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Yes, I do very much appreciate the comments will have been made in good faith, not suggesting otherwise at all. I just feel that these charities must have the connections needed to double check the facts before reporting as facts. Because those statements very much were counting chickens before...

I have to say I'm extremely disappointed with #MEAction and the MEA, because I took what they said in good faith (as did @Sasha very reasonably), and posted this very encouraging 'news' to a FB group where hope, as always, can be in very short supply for PwME. I now find I have been the purveyor...

Given that so many people do not recover, might it also tie in with the possibility there could be something fundamentally different with those who do recover?

Can't help thinking that the psychs have gone off half cocked for years presuming they are doing RCTs and making big claims to that effect, when in fact that have not. Feels like they, and maybe trialists from other disciplines, need to get round the table and work from the ground up to work out...

Not sure about that bit though. Several years? ETA: I see @Andy got there before me.

So what genuinely interests me, is how do you control for placebo effects in an unavoidably open label trial, if the psychological condition in question can only be measured on subjective outcomes? And especially if the intervention itself produces effects that can so overlap with placebo...

A placebo effect is essentially a psychological effect - the recipient's response, at some level, to knowing they have been administered a placebo. I suspect that in any given instance, although the psychological placebo effect might seem quite straightforward, it likely implicates quite a...

That's what is needed for all PwME ;). I suspect @NelliePledge is probably correct on this, and that people close to Carol Monaghan (no 'e' on the end of Carol note @NelliePledge :) ) have likely been told this by her. I cannot imagine she would have said this without it being valid, even...

Horribly worrying! Did Carol Monaghan report "that she had been successful with her application" or not? https://www.facebook.com/meassociation/ ...

Valid points. But the article is focusing on one crucial aspect that is so misunderstood and abused. By focusing on one aspect, the message has a much better chance of getting through I think.

Not had a chance to do more than skim this yet, but initial impression encouraging. Will look more later - hopefully still encouraging.

It's a very adequate explanation @DokaGirl :). I appreciate entirely what you say here.

Trouble is that's a very slippery slope. What exactly is it that is someone's fault? That they made the wrong choices at school and so end up in the wrong sort of jobs that they can never be happy in? Or the zillion and one other wrong choices we can make? Gets very tricky.

Worth keeping in mind that a debate in the HoC is very much a parliamentary debate, and not confined to government itself. There will be non-Conservative MPs with various motivations for wanting to expose what is happening for PwME, some definitely altruistic, others more than happy to cause...

Glad it's helping @erin. Now and again old remedies turn out to really work, and modern science eventually catches up. Who knows, maybe this is such case.

It was in the thread title, which is where I got it from, but I see the "3-hour debate" that was in the title has now changed to "debate". @Sasha?

That is brilliant! Really really well done Carol Monaghan, and all those who inevitably are supporting her behind the scenes, and whose ongoing work have created an environment making this possible. A 3-hour debate in the HoC cannot be trivialised! Please take note BBC, when deciding whether to...

Another apology needed! Despite not being the person with ME, I've always had a rubbish memory! I'd also forgotten Keith Geraghty did a great paper on harms from medical interventions :rolleyes...

Exactly! My wife was always very active, never gave herself the chance to decondition, and is still pretty active albeit within tighter limits. Which is why I know for absolute sure why the deconditioning theory is such a load of 'bullocks'.

Yes, sorry @Tom Kindlon, I'd forgotten that you did a very good piece on reporting of harms. I do think still that with PACE etc (maybe common to other medical trials), explicit testing of safety is approached rather differently to the way it is in engineering. It feels to me as if nothing like...