I'm sure it doesn't explain everything but I wonder If there is age confounding here.
Obviously there has been a lot more openness about and awareness of transgenderism in recent years. But also I feel like hypermobility wasn't discussed a lot even 10 years ago.
I have had back problems since I was a child. I've now learnt that it's probably caused by hypermobility. But no one suggested that when I first had issues ~20 years ago.
The brain has connective tissue. Maybe EDS disrupts brain connective tissue leading to general neurodiversity? Or even particularly targeted at however the brain represents theory of mind?
Would be quite interested in hearing more about this - "all forms of neurodivergence correlate with each other".
I'm totally cis-hetero, but I'm hypermobile and super clumsy and would welcome anecdotal or more supported info about how to deal with the weird disconnect between brain/body that plagues we hypermobiles (and maybe everyone to some extent--I wouldn't know).
I think "joint issues → poor proprioception" is the most interesting step to me. In the field of robotics there's something called inverse kinematics that's used when you know where you want the end of a robot arm. You use the properties of the arm to back into calculations for the corresponding angle of each of the intermediate joints because this is what you effectively need to tell your motors in order to put the end of the arm where you want it to be. With zero knowledge of the relevant neuroscience, it's easy for me to imagine how joints that are either inconsistent from movement to movement, or gradually changing over/after the course of development could really throw a wrench into whatever the brain's analog of inverse kinematics is.
Don't trans people have high rates of mental illness? Seems likely to be a mediation relationship if not spurious. See https://onlinelibrary.wiley.com/doi/abs/10.1002/ajmg.c.31955
I think you've got a confusing typo here-- you wrote:
'Here’s the results for biological men - “M (cisgender)” is coded as cis, “F (transgender f → m)” or “Other” is coded as trans.'
Since you are talking about biological men, I think you meant to say 'F (transgender m→ f)' not 'F (transgender f → m)' ie, the sentance should read: 'Here’s the results for biological men - “M (cisgender)” is coded as cis, “F (transgender m→ f)” or “Other” is coded as trans.'
Thank you so much for doing this analysis. I only had a comment about the cis-trans, biological-trans nomenclature. You switch kind of liberally between the terms “biological woman” and “cis woman” (and same for men) despite there being an inexact overlap of the two (e.g. nonbinary afab people; intersex people who identify as cis; etc), and despite having asked only questions about cis or trans status in the survey.
It results in a small loss of specificity and doesn’t appear to aid clarity either (plus it raises hackles I’m sure for any trans readers and/or survey responders seeing themselves referred to as “biological men” or “biological women”).
It was just a kind of surprising detour from the usually very appropriate and specific terminology you use when discussing anything trans, and I couldn’t see any benefit gained by it. (So I thought it worth drawing attention to/asking about.)
It seems that the "instagram" theory is extremely easy to falsify.
I have generalized joint hypermobility (I'm also queer / not cis in a vague sense that doesn't show up on the survey). This is a diagnosis with clear physical markers. Stuff like "your elbows overextend more than 10 degrees.
Most variants of EDS are also like this. It's only some (I think ?) rarer variants that don't present with joint hypermobility and skin extension.
My (cisgender) spouse has EDS -- diagnosed after a lengthy process involving multiple doctors and ultimately a geneticist.
My (transgender) daughter has not been diagnosed, but is similarly hypermobile, prone to subluxation/dislocation, etc.
And another of our children, while undiagnosed, is pretty obviously "on the spectrum" in the area formerly referred to as Asperger Syndrome before that diagnosis got merged into other autism spectrum disorders.
My takeaway from the EDS/autism link: Yay. I get to blame my wife for all the kids' problems. On the other hand, she's also obviously the reason they're good-looking, so ...
The fact that so many conditions that seemingly have no connection are related to autism make me think that autism (which for the purposes of this comment will refer exclusively to the "reads esoteric blogs better than people" autism rather than the "cannot form a coherent sentence" autism, which may or may not be the same condition) is less an actual condition and more just a result of adapting to many small, sometimes difficult to describe dysfunctions. From personal experience it seems that autistic people, myself included, suffer from numerous weird maladies that have nothing to do with social interaction.
Gut inflammation, weird skin conditions, extreme/non-standard effects of common drugs like caffeine, joint problems, food intolerances, gender dysphoria, body dysmorphia, circulatory issues, epilepsy/other neurological disorders, psoriasis, kidney disease, sleep disorders etc. It's a weird constellation of health problems that seem particularly concentrated among autists. Not that everyone has all of these conditions of course, but every autistic person I know has at least 3 of these, and I'm struggling to think of one non-autist I know that has more than two.
John below me mentions vaccines, but I don't think that's the cause. I imagine it's something more like when you crash a car in such a way that it doesn't run quite right anymore, but not in such a way that you can point to anything specific. Yeah, it's clunkier than before, and it doesn't have quite as much zoom to it, and oh, yeah, that belt makes a clicking noise, and the oil seems to disappear a little quicker than it should, but hey, it runs, right? The issue with the car isn't anything particular, everything about it is just a little bit broken. To me, that's what autism feels like, both from an internal view, and from viewing others.
As to what the crash was: Who knows? Personally, I'd lay the blame at all those different things we know are bad for us and continue to do, particularly those that started becoming more common since around 1980 or so, since the cohorts born after then seem to have the problem much more frequently. Antibiotics ruin gut microbiomes, and yet we consume unreasonable amounts of antibiotics through our food. Then there's plastics, which even if the effects aren't extreme surely cause some amount of damage during the vulnerable years. Throw in horrible foods, a lack of physical activity, and staring at a screen for inordinate amounts of time and yeah, I have no doubt that our bodies are just a little bit broken everywhere.
I have this image in my head that transgender women are really into dancing. Perhaps there's a cause/effect thing going on. Where joint mobility is corellated with dancing, and being transgender is corellated with joint mobility.
For me, when I try to touch my radial with my thumb, I have a 90 degree gap. My maximum wrist to hand angle is less than 90 degrees.
I have EDS, am not trans.
With EDS, the joint issues are the most salient, however the condition impacts tissues across the body. Muscles, digestive track, blood vessels, skin, eyelids, etc. Everything is kind of gooier than it should be. Also, most people with EDS are diagnosed later in life, like in their 20s or 30s. So you have this weird body, that isn’t like other people’s bodies. You know your body is different because you can’t do the things peers can effortlessly do, yet you can do things peers find impossible.
Medical professionals are not trained to diagnose EDS, for the most part. It is a rare condition. They are trained to think horses when they hear hoofbeats, not zebras so when you describe your symptoms, medical professionals look at you dumbfounded and start working on more common problems. (The EDS advocacy organization mascot is a zebra for this reason.)
So when doctors don’t diagnose you with EDS, but you know something is wrong, what can you do? I can see a scenario like the following with someone with EDS playing out: Start reading stuff online. There is this thing called trans? Where I’m in the wrong body? Yes. My body is not right. Sign me up. There is treatment? Great. Sign me up. This will take care of these strange issues plaguing my body? You call it gender dysphoria, doc? Ok. Let’s start the treatment. I want my body to be normal.
So I guess what I’m trying to say is:
The patient knows something is wrong with their body.
The physician want to help the patient. The physician is aware of gender dysphoria but not EDS, so the EDS diagnosis is missed.
There is a treatment for a condition, gender dysphoria, that can seem like EDS.
So people are getting treated for gender dysphoria, which they may not really have, but not for the underlying EDS.
Notes: there are many types of EDS, hypermobile being the most common. There are genetic tests for many of the types, but to my knowledge, there still isn’t an agreed upon test for hyper mobile EDS. It’s based on symptoms.
There really isn’t much treatment for EDS. It’s managing symptoms. Your body tissues have been built to a given specification. Short of some science fiction stuff, you aren’t getting all new skin, joints, muscles, blood vessels, etc.
Aren't autism spectrum disorders generally correlated with mutational load? Does EDS show up more often in people on the spectrum than other genetic disorders with a similar number of mutations?
The answer I consider most likely and that will never be politically feasible to investigate is that autism is downstream of mismatched neurological correlates to gender. There is no reason to think all neurological dimorphism in all configurations always causes atypical gender identity, it could also cause autism or other conditions, and the correlation between the two could be because they are different degrees or configurations of the same underlying atypicalities.
"My guess is something like joint issues → poor proprioception → all sensory experience is noisy and confusing → the brain, which is embodied and spends most of its time trying to process sensory experience, learns a different reasoning style → different reasoning style is less context-dependent (producing symptoms of autism) → different reasoning style when trying to interpret bodily correlates of gender (eg sex hormones) → transgender."
As someone diagnosed with EDS in my 30s by a mainstream geneticist at BigHospCorp, with a Beighton score of 7/9 according to protocols designed to minimize false positives (just eyeballing, my pinkies look like they might put me at 9/9, but I don't get the 2 pinkie points with careful measurement), I'd say, yes, growing up in a body whose range of motion isn't as well-bounded away from injury as other people's is does make for more noxious, confusing bodily sensation to keep track of, which can be rather overwhelming.
Also, hypermobile joints → increased risk of repeated sterile tissue injury → increased risk of riling up your immune system basically all the time from accumulation of said injuries = "immune derangement" → cognitive and behavioral effects of immune derangement
And, if you're born biologically female, well... female fertility is inflammatory, menstrual cycles induce bouts of joint laxity, anyhow, which are particularly frustrating for those whose joints are already injuriously lax – and androgens have a GREAT reputation for building the muscle mass that helps protect lax joints!
Here were the protocols used for my Beighton scoring. Interestingly, the physiotherapist who measured me stuck rigorously to these protocols, while the geneticist just eyeballed them (though that may be because the physiotherapist's measurements were already in my file):
* Passive dorsiflexion of each fifth finger greater than 90°. This should be assessed with the palm and forearm resting on a flat surface, and is considered positive only if the fifth metacarpal-phalangeal joint (MCP) can be extended more than 90°. Ability to extend the tip of the fifth finger to a position proximal to the MCP is insufficient to be called positive if the MCP does not extend more than 90°.
* Passive apposition of each thumb to the flexor surface of the forearm. This should be assessed with the elbow extended and hand pronated.
* Hyperextension of each elbow greater than 10°. This should be measured with a goniometer, with the hand supinated, elbow fully extended, and shoulder abducted to 90°.
* Hyperextension of each knee greater than 10°. This should be measured with a goniometer, with the patient standing and knees fully extended.
* Ability to place the palms flat on the floor with the knees fully extended. This should be assessed with the knees locked in extension and the feet together, and is considered positive only if the total palm of both hands lies flat on the floor just in front of the feet. Slight flexion of the knees, spreading of the feet, failure to get the heels of the palms to the floor, and positioning the hands more than a few inches in front of the feet are common causes for false positive scoring of this point.
If you have small sample sizes an exact Fisher test might serve you better than chi square, even though it probably won’t make a big difference.
Perhaps the connection goes something like connective tissue disorder is related to peripheral neuropathy which is related to not feeling comfortable in your own skin and/or changes in the brain which is related to feeling trans?
The first time I heard about EDS was from reading Will Powers talk about seeing it in his trans patients, like you mention (I'm trans myself). I decided to run through the Beighton criteria myself and I seemed kinda... borderline? Though there are other types of hypermobility, in e.g. cardiovascular and intestinal, that I had that I found myself thinking if this was a thing with. It's been an interesting lens to see some of my health problems through though; I found out about mitral valve prolapse through learning about EDS, noticed my last EKG strongly indicated it and that it can cause the dysautonomia I have, and now I'm going to get an echocardiogram to see if I have it.
But also I worry if I am psychosomaticizing it, just by hearing about it? I wonder if there's data on base rates of hypermobility in the population.
Not hypermobile, but MTF trans and diagnosed with dyspraxia as a kid. If there's also a dyspraxia trans correlation that would add weight to the proprioception idea
EDS rivals DID in scope of TikTok contagion
The title of this is phrased as a question, but I'm not sure it is intended to actually solicit guesses. The paragraph with all the arrows in it might be simplified and made more blunt as follows. "Misfits have fewer incentives for fitting in." I'm not sure you could call this a steelman of your more nuanced take. This would also explain why we don't see a representative sample of conventionally attractive people becoming trans. Phrased baldly like this, it might seem prejudicial, but it is a statement about privilege and how people respond to not having as much of it. Anyone can observe that maximally fitting in to gender stereotypes takes a lot of work that is easier to do if the incentives are good.
I'll find the "contort your body in various horrifying ways" questions easy to answer: no. I can't contort my body even in non-horrifying ways. My motto is Treebeard's: "I am not very, hm, bendable."
Long covid can cause a lot more than just fatigue. Dysautonomia is pretty common, a lot of people get POTS after covid.
I remember another r/medicine post where some doctor wondered if Tiktok was giving all the kids POTS, kind of similar to the post you linked about "instagrammable illnesses":
Most of the doctors replying on there blamed social media and "sickfluencers". And then one medical student replied with an obvious alternative explanation: maybe we're seeing an uptick in POTS because we all just got covid and POTS is one of the symptoms of long covid. (it's also sometimes a side effect of covid vaccines, which we gave to hundreds of millions of people)
We have this perception of doctors from shows like "House" where they work tirelessly to diagnose complex diseases. But some actual doctors prefer to get on reddit and accuse their patients of faking symptoms?
I don't know. Surely some patients do fake symptoms. Is it common enough that a doctor should use that as a first guess? Or is it rare enough that a doctor should work thoroughly to exclude everything before coming to that conclusion?
