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. S4ME News

    S4ME News S4ME News Summaries Staff Member

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    Moderator note:

    Since Cochrane cancelled the update of the Larun 2019 review and republished it unchanged as the 2024 review there has been much discussion over several threads. Now that action is beginning to happen we have decided to bring discussion together on this thread.

    Posts about recent developments have been moved here from the following threads:

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

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

    Parts of some news posts have been copied here to give a brief background to this thread.

    News in Brief Week beginning 16th December 2024

    Cochrane announcement

    Update on ‘Exercise therapy for chronic fatigue syndrome’
    Announcement quoted in full:
    "In 2019, Cochrane published an amended version of the review 'Exercise therapy for chronic fatigue syndrome’ and, at that time, announced an intention to further update the review. Due to insufficient new research in the field and a lack of resources to oversee this work, the update will not be proceeding.
    Any feedback on this decision should follow Cochrane’s established complaints process. Any correspondence sent directly to individuals at Cochrane will not be considered. Monday, December 16, 2024"
    Announcement | Thread

    'New' version
    Cochrane has taken the unusual step of republishing the 2019 Larun et al review as a 'new' version dated 19th December 2024. The only change to the text is the addition of an editorial note which concludes:
    "The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review. A pilot project for engaging interest holders in the development of this Cochrane review was initiated on 2 October 2019 (see Editorial Note below) and has now been disbanded. Cochrane maintains its decision to publish this Cochrane review in 2019."
    2024 review | Thread

     
    Last edited by a moderator: Jan 24, 2025
  2. forestglip

    forestglip Senior Member (Voting Rights)

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    Just noting that PubMed now has a note below the abstract that says the 2024 version is an update of the 2019 version.
    upload_2025-1-17_15-38-48.png

    This is still incredible to me. The "update" is that there will be no update: "The Editorial note has been agreed to inform readers that Cochrane is ceasing the production of a full update of this Cochrane review."

    The last "update" from 2017 to 2019 wasn't any more useful: "A statement from the Editor in Chief about this review and its planned update is available here: https://www.cochrane.org/news/cfs". Was that the whole update for 2019?

    So you can just make your paper as new as you want by adding random little messages?
     
  3. Ash

    Ash Senior Member (Voting Rights)

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    Apparently.
     
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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Any other reviews share the same fate I wonder ... ( Rhetorical)
     
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  5. Trish

    Trish Moderator Staff Member

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    An important question. This reissuing a 5 year old review as if it were a new version (which is itself a minor revision of an older review) shouldn’t be allowed. It's unethical and surely fraudulent.
     
  6. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Ann Milne made another comment on the Exercise review in December and the authors (Larun) have responded....I think this is the first time Larun has responded since 2015 ( https://www.cochranelibrary.com/cds....pub9/detailed-comment/en?messageId=447334172)

    I have screenshotted Milne's comment and the reply. It seems Larun is replying to a completely different comment as she has changed the heading to make it about GRADE (which it isn't) rather than lack of clarity in the text of the review https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/read-comments

    upload_2025-1-22_10-58-57.png

    upload_2025-1-22_10-57-34.png
     
    Last edited by a moderator: Jan 24, 2025
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  7. Midnattsol

    Midnattsol Moderator Staff Member

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    Ignoring the point of the question and latching on to the use of the world "probably"... not exactly following good practice.
     
    janice, Solstice, alktipping and 10 others like this.
  8. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    But it is standard practice for this group of scientists. Have the PACE supporters even once attempted to meaningfully respond to direct criticism, rather than responding with their own straw man.
     
  10. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I imagine Ann Milne will reply. For Larun to say the point estimate (-3.4) is clinically significant is very misleading (what a surprise) as the confidence interval is -5.3 to -1.6. In short, this means the true effect could be anywhere between these two estimates. So the true effect could be -1.6 which is not clinically significant. I think this is why it's called a non-zero effect.

