I experience this symptom too, very much as others have described. I can sustain it for several days, and if the amount of sleep is just right...
Do we even know whether hypermobility with subluxations/dislocations is a single condition? Or indeed, whether it's a condition we're born with,...
Thankfully long gone now! I was lucky enough to have the early menopause that some women with ME seem to experience, so my endometriosis symptoms...
'No further impact on functioning' is a strange finding. I'm from an extended family where most of the women had/have endometriosis, and most...
Lovely story, though it's a shame she had to do it that way. But it's still a pilgrimage, and she obviously got a lot out of it, so hey...you do...
Feels as if we need to get the students of that august institution on our side. There must be someone whose partner or close family member is...
Very interesting discussion! I also feel concerned about the level of hype over early-stage research, but I wonder if publishing now is a...
What I took from this part of the interview is that Ron Davis is trying to respond to what patients are telling him – some ME patients have...
Interesting – it's probably not that uncommon, especially after growth spurts, but we just stayed like that The men in the family don't seem to be...
I've just visited the web form page, but at the moment my brain can only produce the answers 'Money' and 'Diagnostic Test' to the questions....
My experience of OI, just for fun: nearly all the women in my maternal family were 'fainters' from an early age, though only two developed ME....
This letter about patient-centred health research was published in The Lancet yesterday. Might there be useful points that could be raised with...
Forgive me if this isn't part of the NIH's remit (I'm from the UK), but are there training/development opportunities here too? For instance,...
Ensure that null results are published?
Drifting off-topic, but I wonder whether this type of EDS can sometimes occur as a developmental disorder that requires at least two factors:...
A friend was diagnosed with cancer some years ago (thankfully recovered now). Her GP immediately said that she should let her employer know she...
It sounds a bit like a coursework module to me, whose aim is more for the benefit of students than it is patients. I don't agree that studies make...
Thanks for this – I can't read any posts at all on Facebook. It seems to have developed digital ME lately, and it's having one of its 'No posts to...
Fightback4Justice certainly know the relevant caselaw very well, they have legally qualified advocates and an excellent success rate at appeals...
I agree with a great deal of what's been said here, and want to second my thanks for raising it. I'm not really sure how to move it forward,...
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