[haldujai]

> I think a large number of those with undiagnosed conditions actually exhibit conditions from the hEDS bucket of comorbidities which is especially vast and varied. See https://ohtwist.com/about-eds/comorbidities for an incomplete list. This bucket does include SIBO. So if you have been told by a doctor that you're a hypochondriac and you exhibit SIBO these do increase the probability of you having hEDS.

Not really. SIBO prevalence increases with age and goes up to 80% in elderly patients.

hEDS prevalence is between 0.005% and 0.02%.

The symptoms/diseases you listed are very common. We don’t really use hypochondriac anymore but the reason these are common is because they’re vague constitutional symptoms that have 1000 different possible causes or nothing at all.

> What is very unorthodox about about my view is that this flexibility is not an essential component so a lack of flexibility is not sufficient to rule it out even if it does reduce the likelihood.

There is nothing unorthodox about this, it’s part of the 2017 international criteria for hEDS.

https://www.ehlers-danlos.com/wp-content/uploads/2022/03/Mal...

[cjbgkagh]

Well if the actual hEDS prevalence is a lot higher than that then it would upset a lot of your other numbers.

The presumed prevalence of hEDS used to be 1/50K, then 1/15K, then 1/5K (you are here) and now more recent research has it 1/500 (post 2019). So I don’t take much stock in presumed prevalence given the history of it. What are the odds that they got it wrong all those other times yet completely right this time.

The problem with first presuming this prevalence and then designing diagnostics around it is that of course the measured prevalence using these diagnostics will match the prior assumptions.

I’m of the view that it’s ~1/50 (2%) depending on ethnicity and that >90% of these are rather mild and very difficult to detect yet still show up as comorbidities. I currently don’t have the evidence I would like for this theory, I do have enough for my own beliefs. Until I get my hands on enough relevant WGSs I will not have definitive proof.

[haldujai]

I’m not sure what you mean by designing diagnostics around an assumed prevalence. The 2017 criteria is pretty broad and I’m not sure how this was influence by assumed prevalence.

Is there a reason you suspect a connective tissue disorder to be the unifying diagnosis? I have not heard this theory before.