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

Discussion in 'Petitions' started by Hutan, Sep 4, 2023.

  1. Joan Crawford

    Joan Crawford Senior Member (Voting Rights)

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    Fab thanks :)

    The name is:

    Chester MESH self help group

    Many thanks
    Joan
     
    Binkie4, Ash, MEMarge and 6 others like this.
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    UK West Midlands
    Binkie4, Ash, MEMarge and 6 others like this.
  3. Andy

    Andy Committee Member

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    21,980
    Location:
    Hampshire, UK
  4. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    834
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    Oxford UK
    Last edited by a moderator: Mar 7, 2024
    Midnattsol, Amw66, EzzieD and 11 others like this.
  5. Andy

    Andy Committee Member

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  6. Trish

    Trish Moderator Staff Member

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    52,417
    Location:
    UK
    The committee has sent a new letter to key people at Cochrane, posted on the letter thread:
    https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-2#post-521800
    It's quite long, so I'll summarise it in the next post.
     
  7. Trish

    Trish Moderator Staff Member

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    52,417
    Location:
    UK
    Summary of the latest S4ME letter to Cochrane:

    We mark the fact that it's 6 months since we first wrote to Cochrane and no action has been taken on our requests, and no progress has been made on the new review.

    We formally present the petition to Cochrane and encourage them to read the comments on it.

    We request that the decision not to withdraw the 2019 Larun review be reopened urgently on the grounds of harm.

    We give 10 grounds related to the harms caused by GET for the review to be withdrawn, under these headings:

    Evidence in support of withdrawal

    1. Withdrawal of the review is in line with Cochrane's editorial policy

    2. Cochrane's guidance to reviewers has not been followed

    3.The 2019 review failed to properly consider evidence of harms.

    4. Patients' perceptions of harm should be considered as relevant as patients' perceptions of improvement

    5. The harms are considerable

    6. New evidence of harms supports withdrawal

    7. Two conflicting paradigms

    8. The harms include effects on patients’ mental health

    9. Biases and conflicts of interest of advisors to the review

    10. The NICE approach to harms evidence, and the pushback from GET supporters
    _________________

    The letter is signed by me and the committee. Although I drafted and edited the letter, several committee members and staff helped with additional suggestions and improvements, for which I thank them.
     
  8. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,682
    Thank you @Trish and all involved for all the work gone into this letter. It is hard to see how anyone with a modicum of sense could continue to ignore these points.

    One can only conclude that Cochrane management are now deliberately avoiding any meaningful consideration of these issues, placing their reliance on a small number of pro GET activists, some with very close links to Cochrane, over and above any pretence of scientific balance.
     
  9. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    Location:
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    seemingly in short supply @ Cochrane Towers!
     
    ahimsa, alktipping, obeat and 8 others like this.
  10. Hutan

    Hutan Moderator Staff Member

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    A update about our most recent letter to Cochrane has been posted on the petition - the update looks a lot like Trish's summary above.

    If you haven't had a look at the petition yet, please do. Here's the link: https://chng.it/xwQ9bGgcdL
     
  11. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Related to ongoing harms from uncorrected guidance: the UK Covid enquiry is hearing from families of those with eg intellectual disabilities who were denied ICU care and died in the early stages of the pandemic. Thousands of disabled people died after ‘Covid treatment withheld’, inquiry to probe (iNews)

     
    mango, Maat, alktipping and 8 others like this.
  12. Andy

    Andy Committee Member

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    Hampshire, UK
  13. Maat

    Maat Senior Member (Voting Rights)

    Messages:
    201
    Question:

    Does anyone know if NICE issued a statement concerning the possibility of harm resulting from treatment of ME between this specific date parameter?

    24.1.2019 - 2.10.2019

    The end date being the date Cochrane published the amended version of the Review. Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome’ | Cochrane

    If they did, can someone point me in the direction of a link to it please?

    ETA: Also, what is the average timeframe from decision to conduct a review and it's publication?
     
    Last edited: Mar 25, 2024
    Amw66, Peter Trewhitt and bobbler like this.
  14. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    There is a recent research paper that looks at this question that has a thread here. I will try to find it, but I have specific problems in coping with how larger amounts of information are structured.

    [added - I found the link more easily than expected - https://www.s4me.info/threads/half-...after-the-protocol-2020-andersen-et-al.37474/ “Half of Cochrane reviews were published more than 2 years after the protocol, 2020, Andersen et al.” ]
     
    Last edited: Apr 10, 2024
    MEMarge, Kitty, bobbler and 1 other person like this.
  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Sorry, although the thread here was recent, the article itself is from 2020. See https://www.jclinepi.com/article/S0895-4356(20)30124-4/abstract . I haven’t yet found access to the full text that is not behind a paywall.
     
    MEMarge, Kitty, Trish and 1 other person like this.
  16. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,682
    Just found a potentially relevant article:

    Use of inactive Cochrane reviews in academia: A citation analysis
    • Open access
    • Published: 12 April 2023 Volume 128, pages 2923–2934, (2023)
    see https://link.springer.com/article/10.1007/s11192-023-04691-9

     
    MEMarge, Kitty, EzzieD and 4 others like this.
  17. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,682
    Also from 2021:

    Most Cochrane reviews have not been updated for more than 5 years.
    Hoffmeyer BD, Andersen MZ, Fonnes S, Rosenberg J

    See https://europepmc.org/article/med/34427395

     
    MEMarge, Kitty, EzzieD and 5 others like this.
  18. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,682
    I have been pondering Cochrane’s latest response to our communication posted on the 2023 Open Letter to Cochrane thread (https://www.s4me.info/threads/s4me-...e-me-cfs-exercise-therapy-review.34973/page-2)

    Yet again it has no one individually identified as a signatory, and yet again it commits to no clearly specified action and no specified time scale. Obviously the intent to ‘review the issues raised’ as part of a ‘thorough process’ is commendable, but what will that process involve and at what level will it be undertaken/overseen? When can we reasonably object if nothing happens? The promise of updating the Project Website ‘in the short term’ remains very vague as to timescale, especially given we were informed some months ago that such update was already imminent.

    I have from this no idea whether Cochrane intend to take our concerns and formal complaints seriously or if this represents yet further attempt to avoid the substantive issues by prevarication and delay tactics. What is most worrying is that, though there have been some expression of regret about ongoing delays, as far as I have seen there has been no acknowledgment of the vital importance of addressing the potential/likely significant harms arising from any interventions based on the 2019 Exercise Review either directly from Cochrane or via Hilda Bastian.
     
    Missense, MEMarge, Sean and 11 others like this.
  19. Trish

    Trish Moderator Staff Member

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    I think the latest reply from Cochrane is little more than an acknowledgement of receipt of our letter, sent simply because their standard automated response to all emails includes a promise of a reply within 3 weeks, so they had to send something now the 3 weeks are up.

    Basically it says there will be updates when they get around to it, and there is no timescale for their investigation into our complaints, but it will be long.

    It's shameful. You'd think we were complaining our cup if tea wasn't hot enough or a button fell off our jacket, for all the urgency they are showing.

    This is about people's health and lives.

    We might as well not have bothered.
     
    Arvo, Missense, mango and 17 others like this.
  20. Ravn

    Ravn Senior Member (Voting Rights)

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    Location:
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    :hug:
    I suspect the people at Cochrane wished you hadn't bothered either... because their pathetic non-reponses seem to suggest they actually are very much bothered (and are hoping that by delaying long enough they can make it all go away; looks like this will be a contest of who is going to be the most stubborn)
     
    HolyScrod, Arvo, Missense and 17 others like this.

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