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PaperclipPerfector  2d ago (text post)   12344 thread views

Culture War Roundup for the week of December 2, 2024

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I'll note that the euthanized woman was described as having Ehlers Danlos. Anyone that has casually explored "SickTok" in the past few years will have surely heard of this condition. While I'm sure it's a real disease in some cases, there is undeniably a trend among young women sharing this concept with each other. I actually first encountered this disease when exploring the twitter of a porn model (so sue me) at least a dozen or more years ago. It struck me at the time as an obviously invented attention-seeking condition that allowed her to post hospital selfies every few weeks and be continually weak and bedridden with no obvious externally visible symptoms.

Ehlers-Danlos syndrome is absolutely real, and monogenic in many cases which provides a clear, objective diagnosis. Then there is a bucket of patients with hypermobile joints, issues with their digestive tract and random pain/other things. That being said, seeing someone flex their pinky backwards past 90 degrees, or their thumb way down to their wrist is profoundly disconcerting and also somewhat objective.

Something to keep in mind with EDS is that their are a number of subtypes, and "surprisingly" the one we see in these types is the one with least ability to be objectively assessed.

You’ll forgive my skepticism if I say that this sounds like a fully generic set of symptoms for a disease spread by social contagion rather than by actually existing.

Official government webpage https://www.nhs.uk/conditions/ehlers-danlos-syndromes/

If you see someone on tiktok who never shows you concrete evidence of any of the symptoms above and claims to have EDS, be skeptical and say social contagion.

If I can show you that loss-of-function mutations in collagen or collagen-related genes lead to a syndrome characterized by defects in collagen (i.e. joint hypermobility, esophageal issues, frequent dislocations, weaker blood vessels and organ tearing) with a very high penetrance and that tracks in families, if I can compare mutant and wild-type forms of those proteins in in vitro functional assays and show a difference, if I can either knock those genes out or induce the same mutations in various animal models and show the same syndrome and you're still skeptical of the existence of EDS I'd say you're an [expletive redacted].

If I can't show you a genetic mutation for a subset of patients that still have many of the symptoms above, well, sure, some people may be lying. But...you understand this is true of many diseases, right? Like, do you not believe in lupus? Clinical depression? Rheumatoid arthritis? Many (possibly the majority, or all) diseases have extreme monogenic forms and milder polygenic (we assume) forms. Similar to Alzheimer's patients with mutations in PSEN, APP, etc. who get an aggressive, familial form of the disease in their 30s versus most Alzheimer's patients who show up ~60-75.

Except you haven’t shown me any of these things. I’m prepared to take your word for there being a gene mutation which causes those symptoms, in this specific instance going by the name EDS. But ‘some attention-whoring women with poor mental health claiming the disease exists because of a set of symptoms nearly all attention whoring women with poor mental health exhibit’ was the evidence presented, and it is indeed a valid criticism that that’s the same thing as transgenderism, anorexia, non-celiac gluten intolerance, etc.

How exactly do you pick up joint hypermobility via social contagion? I'm willing to believe your argument (and I'm sure there are other mysterious syndromes which are actually just social contagion) but in this case there's an actual physiological difference that seems beyond the ability of the human body to fake. Joints normally can't bend that way and I don't think reading a bunch of tumblr posts can really change that.

non-celiac gluten intolerance,

I mean, this does exist. I'm non-celiac but I can't consume gluten.

Except you haven’t shown me any of these things.

Do you want papers?

I can't and am not trying to tell you that everyone on SickTok is sick. All I'm saying is that EDS is almost certainly a real disease, and not even as ambiguous a diagnosis as some other things that are less controversial.

You should see my skin, i can do pretty good Dilophosaurus impression.

Both me and my mother have Ehler-Danlos but only I have had any (non-cosmetic)issues. Those have thankfully been pretty minor and have responded well to medication.

We used to have our more clinically-focused research meeting Monday mornings. Everyone would rotate through every few months, and people seemed to think the best way to show off the importance of their research was to present graphic images of their patients suffering. One doctor studied some immunodeficient patients, and insisted on showing this one woman's vagina exploding with genital herpes Every. Goddamn. Time.

The EDS guy always showed his patients bending their thumb down to touch their forearm, which was disquieting in it's own way.

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