I am well aware of that,
@Learningandlistening. I am not unfamiliar with the status of things. As you have probably read here, I have rubbed shoulders with bendy physicians all my career.
I did not say that no one in the medical community accepts the concept of hEDS. There is a thriving hEDS industry led by thousands of hack physicians wanting to make a buck - as you point out. But there remains a majority who keep their distance who can see this is just a gimmick diagnosis (the politics of this in my own department has been discussed here).
But I admit that there is an important historical background to this, again, aired here. The USA scientific medicine that was the envy of the world in the 1980s has collapsed intellectually. Bright kids no longer see medicine as their Everest, unlike Alec Isaacs, who discovered interferon and Edelman and Porter who sequenced antibodies in the 1960/70s. The consensus of scientifically minded physicians has shrunk even over here. All I see on Twitter from North America is people chasing fashions built on misconceptions we understood as students.
If you want to do the socio-politics that might be more fertile ground. (My first degree is in History of Art and I did a Philosophy MA course later so I know a bit about humanities essays but I never got into politics.)
Sorry, you've sucked me back in, since your responses (as most of the responses here) are thoughtful and helpful. I'd like to suggest that there's something going on with LC that is not dissimilar from another condition I'm far more familiar with, namely gluten sensitivity.
Forgive me for repeating history you may already be familiar with, but: We've got a small but significant subpopulation who exhibit a suite of related but pretty common symptoms, sometimes mild, sometimes severe. No one knows what's causing them, so they get dismissed or psychologized. Then you have the discovery of celiac disease. Those who have symptoms like the ones experienced by those who have celiac disease believe they may have something like celiac as well!
A new entity emerges: non-celiac gluten sensitivity. This is a much, MUCH broader entity, with no good way to diagnose it other than symptoms and self-report. People do all the studies they can. It looks like there might be a subpopulation of those who don't have celiac but still react to gluten. A much larger set of the people who think they have NCGS simply don't. What do they have? It's hard to say, but likely a subset are experiencing physiological symptoms, occasionally severe ones, that are the product of lifestyle, stress, and other "BPS" type factors.
In my opinion, the diagnostic category of LC is somewhat like gluten sensitivity as a diagnostic category. A minority have something like celiac disease, the symptoms of which have a specific biological etiology. Another minority may have something else that's like celiac disease, but not quite the same thing. And then, because the diagnostic categories are capacious, there's a bunch of other people who have "gluten sensitivity" but in fact their symptoms are due to any number of other factors. Not only that, but some of those people respond well to BPS interventions because the etiology of their condition can be treated with BPS interventions.
Those people — in the case of LC dxs, let's say 30-40%? who knows — should in fact be approached with something like exposure therapy and responsible gradual exercise, and "brain retraining" of whatever kind they seem to get benefit from. More importantly: If they are allowed/encouraged to believe that in fact they have what the other folks have (the "celiac" subset), they are likely to get worse, and suffer harm, because they will do things like try a bunch of therapeutics, or avoid physical activity needlessly, or become distressed that they will never recover from a condition they don't actually have.
How can we sort that 30-40% (or whatever the number is) from the rest? It's very, very hard right now, because even entertaining something like this hypothesis about LC — which I think is a reasonable one? open to pushback of course — is, as I say in my article, taboo! In addition, many people with the LC version of celiac (yet to be discovered) are furious at being dismissed or told they have something else. Many of them make it a top priority that anyone who identifies as having LC is not questioned. And...here we are.
