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Thanks again for your comments @Michiel Tack : re Indirectness of evidence - does this also relate to the fact that we do not have a direct measure of fatigue?

FINE was designed to allow house-bound patients to participate, though it ended up also allowing those who were too healthy to be included in PACE to enter too so I'm abit surprised their average scores was so close to the maximum.

Thanks for that. TBH, I didn't think a lot of Tovey's argument were that strong - the whole correspondence gave the impression that no-one involved in the review really knew what they were talking about, or had bothered to think seriously about why so many people were raising concerns about this...

The new EiC took over from Tovey and decided not only to publish this Larun review, but also to allow more positive claims about exercise therapy than Tovey would allow. They had a fresh shot and they blew it. From Michiel Tack:

Pretty irritating to have people speaking at the Science Media Centre about the problems of stigma surrounding CFS. Have they spoken out about the way the SMC has promoted spin and prejudice?

There certainly seem to be people taking advantage of patients by giving out dubious Lyme diagnoses. "Our treatments and support network [for CFS] are not great." - That's something of an understatement!

Larun's PhD was on exercise therapy and CFS. We have good reason for not respecting her, but there's a lot of good reasons for believing that we do not want a review led by those Cochrane views as 'subject matter experts'. They also haven't given any details on what changes, if any, they are...

Is this something that should be welcomed? Everything we've seen from Cochrane so far indicates that this is likely to lead to more harm.

Those studies were also in the 2014 version of the review, but were new compared to the review before that.

Thanks for all the discussion on this. I remember when I first read about the concept of a 'clinically significant difference'/MID/etc, and it seemed like a potentially useful way of assessing patient views on the value of changes in questionnaire scores in nonblinded trials once they had been...

And that word will sound better than it is.

If so, that would be a pretty grim sign for the state of Cochrane too. Only when approaching retirement can they consider nearly doing the decent thing, but failing to follow through.

"Avoid words that sound worse than they are, e.g. chronic, degenerating, etc." What does this mean? The words are what they are. Do they think some words sound better than they are? Looks like the Dorset Pain Service has a version of this up: http://www.dorsetpain.org/Docs/Creating a positive...

This is also an indication that the new person is even worse than the last.

The mention of IPD made me wonder about these bits of the new review, seeing as the IPD protocol has been withdrawn:

Given the way Cochrane has acted, why would they assert Cochrane Reviews are "the gold-standard of systematic healthcare research reviews"? Bringing up AfME's survey data to dispute this review is not a great move either. "We are keen to see Cochrane progress this as soon as possible, with...

We probably need to be careful with phrasing on that, as it's disputable to what extent PACE can/can't be considered an RCT. It fails to control for many of the things likely to bias outcomes in favour of CBT/GET, but it has features that would lead some people to class it as an RCT. I'm...

Just to be clear - this was prespecified as the time for their primary outcome, but there were changes to the primary outcome at that point. If there's cherry-picking on the time, it's the way the Cochrane review fails to look at more long-term follow up data, emphasising instead the data at end...

I've only skimmed through it, but what a depressing read. They do have to note the lack of evidence for benefit at follow-up, but people Cochrane clearly haven't taken this review seriously, and chose to let the authors get away with some utter BS. The selective reporting section on PACE shows...

I think that this is the key thing, and a good indication of what they really think about ME/CFS patients.