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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...

Hope it passes the test—I couldn't have done it today! It's really chilly here, I had to put the heating on for a while earlier. I came back shivering just from putting the wheelie bin away.

:D It sounds like bottled NLP.

Ahhh...election just been called for July. That might affect the migration.

I'm still inclined to ignore the green paper as a desperate attempt to look good to a certain constituency of voters, but pwME who still receive income-related ESA probably do need to be prepared for the migration process to UC starting four years earlier than planned. It's been put in train...

My impression is that the field is at such an early stage of development it's hard to know what any of the results mean. Doesn't mean it's not a promising avenue, just that researchers probably still have a lot to learn about how to manage and interpret the vast mass of data it produces.

I'm inclined to agree, but only because of the level of expertise among clinicians. If the knowledge base was where it should be, cases of mild ME or ME in remission would be recognisable, at least over the course of a number of consultations. I've been in that place more than once, but I was...

On an initial skim-through through it looks okay, though I haven't read it in detail. The first sentence is somewhat problematic (@Trish, hit the off button now!) but the rest is better. Big thanks to Russell for the transcript, it must have been a lot of work.

This. The questionnaire shows zero understanding that our ability to do all activities is completely conditional on (a) how many others we've done or still need to do, (b) how essential it is that day, and (c) what happened yesterday, and the day before, and the day before that. The only...

Anything that needs rhythm (walking, playing music), balance (walking, moving from standing to sitting), spatial relationships (going through a doorway), and grip force calculation (picking up a plate) will show that I'm off. Also having to make up nouns and adjectives because the real ones...

For anyone who needs cool drinks in warm weather and can't keep visiting the fridge, I recommend these ice packs. Earlier on I'd been out in the hot sun for more than four hours, but I was still drinking ice-cold water. I've just taken the second bottle out of my rucksack (more than 10 hours...

I've tried it, but there doesn't seem to be a relationship between heart rate and PEM. I kept careful records for a good few weeks, but found I can incur PEM without raising my heart rate much, and swim at 90% of the notional maximum heart rate for my age without incurring it. The type and the...

I knew about it, but as I don't (and won't) have an X account, I couldn't follow it.

If they wanted to recruit people who'd recently been treated by a clinic, it might produce a group that can give insightful feedback on the current setup, but is short on experience of long term ME management and knowledge of current and historic research issues.