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

Binkie4 said:
Repeating this, it seems to me that Cochrane set up a process that was unworkable. It asked organisations to select members to represent them, but also added a non disclosure agreement so presumably those members could not exchange information with the nominating body. This is senseless. How can Cochrane make progress on the review within such a senseless structure? Is this part of the problem?
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The problems in this process have been made much worse by failure for the planned wider consultations to emerge so far. My memory is not reliable but my understanding was that the IAG was to produce the protocol for developing the new exercise review that would include ways for engaging with the wider patient community and that that protocol would also be the subject of this wider debate. Obviously there was an initial intention to communicate regularly on what was happening, as illustrated by Hilda Bastian’s monthly updates up-to mid 2021. But the mechanisms for wider consultation were not established before the process broke down.

Because there has subsequently been an apparent complete clamp down by Cochrane on any information about this other than saying there will be a report in this very elastic ’few weeks’. something has gone wrong and I agree that it is currently profoundly unfair of Cochrane to seemingly impose a gag order on the IAG members.

My personal feeling is there is an internal conflict within Cochrane that is part of the GET/CBT as curative treatment true believers backlash, particularly against the new NICE guidelines. The updates on the planned Cochrane exercise review stopped in the Summer of 2021 at the same time as the various British medical Royal Colleges were trying to block the publication of the new ME/CFS Guidelines. Individuals that were fighting NICE have continued a rearguard action based on unevidenced assertions that exercise helps some people so it would be unfair not to offer it to everyone (even if many may experience harm), opinion pieces passed off as research articles and citing the flawed 2019 Cochrane review. These true believers some of whom have strong links with Cochrane have a vested interest in the 2019 Review remaining active within the Cochrane Library as long as possible.
 
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Peter Trewhitt said:
There is also potential links to UK clinicians group BACKME, perhaps explaining why they seemed to be aware in September of the current IAG reactivation before Cochrane had responded to our communications.
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Hello! I'm new here but have had ME/CFS for 20+ yrs.

A potential link could be Peter Gladwell. BACME's website shows that he is a board member, although this isn't included in his IAG bio.
 
Hi @sonya, welcome to the forum. Yes, we're aware that Peter Gladwell is part of BACME as well as being on the IAG, so presumably has been able to tell them that the process has re-started. I just wish the IAG itself, in other words Hilda or someone else deputising for her, had continued providing updates, even if only to tell the public there would be a delay, why and for how long.
 
Binkie4 said:
This is senseless. How can Cochrane make progress on the review within such a senseless structure?
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It makes sense if the plan is for there to be no resolution and waste time. Everything does, in fact. If it isn't the plan now, I don't see how it would be any different. The communication lockdown especially, including from Bastian, who apparently is the only person authorized to speak publicly, and has not said a single word for 2 years.

At this point, Cochrane has more than earned presumption of guilt.
 
Just had an update email:
https://community.cochrane.org/orga...older-engagement-high-profile-reviews-pilot-3

Dear all,

The November 2023 report from the Independent Advisory Group (IAG) is now available online, alongside an updated FAQ page.

There are updates on:

  • Recent IAG meetings and drafting a proposed editorial note for the review;
  • Upcoming consultations and progressing the review’s draft protocol;
  • Organisational changes affecting this review;
  • Complaints about the IAG and review processes;
  • IAG membership.
Best regards,
Cochrane
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Moved from the petition thread.

Quite a lot to take in. From a first reading, delays were caused by first the pandemic taking some of the Cochrane employed people off this project onto Covid related projects, then a major complaint from the supporters of GET about the plans for a new review, as well as complaints in the other direction, asking as we have, for the 2019 review to be removed. Such are the beaurocratic processes of Cochrane that it seems to have taken a year or more to decide on each of these. And some restructuring within Cochrane itself added to delays.

We will need to review how this affects our campaign.
 
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On the question of the existing review:
As completing the review will take time, the joint Cochrane/IAG meeting discussed a proposal from a member of the IAG for adding a revised editorial note. Some uses of the Cochrane review do not reflect critical nuance and limitations in its conclusions, and the goal of a note would be to try to reduce such misinterpretation. There was unanimous agreement to this step, and the IAG has begun drafting a proposal for the editors’ consideration.
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I don't think this is good enough. It seems that Cochrane doesn't think the existing review is bad enough to remove.


