If people who only met your description for a few years can be included, I'm one of them. I've spent around 12 – 13 years of my illness at this...
Might be worth submitting it to the Co-Cure list? I suspect the recipients of the daily digests are mainly patients, but some of them may have...
I think I know what you mean, but actually general practitioners do understand some of the social factors and would love to be able to mitigate...
I don't know. But it's not hard to envision a mindset that starts with deeply prejudiced assumptions (these people need to pull themselves...
Absolutely, that's why it needs renaming and possibly reframing. But it's a thing, and acknowledgement of it would be useful—albeit perhaps only...
Behaviourally, they will all engage in sacrifice and some will engage in time theft. By sacrifice, I mean giving up some things (including...
Most will report particular difficulty sleeping in PEM. A smaller proportion will have a shifted sleep schedule (whether or not they're pacing...
Some difficulties around digestion or eating that they didn't used to have. It may be quite vague (e.g. just feeling more crap than usual after...
None of them will be doing less than they're capable of.
Also disastrous crashes, resulting from accidental ingestion of small amounts of topical steroids. My sudden relapses from able-to-work to...
It's hard to say, except that I get a sinking feeling about anything that starts with a mission statement. I don't know the first thing about...
But if you get $200 million a year, you also need $200 million a year's-worth of ideas. Otherwise you can't spend it, and spend it you must....
Interesting. I either hadn't heard about it, or forgot about it in the face of the never-ending tide of crap that's been swamping us all. At...
I don't know how common fluid management issues are in ME. It doesn't seem to be discussed much, so maybe it's something only a minority...
Yes, and it's part of the problem reporters have. Stories about harm are as anecdotal as those of improvement, and (unless there's a well founded...
I'd find it hopeless too, but for a different reason: the answer's the same whatever sort of day it is. If upright means standing up, I can't do...
I don't think it will. But nor will it do them much harm. Operations like Parker's can always find people with a platform who're willing to shill...
Thanks for that—it does look interesting.
Forgot to say that if you want cooling mats for beds, the type sold for large dog breeds are often cheaper and bigger than the human sort.
I find the ordinary sort work okay, specially as cotton holds cool wetness very well. I've got some old bar towels that I dip in a bowl of iced...
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