Nature: A reboot for chronic fatigue syndrome research

Inara said:
I don't accept any "psychological diagnosis" - I don't believe in its existence - and I don't want to be put under a 'community umbrella' that, in principle, accepts the possibility of ME 'being in the head'. I am totally fine if someone personally has another opinion.
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To be clear, I think the likelihood of ME/CFS being down to false illness belief as being basically zero: too much work has been done on this hypothesis, the trials that support it are all irredeemably flawed and where studies have tried to put in measures that would counteract placebo effect the trials have failed. My post certainly shouldn't be read that I have some sneaking suspicion that there's a chance we all have extreme hypochondria or similar. All I was saying was that I reject the false illness belief hypothesis because of the evidence, rather than (as BPS proponents claim of ME/CFS sufferers) because I have a strong objection to any possible brain-based explanation that no amount of high-quality scientific evidence could overcome.

Valentijn said:
It applies to every trial which used objective measurements, aside from a couple early Oxford ones where they were a lot more blatant about using physically healthy patients. My favorite is Wiborg (2010), which was a review of three Dutch trials involving actometers. No improvement in actual activity levels, despite self-reported improvements in fatigue. It's probably the paper which scared the PACE authors off of using actometers.
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I hadn't seen that paper before. Bookmarked, thanks! That's such a brilliant finding in that it not only shows the fallacy in virtually all self-report-based ME/CFS research but I imagine it has similar application to CBT trials for a hell of a lot of other illnesses as well.
 
Yay for Amy. :)

Though there is one detail in the article that needs correcting.

And in 2011 and 2013, a British team reported that exercise and cognitive behavioural therapy relieved the symptoms of ME/CFS for many people in a large clinical study called the PACE trial. US and UK health authorities had made recommendations based on the findings, but, starting around 2015, scientists and patient advocates began publicly criticizing the trial for what they saw as flaws in its design.
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Public formal criticism of PACE began no later than when it was first published in early 2011, including via letters to the Lancet (some of which, to the Lancet's credit, they did accept and publish on the formal record).

There had also been considerable criticism before then, right back to when PACE was first proposed. But I am not up to speed on that period.
 
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