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I think that any use of the 'all in the head' label is unhelpful for advocacy efforts. It's really besides the point and less the PACE authors present criticism of their work as founded on a misunderstanding of their approach to CFS.

The way Bristol has been dealing with the problems around Crawley's work seems deeply shady to me. What's going on with them promoting her TEDx talk that included false information, and that TEDx have now made inaccessible on youtube? @Jonathan Edwards Do we know if that was a part of SMILE...

I wonder why they were so confident in claiming "a condition with such a high placebo response as CFS"? Could it be an indication that the patients they were seeing, and developing their theories about, were unusual in some way?

I think Sharpe was talking about cancer related-fatigue... results look somewhat questionable there too, but I just thought I'd clarfiy that it was a different thing.

I've never looked closely at this, but I was under the impression that the research available indicated that people were more likely to report some improvement over time than decline (though a lot of people not showing any substantial improvement and a lot reporting some decline). Having said...

I'm not saying I think he's a great guy, but my impression is that generally it takes journals longer than 3 weeks to agree to make a correction. From reading about other academics trying to get corrections, these sorts of things is a routinely frustrating experience - academia is just routinely...

I'm not sure I've read that - you got a link to the abstract?

I don't think that he was 'forced' to make a correction. If the last decade has taught me one thing, it's that academic journals can get away with refusing to correct clearly false claims. Look at how people like Horton and Murray have behaved. They've published ridiculous claims and avoided...

Ah... I think that I've lost track of this correspondence.

The piece's argument does seem utterly besides the point of the real controversies around Sharpe's work, so maybe most people will ignore it and they'll just get some misguided comments from people insisting that some old unreplicated and dubious study preves that ME is a 'real' disease? The...

I agree. As well as being critical of when they fail, worth recognising when people (assuming the correction is adequate) respond well.

I knew Greco rang a bell, as I said previously: https://www.s4me.info/threads/monica-greco-draft-for-2017-paper-pragmatics-of-explanation-creative-accountability-and-%E2%80%98medically-unexplained-symptoms%E2%80%99.2978/ Pretty loathesome to ask "ask why are the apparently benign...

Congratulations and thanks Mike!

Yes, although I think that it's important that advocacy is not unduly influenced by these sorts of hopeful anecdotes. In the past it has caused problems when patients start pretending that we know more than we do, or arguing that we really need research into x or y on the basis of a recovery...

I would say a lot of scientists theories about ME are no more that a prejudiced reading of anecdotes and junk-science! So I'm setting higher standards for us than there are for peer-reviewed research papers (partly because I've seen the harm done by poor quality peer-reviewed papers.) Things...

But maybe he thinks he has some special criteria which means that the anecdotes he likes should be given particular prominence? I get the impression that as humans we tend to like stories, and to imagine that our stories help us make sense of things (this is my story to help me make sense of...

From 2012, but a reminder that the MRC were aware of the refusal to release PACE's prespecified outcomes back then, and took no action: https://www.theyworkforyou.com/wrans/?id=2012-11-26a.15.0&s=chronic+fatigue+syndrome#g15.2 The Countess of Mar Deputy Speaker (Lords) To ask Her...

Slight OT, but presumably that's the same M Hallet who is also working on the NIH's post-viral study: https://me-pedia.org/wiki/Mark_Hallett

Maybe they did just want to send a quick reply to show that they'd received the e-mail before the authors assessed and discussed the concerns raised? It could also be a deeply irritating brush off but it's best to avoid jumping to assuming the worst imo.

They've swapped from nonsense designed to appeal to foolish members of the public to nonsense designed to appeal to foolish academics.