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I don't know if this resonates for other people, but I think my tinnitus is tiny muscles in my ear shaking rapidly back and forth, or spasming. If I'm wearing ear plugs, I can feel the pressure behind it rise and fall rapidly, or a sensation like my ear is sucking on the ear plug rhythmically. I...

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 they're pulling painfully on my hips even though I'm laying flat; arms burning and muscles shaking; breathlessness and a crushing sensation on my chest...

@siobhanfirestone With any recovery stories, it's useful for me when they include details of how long they were sick, how severe they became (examples of things they could or couldn't do on a "normal" day), what symptoms they experienced when they overdid things at those levels, how they...

"#MECFS24 Brayden Yellman MD. ME/CFS comorbidities. hEDS. MCAS. Relationship between these and others. Small fiber polyneuropathy. GI dysmotility. CCI and AAI. Tethered cord. Venous congestion syndromes. Intercranial hypertension. Amazing talk." They're still talking about CCI and AAI? Wild.

Oh me too, on each count! I tried high dose fexofenadine first, then added montelukast, then tried loratadine and phenergen instead, and nothing made it budge. Until I became very severe, there was no visible rash either, and now it only sometimes happens - lots of little red dots or red puffy...

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 to also discount ME/CFS as psychogenic/functional (and would actually lump it in with all those other conditions). Also this paper seems to run...

Does anyone else experience symptoms only at the point of falling asleep, which may indicate something about what is causing the sleep disturbance in ME/CFS? When I first became bedbound, it was at the point of falling asleep where temperature dysregulation (extreme overheating to the point I...

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 flow, treating endothelial dysfunction of some type, reducing oxidative stress, increasing ATP, among other things. I have no stake in those particular...

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 toilet). And since then I've had constant (except for a window of a few weeks once) shaking of some muscle group for 2.5 years. When it's "mild" it's...

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 they did have would put you in an upright seated position with your head unsupported. So I always declined both being weighed (they would have hoisted...

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, everyone knows that viral particles bigger than 5 microns can only be carried in droplets" and traced the source back to a single document from the CDC...

@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 expansion? (Sorry if I've misremembered who that was! Not having a lot of luck searching the tags) The episode with Sarah Tyson was pretty upsetting -...

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 from 500mL to 1500mL per go). The urge also comes on very strongly and quickly, and I feel constant dehydration symptoms (dry mouth, pounding headache)...

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 thinking of the families where multiple members are hit with ME after a virus passes through the family, and also of the possibility that some people...

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 different between milder and more severe forms of ME? As in, it's not that it's straightforwardly "this molecule is causing problems, and the severity of...

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 supporting my own head even partially that caused issues raising the head of my hospital bed - the impact wasn't usually instantaneous OI symptoms but...

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 happened to be doing a rare round in the hospital. When I finally saw him, he claimed that POTS is caused by excessively stretchy blood vessels, which are...

Interesting! Did your dysautonomia persist throughout being severe? I found once I was hospitalised and given liquid nutrition and bedpans, the heart rate and blood pressure stuff settled after about a month (so it had been about 3 months of extreme dysautonomia). Everything was stable until I...