2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

Am I missing something here that from Cochrane's rules the 2019 update also should not have been considered a new update, and thus retain its prior version number and date? It seems to fit their criteria for an amendment, but there was no literature search or update as required for a proper new version.
 
Hilda Bastian said:
And I am seeing worrying signs in how it’s handling some red-hot reviews currently in its pipeline, too. If it can’t handle controversy, the organization is ill-equipped to serve the world as it needs to in this time
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If only. They can't even handle their most basic functions, let alone controversies that result from it. Which they are handling strictly as PR issues. They appear to be completely floundering, both too small to do their main work or respond to issues, and too big to do anything in response, mired in layers of finger-pointing, potato-tossing and obfuscation.

Normally there could be something to be said about following a heavy set of procedures, but they don't even do that! They seem to be making things up on the fly, and are doing a terrible job of it. All taking years to eventually do nothing.
 
Trish said:
We have had nothing official from Cochrane except standard 'we are still investigating' emails relating to our complaints.
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Speaking of which, do we even have any idea what they are doing with the past complaints? Because they asserted that this review is done and gone and will not be revisited, which doesn't suggest the possibility that those complaints are taken seriously, since they are all about this very process they declared to be dead in the water.

My guess is not, and that they only ever treated as a pesky PR issue. But who knows with these people? They act in complete secrecy and impunity while violating not just their own rules but the very ideas behind their existence.
 
rvallee said:
Am I missing something here that from Cochrane's rules the 2019 update also should not have been considered a new update, and thus retain its prior version number and date? It seems to fit their criteria for an amendment, but there was no literature search or update as required for a proper new version.
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Our understanding, as we said in today's complaint, is they have broken their own rules.
 
Utsikt said:
I wonder what kind of leverage the BPS lobby has on them. Surely they must have known that S4ME and pwME wouldn’t give up on this.
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I guess now there isn't an active project happening, they reckon anything we and others submit can be simply rejected by saying the subject is closed. And dating the new copy of the old review 2024, they have done what the BPS lobbyists want, so those complainants have won and will stop nagging them. Also I think the dating 2024 is intended to close the subject for another 5 years. So they can reject any bid by a new group to do an updated review.
As we said, all very unethical.
 
I understand what the lobby wanted and why. But I don’t understand what kind of leverage they had on Cochrane to get them to agree to doing it that way.

Cochrane must have understood that pwME would not let this pass, so something must have made them think that it was worth it to please the lobby rather than following their own mission, purpose and protocols.
 
Jonathan Edwards said:
They are 'Cochrane'.
The Editor in Chief was appointed by them.
Their mission is to encourage therapies manageable in primary care.
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But Cochrane has a long history of doing reviews in non-behavioural areas - all sorts of drugs and surgery for all sorts of conditions, and I'd have thought that those reviews would outnumber the behavioural stuff by a long shot.

I'm confused about how and why a bunch of BPSers would have produced Cochrane in its early form, at least.

Did they start out clean and get subverted?
 
Sasha said:
I'm confused about how and why a bunch of BPSers would have produced Cochrane in its early form, at least.

Did they start out clean and get subverted?
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We have very long threads discussing all of this @Sasha. You probably switched off for those.

Cochrane was set up by a group of physicians who were worried about medicine being taken over by high tech Pharma as far as we can work out. That was a reasonable concern because big Pharma were pushing for more and more money being spent on drugs that might not work very well. But from the start the instigators were people with an interest in primary care and low tech medicine that could be run by generalists. They included Paul Glasziou, who has an evangelical attachment to exercise.

They were supposed to have a primary commitment to high quality evidence but it seems this was only ever a weapon they could wield against big Pharma. In areas like mental health and physio where they approved of low tech treatments they were less keen on the rigour of evidence analysis. This was almost certainly the case all along. But to begin with the reviews were mostly of high tech drugs. I suspect that reviews of therapist delivered treatments have become more common recently. The balance has swung to scrutinising low tech and the founders don't like the way things are going.

People who take up this sort of quality policing work tend not to be the people who best understand what quality requires. They tend to be people who like things tidy rather than people who understand the complexity of the evidence or of the human nature that influences it. McMaster were the same - as we see with Jason Busse and Gordon Guyatt.
 
What is happening is obviously not the editor in chief’s decision alone. In 2017?2018 Tovey listened to well argued patient submissions and agreed to withdraw the 2017 version of Larun et al. However then the external and internal pressure began. Cochrane changed its policy to make it harder to withdraw a review and a long struggle began to produce a redraft of Larun et that responded to the recognised the identified problems within the review.

In 2019 the new editor in chief, Karla Soares-Weiser, agreed to publish Larun et al in 2019 despite it not adopting all the recommendations of an independent arbitrator. However she recognised the failings and had added an editorial note promising a completely new review to ultimately replace Larun et al. Presumably this represents a compromise between those within who the recognised flaws of Larun et al and its defenders, so at this point Karla Soares-Weiser was still seeking a scientifically acceptable outcome.

In early 2023 the writing group submitted the protocol for the replacement review, but it is not know who saw this, certainly it did not reach the independent advisory group. It seems around this time that a group of unnamed supporters of Larun et al, either inside or outside Cochrane raised complaints that delayed any further progress for a around year with this being discussed at various levels within the organisation. However the new review process was supposedly restarted in late 2023. Unfortunately at this time Cochrane adopted the policy of not having any officers’ names attached to external communication relating to complaints and responses on this and presumably other issues. So it is not clear what decisions were made by the editor in chief in person, though she still ultimately must be considered responsible.

