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Although this doesn't surprise me in the least, I'd not appreciated it until mentioned here.

Well no, it wouldn't. If secondary condition B is caused by primary condition A, then attempts to directly fix condition B, without first fixing condition A, are doomed to failure. It's akin to replacing a fuse that blew because of an electrical fault. You can replace all the fuses you like but...

Presumably ethical approval is distinct from whether there are methodological issues using pre-acquired data from a service evaluation in a research study claiming in its title to be prospective?

I'm not talking about pwME, but I would not be surprised if there are people whose only problem is deconditioning, but very severe, then there may be a tipping point beyond which it may be very difficult to work your way back out of it without help.

I'm not sure. Perhaps @PhysiosforME can answer this one? If someone's sole problem genuinely is severe deconditioning, possibly left over from some other physical ailment that has subsequently recovered, is there a level of deconditioning severity that might require extreme effort (rather than...

Your group really is amazing @PhysiosforME, in the best every way. Huge thanks, huge congratulations, and keep up the tremendous work. You really are making a very positive difference for pwME I'm sure.

Psychiatrist 1: How do you empathise? Psychiatrist 2: I'm told that if you need to ask there's no point asking. Psychiatrist 1: So how do you empathise? Psychiatrist 2: What did I just tell you! I couldn't get an answer either, when I asked. ETA: Not aimed at all psychiatrists, there are many...

At first I thought it looked possibly enlightened with Not Yet Explained Symptoms, until I then realised: So I conclude they are likely doing their usual trick of trying to pick up on current criticisms and just hang a few psycho-baubles on them.

It should be incomprehensible shouldn't it. But it's what seems to happen when a certain cabal of psychiatrists presume expertise way beyond their competencies, and have the influence to convince the establishment they are right. Brilliant support @PhysiosforME, so very good and morale...

Yes, badly worded. Presumably it should say "Apart from ME/CFS, you must NOT have any other medical condition that affects memory or attention"

Before 2016 when I joined PR, my wife and I lived in blissful ignorance of all the controversy surrounding ME/CFS, and we still thought the sun shone out of the proverbial 'arris of the medical establishment and NICE. Was a bit of a shock discovering the truth.

Please don't assume you don't experience PEM; it is very easy to get the impression that only the more severe symptoms equate to PEM. But I believe it is also about symptom pattern, and how it relates to bouts of exertion, and that PEM severity goes hand in hand with ME/CFS severity. To try and...

Not one she has given credence to I would imagine, as that is the default usually for pwME.

Although I'm far from a shining good example, if some of the risk factors for severity can be reduced by lifestyle choices then it is valid to address that I would think.

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Don't seem to. I think they missed a bit of a trick here, because it is the expected norm these days, out of politeness if nothing else, to send a confirmatory email when someone registers or signs up for something. A slight omission in public relations I think. But I also appreciate this is...

Very well put.

Me too, very much so.

I also read that in order to achieve the 20,000 suitable participants they need, they are hoping for around 40,000 applicants to choose from.

Yes, the individual data from the very few objective outcomes would need to be looked at. A very small % may have improved, same as maybe a very small % report so in the wider community. What would be really useful to identify is whether they would have met a proper diagnosis for ME/CFS just...