"These results were a bit ambiguous, but I think overall they pointed in the direction of replicating the connection. 6/6 trends were in the expected direction"
Different effect sizes are different hypotheses. If one study gives a prevalence of 2x normal in the test group, and another study gives a prevalence of 132x normal in the test group, those studies are not sampling the same random distribution and should not be regarded as supporting each other just because they're "in the same direction".
e.g. if I flip a (unfair) coin a bunch of times and find that it lands heads 2x as often as tails, and you flip a coin a bunch of times and find that it lands heads 132x as often as tails, then either we're not flipping the same coin or there's some important difference in way we're flipping it that makes the results not comparable.
I'm a bit surprised that we didn't jump straight to increased genetic load as a common cause... thought maybe that's not helpful even if it were shown to be true.
I have a cancelable hypothesis (I'm not going beyond hypothesis on this) that being transgender is just a currently in mode manifestation of mental illness/depression/not being happy with yourself/etc.
It seems like throughout history people who've disliked their life have manifested this in different ways, whether it's becoming religiously devout, developing an eating disorder, deciding they have MPD, drugs, sucide, cutting (big when I was a teen), chronic lyme or whatever. I speculate that people who are severely unhappy look for a thing to do about it or way to explain it and often latch onto a trend. My speculation is that, if you are currently unhappy with your life and start looking around on TikTok or whatever, you will eventually find someone suggest that it might be because you are actually trans and some people go with it (20 years ago this might have been a pro-ana site). Since changing your life and taking up a cause are helpful in getting out of a funk, people who do this actually feel better and it can become self-reinforcing. For what it's worth, as outlets for depression/unhappiness go, deciding you are trans is seems like it is pretty harmless and, if it works, it works.
This would also help explain why there is so much suicidal ideation/attempts among trans people. It isn't that being trans makes you suicidal, but that being the sort of person who is suicidal makes you the sort of person who would settle on being trans as an alternative solution.
At this point I'm just putting this in the hypothesis category. I don't have enough information or enough qualifications to say it is definitely or even likely true, but is seems plausible to me. It may also not be the only reason people are trans. It may be that there are some people who are "actually" trans while others who come to it as a form of self-medication.
I've been waiting a long time for the rationalist community to get their deft hands on this topic. I'm close friends with a number of people that fall under the same symptomatic umbrella of neuropsychiatric-inflammatory-metabolic issues. They have seen these patterns repeat enough to convince them of a common factor. Intuition and observation prime me to agree - but what REALLY gets me is this theory - https://www.rccxandillness.com/. Basically, the argument is that CYP21A2 mutations have a cascade of effects, most of which appear downstream of Krebs cycle dysfunction. I may have mangled that, but there's a whole lot more on there, and to my nonprofessional eyes it seems excitingly feasible. If you ever wanted a thorough, expert level theory that answers the direct question of your post with as much research as possible, this is it. Check it out and let me know what you think.
The relationship between Ehlers-Danlos syndrome and long covid could be the same relationship as that between Ehlers-Danlos syndrome and myalgic encephalomyelitis which could be due to strain on the spinal cord and brain stem due to neck instability. For more on this idea, see Jen Brea's Medium posts and Jeff Wood's website: https://jenbrea.medium.com/ https://www.mechanicalbasis.org/mystory
I’m voting for “weird gene/protein thing”.
Compare this with primary ciliary dyskinesia, which causes your bronchial cilia to not work, causing various respiratory problems. And then, (exactly) 50% of the time, it also causes all of your internal organs to be mirrored so that your heart is on the right and your liver on the left, etc. Because evolution is a mad scientist and it does things that make no sense.
What is the evidence that “CAH causes gender divergence”?
I read this and immediately thought that if these conditions, and others are linked to elevated levels of estrogen, it is exactly what I'd expect to see based on what little I know about Bisphenol-A and pseudo estrogens. I can't claim special knowledge, and would be happy for any corrections, but my understanding is that chemicals like Bispehnol-A enter the body in a variety of ways, trigger endocrine all kinds of inappropriate endocrine activity, operate at very low dosages (unlike, say a carcinogen that might require continued exposure) and have been in every US citizen for about the last 30 yeats.
Obviously I wouldn't want to simply explain away all of < current year> ills with a single chemical, yet, the thing about BPAs that always stuck with me was how impactful they were at micro doses and how little information on the impact on humans existed. Frankly, it still feels like a scoop, but maybe I'm just waaaay out in left-field.
(FWIW, I did my research a few years before I heard Alex Jones talking about 'gay frogs,' but this is that same basic issue)
Just because you mentioned CAH, I got the results today from a genetic test I took because me and my wife are going to start trying to have a baby soon, and the only genetic disorder I tested positive was as a carrier for CAH. Does simply being a carrier affect me(a man) at all?
I'm not worried yet about passing it to my kids, my wife's test hasn't come back, but based on the distribution in Ashkenazi Jees, there's only a 1/250 right now that our kids get it.
Scott, we love your work because you're committed to following the data, wherever it leads.
You wrote "All Instagrammable conditions cluster together among Instagram users; if transgender is also Instagrammable, that could explain the finding."
Bingo. You won't get to the bottom of the EDS <-> Transgender <-> Autism connection without considering social contagion as a cause for transgender self-identification, particularly among autistic girls.
This is, of course, against the trans orthodoxy. Will you follow the data wherever it leads?
Abigail Shrier's book 'Irreversible Damage' might provide a good summary of the issue and starting point for your investigation.
FWIW i have a fairly popular essay about this topic: https://arcove.substack.com/p/null-call
Basically I notice strong similarities between random laundry list of symptoms of "shaman's sickness" found in an old pop anthropology book and Shannon Megelathery's RCCX hypothesis and "CYP21A2 Mutation Associated NeuroPsychiatric Spectrum", which links EDS to a variety of other conditions (more on that here: https://www.rccxandillness.com/cyp21a2-mutations-may-be-the-diathesis-in-the-stress-diathesis-model-for-chronic-medical-and-mental-illness-and-may-cause-a-psychiatric-spectrum-caps.html). I then go on to muse about the evolutionary psychology "shamanic hypothesis" and what it would mean to adopt that as a part of your identity in the modern world.
Lies, damned lies, statistics. And data. None of the above explanations. Or all of them. Or some. But only in the presence or absence of Factor X. It just kills us to see a pattern and have no explanation. We lack the patience for seeing if patterns persist over time and, if they do, to do the heavy lifting to get enough rigorously developed data into enough carefully applied analyses. The fundamental problem we have in coping with randomness is that randomness is chock full of patterns and we are all descended from a very long line of ancestors who lived long enough to be our ancestors on their ability to detect patterns.
For the avoidance of doubt, I am not poohpoohing the existence of the phenomena or the associations with trans people or other classifications. What I am doing is pointing out there always are limits on what we can know and understand. Part of living the evidence based life is the ability to say “I just don’t know enough to say one way or the other.” And then go on to the even harder part of treating doing nothing as a no more intrinsically valid choice than doing something under uncertainty.
The correlation between Long COVID diagnosis and LGBT seems obvious enough to me. There's a large gap in perception of the existence of Long Covid between left and right political camps. And far more self-identified queer people on the left than the right.
Throughout the pandemic, conservative news sources downplayed Long COVID while liberal news sources hyped it up. Anecdotally, whenever I've discussed the topic with liberal friends they've always taken it very seriously... in the more extreme cases, some kept wearing masks long after the vaccines came out due to fear of getting Long COVID. Whereas whenever I've brought it up to conservatives, they've all been skeptical about it. Most of them think it's been exaggerated and over reported; one I interacted went so far as claiming that there was no such thing, and it was all just misdiagnosis.
I guess the ultimate diagnosis is up to the doctors, but seems much more likely that someone on the left would seek diagnosis of Long Covid after experiencing symptoms, while someone on the right would interpret the symptoms differently... either not reporting them at all or leading the doctor in some other direction.
This post caught my attention because I happened to meet a trans woman with EDS and hypermobility about 2 months ago, which was the first time (and only time) I've ever heard of EDS.
Her limbs keep popping out of their sockets and need to be reset, and all of her fingers can bend backwards. I'm trans myself, and have thumbs which can bend backwards, as well as a jaw that can open beyond the normal range.
Given how my own autism has driven me to become obsessed with various lifestyle changes, often lasting years, it wouldn't be surprising to me if the autism correlation with transgender population was sometimes causal. I could see myself as a younger man becoming fixated on the fact that I *could* be a woman and pursuing hormone therapy purely out of curiosity.
I have a diagnosed "marfans-like genetic condition" and issues with pervasive nausea. I was recently watching a talk on functional nausea, and apparently, they're finding a correlation with EDS/connective tissue disorders as well. Functional Nausea is an interesting condition that seems to intersect between gut and nervous system, since vagal nerve stimulation and hypnotherapy are both reportedly effective, while drugs are generally not.
I had been dying to know what you were going to do with the hypermobility question!
I’m cis-het female with diagnosed but not specified hypermobility. I was always double-jointed and filed this under “stupid human tricks”. And then about a decade ago I did something weird to my neck that was bad enough to keep me going to doctors for a few months. All of them prescribed stretching. Eventually I found one who watched me touch my ear to my shoulder and told me to stop stretching. He actually compared me to “a piece of overcooked linguine.” It worked- I avoid stretching and get hurt way less than I used to. My sexuality and gender identity were never anywhere near as flexible as my tendons.
I’m guessing hypermobility is way under-diagnosed. I wasn’t the only double-jointed kid in the cafeteria, but maybe I was the only one who torqued her own destabilized neck hard enough to seek help. I have to cut the doctors some slack, since most times I came in unable to move my neck *at all*. Suggesting stretching is also probably a horses-not-zebras thing, since it helps the vast majority of the cases that show up in your office.
But I just remembered the only kid in high school more double-jointed than me…is trans! I’m surprised I remember this, but 210 degree elbows do make an impression.
"But Long COVID is maximally easy to psych yourself into thinking you have - it’s just fatigue " - what, seriously?
"General symptoms (Not a Comprehensive List)
Tiredness or fatigue that interferes with daily life
Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
Respiratory and heart symptoms
Difficulty breathing or shortness of breath
Fast-beating or pounding heart (also known as heart palpitations)
Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
Dizziness when you stand up (lightheadedness)
Change in smell or taste
Depression or anxiety
Joint or muscle pain
Changes in menstrual cycles"
As an alternate explanation, we should consider the fact that maybe brain development and connective tissue are more related than one would expect. For instance, “FXS is an X-linked disorder due to a full mutation of the CGG triplet repeat of the FMR1 gene which codes for a protein that is crucial in synaptogenesis and maintaining functions of extracellular matrix-related proteins, key for the development of normal neuronal and connective tissue including collagen. In addition to neuropsychiatric and behavioral problems, individuals with FXS show physical features suggestive of a connective tissue disorder including loose skin and joint laxity”
So we already know that abnormalities in extracelluar matrix formation can lead to both abnormal joint function and atypical neurological development. And it’s easy to imagine how neurological differences could affect a person’s gender identity. This strikes me as a much more parsimonious explanation for the link between gender identity and hypermobility.
I may be way off track here, and I realize that I sound like a boomer, but if propioception is so important for establishing neurotypical patterns - could it be that changes in how children are raised (less time on playgrounds, more time glued to screens from a very young age) do have an impact on the (apparently increasing) rate of ASD/ gender-dysphoric/ body-dysmorphic/ other neurodivergent issues observed in young people?
I struggle to see why you need to invoke proprioception and brain stuff here. Some people's physiology kust makes their joints bendier than others. If you killed me and a hypermobile person (please don't) so neither of us was propriocepting anything any more you would still be able to bend their joints further than you could mine. Perhaps you'd find that their ligaments were longer or had different stress-strain curves if you took the time to autopsy us.
What do you call the opposite of a disorder: when you are way above average in flexibility in a good way? In golf, mid-century great Sam Snead could touch his wrist with his thumb and kick the ceiling with his foot. The term they used then was "double-jointed." Similarly, John Daly is a strong fat guy who looks liked he'd be muscle-bound, but he takes an extraordinarily long, graceful backswing and was the longest driver of his generation of tour pros.
Both lasted a long time: I attended the L.A. Open in 1974 when Sam Snead made a final round charge and wound up finishing second at age 61. (Later that year he finished third behind Trevino and Nicklaus in the PGA major championship.) Everybody figured Daly would have drunk himself to death by now, but he's still around, playing on the Senior Tour.
Reduced interoception could perhaps also be a factor
I responded "no" to the hypermobility question (not even "now you mention it...") because my joints in general aren't over-flexible - I think they're actually below averagely flexible - and I've never dislocated a joint. But I do have some "double-jointedness" in my hands. Like the respondent you quoted, I can push my thumb to touch my wrist without discomfort, and I can bend my finger joints backwards (even without the use of the other hand) to freaky-looking angles.
I think it's probably still more accurate for me to have responded "no", because finger hypermobility isn't going to cause any weird proprioceptive effects growing up. OTOH, if you're interested in genetic or epigenetic effects, then hypermobility in just one part of the body could still be relevant.
I don't know how common it is for people to have very localised hypermobility-like symptoms. But if it's fairly common and some of those people answered yes and some answered no, that might dilute the usefulness of your results. So it's good that you're going to do a follow-up that asks about separate joints separately.
(I'm a cis woman, and probably autistic in the Asperger's sense.)