On the question of the 'recovered person' on the IAG:
We were delighted to welcome Katharine Cheston to the IAG in August 2023. Katharine is a doctoral student at Durham University in England, and she had ME/CFS for about seven years
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This is very good news I think, and it's a relief to hear that Paul Garner did not take the spot. This gives me some assurance that Hilda is trying to resist BPS pressure and follow the science. It sounds as though there is still a spot on the IAG to fill - and it seems that the role will probably go to a BPS proponent.
The IAG now has a final position to fill, and we will be considering how to fill it with the concerns about bias within the IAG in mind.
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The reasons included the lengthy and confidential process following a detailed complaint that called for the process to be discontinued, and for the review to remain in its current form. The basis for incorporating an IAG into the editorial processes of a Cochrane review was challenged, as well as the need for an update, and the proposed editorial process. The complaint also argued that too many of the people who were authors of the review or members of the IAG, including me, were too biased in favour of criticisms of the current Cochrane review.

Multiple committees within Cochrane’s organisation considered this complaint consecutively, which took around a year. The complaint was not upheld after thorough consideration by the Conflict of Interest Panel, a subgroup of the Editorial Board, and finally Cochrane’s Governing Board.
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This is interesting. It sounds to have come from the BPS side, aiming to stop the new review process, and it seems to have substantially delayed things.
 
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I have no understanding why receiving a complaint then should mean that you shut all communication down completely. And that it should take "multiple committees" to eventually reach a decision show how dysfunctional Cochrane obviously are.
 
Hutan said:
This is interesting. It sounds to have come from the BPS side, aiming to stop the new review process, and seems to have substantially delayed things.
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Actually I wonder if it wasnt a blessing in disguise to go silent. Because although the wait has been awful, at least it makes it more difficult for the BPSers to say that the complaint response was influence by 'ME activists', because nobody knew!
 
Andy said:
I have no understanding why receiving a complaint then should mean that you shut all communication down completely. And that it should take "multiple committees" to eventually reach a decision show how dysfunctional Cochrane obviously are.
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And worse than that, the whole project is shut down for, it seems 2 years, by the fact that complaints were being considered in Cochrane's ridiculously beaurocratic way. Considering a complaint should have had no impact on the process of preparing a new review proceeding. It's utterly ridiculous.
 
Trish said:
And worse than that, the whole project is shut down for, it seems 2 years, by the fact that complaints were being considered in Cochrane's ridiculously beaurocratic way. Considering a complaint should have had no impact on the process of preparing a new review proceeding. It's utterly ridiculous.
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And how much confidentiality should be granted in such a system?
 
Trish said:
Considering a complaint should have had no impact on the process of preparing a new review proceeding. It's utterly ridiculous.
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I suppose if the complaint had been upheld, the continuing work on the process would have been for nothing? But staying silent for a year or two while it was being investigated internally seems a bit extreme. I'd certainly like to see the details of the complaint and how it was adjudicated.
 
I guess that the complaint is quite likely to have been from Flottorp, who has held a senior position within Cochrane. But the more senior the person was, the stronger the argument for a rapid decision at the highest board level.

Keeping it confidential is hard to justify but one can now see why IAG members might have had difficulty breaking ranks.

Cochrane comes out of it with zero credibility as before.
 
Frankly, I think that Cochrane owe it to the community to publish the details of the complaint, given that while they talked endless about how to deal with it, they paused progress on the update and went radio silence.
 
I think the risk is that people will feel grateful to Cochrane for resisting the BPS attempt to shut the new review process down, and grateful about a promise that the editorial note on the old review will be strengthened.

And that will distract from the fact that the old review is still there in the Cochrane Library, still propping up the idea that exercise therapy is a valid treatment. And from the fact that the new review is still a long way off being completed and there's no guarantee that it will be evidence-based if and when it ever eventuates. It's far more likely to be some sort of a compromise - the 'middle-ground' that a Cochrane editor has suggested is the desirable outcome.

As @cassava7 pointed out, this paper may help us demonstrate that the old review is 'in error'.
(…) overestimation of effects in randomized trials that fail to optimize randomization and blind patients and outcome assessors, Wang, Guyatt+, 2023
And surely an inadequate assessment of harm is also a major error?

If a review is still causing serious harm after multiple edits and the rules don't allow for retraction, there's something badly wrong with the rules.
 
Hutan said:
On the question of the 'recovered person' on the IAG:
This is very good news I think, and it's a relief to hear that Paul Garner did not take the spot. This gives me some assurance that Hilda is trying to resist BPS pressure and follow the science. It sounds as though there is still a spot on the IAG to fill - and it seems that the role will probably go to a BPS proponent..
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Link to the bios doesn't as yet contain Katherine Cheston's details - here's her Durham staff bio: https://www.durham.ac.uk/staff/katharine-a-cheston/
 
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