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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No, that isn't really what I'm trying to get at—I know consent can be withdrawn.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...

In terms of symptoms, @MelbME, it may be useful to have some reference to time of day. I'm not sure quite what (can't think clearly at the moment), but possibly a way to indicate whether there were points in the day where symptoms were worse than at other times? [Edited to add: Or only present...

I agree that would be absolutely ideal, but I don't think it's realistic until we have trained ME nurses. For what it's worth, I've been having asthma checks for longer than I can remember—and with a lot of different nurses—and I've never had the 'what to do in an emergency' talk. It shows that...

I suspect it's probably just idiocy.

Welcome @Lena Kjempengren! I hope you enjoy it here. The TL;DR is that: 1) ...are very different things and it'd be useful for the ME organisations to point this out. It can never be repeated too many times. 2) There's no evidence that any treatment works, other than fake evidence from...

:rofl: I was once collecting my dark grey bomber jacket from the cupboard behind the hairdresser's reception desk, after an hour of bright lights, bustle, mindless chitchat, and hairdryers. "What sort of coat is it?" "It's sort of ... not long. And road-coloured."

True, but pwME also have to be prepared for them to say, "All we can recommend is pacing." Some recently diagnosed pwME will find it hard to accept that almost nothing is known about the cause of their symptoms or how to treat them, and go off looking elsewhere. But there are doctors who're...

What about when the subject moves their hands back so as not to make contact? That would be my instinctive reaction! :laugh: