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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.

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Page 22 of 36
  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,628
    Cochrane offices admin is 'hosted' in Oxford....
    Who else do we know from this location...?
     
    Suffolkres, Nov 20, 2023
    #421
    Missense, Peter Trewhitt, Sean and 1 other person like this.
  2. Ash

    Ash Senior Member (Voting Rights)

    Messages:
    1,646
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    Yes. Friends in high places. But far fewer than before or Cochrane would not be in the difficulties it finds itself in now.

    It seems like someone in a position of authority at Cochrane must of signed off on the decision to refuse our complaint entirely, rather than going for the more traditional route of tick box processing spread out over the longest possible period in order to keep us waiting and ultimately disappoint us. This relatively prompt punch to our impudent faces isn’t quite what I expected.
     
    Last edited: Nov 20, 2023
    Ash, Nov 20, 2023
    #422
    bobbler, Lou B Lou, oldtimer and 2 others like this.
  3. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Karl Morten? Caroline Struthers?
     
    Andy, Nov 20, 2023
    #423
    Peter Trewhitt likes this.
  4. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,628
    I was thinking more of Professor Sharpe..

    Forgive my ignorance but I thought Karl was at the Nuffield and the University?

    Is this the same as NHS Oxford Hospitals Foundation Trust? Or is it separate?
    The NHS FT cites Michael Sparke in their consultant list but not Karl Morton or Caroline.
     
    Last edited: Nov 20, 2023
    Suffolkres, Nov 20, 2023
    #424
    Lou B Lou, Ash and Peter Trewhitt like this.
  5. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    All your post says is Oxford - Karl is in Oxford.
     
    Andy, Nov 20, 2023
    #425
    Ash likes this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
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    Some posts have been moved to News from Cochrane
    Please try to keep posts relevant to the thread topic.
     
    Trish, Nov 20, 2023
    #426
    Ash, alktipping, NelliePledge and 2 others like this.
  7. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
    UK West Midlands
    Thanks to Grupa Wsparcia ME/CFS from Poland for being the latest signatory and to @Mike Harley for help.
     
    NelliePledge, Nov 20, 2023
    #427
    Ash, mango, SNT Gatchaman and 11 others like this.
  8. Andy

    Andy Committee Member

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    Location:
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    Andy, Nov 21, 2023
    #428
    Ash, alktipping, MEMarge and 6 others like this.
  9. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,776
    Takk til ME Foreningen Østfold for supporting the petition!
     
    Midnattsol, Nov 21, 2023
    #429
    Ash, mango, alktipping and 12 others like this.
  10. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
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    Andy, Nov 22, 2023
    #430
    Ash, Sean, alktipping and 8 others like this.
  11. Hutan

    Hutan Moderator Staff Member

    Messages:
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    Location:
    Aotearoa New Zealand
    Many thanks to two ME/CFS research foundations who have added their names to the list of organisations supporting the open letter:
    This brings the number of supporting organisations to 69, from 24 countries.
     
    Hutan, Nov 23, 2023
    #431
    Lou B Lou, Arvo, Joh and 17 others like this.
  12. Andy

    Andy Committee Member

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    23,032
    Location:
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    Andy, Nov 28, 2023
    #432
    Sean, Comet, bobbler and 9 others like this.
  13. Andy

    Andy Committee Member

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    Andy, Dec 7, 2023
    #433
    Hutan, Sean, Amw66 and 9 others like this.
  14. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
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    We've had a burst of signatures from Switzerland - thanks so much to whoever is responsible for promoting the petition there for that.
     
    Hutan, Dec 17, 2023
    #434
    Robert 1973, mango, MEMarge and 15 others like this.
  15. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,837
    Location:
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    The Schweizerische Gesellschaft fur ME said they would cover the petition in their December newsletter
     
    NelliePledge, Dec 17, 2023
    #435
    Robert 1973, mango, MEMarge and 10 others like this.
  16. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Andy, Dec 17, 2023
    #436
    Robert 1973, Hutan, Binkie4 and 12 others like this.
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,374
    Location:
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    PETITION UPDATE
    December update
    DEC 18, 2023

    The day after our last petition update, the S4ME committee sent a letter to the Head of Governance, Cochrane Central Executive Team. You can find the letter here.

    In it, we queried Cochrane's earlier letter where they said first, that they were committed to responding to complaints appropriately, and then, made it clear that they would not be following their published complaints procedure for our complaints.

    We noted the substantial reputational risk that Cochrane runs in continuing to provide a platform for a review that it has acknowledged is flawed, in not acting in a timely manner in the production of a promised replacement review and in continuing to ignore the opinions of so many consumer organisations that the advice the review provides causes harm.

    We noted the double standards, where Cochrane spent over a year investigating a complaint from, presumably, a relatively small group of people who don't want the 2019 Larun review to be replaced. This extensive investigation is reported by Hilda Bastian to have significantly delayed the replacement review and, it appears, has resulted in concessions including more representation of the pro-GET lobby on the "Independent Advisory Group" of the new review.

    We asked Cochrane to confirm that the trustees had signed off on the departure from their published complaints procedure for our complaints. We noted that this would surely be required, given that the complaints were against the actions of senior management, and also given the reputational risks. It would be very odd if it was thought acceptable for a complaint against a Cochrane officer to be evaluated only by that officer.

    We have not yet received a reply.

    ______________

    The S4ME committee is considering what action to take next.

    We intend sometime soon to formally present the petition to the Cochrane trustees, highlighting in doing so the many comments by petitioners, and the names of the organisations supporting this campaign. If we take our complaint to COPE or the UK charity commission, that may need to be done with some level of confidentiality in order to comply with their rules.

    Thank you again to all the individuals who have signed the petition, added your own testimony to the harm exercise therapy has caused to you or your loved ones, and spread the word about the petition to others with ME/CFS and Long COVID and their supporters. Please keep doing so.

    Thank you also to the many organisations who have signed in support. Do please get in touch with the S4ME team on moderators@s4me.info if your organisation wants to sign or has other ideas of ways to help.

    Thank you to the following organisations for adding their names in support of the open letter here bringing the total number of organisations to 69, and, with organisations from Poland and Austria, the number of countries represented to 24.

    Grupa Wsparcia ME/CFS, Poland
    Norwegian ME Association, Østfold region
    ME/CFS Research Foundation gGmbH, Germany
    WE&ME Foundation, Austria

    While Cochrane still hosts a review that recommends exercise as therapy for ME/CFS, the harm continues, so the fight for health and justice must continue too.

    _____________

    We hope that, as this year draws to an end, you have loved ones close and that the new year brings us all peace, joy, good science and compassion.

    Best wishes, the Science for ME team

    _____________
     
    Hutan, Dec 18, 2023
    #437
    Nellie, Michelle, RedFox and 19 others like this.
  18. Andy

    Andy Committee Member

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    Andy, Dec 18, 2023
    #438
    RedFox, Amw66, Binkie4 and 10 others like this.
  19. Andy

    Andy Committee Member

    Messages:
    23,032
    Location:
    Hampshire, UK
    Andy, Dec 21, 2023
    #439
    MEMarge, RedFox, Ariel and 12 others like this.
  20. Science For ME

    Science For ME Forum Announcements

    Messages:
    1,189
    The committee received the following email from Cochrane on Tuesday 19th December, posted on the open letter thread, and also here for comments:
    ______________

    Dear Trish Davis and the Committee of Science for ME international forum,


    Thank you for your correspondence, which has been referred to me.


    We are committed to taking complaints seriously, and to following Cochrane's established processes and procedures. [1] For example, as we note on our website, [2] previous complaints on some of the issues you have raised were also made in 2020. Those were investigated by a sub-group of Cochrane’s Editorial Board and a Cochrane Coordinating Editor, who agreed that the published review did not warrant withdrawal based on those complaints.

    Our procedures can involve referring complaints within the organization, for example, to our conflicts of interest panel. This depends on the matters raised within the complaints, not on who made the complaint.

    We regret the lengthy delays to this project. As indicated in Hilda Bastian’s November report, [3] the next steps for this review are currently in planning. When there is a timetable and further details, this will be included in public updates. As also reported, since the review process will take some time, Cochrane will be working with the Independent Advisory Group on a revised editorial note with the aim of reducing the chances of misinterpreting the current review.

    The Cochrane Governing Board is informed about developments relating to this review. I recognize that this email does not address the concerns and complaints you have sent in previous correspondence. However, the other matters you have raised are under review, and we will get back to you in due course.


    Kind regards,

    Jordi Pardo Pardo

    Interim Chair. Cochrane Governing Board.
    ________________
     
    Science For ME, Dec 21, 2023
    #440
    Ash, Nellie, Ariel and 12 others like this.
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