    Quoting from the results section of the review "If the pooled SMD estimate is re‐expressed on the 33‐point Chalder Fatigue Scale, it corresponds to an MD of −3.4 points (95% CI −5.3 to −1.6)"
    https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full#CD003200-sec-0046
     
  11. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Yes GRADE recommends downgrading for imprecision if the CI crosses the threshold of interest. Which is the case here.
     
    Last edited: Jan 23, 2025
  12. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Any articles on this because it seems like a strange decision.
     
  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    So Larun's answer is 'I still don't understand the basics of trial methodology and like to hide behind 'tools' generated by others who don't understand.'
     
  14. Wyva

    Wyva Senior Member (Voting Rights)

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    Retraction Watch: Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

    Cochrane abruptly ceased communication and made little effort to explain why the pilot was abandoned, said Hilda Bastian, a meta-scientist, writer and cartoonist in Australia who was a founding member of the Cochrane Collaboration. “It’s hard to find a word to describe how badly they treated everybody involved in this,” she said. “It’s been pretty appalling behavior.”

    The review is of “extremely poor quality,” added Jo Edwards, an emeritus professor of Connective Tissue Medicine at University College London. Edwards said he has seen several past versions of the review. “It produces a message, which is contrary to what the NICE [National Institute for Health and Care Excellence] assessment has made and is simply not in the patients’ interest,” he said.

    A petition calling for the review to be withdrawn started in September 2023 and has so far attracted more than 14,000 signatures from concerned patients and researchers.
    Full article: https://retractionwatch.com/2025/01...xercise-therapy-for-chronic-fatigue-syndrome/
     
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  15. Ash

    Ash Senior Member (Voting Rights)

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    :thumbup: Bastian admits Cochrane has been appalling.
    & Proff JE gets to counter Cochranes claims.

    But not loving to see more of Cochranes attitude.
     
    Last edited: Jan 23, 2025
  16. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Quote from the retraction watch article:
    Back in 2019, we made an overview of guidelines and policies that referred to the GET review here:
    https://www.s4me.info/threads/the-influence-of-the-cochrane-review-on-get.11768/
     
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  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    @Trish did cite several examples in her comments on Hilda Bastion’s Blog, and the current Australian guidelines writing process is also relying heavily on Larun et al (2019 misleadingly now redated 2024). Perhaps someone with more reliable memory than me could provide the links.

    Also it is worth using one of the science research search tools to identify the number of times Larun et al have been cited since 2019. I think we are looking at thousands of academic papers citing this out dated and flawed review relating to ME/CFS, to Long Covid and to other conditions.

    It is good to see Hilda now speaking out so openly.

    [added- see next comment for correction “You might be thinking of the article from the Royal Australian College of General Practitioners (RACGP) on 'incremental exercise' for ME/CFS, written by Glasziou, which only cited PACE, Larun Cochrane (2019 version), and for some opaque reason an article on Long Covid research.”]
     
    Last edited: Jan 24, 2025
  18. Sean

    Sean Moderator Staff Member

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    You might be thinking of the article from the Royal Australian College of General Practitioners (RACGP) on 'incremental exercise' for ME/CFS, written by Glasziou, which only cited PACE, Larun Cochrane (2019 version), and for some opaque reason an article on Long Covid research.

    The actual Oz guidelines update process has not really started yet. It has only been announced. The literature review it will be based on is not even being done for another couple of years.

    https://www.racgp.org.au/clinical-resources/clinical-guidelines/handi/a-z/g/graded-exercise-therapy-chronic-fatigue-syndrome

    See the RACGP article.
     
  19. Trish

    Trish Moderator Staff Member

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    It's a pretty good and accurate article. I'm not surprised the Cochrane comment about their withdrawal policy omits to mention that they can withdraw reviews on the ground of harm.
    Good to see our petition quoted.
     
  20. Sasha

    Sasha Senior Member (Voting Rights)

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    It's a pity that comments don't appear to be allowed.
     
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