emotionally difficult than men to treat intellectual debate as a game. Women tend to take it much more personally, closing their minds to opponents and pulling their punches with friends.
Did she work in "My Year of Rest and Relaxation" by Ottessa Moshfegh?
That's a good book.
I don't really get what's meant to be wrong with Shorter - he just seems to be arguing that it’s a psychosomatic condition, which seems to be the likeliest explanation. What all the people with the various historical versions of this seem to have in common is that they can get away with it: monks, Oscar Wilde, people with access to disability benefits etc. A certain type of person (myself entirely included) will have an almost overwhelming bias against doing anything that involves getting out of bed; up to and including going to sleep hungry because ordering takeout is too much of a faff. This will include everyone you meet who only shaves intermittently or smells like they don't shower. We can force ourselves to get up and do things when we have to (whatever that means). Some people can get away with not doing anything, so they don't do anything. The people who cant get away with it don’t, so we don’t hear about them (Marcus Aurelius is the only historical figure in this camp who springs to mind).
The post-viral side of it obviously flows from this; when you’re off work with covid or whatever, you get to do nothing, so the temptation is always to stretch it out (I definitely kept testing positive long after I started testing negative). I doubt its a conscious fraud, but more a desire to believe there’s something medical to justify your overwhelming preference for inactivity.
(Going back to the Shorter point, I think he’s taking a way more moderate position than I am and just saying it’s psychosomatic.)
Doesn’t that fall pretty short of the point where it’s handwaving? The existence of people who have a history of accomplishments and also claim CFS doesn’t seem incompatible to me at first blush. A life of sprinting from accomplishment to accomplishment has few off-ramps, but one of those is chronic illness: if you’re sick, you have a great excuse not to keep doing all that stuff and nobody can tell you you’re lazy.
Having a successful career and founding an organization to look for a cure for your condition doesn't strike me as laziness. Like, it might be physically less strenuous than sailing a yacht, but writing as a career is still *work.*
Also, like... you don't need an excuse to stop sailing yachts. "I've decided to spend more time with my family" is the internationally accepted excuse for rich people to stop doing literally anything.
I think you’re coming at it from the wrong angle. People will do, say, and believe a lot of things to enable behavior that they might otherwise chastise themselves for, or other people (including their family) chastise them for.
If you become depressed and want to quit life, people might try to stop you. If you get a Condition which forces you to quit life, you’re a hero for getting out of bed.
It’s not suggested that the majority of CFS patients are consciously malingering; Shorter thinks it’s a somatic symptom disorder: the excuse is required.
“Character or life course”? Of course not. I’m baffled at the very idea that you think somebody’s career or their moral fiber has something to do with whether they have a somaticized psychological disorder. I’ve had clinical depression before and I assure you it wasn’t because I was a bad person or I didn’t try hard enough in college.
As far as CFS making you a hero, struggling against the system: it’s not about what forces arrayed against them believe, it’s what the CFS patient (and their community, the community of CFS patients) believe. The valiant struggle against uncaring doctors, an ignorant medical system, and a public that indicts you as lazy or malingering seems to be a big part of the chronic diagnosis of exclusion’s draw; whereas mental illness is a difficult personal struggle, the chronic ‘organic’ ailment indicts the system, not the self.
This certain type of person (which includes you, me, and and a large proportion of the people I've known well) will receive what when we get our UBI? I guess a one way ticket straight to misery.
Or a UBI will give us the breathing room we need to rediscover the joys of life, and the freedom to pursue them without reserve. That may require a push in the right direction, which could come in the shape of therapy or a social support network/group; the former may or may not be affordable on a UBI, but the latter should be far easier to find when everyone is free to act according to their values rather than compromising to earn a living. Doubly so because many will find joy in helping others in such a way, or so I believe.
It depends on how prone a person is to being motivated enough to go do meaningful things when not required to, personally I tend to stagnate.
I would absolutely love if we could get a UBI utopia setup somewhere so people could watch it collapse into sloth and dissolution within 20 years.
I've had this fear for myself too, but... (1) Do you do anything currently besides work and the basic requirements of living? If so, wouldn't you still enjoy those things if you didn't have to work? (2) If not having to work truly makes you miserable, probably you can muster the willpower once (or once a month?) to send your UBI to charity or a friend or something.
What you describe certainly is a thing that exists. However, actual CFS is an entirely different beast. Even if you wanted to do something, with CFS you often can't, because after the initial euphoric feeling of getting your life in motion again, post-exertional malaise quickly sets in, and drags you down into inactivity and chronic pain. That's what sets it apart from things like depression and akrasia.
That sounds exactly like chronic depression and akrasia to me.
Then perhaps you need to listen more closely. Depression has always been more mentally driven to me, while CFS is more physically driven. Yes, I've experienced both.
Of course, the two are strongly interlinked and influence each other, that's what psychosomatics is. There are all sort of feedback loops and calibration issues (sensitivity to stressors, etc) that make it hard to be active even when you really want to.
I have known a few "type A personality" people who got hit with this malaise and kept fighting, progressively getting worse and worse, more and more frustrated with themselves, remembering what they used to be like and what they used to be able to do, before they learned to count their spoons very carefully. Some never have. So, this is direct (though anecdotal) evidence against your model of people getting habituated to not having to work.
Ha! Spoons. I have leukemia, and before a bone marrow transplant I had to 'pass' a telephone psychosocial interview conducted by a sociology student. She went into the spoons theory. Frankly, it was all my wife and I could do to not burst out laughing. We would not have passed in person with out fists and clothing jammed into our mouths to prevent her hearing our giggles. Sure the transplant was a big deal, a couple of months of in-patient isolation misery, and issues that continue over a year later. I'd rate the whole thing as easier, subjectively, than a weekend on call in the summer (cottagers!) where you are the only doctor in the community. As we commented after the interview, 'she doesn't know who she's dealing with!' She meant well, was completely professional, and I rated her highly when her supervisor followed up because she was just doing exactly what she was being taught to do. But it's much easier for me, not because of medical training, but because I'm old enough to come from a time when you didn't complain, you made do with what you had, and you were grateful for it. I'm not saying my life was hard: I have been very lucky and in the areas where things have gone to hell, I cope. I have seen capable and valued colleagues go under with self-doubt and find a diagnostic home in CFS and sick-building syndrome (which, BTW, is very contagious!), and I'm sorry for them. But it is completely obvious that there is a psychosomatic underpinning to their symptoms. We have to be honest about that if we are to offer help.
It was completely obvious that there was a psychosomatic underpinning to peptic ulcers, too, until over the last 40 years it got a lot less obvious.
If we are to use that as a guide we shall end up saying there is no such thing as a psychosomatic illness. And that looks awfully like the urge that some have to show their psychological conditions are actually more "respectable" physical conditions. I would decry that, and likely you would too. There's nothing wrong with a psychological/psychiatric/mental (take your pick) diagnosis. I'm saying those things are just as real, worthy and miserable as having H. pylori in your stomach, that's all.