Presumably the pro Larun et al pressure continued and no externally obvious progress seems to have been made. It is reported that in September 2024 the governing board made a decision to abandon the new review process, which was publicly announced in December of the same year but this time the editor in chief is not named in the attached editorial note committing Cochrane’s ongoing support for the 2019 version now misdated as 2024. So it is unclear now what Karla Soares-Weiser views are.

However whatever happened it would seem that successive editors in chief have been blocked and over ruled at various stages in the process.
 
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Peter Trewhitt said:
What is happening is obviously not the editor in chief’s decision alone. In 2017?2018 Tovey listened to well argued patient submissions and agreed to withdraw the 2017 version of Larun et al. However then the external and internal pressure began. Cochrane changed its policy to make it harder to withdraw a review and a long struggle began to produce a redraft of Larun et that responded to the recognised the identified problems within the review.

In 2019 the new editor in chief, Karla Soares-Weiser, agreed to publish Larun et al in 2019 despite it not adopting all the recommendations of an independent arbitrator. However she recognised the failings and had added an editorial note promising a completely new review to ultimately replace Larun et al. Presumably this represents a compromise between those within who the recognised flaws of Larun et al and its defenders, so at this point Karla Soares-Weiser was still seeking a scientifically acceptable outcome.

In early 2023 the writing group submitted the protocol for the replacement review, but it is not know who saw this, certainly it did not reach the independent advisory group. It seems around this time that a group of unnamed supporters of Larun et al, either inside or outside Cochrane raised complaints that delayed any further progress for a around year with this being discussed at various levels within the organisation. However the new review process was supposedly restarted in late 2023. Unfortunately at this time Cochrane adopted the policy of not having any officers’ names attached to external communication relating to complaints and responses on this and presumably other issues. So it is not clear what decisions were made by the editor in chief in person, though she still ultimately must be considered responsible.

Presumably the pro Larun et al pressure continued and no externally obvious progress seems to have been made. It is reported that in September 2024 the governing board made a decision to abandon the new review process, which was publicly announced in December of the same year but this time the editor in chief is not named in the attached editorial note committing Cochrane’s ongoing support for the 2019 version now misdated as 2024. So it is unclear now what Karla Soares-Weiser views are.

However whatever happened it would seem that successive editors in chief have been blocked and over ruled at various stages in the process.
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Nice 2021 Simply got in the way- there could no longer be business as usual and subversion is all that's left to maintain a paradigm, Once the bps lobby Had no effect Despite trying hard.
 
Utsikt said:
I wonder what kind of leverage the BPS lobby has on them. Surely they must have known that S4ME and pwME wouldn’t give up on this.
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I doubt there's any of this happening. They just agree with them. To the point where they think that behaving unethically, violating their own rules and standards and generally committing malfeasance is acceptable.

Never attribute to malice what good old incompetence explains perfectly. We have seen how totally incompetent those fools are. It really does explain it all. They believe in this stuff, and lacking any substantial accountability or oversight they use whatever means will achieve their ends.

The same applies to the broader health care industry not just accepting garbage research but calling it "well-designed" like it's a religious edict. They simply agree with it and think no further about it.

It's the same reason why polluting industries need little coordination to weaken regulations. They just want the same thing.
 
Jonathan Edwards said:
In areas like mental health and physio where they approved of low tech treatments they were less keen on the rigour of evidence analysis. This was almost certainly the case all along. But to begin with the reviews were mostly of high tech drugs. I suspect that reviews of therapist delivered treatments have become more common recently. The balance has swung to scrutinising low tech and the founders don't like the way things are going.
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Which, presumably, is why they pushed Peter Gøtzsche out, as his work on stuff like placebo effect sizes and problems with unblinded subjective outcomes was exposing them and their sub-standard methods and bogus claims.
 
Sean said:
Which, presumably, is why they pushed Peter Gøtzsche out, as his work on stuff like placebo effect sizes and problems with unblinded subjective outcomes was exposing them and their sub-standard methods and bogus claims.
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Although it sounds like Gøtzsche is something of a complex character, the section of his Wikipedia entry on the expulsion from Cochrane makes interesting reading:
Gøtzsche, who had been elected to the Governing Board in 2017,[32] was expelled from the Board and the organization after a 6 to 5 vote of the 13-member board at the annual meeting in Edinburgh, Scotland, in September 2018.[33] The Board announced the step on September 26 expelling Gøtzsche because of an "ongoing, consistent pattern of disruptive and inappropriate behaviours ..., taking place over a number of years, which undermined this culture and were detrimental to the charity’s work, reputation and members."[2]

Gøtzsche, critical of the pharmaceutical industry and what he sees as its influence on medicine, expressed concern about "growing top-down authoritarian culture and an increasingly commercial business model" at Cochrane that "threaten the scientific, moral and social objectives of the organization."[32] He stated that "Cochrane no longer lives up to its core values of collaboration, openness, transparency, accountability, democracy and keeping the drug industry at arm’s length."[34] After the expulsion, four members of the Board resigned and two had to leave to restore a balance between appointed and elected members, throwing the organization into turmoil.[33]

Gerd Antes of Cochrane Deutschland interpreted the situation as a "governance crisis" and called for "the strict orientation on the objectives and fundamental principles of Cochrane" naming "(s)cientific rigour, knowledge with minimal bias, maximum trust and consistent safeguarding against interest-driven influence on the evidence" as primary.[35

see https://en.wikipedia.org/wiki/Peter_C._Gøtzsche
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