A Collection of Chronic Medical Conditions Common in Autistic and ADHD Adults [pdf] (2023)

https://pmc.ncbi.nlm.nih.gov/articles/PMC9143438/

Ehlers-Danlos syndrome is severely over-diagnosed right now by providers who are unqualified to diagnose it, a few charlatans who sell incorrect diagnoses as a specialty to serve a demand, and scores of TikTokers who think they understand better than the specialists.

> and this one simple fact is sufficient to explain a the prevalence of a whole zoo of seemingly unrelated conditions.

This is precisely why it's being over-diagnosed: The internet culture definition of Ehlers-Danlos has become the latest catch-all to explain a host of unrelated symptoms. Patients who are frustrated with a lack of answers stumble upon Facebook groups, Reddit posts, TikTok videos, YouTube talking heads, or other social media outlets where non-medical people explain that Ehlers-Danlos can explain almost any vague symptom you have.

This has become a big problem for Ehlers-Danlos specialists because it's getting hard to identify the correct referrals from all of the self-diagnosed patients demanding referrals from their doctors.

> There is an incentive to keep hEDS as a 'rare' disease as the US has extra grants for disease in this classification and this has put pressure on diagnostic criteria which was made more strict so fewer people would be diagnosed with it.

Sorry, there is no conspiracy to withhold diagnoses from people. Doctors aren't getting together and conspiring to stop patients from getting the right diagnosis so they can collect more grants.

This conspiracy doesn't even make sense. Doctors and researchers do not financially benefit from keeping diagnoses down. If they wanted more funding, they would be working hard to get more people diagnosed. More people getting diagnosed means more money flowing in from insurance companies and it becomes a higher priority for grants. Not the other way around!

> * The progression of prevalence of hEDS over the years has gone from 1/50K, 1/15k, 1/5k, to 1/500 which is insane.

Even the Ehlers-Danlos society, which leans toward the more generous diagnostic criteria, does not claim that hEDS is 1 in 500 [https://www.ehlers-danlos.com/what-is-eds/]

There are some populations where you can find higher incidence, but 1 in 500 is not true at all.

The document mixes science with pseudoscience. It was put together by someone who subscribes to the current social media trends that blend together real diagnoses in a way that have been distorted and stretched to become generic catch-all explanations for vague conditions

This mess where conditions like MCAS, hEDS, POTS, and ADHD are all swirled together into a cluster of co-diagnoses is becoming a huge problem on social media. Even the individual groups for these conditions are become sick of the trend of pushing them all as co-diagnosis. One example from the ME/CFS forums sampling the frustration with how people incorrectly self-diagnosing with all of these conditions as a cluster is becoming a problem for each individual condition: https://www.s4me.info/threads/problems-arising-for-pwme-from...

This should be flagged away as it's both misinformation and a document serving as a lead gen for their training services based on misinformation (see the link at the bottom of the document)

This is not a scientific contribution. It's basically a pamphlet for a group of people selling "neurodiversity trainings" for organizations.

Ever notice how some people don't get 'stuck' in their negative habits and brain loops? Like they can just let them go. If they get feedback from the world they can take it seriously and act on it, instead of digging in their heels and getting resentful. Being able to do this reliably and under stress in the wide variety of life circumstances, and getting closer and closer to doing it in real-time, is the goal.