Which is fine, on its own. Where it's not fine is when the insistence on a psychosomatic cause leads, as it has, to ineffective-to-harmful treatments being promoted as effective through laughably flawed studies and a refusal to look into other, potentially more fruitful, lines of research.
Show me fruitfulness and I'll be all on board.
You seem to be saying that your disease, being "the real deal," makes you an authority on other diseases, to the degree that you can confidently diagnose others as being afflicted by "self-doubt."
I've seen this muscular stance from others living with (or recovered from) serious conditions. Some people seem to take special offense at anyone struggling with conditions that aren't yet understood. You've been to battle. You've seen the front lines. And you assume that the "complainers," unless they have a diagnosis as weighty as yours, just couldn't cope.
Did you know this was widely said about tuberculosis in the 19th century? It was considered indicative of a character unable to rise to the challenges of "the modern world."
It's an unfortunate blind spot, but I can guess from your language you are quite secure in your conclusions, which is frankly unfortunate for your colleagues, who I suspect are not sitting around comparing disease states. They're just trying to get by day to day with the particular body they're living in. And I suspect they're not "complaining" so much as asking for necessary accommodation for their disease, just as you had to do while laid up.
30 years as the only doc in a remote/rural community necessitates a certain amount of confidence, misplaced or not. If I have "blind spots" they are a result of having to prioritise diagnoses. I'll be as caring and sorry as possible if you have CFS, but excuse me I have to go and do CPR on the arrest over there! And then there's yet another chainsaw cut after that. Then I'll get back to your fatigue. You might see how one simply has to put some things before others. Triage as a way of life. Yes, that meant many of my own family moments were placed into the 'unimportant, do later' category. I can regret all that on my own, but the job I was hired to do (the job that allowed me to immigrate to this country) required me to place patient requirements well in advance of anything personal. I chose to go along with that. If I can make sacrifices, maybe I'll be somewhat less understanding when I see patients exploit minor injuries into reasons for long term disability. And that is a very frequent issue.
I'm not asking for any medals for coping with my own diagnosis, and I'm sure I shall receive none here. My point, which I think still stands, is that the way we respond to adversity depends a hell of a lot on how we were brought up, and how we were taught or modelled to deal with it. And it seems to me that those matters have a great deal to do with neurasthenia and its descendants.
I understand the economics you describe. It's an issue. But let's be clear about what you have demonstrated here. You have shown your patients that you continue to equate CFS/ME with routine fatigue and hysteria, and that you have zero interest in learning what the disease is really about, which frankly is a pretty good argument for choosing younger doctors, if it's too much of a sacrifice for older doctors to keep up with the research. Your overconfidence in your beliefs would certainly translate directly into just one more predictably miserable experience with the healthcare system for anyone with CFS/ME who has the misfortune to require your care.
Further, you have bolstered your lack of empathy by sharing the conviction that your patients' presumed hysteria should have been prevented by something they had no control over. You say this is your point, and it's the reason you bring up your own genuine illness, to demonstrate what a properly functioning family system ought to look like, but I guarantee you this: if all the doctors you saw for your cancer told you it was just in your head, you would not have handled your situation with nearly as much of that stoic good grace you were raised to demonstrate.
Hilarious. Do carry on. You'd rather I let the cardiac arrest die while I entertain all sorts of unproven theories about your fatigue? I'd lose my license that way, and deservedly so. No matter how old or young I am. Ageism for the win!
Can you concede that, in the current pool of people with idiopathic diagnoses like CFS, there may be a few subsets that have causes more akin to tuberculosis/ulcers than malingering? Why or why not?
(This is directed at Christopher Moss--sometimes I don't thread correctly, so I just wanted to be clear)
Why would a healthy animal have an overwhelming preference for inactivity?
Even cats, known for sleeping all day, get "frenetic random activity periods" or colloquialy, zoomies. A constant, overwhelming preference for inactivity gets you killed in the evolutionary environment.
Shorter's book From Paralysis to Fatigue, is well worth a read. The similarity between acedie, hysteria, neurasthenia, chlorosis, CFS, ME, sick-building syndrome and total allergy syndrome makes it fairly clear we have been dealing with this for a long time. He feels it is psychosomatic, but there again he would: he's a psychiatrist. That doesn't mean it isn't real (we all get a headache when stressed, or diarrhoea when scared) and it distresses me to see people making death threats at honest attempts to help them. I guess they are revealing their own bigotry against mental illness in doing so. Whatever the cause, the only things we know of that help the condition are SSRIs, graded exercise and CBT. That's all we know. Seems daft to stamp your foot and say 'No! I won't do that!' when that is literally all we have to offer.
Not quite true. Current research shows "graded exercise" is not just ineffective for many with ME/CFS, it can be harmful (depending on the protocols). Think of exertion, including mental exertion, as a type of poison in the body, and you'll be close to the mark. The individual learns how much she can tolerate in various circumstances and how best to recover. The now-outdated notion that the individual's only path is to keep trying to push toward higher levels of exertion is unhelpful; it reinforces the false impression that cognitively responsible people (those without lazy characters) need to just keep trying harder, which has been proven to make the disease much worse for many.
"Whatever the cause, the only things we know of that help the condition are SSRIs, graded exercise and CBT. That's all we know. Seems daft to stamp your foot and say 'No! I won't do that!' when that is literally all we have to offer."
Don't fall into the trap of thinking that just because we don't yet understand a system we should address it with existing, limited assumptions. You could have said the same thing in the past about people stamping their foot saying no to leaches.
Part of the current situation is a common belief that exercise-- and especially 110% effort-- is a panacea.
I don't think I ever hear "exercise is medicine", just an assumption that exercise is good for all people.
When you imagine yourself doing "nothing", are you reading books on your backlog? playing videogames? Catching up with friends? Or are you lying in bed because the idea of getting up to make yourself breakfast seems daunting? I can easily believe that most people would rather be out surfing or otherwise indulging hobbies than working, but when a person can't muster enough energy to have fun, they are clearly unwell!
Oh, lying in bed doing nothing. Will use laptop if I left it next to the bed, but otherwise phone. Breakfast (and cooking your own meals vs ordering takeout) are miles into the effort-taking activity side of the aisle, and catching up with friends actually involves putting clothes on and going outside. The things that get me out of bed are 1) work or something else I just have to do; 2) needing the loo to the point where it's causing substantial discomfort (followed by lying on the sofa or going back to bed). If you eliminate the contents of category 1, eg. by having a medical condition that excuses you from work/social commitments, then you'll eventually get out of bed to let the food delivery guy in but that's about it.
It's the existence of category 1, and the answering-the-door type things, that gives the lie to it being a physical disease. It's just a strong preferential bias towards inactivity, shared by countless lazy people (myself included), and if society doesn't let us get away with it then we won't.
The description made this book sound quite similar to Elaine Showalter's "Hystories", but that covered multiple conditions of which CFS/fibromyalgia was one.
The link for "sexism" reminded me of this recent oddity regarding monkeypox: https://twitter.com/LizHighleyman/status/1555216192582942721
I believe the rage about graded exercise is about being prescribed the very thing that makes symptoms worse. If ordinary walking is exhausting, more walking might just lead to more exhaustion.
