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Well spotted!

Transcript looks great, thanks @dave30th. It's great to have this as well as the video to share—some people prefer one form over another, even if they don't have ME. Obviously, it's also easier to remind yourself of specific points from a transcript.

Yup. Risk assessment for a nighttime wildlife survey: It'll be dark, you might trip over something. There's a lake, you might fall in. If you go off on your own and your battery fails, you might get lost. It focused only on what happened in the group, even though the most serious risk was...

One of my worries is that it's actually going to end up being used for trials, when at the outset it was presented as not for use in trials.

I'm not sure, you know. I think it's actively encouraged by the political class, and is partly driven by political ideology. Perhaps not the initial theory, but the way it's become so deeply embedded. There's a chance of wider society regarding it as a scandal, but it's not a given. At the...

No, but I like it! :laugh:

I suspect with the rehabbers (those working at ground level, at least) it's just lack of information. They've gone through a training and a career thinking that some degree of rehab is always possible, and it always helps.

I didn't even realise it's so local! But yes, very familiar from childhood onwards.

Unless the muscle's already overused and exhausted, in which case it'll just end up hurting. :banghead:

PROM-washing (noun) The pretence of recording treatment outcomes, where there is no treatment and therefore no outcomes.

Even so, I'm still not really clear how establishing a PEM threshold would be useful. This is because we never normally have the opportunity to start from three days of minimal activity—we have to use up some capacity every day doing basic living activities like washing, dressing, getting and...

But we can't do the experiment unless we can start from a known point. Most pwME have no way of knowing what number on the scale they're at right now, so they don't know how much capacity they have left. Without that, they can't work out how far away they are from a threshold and what level of...

I guess being discharged by a service would mean the treatment is finished? That's common and happens for various reasons. An ME/CFS clinic not taking on someone because they're too severely ill to attend might be another. The main problem might be that most pwME don't have a clinician in the...

I think it is, and that it was phrased this way for political reasons as you say. It sounds a bit desperate, so I'm not taking it very seriously for now. I can remember it being spoken about, but I'm so close to retirement age that I didn't really follow it up. You may well be right, though.

Thanks, I'd forgotten about that. I'm thinking of the more recent, much slippier language.

I can't even remember what MUPS means. Medically Ubiquitous Parrot Symptoms? (I can feel a new word game coming on.) But seriously, I can't remember reading anything explicitly challenging this characterisation. The Nice guideline says "Diagnose ME/CFS in a child, young person or adult who...

I suppose you can't blame them, since the alternative ( :eek: ) is to look at the causes.

An important point. I'm not sure about using reversible (they usually speak of improvement), but they present it as a treatment. They take care to avoid all curiosity about what happens after the treatment, of course.

Even if the organisations gave permission, it's still not really adequate. Prising open difficult emotional issues and just walking away should always be avoided, especially with young, sick people. Safeguarding means taking precautions to ensure the safety and wellbeing of participants, and...

PS: many, many thanks to David and George too. This is an incredibly useful exposition of the background to the story.