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I thought they have some sort of shock-absorber mechanism.

That is so very good @Nancy Blake. I would love for SW, EC, etc. to have to stand up and read this out loud for all to hear.

Love the logical extension of the illogical BPS approach...

Definitely a trial ... :rolleyes:

I think it suggests they daren't try the same thing with GET.

So why the bold claims of recovery? And PACE was not predicated on whatever the original cause of the ME/CFS was, but the ongoing maintenance of sympoms being due to deconditioning. That statement is just misdirection and meaningless. Probably intended to sound convincing to those (too many...

I think what it means is that there needs to be a core set of measures, with an overall combined improvment in them seen, to count as real improvement; as you say decline in one area can lead to improvement in another. It is the whole suite of core issues that needs to improve, as a combined...

I presume by this you mean PwME having PEM with a cold, not the general population?

Absolutely, along with actual physical function ... not 'measured' via a questionnaire!

YES! If perception of fatigue reduces, then that is simply a secondary bonus, nothing more. I mean, if people's real physical capability improved, then very likely so would their perception of fatigue improve. But that causal relationship does not apply the other way round.

Exactly. Those who coined the CFS label must be very pleased with themselves.

That is excellent.

But this is my whole point. The BPS crew implicitly insist there is a relationship, and a simple one at that. "Please write down these numbers, and because we are clever psychiatrists, you can trust us that those numbers validly reflect your level of fatigue". Which is cr*p of course, because...

Absolutely. I think the BPS'ites like to think that because they have converted things to numbers, those things somehow acquire magical objectivity status. But you could answer one of their questionnaires by rolling a dice, or let a snail crawl over it and see where it poos. Still get numbers.

Agreed. Even if you ask someone about an objectively measurable quantity, the response itself will inevitably be subjective. But it is more tricky with something like fatigue, because fatigue is not an objectively measurable quantity; fatigue is itself a subjective quantity, probably with all...

I think a crucial point is for NICE to appreciate why assessment of objective outcomes is so vital, because I'm not sure they do. The whole thing has been driven all these years on the presumption ME/CFS is psychological, in which case subjective outcomes are the accepted order of the day; we...

Exactly so. Icily nice.

A crafty moron who doesn't want to distinguish I suspect.

I think it is also worth remembering there is still a long consultation period ahead, and I suspect that whatever other events transpire during that period will have a significant influence on those ongoing consultations. The more difficult it can be made for NICE to stay in their comfort zone...

I saw some in a jumble sale a while back. Job lot. :angelic::)