Maybe swimming?
People with CFS/ME also find swimming exhausting from what I understand. Even mental exertion is reported to lead to malaise.
Yes, this article explains why many are against it: https://me-pedia.org/wiki/Graded_exercise_therapy
While it helps some, others seems to get worse due to (or at least following) graded exercise therapy.
I wonder how they would do if the exercise was running from a tiger?
I don't understand your question. I think most of them would have post-exertional malaise. Many people with CFS/ME can exercise, they don't recover normally though.
I suspect they would recover normally (adjusting for the time of atrophy and inaction preceding) if provided with a sufficiently severe incentive.
It’s an affluenza disease.
Perhaps some people with CFS/ME have affluenza, but there are those that don't: for example, those that have ended up cured of their CFS/ME symptoms after having cranial traction.
i sincerely hope u experience severe suffering at some point and i also hope that everyone around u scoffs and waves it away...then maybe u will understand
We can all rest soundly in the hope those obstinate enough to have their own views different than ours must someday grow up to eat their words.
I sincerely hope you learn to be an adult.
Perhaps those getting worse need a shallower grade?
Perhaps, but maybe they need a neck brace along with it. Hopefully we see more research on it going forward
I think the grade is important. If something exhausts you, then you do something that doesn't exhaust you first. I read an account of a woman with CFS who successfully used graded exercise to get well. She didn't start with walking, she started with sitting up in bed. Eventually she was doing full sessions of yoga.
Is it just me, or does the picture accompanying this review really not describe it so well? If, like me, you're one of the people described in the first paragraph of the review, I bet your bedroom doesn't look like something from HGTV - mine certainly doesn't.
I was hoping for some useful information for dealing with exhaustion, but no such luck.
Perhaps Tracey Emin's "My Bed" would be a better fit?
Yes, that's a lot more like it.
ok, just saw the image. that looks like a bed no-one sleeps in, let alone lives in.
Re: useful information. I'm also (somewhat) described by that first paragraph, would love to exchange some ideas if you're up for it.
Yes, that bed is absolutely staged.
I have a lot of complicating factors and, unfortunately, no particularly good ideas to exchange. I doubt I'll be a useful conversation partner, though I'm more than happy to try if I don't have to deanonymize myself.
Long story short, our kids had sleep issues and developmental issues, and our house had a mice problem, and just around the time these were all resolved, the summer weather hit. I've never felt all that well in summer, but this summer seems hotter than before - and it came after a long period of not enough sleep and a bunch of other problems. So I can't tell if my problems are long-term, or if they will go away when the weather becomes normal, but right now I'm pretty much what's described in the first paragraph - except that I can't withdraw from basic activities. I somehow do most things that need to get done and get through the day while wanting to just lie down on the floor and sleep. I daily come up with plans for catching an extra hour of sleep, either just to see these get derailed when reality doesn't cooperate or to fail to take advantage of that hour.
On the bright side I think there's a fairly good chance that I'll be a new person when temperatures hit low 70s, or, if that fails, then around the time when the first snow falls. What really scares me is the possibility that this won't happen.
Any chance of getting (more) AC? I've made a habit for well over 15 years to just "skip" summer heat - everywhere I live, work and travel is air conditioned. It ended up being a lot more affordable and practical than I expected. Pretty much the only consideration I've found critical is to never use it as a hammer and have it on full blast. Just set it on a very moderate temperature, and hide the remote until October.
Re: sleep. I have moderate chronic insomnia for a long time, which I'm managing reasonably well. But the gamechanger was adding stims in the mix: after a long time hesitating with occasional use, this year I took the plunge and started using modafinil as a lifestyle drug, aka 1-4 days a week. The difference between those days and the average is pretty much mindblowing.
I'd love to just skip the summer heat, but we have two kids and live in an area famous for its outdoors where there're really not so many air-conditioned places to spend an afternoon in summer (I can count all the options in a reasonable drive range on the fingers of one hand). Around here, you don't spend your summers indoors unless you're really sick.
I suspect that stims might not be a solution for me, but I'll look into this. Thank you for the suggestion.
I see. I think I can give you a few general pointers that might help:
1) Stress + lack of sleep is a vicious cycle. You're tired, but it's very hard to rest in that state. If you have a spare hour, instead of focusing on sleep, I'd advise focusing on *relaxation*. There are a bunch of things that might work here, but one good starting point is to just reduce sensory stimulation. Lie down in a dark, quiet room, and do nothing other than letting your body sink down. Take slow, deep breaths. There's actually a reflex that triggers relaxation when breathing deeply: imagine breathing as far down as possible, imagine that you're pulling the air down all the way into your hips. Fill your lungs from the bottom up (if that makes sense), then breathe out with an aaaaah.
2) Tension. Make sure your muscles are relaxed. Specially the shoulders and neck, which might be the cause of tension headaches. A spot that many people neglect are the muscles at the back of the neck, just below the base of the skull, on both sides of your spine.
3) Pain. You might be in pain and not know it. Many CFS sufferers describe a sort of pressure on their head, which is also strongly associated with the famous "brain fog". Try taking a painkiller once in a while. You might realize "yep, I was in pain alright" once it's gone. It's important to not overdo it, as painkillers have really bad long-term side effects. But a few times a week is safe. I would recommend trying it not when the symptoms are worst, but rather before some activity that stretches you beyond your usual daily routine. This prevents post-exertional malaise to some degree. Another good time to take a painkiller is right before going to sleep after an exhausting day.
4) Pacing. Don't overdo it on days you're feeling well. It's really tempting because feeling well tends to come associated with a certain euphoria and an urge to "finally do stuff".
I'd be curious to know what your experiences with these ideas are.
Yes, certainly these are some helpful ideas for civilians dealing with stress and fatigue and sleep hygiene. Just don't confuse this sort of approach as relevant to severely, chronically sick people who have spent years, decades, trying absolutely everything.
Civilians have a tough time imagining the true reality of CFS/ME, partly due to semantics. E.g. you know what "fatigue" is in your life, and you've approached it smartly, but you need to recognize the disease of fatigue is not the same thing. It's a totally different existence.
It's like someone who goes around saying they have "the flu" every time they catch a cold. And then one year they get the real flu, and the idea of getting out of bed just to go pee becomes an absurd fantasy. Try to imagine that kind of "fatigue" next time you encounter someone with this awful disease.
Yes, and it's important to keep reminding civilians that "fatigue" is just a word, and it doesn't capture the pain, burning, pressure, migraines, frozen brain, etc, that many who suffer from CFS/ME experience every time they say, "I'm wiped, and I'm going to go lie down."
In fact, if anything, I'll bet most patients learn to downplay the symptoms, after witnessing how deeply uninterested people are in learning what's actually behind that word, "fatigue."
Thats a bit condescending, im not a „civilian“
I am a bit annoyed at you because I think you weren't quite honest in your original comment. But I recognize that you did your best to be helpful here - thank you for this! - and in another situation you might have been.
