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Yep. Also completely unethical to describe CBT as treatment for ME/CFS, for that matter.

It is interesting, but I wonder if long summer breaks in schools and universities have something to do with the reduced number of referrals? Young people are less likely to struggle with attendance if they're either already on summer break, or there are more gaps in their normal timetable...

Yes, I think so. To me, the overarching impression is that it's something that shouldn't be there, and that's why 'poisoned' seems to describe it. You know how when you're exposed to fumes, or you eat something bad, instinctively you want to get it out of your system? I drink lots of water...

I don't think it's necessarily linked to alcohol at all, so it may need a separate discussion. It's a feature of PEM for some people, and severe or long-term crashes in others. I've only had it in my worst periods of illness [edit: it persisted for months and was never a consequence of alcohol]...

The self-resolving nature doesn't seem to be covered nearly well enough in discussions like this. It's one of the areas doctors could talk about with real confidence, instead of theories about clots. About how some infections can involve an extended recovery period in some cases. About how...

I once had a long discussion about this with someone who got ill a bit later in life than I did, and he said the closest thing from his preME/CFS life was a hangover. He played in a rugby team in his teens and early 20s, and he'd had plenty of them after winning important matches. It's a strong...

It might also explain why I flush with even small amounts of alcohol. The sensation of heat isn't as severe as that I got during menopause, but the areas of skin that go a deep scarlet and feel hot to touch are the same. It's been pretty much a lifelong thing for me, though.

I find it hard to answer, partly because different infections come with different patterns, and partly because it tends to change during the course anyway. Often with a run-of-the-mill cold, I feel quite energetic and have trouble sleeping the first night or two, then as it progresses I sleep...

I start feeling ill within minutes of starting to drink alcohol. Nausea, headache, dizziness, heavy fatigue, generally snappy and feeling dreadful. I also get burning muscles, very like that of ME/CFS muscles that have been worked in the previous day or two. The type of drink's irrelevant. It's...

I just meant it's fairly common in conditions like migraine, 'flu, hangovers, etc. The level of sensitivity will vary, but most adults can probably remember a time when they wanted to draw the curtains against bright sunlight, or found noise from a construction site made them feel more ill even...

Do you think continuing to explore some of the symptoms that aren't typical of acute illness could be useful? What struck me about discussions of the drive to lie or sit down, the alcohol intolerance, the burning muscles, the poisoned feeling, etc., is that we need to work harder at describing...

No, not at all. The quality of sound and colour are noticeably different depending on which side is covered, but I think that's just decrepitude. Subjectively at least, the sensory intolerance doesn't feel much different to that of acute illness.

Speaking personally—and I only know two other people with ME/CFS, but it's been a lot of decades and we've covered numerous British cities and regions between us—the ME/CFS diagnosis has never been an issue when we had symptoms of things that weren't ME/CFS. I've acquired four other diagnoses...

Just to be clear, I wasn't referred for ME/CFS. It was because my gait changed in an oddly distinctive way in middle age. Two different GPs thought it might be a sign of a neurological issue, and each referred me for a scan. Long story short, I was just compensating for a weakness in one muscle...

Not to speak of feeding ourselves, and paying our bills, and buying necessities on an inadequate basic income. The danger in exercises like this is that there are no questions allowing people to make clear that some of the extra costs of disability result directly from government welfare...

I'm interested in this too. The only test we seem to have devised is the two-day CPET, which is (a) risky, and (b) to trigger PEM people have no need to exercise to ventilatory threshold anyway. But how do you deal with individual thresholds and triggers in a trial, where you need to be sure...

Made a PDF with added spacing for folk who struggle with dense text. Content is the same, but the text is left-justified in a san-serif typeface, and the heads and subheads are bolded.

This is a really impressive piece of work—thank you! I didn't chip in before, but I saw another small proofing thing. It's just a few missing spaces in the fourth set of references on page 5. Corrected here for easy cut-and-paste: Carruthers, B.M., Jain, A.K., De Meirleir, K.L., Peterson...

It's a mess, isn't it. Specially as the medical professionals charities call on to talk to the media also have a tendency to make it up as they go along. They seem to think they have to talk up their 'expertise' in ME/CFS in order to justify holding the mic. It's really frustrating when there...

That's part of the problem of not having a qualified doctor leading clinics. If the treatments are delivered by various types of therapist, presumably those people have had specific training on them—they're not just drawing on their on their original clinical discipline. But if no one devises...