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Could it be both? Could the metabolic problems arise as a result of improperly cleaned away central signalling which would normally be resolved during sleep?

I too like SEL and want to add my own caveat. My suggestions are merely to help get this right. It's going to be hard to please everybody, though, because it will be difficult to describe PEM, or any of the symptoms really, in such a way as to include everyone all the time. That doesn't mean we...

My point was more that this downplays what PEM is. Everyone can get DOMS. Not everyone gets PEM. There are already lots of tired people who say they think they have ME because they work shifts or whatever. If PEM was likened to DOMS, then I could see people who overtrain and have poor sleep...

Is PEM like DOMS? I'm not sure it is. One is the usual, expected soreness after exertion. Comparing the two might unintentionally mean lots of athletes think they have ME.

The Countess of Mar.

It might also be a social thing. If you've had to come out once, coming out with chronic pain might be (a bit) less scary. Equally presumptuous, of course, but the point is that we can't guess about associations such as these. Most likely, it's some kind of reporting bias because nothing else...

Link here: https://data.bris.ac.uk/data/dataset/3kp75dy7ngru4236r8t1gl71h5

I'm so sorry to hear this. It's a sobering reminder of what lengths we go to in order to feel better.

Thank you. All really good info.

Surely an 'improvement' would be a reduced rate of perceived exertion/effort (RPE) for the same or greater distance? You could presumably convert RPE to a number between 0 and 1, and then divide the distance by that RPE to get a comparative score of before and after?

I've never heard of anyone I know recovering from it, not even friends of friends.

Which is absolutely fair enough, and I think it's the sort of thing that will put many people off, so it's worth people knowing upfront.

The ME Trust is a Christian organisation, so they're liable to talking about 'spiritual' stuff. As an agnostic Buddhist who went to a CofE primary school and a Catholic sixth form, I'm possibly more used to filtering that out. They did take Jessica Bearman-Taylor as an in-patient, and she found...

Dr Worthley is really lovely. Sometimes the ME Trust advertises that Dr W has telephone availability again, but it's sporadic.

No one has forgotten anything. Many patients have been helped, but patient testimonials of Hyde have always been mixed. Some have felt ripped off and some have felt he's rescued them. It's not as simple as 'He was great, and then he fell because of old age.'

Surely Myhill has the same conflict of interest? I'm just sceptical that there's some mystical process that only her team can do to get the 'right' results. If it wasn't described in the protocol, what could it be? And could it be some process that biases the results? I think if Myhill wants...

I don't think anyone has been unfair to Hyde here. He's admitted to several things, and we've commented on that. We all make mistakes, of course, but some mistakes are riskier or carry more serious consequences.

It's certainly a shame that doctors like Montoya and Hyde have got into bother, but I think it harms us more when we surround ourselves with people who embroil themselves in scandal. People already think of us as anti-vaxxers and conspiracy theorists, so every time we jump to the defence of...

ME patients are helped by good specialists. If a specialist is making mistakes and not helping patients, then that isn't helping patients. Of course many patients have been helped in the past, and that's laudable, but it's not enough to excuse poor practice now. ETA: And if Hyde has handed in...

'Crucifying one of our own'? This isn't tribalism or religion. If he's running a poor service for patients (one it looks like he wasn't actually supposed to run) then it's right that he stop, regardless of whether we agree with his opinions or not. What about the patients charged hundreds or...