Unfortunately, I am really well acquainted with everything you mentioned, and with a bunch of things you did not (hydration, blood tests to check for culprits such as inflammation, thyroid issues, anemia, blood sugar issues - did I miss something?). My current hypothesis is that in my case this might be just about sun exposure, due to a certain neurological disease in my medical history. If that's the case, all I can do is avoid the sun (easier said than done with two kids).
Thank you for trying to help.
EDIT: Forgot to mention getting tested for sleep apnea.
I'm confused... how exactly was I being dishonest?
It's really hard to help someone in a single comment. It takes a longer conversation than that. I have a bunch of ideas and tacit knowledge in this domain, but these are much harder to articulate. So I went for some of the more basic stuff (which a lot of people don't know about / don't take seriously). I really wasn't trying to downplay your problems or anything like that.
Looks like I might owe you an apology, then. Sorry for jumping to a conclusion.
Your original comment seemed to say that you have a similar problem and might be able to share some ideas for dealing with this. When I asked for ideas, you gave me a standard list of things that most people who complain of fatigue, migraines, or back pain have heard from their doctors or seen elsewhere. (Not only this, but you also asked me to let you know if any of this works!) Instead of something insightful, I got the most generic possible advice from someone who sounded as if he was playing doctor (or was a doctor?), which led me to assume that you weren't engaging in this conversation in good faith.
I apologize for assuming that. I do understand that you were trying to help, one way or another, and I do appreciate it. Thank you, and sorry.
All pictures are chosen by me after two seconds work, so please don't blame the author for that.
Sorry, I didn't mean to blame anyone for anything. It just seemed really out of place, and I wasn't sure if it was an attempt at humor.
> This is particularly pronounced in men, for whom the loss of seminal fluid is allegedly forty times more damaging to vital energy than losing an equivalent amount of blood.
This is obviously true. Take a pint of blood from me, give me a cookie and some orange juice and I'll be good as new the next day. But take a pint of seminal fluid from me, and I'll be bedridden for a month.
Sometimes I wonder how migraine would be treated if it created all the same symptoms *except* pain. Sporadic episodes of partial blindness, brain fog, numbness, lethargy, confusion? Occurring mainly when you’re overexerted or annoyed by stimuli? Sounds like it’s all in your head.
You don’t think migraines are in the head? I get them maybe one or twice a year when I am underslept and over-stressed, but they are definitely “in the head”.
Well, yes, they're in the head the way a broken nose is entirely localised to the head
Yeah but they are different than a broken nose. A broken nose doesn’t get better after a good sleep, and isn’t caused by stress or other triggers.
Good review, I’d like to have read more about what the author was referring to with regard to “Saturn” though.
Saturn is the planet associated with melancholia in classical astrology. The link to Saturn got played up a lot in Renaissance esoteric literature and art, when people started to think of melancholia not in terms of the sin of sloth but as a morally neutral disposition toward intellectuality, even a desirable marker of creative genius.
In ancient/medieval/renaissance astrology it was held that the planets influence Earth in various ways, and each planet had different qualities. For instance, it was believed that metal formed deep in the Earth during times that the planets had strong influence, and each planet was associated with a different metal (Moon:Silver, Mercury:Mercury (duh), Venus:Copper, Sun:Gold, Mars:Iron, Jupiter:Tin, Saturn:Lead). Rich people would take out their gold items on very sunny days and lay them out to bask in the sun, under the belief that the Sun's influence would make them purer.
C. S. Lewis describes the idea of planetary "influences" in his book "The Discarded Image":
"Besides movement, the spheres transmit (to the Earth) what are called Influences-the subject-matter of Astrology. Astrology is not specifically medieval. The Middle Ages inherited it from antiquity and bequeathed it to the Renaissance. The statement that the medieval Church frowned upon this discipline is often taken in a sense that makes it untrue. Orthodox theologians could accept the theory that the planets had an effect on events and on psychology, and, much more, on plants and minerals. It was not against this that the Church fought. She fought against three of its offshoots.
(I) Against the lucrative, and politically undesirable, practice of astrologically grounded predictions.
(2) Against astrological determinism. The doctrine of influences could be carried so far as to exclude free will. Against this determinism, as in later ages against other forms of determinism, theology had to make a defence. Aquinas treats the question very clearly. On the physical side the influence of the spheres is unquestioned. Celestial bodies affect terrestrial bodies, including those of men. And by affecting our bodies they can, but need not, affect our reason and our will. They can, because our higher faculties certainly receive something (accipiunt) from our lower. They need not, because any alteration of our imaginative power produced in this way generates, not a necessity, but only a propensity, to act thus or thus. The propensity can be resisted; hence the wise man will over-rule the stars. But more often it will not be resisted, for most men are not wise; hence, like actuarial
predictions, astrological predictions about the behaviour of large masses of men will often be verified."
Lewis describes Saturn's influence thusly:
"In the earth his influence produces lead; in men, the melancholy complexion; in history, disastrous events. In Dante his sphere is the Heaven of contemplatives. He is connected with sickness and old age. Our traditional picture of Father Time with the scythe is derived from earlier pictures of Saturn. A good account of his activities in promoting fatal accidents, pestilence, treacheries, and ill luck in general, occurs in The Knight's Tale (A 2463 sq.). He is the most terrible of the seven and is sometimes called The Greater Infortune, Infortuna Major."
This phenomenon is also where we get the world jolly, jovility, and jovial: all of them referring to Jove, the other name of Jupiter, the "fortuna major". Under his influence Earth experienced peace, prosperity, and a general sense of happiness and wellbeing.
>the initial thoughts that EBV was a robust cause of CFS, the subsequent discovery that about 95% of the population has had EBV so this explanation couldn’t be complete
Minor nitpick: there is no "has had" EBV, EBV is a lifelong infection so either you have it or don't.
Also I wouldn't rule out EBV, since it's definitely known to cause rare things like cancer (Hodgkin's lymphoma) and multiple sclerosis even though most infected people don't get them. See: https://denovo.substack.com/p/epstein-barr-virus-more-maladies
I've read a book called Acedia, and wondered whether what was knocking people out was that the rules made life so drab that some people stopped functioning, or possibly stopped obeying the rules.
I don't think the issue was that the rules made life drab. The rules made life vividly, unbearably intense. Acedia was the temptation to say, "Wouldn't it be just as good to putter around being normies, and let God take us as He will? Must we *always* be *trying* to make ourselves acceptable to the Divine?"
This was wonderful, thankyou.
It's interesting to me that explanations popular in previous eras are simply dismissed out of hand. That would be reasonable if we found the causative agent behind CFS and could cure it with a pill, but we haven't. We still have no idea what causes it. And so when I read this:
"Occurring as it did in monastic orders, the explanation for acedia was moral in nature – it was due to weak willpower or a moral defect. Schaffner, quoting Thomas Aquinas:
...
…which is something that might reasonably be referred to today as victim-blaming."
I wonder how we know it's *not* due to weak willpower or a moral defect at least some of the time . Yes, it's victim blaming--and sometimes, the victim is to blame. There is no logical reason to not take this explanation seriously just because it's no longer politically correct.
Ideally, because a person you trust emphatically tells you it's not about willpower or morality. From there the most parsimonious explanation is that this cluster of symptoms indeed corresponds to an underlying health condition.
The person I trust the most is myself, but I'm not sure how I'd know if CFS is about willpower or morality if I got it. I'm not even sure what it means to not be about willpower. Does it mean that no matter how hard I try, I can't do physical activity? That seems clearly false--there's nothing wrong with my muscles, even if using them is exhausting. And what does it mean to not be about morality? One common characteristic of a moral fault is that the person with the fault doesn't recognize it as a fault. Clearly I do have moral faults, even if I don't know what they are, so why can CFS not be one of them?
Does an ultramarathon runner who collapses at the end of a race simply lack the willpower to keep going? Their muscles demonstrably work, having gotten them as far as the point where they collapsed. If you have never experienced your body flat out refusing to do what you want, I suppose it’s difficult to understand that experience. But, yes, sometimes one’s muscles do not function as expected, even if there’s nothing wrong with them specifically. Sometimes, no matter how hard you try, you cannot do the physical activity.
One experiment that could identify this distinction: find people who have collapsed during marathons, as well as people who have CFS, and then hold them at gunpoint and tell them that if they don't make it another 1000 feet they will die (or, more realistically, offer them some incentive like a sizeable quantity of money for making it a little bit farther).
I suspect that if we did this experiment, people with CFS who claim to be unable to do physical activity no matter how hard they try would find a sudden burst of strength given a large incentive like this, whereas a marathon runner who has collapsed from exhaustion likely would not.
Bodybuilders sometimes use “train to failure” protocols as part of their weightlifting routines. This takes a lot less time than running an ultramarathon, if anyone wants to actually try experimenting along these lines
A lot of the problem is that even if the person can do a thing, the cost to them afterwards can be very high. Or were you planning to keep offering them money when they've collapsed after the first task?
If I had to run 1000 feet I'd probably collapse. Any physical activity more strenuous than walking immediately causes me to become dizzy, progressing into lack of air and nausea. Even if I did make it, you'd have to pay me a really large amount of money to offset the weeks or months this would set me back on my path of recovery.
If you offered me $5000 to run 1000 feet, I'd decline.
1) you are strawmanning. The claim is not thst they are physically unable to do stuff, rather that it is excruciatingly painful to do so
2) you might be pleased to know that both versions of your experiment have been tried. The version with a gun was called "slavery" or some other euphemism for forced work, and the version with a sizable amount of money is called "jobs". In both situations, there are people who cannot bring themselves to work, full knowing the consequences. NB: people who stay in bed all day don't forego only a pretty sizable amount of money, but also the possibility of finding romantic and sexual partners, social life, hobbies, and so on. Probably a good amount of health too. It comes really close to the gun when you consider everything. But aside, I repeat: there were people that chose a very literal gun/rope/knife/gas chamber over working.
I also suspect that many people throughout history, but also today, have died because their character did did not allow them to fail, so they kept pushing until they dropped dead. This could help explain why these invisible diseases supposedly strike many more women than men; men are maybe more likely to simply refuse this type of debilitation. And then self-medication starts with a 12-pack every night, etcetera, and health spirals down fast to a death at 50.
What would you do if you got CFS/ME/FM as, say, a garbageman supporting an entire family? You'd push forward until you died of stroke (or whatever) -- and hopefully your family would get decent death benefits. You wouldn't have much of a choice.
The thing is, many with a Randian mindset would actually expect the man to push through until death before admitting to his weakness, but I think today's garbageman could find dignity in other ways if society wasn't such a dick.
Were there slaves with CFS? Where can I read about them?
Perhaps you and the others who've responded to your comment would be interested to know that essentially this experiment has been done (although just on the high-level athletes, not people with CFS). From Endure by Alex Hutchinson:
"Marcora himself produced a similar mind-over-muscle demonstration with a group of elite rugby players who competed in a time-to-exhaustion cycling test. At an average target power of 242 watts, which corresponded to 80 percent of their peak power, the players lasted for about 10 minutes, with cash prizes to ensure they fully exhausted themselves. As soon as they gave up—within three to four seconds—they were asked to see how much power they could generate in a single 5-second burst of pedaling. Curiously, although they had just declared themselves incapable of producing 242 watts, they managed to average 731 watts during this five-second sprint."
No, their muscles would demonstrably have serious physical problems. They'd be full of lactic acid, due to cellular respiration in conditions of oxygen deficiency. They'd also be full of microtears, which are what cause soreness after intense workouts. The runner's blood glucose level would be extremely low. The runner is going to recover from these problems, but the problems nevertheless exist at the moment and pose physical limits to continued activity through logical and well understand mechanisms.
Indeed. Without doing weightlifting or endurance stuff, i can feel it in my preferred sports (dirtbike, snowboarding, wakeboarding, this sort of stuff). I don't feel fatigue as strong as in the gym or running because most of muscle work is reflex balance keeping (that coupled with some physical laziness is probably why i enjoys those sports in the first place) ... But at one point your muscles becomes unable to do the work and it is extremely dangerous to keep doing tricks. The reflex will still be there but the muscles will not be strong enough, resulting in hard falls or muscle tearing...
Sometimes i feel generally tired or unmotivated, but still do a session because it was planned, or paid in advance, or a group activity... While it's no big fun and you feel tired early, it's not like the dangerous muscles-are-off at the end of a session. They're is a clear difference between general fatigue/lack of motivation and muscle fatigue (the end of marathon-like one). If cfs is similar to the latest (i doubt it) it should be extremely easy to measure by chimical markers in the blood or muscles, or by measuring muscular reflex response...
The comparison with muscle fatigue seems pretty off to me. I think it is more of a stress response overload, but it is somewhat analogous.
Have you ever had a near-miss (e.g. almost hit by a car), or a similar experience? you're shaking, your thoughts fail to cohere into directed action, your senses get clouded, etc etc. Think of this as short-term stress overload, analogous to training to failure when weightlifting (caused by local, temporary glycogen exhaustion IIRC). You're fundamentally fine, and can continue doing stuff as soon as your body has the chance to rest even a little.
CFS is more like a longer-term stress overload, that you're describing the muscle analogue of.
As others have pointed out, the muscle fatigue analogy is not the best. However, there are measurable physical differences in ME/CFS patients. See, for example,Keller, Betsy A et al. “Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO₂peak indicates functional impairment.” Journal of translational medicine vol. 12 104. 23 Apr. 2014, doi:10.1186/1479-5876-12-104 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004422/)
I don’t even trust myself to make such determinations dispassionately, you think I am going to trust someone else?
I think a big issue here is that it's hard to measure a "lack of willpower". For example, in many ways I feel like I have less energy than my friends. But on the other hand, when we do stuff like sports together, I feel like they go harder, and they can push me to go harder too. Is this a lack of willpower? Is this a moral failing on my part? I'm not sure.
Another possibility would be a lack of systems instead of a lack of willpower or morality. Lots of self-improvement stuff talks about willpower being overrated, and that you should have systems and/or habits, because these works even when you don't have willpower. But I have a hard time building habits and can break them very easily, while the friend that, to me, has the most willpower told me that if he tells himself to do something every day, he'll just do it without using willpower. It's hard for me to know what is the difference between "forcing yourself to do something, even if you don't want to, every day" and "automatically doing things, every day". I don't know what his internal experience is like and I have no way of comparing it to mine through my perception.