One more data point indicating a correlation between all three issues (though I am a "mild case" for all three).
1. Gender: I am a biological female who identified as transgender a few years ago and did everything, including social transition, except hormones and surgery. The "trans identity" never really resonated though, and eventually I ran a cost-benefit calculation and decided that transition was a net negative. Accordingly, I am no longer taking steps to change others' perception of my gender, and would have ticked "cis female" in the ACX survey. Some degree of what is referred to as "gender issues" in another of your posts does persist (e.g. I have a doctor's appointment next week to sort out whether my current insurance would cover chest reduction surgery). (-> Maybe the survey should be more granular?)
2. Autism: I'm not sure I'd fit the diagnosis, but I am at least pretty far to the autistic end of the spectrum. I can run my own life without assistance and have learned to behave neurotypically in most contexts, and at no point I would have rated my symptoms as severe. I do a lot of things that seem to be typical of autistic people (e.g. I used several blankets to make them heavier for years, long before I ever heard that weighted blankets are a thing, run around in my thermal underwear in my home basically all the time, and actively trained my facial muscles for to make my face seem more mobile and facilitate social interaction, in an experiment which I consider a success.)
3. I wouldn't have thought to connect it before this morning, but after reading your post it seems at least noteworthy that I'm also diagnosed with hypermobility syndrome. I went to see a doctor with back pain and he observed how far I could reach in a few stretches, then gave me his diagnosis and told me I could fix the issue with strength training. I did, and it worked. I'd known I was exceptionally bendy through Aikido practice, but hadn't thought twice of it. This bendyness predates the gender issues.
I've never been more than a very occasional user of social media, and I do not think my overlap with the special snowflake cluster is especially high. (It's nonzero though, FWIW.)
I think my mutational load is probably high, and think this might be related to the fact that my mother had me at 40 after several miscarriages. The only alternative theory I am able to generate is that my overlap with the special snowflake cluster is higher than I think, but I do not find it very convincing.
I'm interested in what is up with this, and I'm very happy to answer questions to help gathering data points!
This is somewhat of a repost from old SSC stuff, which I remember reading back then and feeling kinda...FOMO I guess? at not having this particular statistical mobility correlation...autism, check, +1 status bonus to Illusion-related checks, check, weird sensory issues, check. But I only have good twitchy Reflex saves, not full-out high bendy Dex...I'm no Beckham. Constant quip when someone compliments "nice reflexes!": "if I really had good reflexes, I wouldn't have dropped [thing] in the first place!"
Also, to poke an anecdotally small hole in Theory 4.5, I have above-average <s>passive Wisdom</s> <s>Perception</s> er, proprioception. Even if there's some confusion in my brain about what the exact body-map shape of the meat-territory is, it's very not confused about __where__ those parts are, both in absolute spatial terms and in relation to other objects. (Fun practical practice: try dodging through doorways as they close without touching them. Except revolving ones, those are dangerous.) There's a discrete "collision detection module" that takes extra effort to dial down or turn off - unlike, say, the "social graces module", which I often disable to conserve cognitive load under duress.
(By contrast, your old take on Autism As Sparsity Prior felt pretty correct to me, for whatever degree/causal connection the two things are entwined. You fit the mental model to the data you have, not the data that actually exists...)
Anyway, hello to the other (floor) 275 or whatever of us out there. I remain both impressed and also saddened that I tend to learn more tractable and interesting things about transness from Scott than from actual activists or capital-R Researchers. Here's to wishing once again for better data about our strange corner of human possibilityspace...
I was told I'm hypermobile, but I didn't think it would impact my life much. Turns out it makes you resistant to local anesthetics and I found out the hard way in 2019 by requesting an abortion with only localized anesthesia (since I was curious about what it would be like and didn't want to miss anything). I was deeply interested in trying to figure out why afterwards and my current working hypothesis is this: https://www.hypermobility.org/local-anaesthetic
I also recently discovered I'm a transmasc enby (instead of agender like I previously held as an intellectual position) who does not feel gender dysphoria (possibly due to dissociating it away since age 13), but feel an insane amount of gender euphoria when being seen and treated as more male (despite my dislike and rejection of gender roles and expectations about "male" behavior). This article is making all sorts of connections for me about why I'm a medical anomaly
A lot of other things, such as left-handedness at birth, made it so that it's a mistake for me to assume that the "average" outcome from studies (that usually exclude left-handers) would be the same outcome for me.
There's an absolute flood of self-diagnosed EDS on social media recently, especially among the 'spoonie' community. Many of them feel it is a chronic pain disorder, and complain of back pain, use wheelchairs and try to get surgery for it. The few real cases I have seen (and it is a rare disorder) are not characterised by pain at all. There's plainly a social contagion going on.
"contort your body in various horrifying ways "
Here is me reaching with my left arm, around the back of my head, under my chin and touching my left ear.
Not autistic or trans. But fairly flexible. The one thing that stands out is my fingers can bend backward 45 degrees.
Pregnant women get much more bendy. Ligaments loosen for different posture as she gets bigger and finally loosens up the pelvis for childbirth.
To synthesize a little: if gender divergence is a function of emotional and hormonal responses occurring independently of bodily proprioception, what would we expect from the a generation for whom intense, interactive and interpersonal, experiences mediated entirely by screens were available during puberty?
Is it a misguide hypothesis to suggest that proprioceptive wiring combined with exposure and embrace of screens during puberty can un-anchor gender identity from sex? Is it too obvious?
Obviously books and television can do the same thing, but not quite in the same ways. I would still expect higher rates of transgender and bisexual identity among book lovers.
Scott, read Null Call
The people who suffer from social contagion of gender dysphoria are going to suffer from comorbid social contagions like EDS. I also think there trans-genders whose etiology is much less attributable to social contagion, and with this population It would be really interesting to study theory 4 RE proprioception, neuro divergence and autism comorbidity.
The problem with studying this is it’s going to be hard to disentangle the bona-fide transgenders and bona-fide EDS’ers from the social contagion ones, and so consequently they’re going to completely dilute your sample away from non-functional neurological disorder effects.
As a (cis) person with EDS, this topic is interesting to me! I want to point out some interesting things about the Najafian paper.
1) It found an EDS rate of 2.6% among GAS patients, which as you point out is ~100x higher than among the general population. If the rate of CAH were also 100x higher, that would be 100/15,000 = 0.67% - not equal to 2.6%, but a lot closer. Let's also consider that Tenascin-X (TNXB) mutations are only thought to cause some subtypes of EDS: hypermobile EDS (the most common type which also has several other causes - this is the one I have) and "classical-like" EDS which isn't very well-defined. But TNXB mutations only cause a small percentage of hypermobile EDS cases! So from the numbers it looks pretty plausible that linked mutations in the hydroxylase gene complex (implicated in CAH) and the TNXB gene could be responsible for a substantial proportion of transgender people with EDS - though not necessarily for most transgender people or most people with EDS.
