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What self-reported outcome measures are you speaking of here? Given we are talking about placebo responses and self reported outcomes, is it possible that in the unblinded study the trial design (or things outside of the design) inadvertently boosted expectations, without the investigators...

You were very selective in your quoting me. The answer to your questions is in the rest of that post. We often know the real existence of something long before we understand its underlying mechanisms. ME for instance.

But nonetheless placebo responses must be real. Otherwise responsible scientists the world over have been getting it badly wrong all these years by controlling for it; running controlled trials, a significant component of which is to control for the placebo effect. Controlling for the effects of...

Was the difference significant, or down in the noise? ETA: What are the known side effects of Rituximab?

Yes, if pwME are also suffering from one or more other comorbid conditions with overlapping symptoms, the confounding factors are potentially major. If not segregated out from a blanket ME/CFS diagnosis, then all manner of confusions, claims and counter-claims, are going to result. Indeed it may...

On a completely different forum relating to a totally different subject, this person made a comment that is so very relevant - and rather creative - so I thought I'd post it here :).

Yes. I just posted this comment ... https://www.s4me.info/threads/the-‘cognitive-behavioural-model’-of-chronic-fatigue-syndrome-critique-of-a-flawed-model-2019-geraghty-et-al.9258/page-2#post-212504 Unjustifiable assumptions is what has plagued BPS ME/CFS research for so long, and has so badly...

This cuts to the heart of it. In the lack of any real evidence base the whole thing, lock stock and barrel, on ... assumptions! The mind set that seems to drive so much of these people's 'research'.

"Chipping away" is exactly it. Chipping away at the structure of a building very badly built in the first place. The have no way to repair the crumbling structure that is being chipped away, so they just keep erecting more facades to make their building superficially look modern and mainstream...

Is there not a more fundamental human rights issue that could be escalated, to an authority above and outside of medical trial ethics? I presume Brexit will screw up escalating things to the European court of Human rights (is that the correct name), but it feels like when all the supposed checks...

Unfortunately it needs both intelligence plus integrity, 1 out of 2 doesn't cut it. So many examples in public life at the moment.

@PhysiosforME.

I think they may have been heeding @Trish's recent letter. First time I've noticed them talking explicitly about trying to find out who might benefit and who might not. Though it's all tosh, because PACE already answered that one for them pretty unequivocally.

That is an interesting insight.

Irrespective of whether these things get heeded or not, I think it is so very important they get into the written record, as your response has done. Hopefully the day may come where people really do start to take note and heed what is going on.

I don't mind chipping in if it helps, though not much time for next week or so. I think the final form of words would only need to be quite short, and better for that. It's really about correcting deeply ingrained misconceptions, and bringing about new insights.

Trouble is I'm not sure if we yet know enough about ME to very specifically call it a disease. And I really do mean I don't know ... I've no medical qualifications. Could you comment on this please @Jonathan Edwards?

Yes, you are absolutely right.

My first thought would be that stress likely increases the body's energy demand rate requirements - increased heart rate, higher cognitive load, and many other things no doubt that my medical ignorance makes me unaware of. Inability to adequately meet otherwise-normal energy demand rate needs...

I think their quote is unfortunately worded, but in principle is OK if they had got across properly what the really meant to say. My guess is they meant something more like this: "Pacing is about ascertaining how much - or how little - exercise an individual can do whilst avoiding (or at least...