"At least some of the time" is conceding that there are also times where that's *not* the cause - in which case we're still left with a medical mystery.
If we can't distinguish between moral and biological causes in some way, then saying "Have you considered it's due to your moral failings?" to a CFS patient is no better than saying "Have you considered it's because of foul miasmas?" to a cholera patient. Maybe it is, maybe it isn't, but the explanation is dangerously incomplete.
For another take on this topic, I reviewed a Shorter book for the contest:
https://apsychiatryblogger.substack.com/p/from-paralysis-to-fatigue-a-history
Thanks. I loved your review and was strongly considering making it a finalist, but I decided I could only get away with one psychosomatic-related book, and this essay's section on the West Cure (which led me down a really fascinating rabbit hole) made me unable to resist posting it. I will probably give you an Honorable Mention if I decide to have those.
Thanks that is nice to hear.
This was mercifully short compared to the competition, which was a nice change of pace. No footnotes or addenda or appendices or nothing! Only 3 chapters!
Went into the topic expecting a reference to Chronic Lyme and Long Covid; good to see those both covered. I do find it fascinating that CFS is possibly the single biggest determinant of whether Long Covid is A Thing to worry about or not[1][2] - even aside from the exhaustion knocking people out of the workforce, the potential for permanent...IQ loss? brain damage?...is pretty alarming. Whether it's ultimately psychosomatic or not, the grab bag of disabilities is no joke, the bureaucratic diagnostic process is onerous, and losing lots of QALYs for young otherwise healthy sufferers is potentially Big If True. (Although it continues to look like the supposed "9%" figure being out of work due to Long Covid just isn't showing up in aggregate statistics, and therefore suspicious, so I've been updating the other way.)
The lack of any conclusion as to "what is CFS really?" is a bit disappointing; it's certainly okay to look at all the competing theories, decide there's not-especially-distinguishable probabilities for each, and say I Don't Know. Historical intractability certainly leans in this direction. But one generally expects, going into a book like this, that there will be some author-favoured hypothesis. Even if it's totally wrong and off the wall, seeing that thought pocess of selection is useful for calibrating other parts of a book. (Or a review, for that matter.) For my money, I'd be interested to see the anthropological angle of "do pre-agricultural societies suffer exhaustion?" (since pre-industrial is already a yes).
Lastly, I thought the New Big Idea with EBV is that it's got helpful explanatory power because Infections Are Bad Actually? That is, this is one of the viruses we do know is sometimes linked with EBV, and it turns out way more people are infected than we originally supposed. So, even if any given infection is a tiny probability to progress into CFS, there are suddenly a lot more coin flips. I seem to remember reading that this was getting expanded into a new Paradigm, where rather than looking at particular pathogens of concern, generic infection and suboptimal recovery itself is the culprit. So preventing preventable diseaes and infections in general is more important than previously thought, even for things with seemingly-mild acute symptoms. (One could easily mix this with another thing off the Fad Dartboard and declare "ah, it's inflammation that causes CFS!")
[1] https://astralcodexten.substack.com/p/long-covid-much-more-than-you-wanted
[2] https://thezvi.wordpress.com/2022/02/10/the-long-long-covid-post/
EDIT: also curious whether the New Model of Stress making the rounds helps explain clinical-grade exhaustion: http://www.frontiersin.org/articles/10.3389/fpsyt.2019.00379/full
CFS from Covid should no longer be a worry, or if a worry at least not a mystery. It's pretty much limited to the normal response after a severe illness: you get very sick, spend some time intubated/ventilated, with days of very low blood oxygenation and viral infection in all your organs - surprise surprise, you have a small but significant change you're not fully recovering from that. It's a real risk, and it's as bad as it's advertised, but it's very much not something you get from flu-like symptoms, the way we used to worry in the beginning of the pandemic.
To avoid Long Covid you do all the normal things you do to avoid regular covid (vaccines, live in a country with Paxlovid etc), and if you're at risk of Long Covid, then you should also worry about simply dying from Covid because they pretty much overlap.
Ah - I haven't kept up beyond what trickles into occasional news summaries from Zvi. If that particular really-poor-outcome outcome actually has been narrowed down to "basically only realistically happens with Real Bad Cases"...then that's pretty much settled and I recalibrate my personal Worry Meter to effectively-zero. It's sure weird living through a Developing Situation. Good test for Bayesian reasoning under uncertainty. Appreciate the update.
I know the hawks still cling to the redoubt of "okay, sure, young people almost never *die*, but they get Long Covid more often/it's the real risk for them! [also vaccinate every child!]". Which would not be valid if the Venn diagram has that much overlap. I do still feel bad for the existing CFS sufferers - I've got a relative like that, wish she could get a cure - but once again it seems like improving society-wide general health is the fairest (or least controversial) approach. Don't think anyone's actually literally against combatting obesity or whatever other comorbidities.
Do you have a citation for that? Because everything I've read still indicates that mild cases of covid can lead to long covid symptoms. If you're saying that there's evidence that long covid is only a result of severe illness and hospitalization, I'd like to see it.
I’m thinking of doing a book review on Oxfordians next time. But it’s better if multiple books, on the same subject, are reviewed. Anyone know if that’s possible.
Just write a review of the most interesting one and work in the other ones as appropriate seems like the natural answer.
None of them are interesting except in their duplicity, and illogic. Multiple reviews were/are common enough in newspaper reviews. I’ll just send it off. A year away anyway I suppose.
Just a note on shinkeisuijaku (神経衰弱) which you say is still diagnosed in Japan. Actually this term is rarely used in a medical context anymore; instead it is typically used to refer to the card game where you have to pick up identical pairs of cards, which are placed face down, by remembering their position. In my experience most CFS-type presentations in Japan are blamed on overwork or stress.
Surprised the reviewer didn't mention the popular Spoon Theory. I assume that means that the author didn't, either.
Hopefully with long covid being acknowledged as a real and ubiquitous condition there will be some research and resources into figuring out where the missing spoons go.
Not convinced long Covid isn’t people are generally less active due to lockdown, feel slightly worse but don’t notice> get Covid and get very sick and are substantially less active for a few weeks > people are now under conditioned compare to their normal equilibrium, and 20 lbs heavier > people want an explanation beyond “you got fat and last during Covid/lockdown and need to push through a period of unpleasantness to get back to the place you were”.
And I say that as someone who had Covid, got serious pleurisy a couple weeks later, was hospitalized, and then has had off and on recurring pleurisy since (with no current diagnosis other than “you will probably get better in a. Couple days” which has turned out true).
Do I have “long Covid”? Intermittent serious lung pain for over a year? Shortness of breath.
My money would be on “no”.
It has seemed obvious to me since medical school that there could be more than one distinct cause of these symptoms. Lots of patients have fever and we know not to treat all fevers as one clinical entity but with fatigue we seem to keep looking for a single cause. It is very believable that these different entities are different or that there are different patients within any one entity.