2) The authors found the rate of wound healing problems was 28% in EDS groups versus 47% in control groups. This is *super weird*, because most forms of -Danlos syndrome are associated with *worse* wound healing, to a greater or lesser degree. Folks like me with hypermobile EDS often don't have any notable issues with wound healing (this is true for me), but I've never seen any suggestion that we have *fewer* wound healing issues than the general population.
I support asking about Beighton scores on the next ACX survey. Anecdotally it seems like a good, if sensitive, measure - my EDS is quite mild and doesn't affect my life in meaningful ways (though if I'm unlucky that may start change as I enter my 30s), and my score is still 8 (can't touch my palms to the ground).
Autistic and trans people tend to carry a high load of trauma and chronic stress due to being marginalized. So they tend to struggle with loneliness and alienation, and that leads them to gravitate to online socializing more than other populations. As a result they’re exposed to social media trends more than others. This would explain increased awareness of diagnoses like EDS that are highly publicized in social media.
And since there is a well known correlation between anxiety/stress and chronic pain, many people in these communities suffer from chronic pain. So they’d likely be especially interested in anything they encounter on the internet that might be an explanation for their pain.
While I’m sure some non-zero percentage of self-diagnosed “EDS” is the result of hypochondria or malingering, it’s also likely that many people genuinely suffer from this condition and only became aware it was a medical diagnosis through the internet. It’s much like autism in this way. There are many people out there - especially women - whose autism diagnosis was missed in childhood, and as the result of greater awareness through the internet, they’ve gotten diagnosed and have gained life-changing resources to manage their condition. Same with trans and gender dysphoric folks.
Sure, you get some trend followers and grifters who latch on, but the overall societal impact is largely positive. (Sorry to all the grumps out there, but people being annoying on the internet isn’t a real social problem.)
For what it’s worth I was diagnosed (pre-internet, by real doctors) as high-functioning autistic; I’m also non-binary, biologically male. Have always had very high joint mobility but can’t do a lot of the more extreme “EDS” tricks you see online, partially due to a lot of work I did to strengthen my joints and increase proprioception through exercise and physical therapy. I attend yoga class regularly and I tend to be more flexible than ~90% of the men and ~50% of the women, depends on who’s in the room of course.
I’d be even more flexible but I spend too much time sitting and that restricts mobility in my hamstrings and low back. Time to stop writing and get up, lol.
>gender affirmation surgery (ie sex change)
Is that necessarily true? E.g., our kid is non-binary and had top surgery that wouldn't be considered "sex change."
Just a nitpick.
Assuming the autism spectrum is somewhat relevant to this discussion, I would like to ask a question related to it.
As I understand it, autistic people find it hard to impossible to form second order representations. In social situations, this manifests itself as finding it hard to see things from other peoples' standpoint or putting oneself in their shoes.
Autistic people thus tend to appear distant and detached, sort of in their own shell, and become disproportionately distressed by changes made around them which their condition renders more or completely unpredictable, due to not understanding or even being aware of other peoples' motivations.
But does this handicap extend to more abstract concepts? Would someone on the autism spectrum be more than averagely likely have difficulty grasping and constructively using certain mathematical or programming concepts for example?
I would guess they might find it hard to get their heads round pointers in programming languages, such as C/C++. They might also have an aversion to forking child processes, or synchronizing multiple parallel processes. As for functors in category theory, or cohomology in algebra and topology, I should think someone on the spectrum would want to run a mile!
But I haven't heard of any such specific difficulties encountered by people with Asbergers. If anything, my vague impression is that they are more than commonly adept at mastering and using these concepts, as many a STEM Phd on the spectrum might agree.
1. I would have be more interested in essay if it had been written this way: Do people with EDS report more gender dysphoria?
2. EDS is pretty rare <200k cases per year in US. (Although elsewhere I see reported as 1/5000.) https://www.frontiersin.org/articles/10.3389/fpsyt.2021.803898/full#:~:text=Recent%20large%2Dscale%20studies%20have,found%20in%20patients%20with%20EDS
3. I am generational challenged. Every time I see 'cis' I have to look it up and I am never quite sure how the trans prefix works. Trans(insert gender) means transitioning "from" insert gender or transitioning "to" insert gender?
A binary biological definition of "having Y" and "not having Y" seems straightforward to me. I'm not sure why it hasn't been adopted instead of often ambiguous phenotypical inquiries.
Whether one wants to claim "maleness" or "femaleness" or neither (regardless of immutable Y/not Y genotypical status seems to be a psychosocial and cultural question to be determined both by an autonomous individual and by an equally autonomous society.
To the extent that an individual wants to ostensible "prove" one's "claim" by resorting to chemical and/or surgical means aimed at changing phenotypology to me seems indistinguishable from body integrity identity disorder or xenomelia.
So there seem to be 2 classes of trans claims: those which are xenomelic and therefore per se mental illness and those which are not xenomelic and hence not per se mental illness but fall primarily into the category of egocentricity the degree of which is culturally determined.
Distinguishing between these two types of trans claimants would probably be useful in any associational investigation.
So if this is true, would you expect long-term swaddling to prevent some cases of autism?
Oh, oh. explanation 4.5 (or 5.0) Sex and flexibility and autism and... are all genetic spandrels from our self-domestication. Please read "The Goodness Paradox" by Richard Wrangham. He did identify a genetic pathway, but I can't recall what it was, and I have no idea if it is related to flexible joints. But it might be. I'll try and find that part of the book. (But it's St. Patty's day and I broke my Lentian abstention to have some corned beef, cabbage and a few Guinness! Yipee.)
Hypermobility needs better definition. Saddle joints in the thumb connection to the palm run in my family. The rest of my (our) joints seem normal, or approximately so. But if you just asked me out of context, I'd probably say "yes, I have hypermobile joints.".
Related to women having looser joints, anecdotally, it seems to me that a higher percentage of women have elbows that hyper-extend. Does anyone have any data that support or reject this?
It's interesting how persistent people can be in "X is a social contamination" narrative regarding mental stuff. Often the same people, who are against mental blank slatism in other regards, just can't let go of it here. Transgender phenomena is a great example.
You think it's spreads by peer pressure and edginess? Guess what, it's correlated with autism, a heritable condition, which specifically makes people less susceptible to peer pressure. But of course, people just start assuming that autism is social contamination as well.
Okay, here is non-mental condition highly correlated with gender dysphoria: joints hypermobility. This can't possibly be a social contamination, right? But no, of course we will have the discourse how this condition is ticktockable and thus somehow also socially spread. Would anyone even think in this direction if not the link to gender dysphoria in the first place?
Of course the real cause has to do something with genes and complex biology, but discovering something new about such things is hard and requires a lot of effort. Smugly looking down on teenagers and being annoyed by their behaviour - doesn't. And thus we have a thriving epistemic minor league here.
