@Michiel Tack No, hEDS doesn’t propose hypermobility as an explanation for anything (except, like, pain and subluxation). Read some papers that I...
Thread here https://www.s4me.info/threads/we-should-have-a-rule-against-bullying-via-suggesting-other-patients’-diagnoses-are-invalid.10495/
And then we start from scratch the next day, or week, or month.
Usually a forum has anti-bullying rules, and saying a diagnosis is invalid (when it’s a diagnosis that patients find useful and not off putting)...
Well, except rheumatologists who for some reason decide to use Beighton criteria alone. Not an actual specialist, mind you, or they’d know that...
indeed, ME research could learn a lot from stratification strategies of EDS research.
Are you sure about that? How would you feel if you went to an Ehlers Danlos (EDS) board and they were saying that ME was a vague, unaccountable...
I think it’s possible to be nuanced enough to criticize wastebasket usages and vexatious diagnoses without having to allow insults to diagnoses...
Too much information for me to look at right now but perhaps the 25% ME Group has something. https://25megroup.org/factsheets-and-leaflets Or...
Would this help? NYS page on ME talking about accommodations including wheelchairs? https://www.health.ny.gov/diseases/conditions/me-cfs/...
I like to have an idea of something before I ask my doctor, too, so I don’t ask unnecessary questions and so I know if they’re saying something...
Hi how are you doing now? Was the hematologist any help? Sorry I wasn’t more helpful before; I just don’t know anything I haven’t already posted...
There’s other things that can be done in the U.S., though. I have only ever seen Salvation Army collect outside of shops without selling...
Additionally, many autistic people don't see their autism as a disease. If they have GI problems, they want medical treatment for that. But their...
I have been saying this everywhere for, idk, years. Good others are, too. More voices means more chances they listen.
Pretty sure if people post here to trash other diagnoses (as happens regularly on a variety of threads), the others won't want to work with us...
If I figure that out, I will post about it. =D I have a worn out earbud with 4 sizes of silicon ear pieces (most come with three) and the...
In my memory, he used to support ME as being a “real” and important disease but refused to believe that exercise could be not a good...
I have wanted to try this, but I am concerned the headphones would grip my head, causing pain (normal headphones do). So I have waited until it...
Yes, not every person can do every therapy, and it would always have to be modified based on severity and possibly comorbidities. That being...
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