Speaking for myself I’ve had disablingly severe fatigue for 27 years but it was diagnosed simultaneously with my very unmistakable brain full of multiple sclerosis lesions. So I have what sure seems familiar to what I hear other fatigue patients go through but I never get the faintest skepticism from any provider about it. I’m lucky to have a clear diagnosis. But it’s easily possible to have far fewer lesions and far more subtle MS. Someone with nearly invisible lesions but my fatigue symptoms could easily be lumped into the chronic fatigue category and not taken seriously despite having the exact same etiology for fatigue.
While I agree on relating to it, I think there is a significant difference there though.
MS symptoms incl. fatigue generally improve with exercise (so much so that HIIT works best, I am currently participating in a follow up study to previous ones showing exactly that and its subjectively been true for me for a long time) , CFS if anything seems to get worse.
I wonder ... scratch that, google is my friend. It seems like people did think to use stimulants (amphetamines, modafinil and such) with some success, albeit with risk of long term crashes. This suggests it's not a purely psychosomatic problem - if it were, you'd expect either failure or better long term response, instead of the murky, success-crash cycles google seems to suggest.
To me it suggests the opposite. Taking stimulant drugs changes the way you think about energy expenditure; it doesn’t actually change your energy expenditure itself. So, for example, if you take amphetamines when you’re about to die of starvation, it’s not likely to lengthen your lifespan.
If people with CFS do lots of things when they take a drug that is known to cause people to suddenly decide they have a ton of energy and do lots of things, it suggests they’re responding typically. What you would expect to see is that it would be entirely ineffective—they would want to do lots of things but they would simply be too tired to do them, the same way a literally starving person given amphetamines will still be too weak to get up and walk.
Not exactly. Stims are commonly prescribed early on in someone's CFS/ME journey. And most accounts on chat boards reveal that any hope is usually quashed soon after discovering the stims make you sick. You're likely to be left "wired and tired" at first, and if you keep trying, your overactive adrenal response leads to flu-like states and a serious crashes. So they are typically unsustainable, but in general, if you can stand the regular use of stims, great, that probably indicates a neurological basis for your illness, and you're one of the lucky ones to get your specific etiology figured out.
So far this is one of the best of the reviews. (Or so I think before reading the actual book.)
But the review and the program of reviews has made me think about the process of rating reviews. Is it possible to properly rate a review without reading some or most of what is being reviewed?
But if a review is critical of a book AND a "well done review", it is unlikely that one would read the underlying tome. (And for good reason.) On the other hand a book review that leads one to pick up the book is planting seeds for its own critique.
For example, the review of Debord's The Society of the Spectacle lead me to actually read GD's work, but it made me think a bit less of review because I'm slightly doubtful how well the reviewer understood Hegel, Marx, the history of post-Marx socialist theoreticians, the situationalists and letterists, and philosophy of art, which are prerequisite to understanding and critique of GD.
Is the purpose of a good review to be a substitute for reading the text or is it something else? A synopsis that is a good starting point for careful consideration of the value of the underlying text. Should book reviews always be read in pairs or groups of reviews?
I will probably seek out "Exhaustion" . The review was a good read. But does make it a good review?
Saint Photios the Great, the apparent inventor of the book review, pray for us.
> Should book reviews always be read in pairs or groups of reviews?
This is what I usually look for before committing to reading a nonfiction book. Not because I think there's a strong chance that reviewer variability is unreasonably high - just because I think there's *a* chance. (For the same reason, I think executives and politicians who really care about some issue should commission at least 2 reports. And they shouldn't tell each writer who else is writing a report.)
I also value reviews of 2-5 books on similar subjects. It helps me infer what the reviewer's evaluation criteria really are.
I regard a book review as a literary convention, providing a useful category for essays which start off with some specific source material and then explore territory adjacent, sometimes meandering so far that one has to squint to see a connection to the original book. This seems to be a standard category and it has a long history. Enjoying such an essay does not, in my view, create an obligation to read the source material. That is, unless one wants to be a fair judge in a book review contest where fidelity is a criterion. I don't see anything in Scott's guidelines about fidelity, though.
Maybe.
But every book review in the NYTIMES and any reputable publication is fact checked, so I'd think "fidelity" would necessarily be one aspect of a good review.
Now it could be the case that Scott in coming up with as list of finalists has done that job for us by reading all of the underlying books.
I was a great books undergrad (a zillion years ago) so I might be a snob and think you should always end up reading the actual underlying text.
I'm going to go with, "something else".
Almost all the books that are going to be reviewed here do not exist in a vacuum, they are contributions to some field or other. The value of these book reviews (for me) is to put the books in the context of their field. What is the main thesis of the book? How is this new or different from what went before? What are the competing arguments? How convincing is the thesis in the context of wider research?
For books that are arguing directly against the conventions of their field, the context will often be in the book itself. For books that start from first principles and try to root their theses in some history that goes back to the Big Bang/Garden of Eden (looks like this book might be one of those), a good book review would require an author who is a domain expert or at very least widely read in the field to supply the context from their own knowledge.
It is for this reason that I don't particularly rate this review, even though I enjoyed reading it and like the writing style. I want reviews that give me a bigger picture and this one is myopically focused only on its subject book.
For future contests, Scott might consider requiring one upvote from someone who claims to have read the source material or is otherwise familiar with it. This might not require much effort -- Scott's readership is broad enough that such readers already exist in most cases. This would help address the "fascinating review, but reviewer didn't understand or read all of book" problem that seems to have emerged this year.
n=1
I got this cluster of fatigue symptoms 3.5 times in my life. Twice, after getting ACL surgeries. Lasted about 5 weeks each time. It was very distinct when it ended, like a light switch got turned back on in my brain.
Then last summer I got a milder case of "blehs" that led me on a blood test wild goose hunt. I found my Vitamin D low and thyroid antibodies high. Macrodosing with Vitamin D for a couple months raised Vitamin D to supraphysiological level with no other symptoms or signs. Thyroid antibodies still aren't all the way down. Sometime last fall, the blehs faded away.
The 0.5 time was this June when I tweaked my back and was on ibuprofen and muscle relaxants over a weekend. I eventually dragged my bum to the gym and did a kettlebell workout for lower back pain. Pain didn't come back, and fatigue cleared the morning after.
Based on personal experience, I conclude that fatigue (at least in some people) is the body's natural convalescence mechanism that is failing to shut down.
Yes, certainly the nervous system is out of whack, meaning parasympathetic responses are deprecated, and research has shown sympathetic responses are unnaturally elevated. It's not yet known why, but clearly your experiences are of the world of the normal, and are unrecognizable to those with severe CFS/ME, those who have been waiting for that "switch" to turn back on for years, trying everything with no success.
Ok, yes, but if I feel exhausted, what should I do?
My guess (above) is that this fatigue is your body thinking it's still sick.
If my guess is right: figure out why your body thinks it's still sick and address the underlying problem.
I assume there's also medical literature out there on convalescence that would be more useful than literature on CFS or anything else cited in this book. I haven't looked myself.