Does the sensory experience of a weighted blanket fall under 'proprioception'? I thought proprioception was more to do with bodily location and movement rather than sensory perception as a whole.
so I have ehlers danlos and the connections and logic in the post seem spurious at best.
Not producing a foundational structural collagen protein to spec will undoubtedly create adverse conditions body-wide, including in the brain...
It's not just EDS. I was born with pectus excavatum (known colloquially as funnel chest), a condition in which the chest cavity is caved in. Thankfully, my case is fairly mild and unlikely to cause any major health problems, but I've known people with more severe cases.
It's not a common condition. Only about 1 in 300 cis men and 1 in 1000 cis women are affected by it. However, a fairly large online survey of trans communities in Reddit found that *1 in 25* male-to-female trans people had it! I'm aware that there's very limited value in online survey results, but this still seems to be a correlation worth looking into. Maybe include a question about pectus excavatum on your next ACX survey?
More anecdotally, I've known a disproportionate number of trans people (both trans women and trans men) who had some sort of autoimmune disorder. I've also noticed that trans people seem to suffer from chronic pain - particularly joint and muscle aches - much more often than cis people. This includes people who are gender dysphoric but haven't started medicinally transitioning yet, so it can't be explained away as the result of hormone treatments or surgeries alone.
My guess is that being trans is caused by some kind of overarching issue with the structure of the body, which causes both the mental/sensory experience of gender dysphoria and a greater propensity to autoimmune disorders and muscle/joint/connective tissue problems. This wouldn't be mutually exclusive with either the Genetics or Autism hypotheses; all three of them could be true and tied together to some degree.
Anecdotally, I have a sibling who's a trans woman, and while they don't have an official EDS diagnosis, they struggled with hypermobile joints for many years prior to transitioning, to the point that it seriously impacted their quality of life (although it's manageable now after years of strength training). Was very interesting to see such a high correlation here!
They've also had other weird bodily issues, like a hip impingement from a non cancerous growth that needed to be surgically removed.
Analyzing traits of TG people is horribly handicapped by the general reluctance to acknowledge that there are very different things causing transition both within and across assigned-sex-at-birth.
On the AMAB side, you have A)n naturally effeminate people attracted to boys (Laverne Cox) and you have B) basically crossdressers taking it further than usual (Lana Wachowski). Given the enormous social costs to transitioning, it is no surprise that among people who have whatever Thing X results in crossdressing, the people who actually decide to transition are more neurodivergent. They are not exaclty FINE with losing career opportunity, alienating family, etc, but they do not place as much value on that as the ones who choose routes other than transition to deal with Thing X. And they fit in better with their new cohort, as you see this group is full of the sort of nerdy hobbies and subcultures that one would commonly ascribe to Asperger's folks back in the day.
So anything correlating with AMAB TG people is not really correlating with the TG part, it's correlating with the traits that caused them to choose transition over trying to live the normie life with a wife and picket fence and 2.5 kids and no Marxist polycules.
If you want to actually study such correlations, you need to also sweep for the people who WOULD transition under other social, economic, and technological circumstances.
There is excellent evidence out there on the link between ME/CFS and hypermobility, even if it is little publicized, eg https://doi.org/10.7861%2Fclinmed.2020-0743. I saw a similar study in 2004, although it's not online, and was mostly ignored.
This 2004 paper describes a plausible causal mechanism you neglect. Root cause is lax muscle tone. This causes both hypermobility and, through smooth muscles of the vein, low blood pressure. People adapt to the low blood pressure through overstimulation or hypersensitivity to stimulation. Being perpetually overstimulated is a marginally stable way of regulating, that can collapse into the dysregulation of ME/CFS. This also explains why the classic ME/CFS patient was perceived as having above average energy/activity levels prior to getting sick. No idea how it explains the link between hypermobility and transgenderism.
Neither ME/CFS nor Long COVID is "just fatigue". Everyone thinks it has a strong neurological basis in the autonomic system, but no serious scientist thinks you can psych your way into it, any more than you can psych your way into hypermobility. Your position to the contrary is incompatible with the biomarker evidence https://doi.org/10.1101/2022.08.09.22278592. It's also incompatible with the fact that Long COVID can be avoided by metformin treatment. It would be good if you used your platform and reputation for following evidence to help vulnerable (hypermobile) people avoid having their lives destroyed by Long COVID by taking metformin, rather than telling them it's all in their head.
I hope you never learn this the hard way. As someone who recovered from ME/CFS after 10 years, but gets the occasional relapse after an infection, I am reminded each time how utterly different fatigue is from ordinary tiredness. When my husband went through gruelling chemo, a light bulb finally went off "oh THAT's what you meant for all those years by fatigue" - nothing in his previous life experience was anything like it.
It bugs me when trans-unfriendly news sources say "what if a lot of kids presenting as trans aren't actually trans, but autistic?" I don't see why the two should be mutually exclusive, and there's good reasons for thinking the two could be correlated in a meaningful way such as having a common cause.
Implications for hormone treatment are for course a much more complex question.
My sense is (still) that (often minor/marginal/multi-causal) endocrine variation is a major cause of gender variation, and is pretty plausibly also a cause of joint hypermobility. The/a mechanism for endocrinology->gender could still be proprioceptive experience via atypical collagen, but I think that's unnecessarily complicated.
(Also I don't think you asked the necessary survey questions and it kind of doesn't matter because the sample is already underpowered, but this seems like a case where it'd be worth specifying chromosomes vs identification vs hormone profile for M/F/X, since the interaction between each is the subject of investigation.)
1) seems sensible to use as the default position until other evidence emerges. Possibly combined with how autist and trans people both seem to be hyper-aware of their bodies, which could easily exacerbate things?
When a disease is both hot on TikTok and has fuzzy diagnostic criteria, this is a recipe for weird outcomes.
Also, I'm unclear from the description if the issue is with both FtM and MtF? If it's only one direction, an underlying hormonal or genetic condition doesn't seem unlikely - if both, then social factors seem very likely?
