I appreciate that you aren't saying this, but others are, so it's not a straw man per se.
I am glad you clarified your position, because from your newsletter I definitely got the impression that what you were saying was that there was no ME/CFS as a distinct condition at all, just a bunch of misdiagnosed conditions being diagnosed as ME/CFS. You didn't directly say this, but I understood it to be the logical implication of what you explained. My sister undersood it the same way.
Unfortunately, regarding age and onset patterns, Jen is correct. My doctor told me that EDS can suddenly worsen after a virus, car accident, or so forth.
On the other hand, I have both and they seem clearly different to me. They don't seem like the same disease at all. They have different stuff that makes them better or worse. The only part where it gets confusing is where there is some symptom overlap (such as dysautonomia and ill-defined GI issues/IBS).
However, there's enough that
doesn't overlap that it doesn't seem confusing at all to me, that they seem to me to be two different, unrelated diseases that I have the misfortune to have both. I have a lot of family that has EDS-y stuff and hardly any of them are ME-type ill.
However because of reading posts here and elsewhere, I keep an open mind that I could be wrong and maybe they're more related than I think. I am just n=1. Or n=(some other small number) if we count my family.
I appreciate that you feel overstretched, but I can't follow tons of different places and I suppose that others are like me. Maybe if you could post a specific link to a Medium post instead of citing an entire website or three?
As interesting as it is, it doesn't matter how much the symptoms appear similar to some other disease. This is a phenomenon that exists throughout medicine. Lupus looks like every other disease known as well, just as an example. Lupus and Lyme disease are both called "the great imitator."
It's needful to look for what is unique and different, in order to diagnose stuff. That's one of the major problems with "fatigue:" it is not distinguishing. One needs to seek out the things that are distinguishing.
You're talking about 50% of severly ill patients here, not 50% of all patients. I think it's important to be precise. We already suspect that more severely ill people have more comorbidities, for example
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1890280/
(we can probably safely assume that some of the fibromyalgia diagnoses should be instead diagnosed with some kind of EDS, possibly hEDS)
I
You probably are aware of this, but after months of talking about Nightengales and CII and so on, a poll done by you is going to be highly skewed to people who think that these diseases have some kind of unique relevance to each other (morso than other comorbidities or other diseases that share symptoms).
I agree that it's good to have neglected diseases working together, but I think it's really premature to say that there's some logical grouping of some particular set of diseases.
Yes, I think it's great and needed to look into whether collagen disorders are related to ME, especially as there seem to be some findings that this could be important, or there could be a subset for whom this is relevant.
But of course it still could be something else. An autoimmune disease (more relvance to Lupus), a channelopathy (more relevance to myasthenia gravis). Or maybe it's most closely related to multiple sclerosis, or to mitochondrial or glycogen storage diseases.
At this point,
most any option is valid. (Obviously not the hypochondriac/ deconditioning stuff, but just about anything else.)
If you haven't accounted for skin changes and muscle fatiguability, then you aren't able to say you can't differentiate EDS and ME.
sorry for the huge text; I didn't want this bit lost at the end of a long post.