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

Discussion in '2021 Cochrane Exercise Therapy Review' started by S4ME News, Dec 22, 2024.

  1. Eleanor

    Eleanor Senior Member (Voting Rights)

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    It would be interesting to know which other reviews this refers to.
     
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  2. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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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.
     
  4. rvallee

    rvallee Senior Member (Voting Rights)

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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.
     
  5. Trish

    Trish Moderator Staff Member

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    Our understanding, as we said in today's complaint, is they have broken their own rules.
     
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  6. Utsikt

    Utsikt Senior Member (Voting Rights)

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    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.
     
  7. Trish

    Trish Moderator Staff Member

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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.
     
  8. Utsikt

    Utsikt Senior Member (Voting Rights)

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    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.
     
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  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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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  10. Utsikt

    Utsikt Senior Member (Voting Rights)

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    That’s bleak…
     
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  11. Sasha

    Sasha Senior Member (Voting Rights)

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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?
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But it is a step forward to know the reality - and to be able tell everyone else about it.
     
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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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.
     
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  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Thanks for that summary, @Jonathan Edwards.

    What a terrible waste of a great concept. Cochrane could have been such a force for good.
     
  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    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.
     
    Last edited: Feb 6, 2025
  16. Amw66

    Amw66 Senior Member (Voting Rights)

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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.
     
  17. rvallee

    rvallee Senior Member (Voting Rights)

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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.
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Could have been a true Scotsman. Alas it was but a pale imitation.
     
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  19. Sean

    Sean Moderator Staff Member

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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.
     
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  20. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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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:
     
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