Cochrane Exercise Review Withdrawn - Individual Patient Data

I am fairly sure the full author team, including White et al submitted a manuscript of the full IPD review. It was then peer reviewed, including by patients (or as Cochrane call them, consumers) and did not past muster, to put it mildly. I'm not 100% sure of this, as it was a while ago, and I may have misremembered. I was told this by a person with ME, but I can't remember if this person had a/ requested to see the draft of the IPD review and was endlessly told "there wasn't time", or b/ actually did see it and had a chance to give feedback. So yes I think the review was pulled partly because of the authorship optics, but also because it was not a good review. Bad enough to pull it altogether rather than allow the authors to endlessly amend it. I would love to get the correspondence actually. I might try and get it via the Norwegian Institute of Public Health (Freedom of Information).

 

Tweedle Dee can't do that, but Tweedle Dum can.

Very serious organization.

 

I am! I have the files.

 

2019
Exercise therapy for chronic fatigue syndrome - Larun, L - 2019 | Cochrane Library

Exercise therapy for chronic fatigue syndrome - PubMed (nih.gov)

 

goodness this sounds alarming.
does this mean there will be yet another drivel laden cochrane review into exercise? I cant make head or tale of it

 

That's rather exciting!!

 

Good idea & good luck - thanks for chasing this.

EDIT - certainly in the UK it's a criminal offence to destroy material i.e. once a request has been made --- probably in Norway too - it's EU legislation. So interesting to see the outcome.

 

I am a bit lost. Is that what is happening? If so, what?? Can someone explain; I am really sorry.

 

Would you be able to give me a beginning and an end date for a FOI about the correspondence between, presumably, Larun and Cochrane about the IPD review?

 

All I can see at present is my reviewer's report for the IPD on 11th July 2017.
I think the discussion with Tovey followed on from that and ended up with Soares -Weiser some months later? This must all be documented in a conversation between us somewhere?

 

Great - I can use that date as an anchor.

 

I cannot find much in my email files. The initial discussion was in Phoenix Rising days. I forget how long it took for the review by Guyana and the subsequent fudge by KSW. David T @dave30th would likely have more information about the timeline - including correspondence with Tovey, which did not come to me directly.

 

Yes. Would it justify a retraction or some sort of warning? It seems like a form of lying.

For clarity here's the definition of Oxford CFS criteria:

a) A syndrome characterized by fatigue as the principal symptom.
b) A syndrome of definite onset that is not lifelong.
c) The fatigue is severe, disabling and affects mental and physical functioning.
d) The symptom of fatigue should have been present for a minimum of 6 months during which it was present for more than 50% of the time.
e) Other symptoms may be present, particulalry myalgia, mood and sleep disturbance.
f) Certain patients should be excluded [I don't want to type it all out. The important part is that medical and certain psychiatric disorders conditions causing chronic fatigue are excluded, but depressive and anxiety disorders are not].

So in summary it's approximately equivalent to severe chronic fatigue and allows people whose main problem might be depressive disorder to be diagnosed as having CFS.

Given the funny definitional games the PACE authors have played, I would also want to know how the authors define "severe disabling fatigue" exactly.

I also wonder if "definite onset" would exclude those with a gradual onset.

 

After having their entire body or research invalidated several times on this ground alone, this is incredibly foolish and stubborn to the point of being fanatical.

Looks to me like a shift away from anything about ME/CFS and towards even more generic illness definitions based around single symptoms, under the generic umbrella of either MUS or functional disorders. Or whatever.