Do you have post-exertional malaise, meaning you feel more exhausted after exerting yourself physically or mentally while other people seem to recover? If so, then you ought to read more about CFS/ME. A lot more is known than when this book was written (2016). For instance, it now appears that a number of people with CFS/ME have neck/spine instability that can be treated.
The stories I hear about CFS/ME seem to be about extremely energetic people-- high pressure job, athlete, raising a family, possibly another hobby in addition.
It is just that CFS is a strong contrast when it hits that sort of person, or is it less likely to hit people with low or average energy expenditure?
I've seen anecdotal evidence on chat boards that do indicate a particular pattern of Type-A types getting sick, so that's definitely one manifestation, but I don't get the sense they make up a massive majority.
One important project would be an extremely comprehensive survey about all aspects of life and history of those with CFS/ME. I'd love to see if patterns show up -- whether biological, psychological, behavioral, etc.
Does the former marathon runner have the same basic systemic disruption as the person who never recovered after a viral infection, or the person who was abused as a child? My suspicion is that long after such stressors have been removed and dealt with, they can still physically lock up the nervous system in remarkably similar ways -- and it could have just been an idiosyncratic fluke in some, like getting an infection at just the wrong time. We simply do not yet know.
CFS/ME could be caused by overexertion exacerbating or creating cerebrospinal injury/malformation. Many people with CFS/ME seem to have craniocervical or altoaxial instability and at least some have had their CFS/ME cured through surgery or simply through cranial traction. The instability is theorized to be caused by genetic susceptibility or through a reaction to EBV or some other virus causing lax ligaments.
This is interesting-- it never occurred to me that CFS/ME could be the result of a macro brain problem rather than something more subtle and metabolic.
If you want to read more about this, Jen Brea's series about it on her Medium blog is really great. For part of her reasoning for why she thinks a lot more people with CFS/ME have similar issues as she had, see this:
https://jenbrea.medium.com/pathology-part-i-a-walk-around-my-brainstem-abc515fb0be6
Thank you. Reading one thing is more like what I'm up for.
I'd just like to add that this book is from 2016 and is thus missing the last 6 years of thought and research on CFS/ME. One of the greatest findings in the last 6 years is that a number of people with severe CFS/ME have their symptoms disappear following cranial traction.
For a couple startling anecdotes for anyone interested in reading more about this, check out Jen Brea's account here https://jenbrea.medium.com/cci-tethered-cord-series-e1e098b5edf and Jeff Wood's account here https://www.mechanicalbasis.org/mystory
I knew about this and I was really wondering if somebody around here had a more nuanced take on this theory.
I didn't read the whole thing yet - but I think I did have this 'syndrome' when I was a teenager. It mostly went away - through possibly I have timing wrong\* - when I started using modafinil. Before I started earning income to purchase it through _unofficial_ channels I wanted to try it - few annoying doctor's visits later I was just told I'm lying by some neurologist (IIRC) and gave up. I hate the guild system which enables state paternalism.
\* seems unlikely because if I don't use it or other stims, I think I function much the same as I did before I started (sleepy/tired most of the time, despite adequate sleep). Unless my memory is faulty and it's just substance dependence.
Review-of-the-review: 8/10
Writing in which disparagement of Christian intellectual history outstrips understanding of it is a pet peeve of mine, and this review's superficial treatment of "acedia something something sexual sin something something Protestant ethic" certainly qualifies. (I suspect this is mostly the reviewer's fault and not Schaffner's because Alan Jacobs cites her approvingly: https://blog.ayjay.org/exhaustion-its-causes-and-treatments/) Between that and the generally disappointing level of engagement and critique in this review, I don't expect to vote for it. On the other hand, it's well written (except for the last sentence), covers an interesting and relevant topic informatively, and does a great job of communicating the book's overall argument concisely. It made me want to actually read the book to understand the topic better, which is how an effective review of a good book should work. As always, many thanks for contributing!
There are some comments accusing historical monks of malingering, being able to “get away with fatigue”, and this is so magnificently incorrect that I had to make an account to comment. (If you don’t know what life was like for a member of a monastic order, you really shouldn’t produce such terrible opinions, which is a true intellectual version of malingering.)
A medieval monk existed in a culture that prioritized obligation to the order over everything. It took on spiritual importance, literally: everything that a medieval religious person valued was associated with God, and failure to adequately worship God would be the most punishing and shameful thing imaginable, something that could lead eternal damnation, virtual eternal suffering. In other words, all psychological and spiritual value would be motivating the monk to continue his duties. It’s hard for us moderns to grasp how significant religion was to a medieval person, but failing to meet one’s religious duties would be worse than an immigrant student disappointing his parents’ wishes to become a doctor, while also disappointing all of his teachers, while also disappointing most celebrities and his favorite musicians, while also disappointing the producer of all of your favorite art and media (the church).
But not only is the monk maximally motivated to fulfill his obligations in a psychological and emotional sense. He was also maximally motivated because he would face social punishment and physical punishment if he failed. He would be disappointing virtually everyone that he interacted with (his brethren). He would be criticized by his order’s leadership. Last but not least, the monk would face punishments that are no longer found in the modern era: long daily fasts, long painful hours kneeling in prayer, and corporal punishment which may include self-flagellation or the wearing of rough painful hairshirts and “bracelets” that stabbed the thighs.
So to sum up, a monk is not someone who can “get away” with malingering. This betrays profound ignorance of history. A monk is someone who existed within one of the most sensitive contexts of reward and punishment in history. The fact that monks suffered from this means we ought to exclude malingering entirely from the options.
What the victims had in common was intense intellectual work. Lots of abstract creative and wordy work. The cures invariably reduced the amount of intellectual labor, both the “Rest” and the “West” cures. True deep creative work is costly. We’re not talking about “reading a passage and replying with the answer”, which is schoolwork and non-intellectual. We’re talking about creative insight which relies on stressing the mind to produce new answers, something very different than the rote response of normal reading/writing.
The masturbation passages are interesting. Insofar as intercourse is a motivator in human behavior, masturbation would reduce motivation and thus perceived energy. This is obvious. But the overemphasis on masturbation was likely (1) moralistic and (2) confusion over cause/correlation. Many mentally I’ll men compulsively masturbate and this may have lead doctors to believe masturbation was the cause. These combined likely explain the emphasis on masturbation in some of the 18th century literature. Frequent sex is not a social “demotivator” because it requires pro-social actions for coitus with a woman to occur. Even going to a prostitute requires much more physical effort than masturbation.
One more comment: low dose naltrexone, an opioid *ant*agonist has recently been used with some success in treating CFS. This implicates pain sensitivity in CFS, as naltrexone induces the body to upregulate opioid receptors. This calls back to historical views on intellectual activity and “sensitivity”: for most of European history it was believed intellectual activity required a sensitivity to pain (and all stimuli). This is where “nervous” diseases come from, the belief that the nerves were particularly sensitive. If CFS is indeed linked to a long-developed hyper-sensitivity to pain and stimuli (likely), it does sort of justify the old view on neurasthenia as sensitive nerves.
Scott, are you sure these reviews are written by other people? :D