Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Oh, I missed that note from August 2020 on the Cochrane review on exercise therapy:

Note on the status of this review
Published : 26 August 2020 John Hilton, Cochrane Senior Editor
Response from the editorial team at the Cochrane Editorial and Methods Department:

We thank Michiel Tack for the feedback on this review, and we appreciate the thorough and well-referenced comment. This review and its protocol are in the process of being updated as a priority. The update is being informed by an independent advisory group of people living with ME/CFS, clinicians, and researchers. We will ensure that the comments you have provided will be reviewed during the updating process by the independent advisory group and the authors of the review.

Further information about the review update, and reports on progress, will be posted to the following website: https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot

Declarations of interest:
No conflict of interest declared.
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https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280
 
MSEsperanza said:
https://www.cochranelibrary.com/cds....pub8/detailed-comment/en?messageId=266353280
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Who will be the members of the IAG and how will they be chosen?
Cochrane’s Editor in Chief appointed the IAG lead, Hilda Bastian. There will be a further nine members. Eight of those members will be chosen by the lead, in liaison with the update’s project manager, and the final member will be chosen after advice from the IAG at its first meeting.

In addition to the lead, the members of the IAG will have a range of expertise, including:

  • People living with ME/CFS;
  • Clinicians; and
  • Researchers, including a systematic review methodologist.
Individuals for these positions will include some representatives nominated by advocacy groups for people living with ME/CFS, some people who have been involved in discussion or review of the current Cochrane review, and clinicians and researchers active in the field. Unsolicited expressions of interest and suggestions are also being considered.

Suggestions have been received since the announcement of IAG lead on 13 February 2020. Members are being invited and appointed in several waves starting in March 2020, with a concern for gender balance and the range of geographical locations of members.
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[my italic/bold]

Has S4ME ever been contacted in this regard? 10 month ago.
 
Trish said:
Wouldn't it be worth redoing the review in the way NICE did, and publishing the conclusion that all the studies show that GET is not an effective treatment for CFS.
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Indeed but to do that all you need is to allocate the review to someone sensible. Not set up a working party?

Or just accept that on balance there is no evidence in favour of exercise treatment and forget it just as we tend to forget gooseberry fool therapy and cold shower therapy for ME.
 
Jonathan Edwards said:
Let's face it, anyone asked to get involved in this should have pointed out that it was a waste of time and the the review should be junked and that this had been the opinion of the previous editor in chief so why prolong the agony?
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I think the last mention from Hilda about the advisory group was in April? .

Yes, I think she would have a hard task convincing anyone the review was a good idea, let alone convening an "independent advisory group" to advise on its production. I wrote several times on Twitter and to the designated email address that it was not a good idea to do this review update and that the existing review should be withdrawn, along with the one on CBT.

The latest in November was that she was preparing a report rather than putting together an advisory group. I didn't get a reply when I asked what the Cochrane review objectives were given NICE had done their own independent systematic review and used the results to reverse the recommendations of 2007.

.
 
Trish said:
Wouldn't it be worth redoing the review in the way NICE did, and publishing the conclusion that all the studies show that GET is not an effective treatment for CFS.
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We even have Vink's reviews as a good starting point. It's just a question of process, the evidence is obviously invalid it's just that the process is corrupted and ignores its own grading system, deferring to the very people who fabricated the evidence to review it and marvel at how great they are.

Every time this is what happens: people cheat behind closed doors, years of outrage and demands, eventually the evidence is reviewed on its merits and acknowledged to be invalid. That's what the NICE committee did and it's what the IOM report did. The process fails when no one is there to force the rules and works when there is. But on technical ground both reviews have been fully invalidated, reality has simply continued to be denied. It's entirely about politics, there is nothing technical going on here.
 
So did this happen with a secret advisory group? Or Bastian alone?

The secrecy is not promising at all when the very problem here was secretive political manipulation. Even if the report is good, the process shows no lessons were learned at all and this failure will continue to happen, all it takes is a tiny variation to say "well, this is different".
 
rvallee said:
So did this happen with a secret advisory group? Or Bastian alone?

The secrecy is not promising at all when the very problem here was secretive political manipulation. Even if the report is good, the process shows no lessons were learned at all and this failure will continue to happen, all it takes is a tiny variation to say "well, this is different".
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She will have been working alone, or with the Cochrane project manager?

The process for appointing the IAG is described here https://community.cochrane.org/orga...eholder-engagement-high-profile-reviews-pilot
It includes this statement which has not been updated "Members are being invited [by the lead, Hilda] and appointed in several waves starting in March 2020, with a concern for gender balance and the range of geographical locations of members"
 
Last edited:
Hello All

I had a reply today to my request to Cochrane to withdraw the Exercise and CBT reviews which I made in November. The response was very vague, so I replied asking for clarification - see below


From: Rachel Marshall <rmarshall@cochrane.org>
Sent: 01 February 2021 17:35
To: Caroline Struthers <caroline.struthers@csm.ox.ac.uk>
Cc: Karla Soares-Weiser <ksoares-weiser@cochrane.org>
Subject: RE: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome and CBT
for chronic fatigue syndrome

Dear Caroline,

Thank you again for your email regarding the Cochrane reviews on exercise therapy and cognitive
behavioural therapy (CBT) for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

A sub-group of the Cochrane Editorial Board and a Co-ordinating editor have reviewed and discussed the
information from the updated NICE guideline under consultation on ME/CFS, and the associated NICE
evidence review on non-pharmacological management [review G]. The editors have agreed that the
information within does not meet Cochrane’s criteria for a serious error, and both reviews will remain
on the Cochrane Library. The two Cochrane reviews each have an editorial note within the abstract,
explaining the current status of the review. Cochrane will update the editorial note for the CBT review to
further clarify that the strength of evidence has not been evaluated using GRADE methodology, and this
change to the editorial note will be made within the next few days.

With best regards, Rachel

Rachel Marshall
Senior Editorial Officer
Editorial & Methods Department | Cochrane Central Executive


From: Caroline Struthers
Sent: 01 February 2021 21:38
To: Rachel Marshall
Cc: Karla Soares-Weiser
Subject: RE: Request for withdrawal of reviews Exercise therapy for chronic fatigue syndrome
and CBT for chronic fatigue syndrome

Hi Rachel

“The editors have agreed that the information within [the draft NICE guideline] does not meet
Cochrane’s criteria for a serious error”

This sentence doesn’t make sense.

I notified the Editor in Chief that following the conclusions of the reviews could lead to patient harm
which is one of Cochrane’s definitions of a serious error.

Can you confirm that the message below means that the editors have concluded that following the
conclusions of either of these reviews could not lead to patient harm.

This is despite the new draft NICE guideline recommending that neither intervention should be
recommended due to extremely poor evidence of effectiveness, and with recent reliable evidence of
harm.

Best wishes

Caroline


Caroline Struthers
Senior EQUATOR Research Fellow
 
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