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I guess it's possible that it's real, but social factors also come into it? Maybe people who report they are very active are more likely to mix in a series of different social groups, and are therefore at higher risk of repeat infections? That alone would raise the risk of Long Covid—and it...

It would be pretty damning of psychology if that were the worst of its problems, but it isn't. When it comes to energy limiting conditions, it's not a non-knowing. It's a false narrative. It's not an outdated state of affairs maintained by structural inertia, it's deliberate disinformation...

They've got the whole FND field to go at too.

Yep—though so many papers come out that it's quite hard to mentally shortlist the potentially promising ones. I do think the WASF3 finding ought to be pursued, so we know whether it looks like a priority for further investigation or it's an anomaly that can be ruled out.

This interests me too, as I think it's possible increased time upright might be an indicator of PEM in some of us. Yesterday, for instance, I had to make the trip to get my dinner out of the oven five times. I forgot the cutlery, then the bread, then my drink; then I dropped my knife on the...

That's interesting... Million dollar question, though: did it suggest the writing sessions within a cognitive behavioural therapy framework? The ones that lead to significant and sustained improvements? (I assume they don't involve writing sweary posts describing exactly where cognitive...

True. I did fundraising as part of my job, and it's really tough. At the moment, patients are finding it hard because they haven't got a simple, compelling story, and researchers are finding it hard because they haven't got a simple, compelling question. Both groups desperately need a hare to...

The trouble is that it's not old. New iterations keep appearing, new papers are published every week, new harms occur as a result. We talk about it because it needs constant vigilance. As for bad, we need to be able to say how and why it's bad. We have to be better scientists than the...

I don't know whether some of those deploying CBT really are aware. Many of them will be fairly junior staff who were told that it works, not doctoral candidates who'll ask "Does it? How do we know?". The ones who developed the therapies seem to be part of a special class of academics. Like the...

No, that isn't really what I'm trying to get at—I know consent can be withdrawn. It's more that, as a theoretical participant: • If there's a psychological screening, as an ME/CFS patient I might want to know the reason for its inclusion. That doesn't mean an analysis of every question, just...

On @Hutan's point about psychological questionnaires, the problem is that they often appear to be sneaked into assessments. If there's a good reason to do them and the participant knows about them from the outset, then fair enough. There should never be "but we always ask this" components...

That sounds interesting! I hope they'll work closely with the community if they get the grant, because sometimes there seem to be nearly as many understandings of PEM as there are people who get it.

I like the sound of a psychosomatic status, I might develop one myself. Not sure about thinking I'm an emeritus professor—people will ask me stuff, and I might be too wiped out to think up comedy answers—but there must be something nice that involves sitting down a lot and being ginger.

I've been close to three people going through gruelling treatment, and none of them reported a PEM-like response. If they really overdid it one day, they just needed extra rest for the next couple. I asked on of them about PEM specifically, and they had a think about it. A couple of weeks later...

Hear hear! It makes such a nice change.

That tells us all we need to know. 'At risk' of behavioural issues—alcohol or drug misuse, being drawn into crime, developing obtuse psychological disorders.

One of the issues is that the presentation in severe and very severe ME is different to run-of-the-mill OI. Normally it's described as starting to feel ill after less than a minute of standing upright and still, but in severe ME, people start to feel ill as soon as they sit up. It'd be...

I don't think it's a terrestrial channel at all. In the casting call, it says 'for a major streamer'—so possibly Netflix, Amazon, Apple, etc. It could also be one of the smaller ones that focus on particular types of output. (I say that is if I know who they are, which is a bit rich considering...

I think Jenny Wilson may have had it right in the tweet that @Lou B Lou posted—BACME. It's not a patient charity, of course, but the tweet doesn't say that it is. Just that it's a 'major charity'.

Not able to speak for others, but I can't. I may wake up feeling much worse than usual, yet two hours later feel as well as I ever do. Or I can get up feeling not too bad, but later have to cross things off my 'hope to do today' list, because the usual improvement didn't happen or I got worse as...