Geezer Mother of grown Zebras posting here. Zebras are folks with EDS who have been told that when you hear hoofbeats, look for HORSES, which often delays diagnosis of a very real physical condition for 10-15 years. Which is why many younger folks go online when their local GP is clueless as to why something is clearly not right/normal. There are two different things here which aren't fully understood, which aren't necessarily paired - transgenders and EDS. First the Transgender thing. Given that one's GENDER is a social construct which is largely based on how folks who have a certain sexual role look in a particular historical era, Gender and how one manifests it seems to be pretty fluid particularly in anyone under say, age 30. Or maybe 40. Particularly those with kids who are Young Millennials and down. Gender roles do change and in different cultures there are different expectations of how one acts. A real man in the era of King Charles II wore lovelocks, high heels at court with stockings, and wrote passionate poetry to men and women with obscure references in Latin and Greek. After Beau Brummell's dark suited elegance charmed the dissolute court of the Prince Regent, the feathers of most peacocks tails were ripped out. These days, particularly in places like Texas, a lot of kids are taught by their family (often Christians who have "married up" multiple times) to rigidly conform to what their family/church/social group says is "how one should be." Kids often do this conforming/blending in with great zest in order to please all in their younger years. They have to have the right stuff, wear the right stuff. Belong to the right groups. Do the right sports. When the same kids reach puberty, they start moving outside of the bubbles their parents have carefully constructed around them and discover the world is a very different place than they were taught. Which leads to explorations of their social roles, life, the universe, and everything. Many these kids conform socially into their 20's with with The Family or In Church, but have a rich online social life which their "conservative" parents have no idea exists. Now Ehlers Danlos Syndrome (EDS or Zebras). A MEDICAL condition that's not well understood by your average GP or "local" non big city medical specialists. EDS folk often start experiencing very real bodywide chronic pain from preteen years. Sometimes they are told it's Fibro, or chronic pain syndrome, or this or that (it's not in your head but in your connective tissues) until they find a physician who is up to date. When it's not diagnosed, when they are told they need to "push through it" by a series of doctors (and kin), they will of course wander into other online communities in order to learn what's happening and importantly, how to cope when it takes 10 spoons to get through your day and you are given only 3. EDS is not just hypermobility and there are different types with the vascular EDS the worse (aortic ruptures in early adulthood). The ENTIRE body is affected. Think the gut and digestion. Some of us have the MTHFR gene that removes our ability to process the kinds of Folate that is put into bread to enrich it for "normal" people. MTHFR is associated with Autism, ADHD, OCD, and other things which certainly didn't stop my ancestors from being productive citizens, business owners, farmers, teachers, government employees, scientists, doctors, and soldiers. Some of us react different than the "norm" to medications and wake up during surgeries or dental procedures. EDS can affect VISION. Our vision can change during the day because our muscles that control the eye get lax. I've got Macular Degeneration pretty young going (like my Mom and aunts) as the macular has crappy connective tissue in there. There's more fun. EDS is often paired with POTs syndrome, Postural Orthostatic Tachycardia which is a Dysautonomia. Essentially, and I am GENERALIZING so don't jump on me, the vagus nerve is the body's command and control for our autonomic nervous system. Damage to the vagus nerve that's by a virus, or a bad illness, or an accident (a bad car wreck triggered a neighbor's sister's POTs), ANY of these can trigger a Dysautonomia. If you have, I'm guessing the "right" genetics, this activates a gene that turns "on." And BINGO. Note that Long Covid sufferers are now being diagnosed with POTs Syndrome. (As are folks with Lyme, Lupus, Epstein Barr/Mono.) The key for many who are younger is to get a real DIAGNOSIS, then figure out what to do/study so that you can work and get accommodations at work. Because of this you see more of the "work from home" and "I live online in a global community" types of folks who often literally CANNOT get out of bed to get to work. So they work from bed. In their room. And if they have STEM abilities (or good Maths teachers), they survive better than those who did Cheer and Ballet and suddenly are laid up. One last thing, GENETICS can play a role in EDS. I got started on genealogical research as to why the heck both my parent's unrelated families have EDS, POTs, Dysautonomia showing up in kids/teens these days. Of course now that GP's and specialists are getting a clue, getting a diagnosis is EASIER. Anyway, my research has hinted that EDS entered the British Colonies with my ancestors (who often fought in the Revolution) - either with British Quakers (Welsh, Midlands, Scots, Bristol) or with refugees from the Wars of the Rhine Palatinate who can over en mass in 1720, arriving in Philadelphia ("Pennsylvania Dutch") as well as numerous Southern ports. They ID'd as "German" or sometimes of "French" ancestry as Alsace Lorraine was part of the region. The two groups QUAKERS and the "GERMANS" intermarried in the USA from about 1850, instead of just marrying into their own cultures. This means a HUGE subset of the US population could have this kind of genetics which IF ACTIVATED can trigger a host of issues. A plus for Zebras is we usually dislocate rather than break limbs when we fall out of trees or are thrown off horses. And yes, Abraham Lincoln had EDS, the type that's called MARFANS.
I've been diagnosed with joint hypermobility, and I think it's similar to what you wrote about in your Geography of Madness post. Chronic pain and other sorts of issues are very much susceptible to social contagion.
Webinar by Jessica Eccles on neurodiversity and EDS, which also touches on gender: https://www.ehlers-danlos.org/information/webinar-hypermobility-and-neurodiversity/
55min, very pleasant listening.
I'm reminded of work finding links between finger length ratio and sexual orientation. The notion is that a common developmental event that influences both bone and the brain explains the phenomenon. Speculations include the presence of androgen and estrogen receptors in bone; and maternal immunity to male-ness, since a correlation with the number of biological older brothers was found in gay men. In any case, if the relationship between gender identity and EDS holds up, this would be another clue that some common developmental event links bone & joint development to psychosexuality.
Wonder if it's EDS messing with the brain and nervous system so extensively that it causes symptoms that resemble these other conditions, and neuroscientists just haven't been able to differentiate the two. Gender dysphoria and autism are both functional neurologic conditions, and I hear a lot of stories of EDS patients with similar functional neurologic issues and issues with their central nervous system. For instance, can certain forms of EDS cause problems with hormone receptors in the brain, abnormal endocrine or neuro-endocrine functioning, or structural/functional problems with the brain's body map [xenomelia]? All of these problems are proposed mechanisms for the development of gender dysphoria. Would be interesting to know whether collagen mutations can affect these systems.
> EDS diagnosis in our patient population is 132 times the highest reported prevalence in the general population
> Ehlers-Danlos: 0.36% cis vs. 0.37% trans
It seems weird for no one to comment on the fact that the correlations noted by Najafian et al and Jones et al appear quite muted in the ACX data, so I do so hereby comment.
EDS (along with CFS/ME, which got insulted instead of just ignored) is coming into focus now... it's probably historically been massively under-diagnosed. I don't know why it would be more prevalent in trans people but I wanted to thank you for actually putting thought into this instead of just reading "instagrammable" and "special snowflakes" and dismissing the entire thing. EDS and CFS are both real illnesses with actual biomarkers, they are just hard to diagnose or treat and the attitude of the medical establishment (though it seems to be getting better now - long covid actually kind of helped) has historically been extremely dismissive. But it's also helpful to acknowledge that these things exist on a spectrum and just as you can have hypermobility without having EDS, and fatigue without CFS, you can also have EDS or CFS at different severities. People who might have had a milder form of EDS in years past would probably not have known about it, because the awareness just wasn't there and it wasn't as completely imperative to their lives, to get a diagnosis.