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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 stage, over separate periods. At the time I felt recovered. I worked full time and could exercise regularly; at various points I did distance swimming...

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 contacts with researchers and it may reach folk who're not members here. Info can be sent to: CO-CURE@listserv.nodak.edu

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 them. But they can't get people out of cold, pest-riddled homes covered in black mould, they can't give parents enough money to feed their kids and...

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 together) and arrives at a course of standardised psychological therapy (we'll give them a formula for pulling themselves together) as a solution. And if...

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 in peer support and genuinely sympathetic settings where recently diagnosed people receive help with ME management. I remember how relieved I was to...

Behaviourally, they will all engage in sacrifice and some will engage in time theft. By sacrifice, I mean giving up some things (including important ones like hygiene and good diet) in order to enable others, especially work, study, and childcare. By time theft, I mean telling others that...

Most will report particular difficulty sleeping in PEM. A smaller proportion will have a shifted sleep schedule (whether or not they're pacing well), that they find difficult to readjust. It could be fully reversed day/night, a switch to sleeping early hours to late morning, or they may need an...

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 a meal), or specific (e.g. a food intolerance that causes IBS).

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 in-need-of-care were caused by them. The relapses persisted for months because I was assured these meds couldn't cause a response like that, so I carried on...

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 science, to be honest. I know about ideas, though. I know that if you want a writer to make the best work they can, you don't start by offering them a...

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. Money helps, but it won't produce results on its own. Guaranteed money can mean it's not in anyone's interest to be too successful. If you want to make...

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 least anyone wanting to respond can hopefully invent some technical difficulties. :emoji_fingers_crossed: Knowing the state of some of its online...

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 experience. In PEM my fluid intake goes up a lot, and in the catastrophic crashes I had before I was diagnosed, it was bizarre. I needed 10 to 12 litres of...

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 suspicion of vested interests) it's difficult for a neutral voice to accept one set of testimonies whilst denying another. Luckily common sense and...

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 it any longer on a good day than a bad one. If it means sitting up, I do it every day anyway. I can't imagine having to lie down on a bad...

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 for them, and it distorts perceptions of the weight of evidence in their favour. A few silver-tongued grifters, glossy-haired media types and hopeful...

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 water from the fridge, wring out a bit, and place around my neck or drape over my head. They do drip, though! But it's partly the sensation of my skin...