I'm very severe, and I find it extremely easy to overdo things. Exertion intolerance (which for me is legs feelings so heavy that it feels like...
@siobhanfirestone With any recovery stories, it's useful for me when they include details of how long they were sick, how severe they became...
[MEDIA] "#MECFS24 Brayden Yellman MD. ME/CFS comorbidities. hEDS. MCAS. Relationship between these and others. Small fiber polyneuropathy. GI...
Oh me too, on each count! I tried high dose fexofenadine first, then added montelukast, then tried loratadine and phenergen instead, and nothing...
Isn't that a bit backwards? I thought that physicians who are sceptical about those conditions or the idea that they occur in a cluster would tend...
Does anyone else experience symptoms only at the point of falling asleep, which may indicate something about what is causing the sleep disturbance...
It doesn't seem to be used outside of Russia and other post-Soviet states, but within Russia, emoxypine is touted as increasing cerebral blood...
Oh!! I experienced the same thing when I was first becoming bedbound, for about 3 months (until I stopped sitting up or getting out of bed even to...
From my time in hospital (a major hospital in a major Australian city), there were no hoists with the capacity to weigh a patient, and the hoists...
NIH is starting a trial of nasal spray vaccine for Covid.
This kind of reminds me of the way journalists and aerosol scientists exposed the WHO's dogmatic adherence to the line "Covid can't be airborne,...
@DMissa - do you have a sense of when participants might be contacted for collection? :)
In terms of generating project ideas, I believe @Hutan was putting together a tag or collection of research ideas that deserve following up or...
Similarly, I used a urinal bottle for a couple of years and can testify that, in PEM, the quantity of my output jumps massively (we're talking...
Is there a concern that if family members of ME participants are included as healthy volunteers, there may be some confounding factors? I'm just...
I'm not totally sure how to ask this in a sensible way, but is there any reason to think that the disease process / biomarkers may be somewhat...
Oh, has something been published on this (aside from patient self-reports)? My experiences led me to think that it was the muscular strain of...
When I was hospitalised for ME 2 years ago, there was a big fuss made over an apparent POTS and ME specialist, a big-time professor who just...
Interesting! Did your dysautonomia persist throughout being severe? I found once I was hospitalised and given liquid nutrition and bedpans, the...
Before I became fully bedbound, my PEM was more typical, for maybe about 10 years - flu-ish feeling, like I was running a fever but with a normal...
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