yes, some EDS doctors think that people who were flexible when young, but not flexible as adults, yet still have other signs and symptoms of EDS, probably have EDS. However new guidelines have not been written so that diagnosis cannot be officially made as of yet, in such patients. Some seem to have loose joints but tight tendons.
They might be waiting for more genes, but I'm told it's difficult to get research money because the forms of EDS not yet linked to genes are too difficult to diagnose (too many symptoms, so it seems too nebuous to funding committee), or something like that (I don't recall exactly). Like in ME/CFS, most EDS patients are undiagnosed. Most doctors simply have no idea how to recognize the condition.
I'm also told that if one has a hereditary connective tissue disease like EDS, it's then easier to get an acquired connective tissue disease (perhaps including ME?)
I wonder what is the relationship to having hypermobile joints and developing a post traumatic injury fibromyalgia? I've had ME for over 25 years but only developed FM after a serious accident. The rheumatologist I saw mentioned that my joints were hypermobile. Before ME I'd always noticed how flexible I was so that was not surprising.
This may be controversial here, but some EDS docs think that the kind of fibro which cannot be cured by changing one's diet, treating candida, etc. (which would all be something else), is EDS (thus, fibro = misdiagnsed EDS, in this model).
EDS, as far as I can gather, expects a next-day exercise exacerbation of joint pain (supposedly if the joints were not properly supported during exercise--they say swimming, for example, should be ok, but walking would not). Since this is an immune reaction, I wonder if malaise would be expected as well. However I don't hear of cardiopulmonary problems being expected.