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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 24 of 45
  1. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    Peter Trewhitt, Jan 27, 2024
    #461
    Hutan, Joh, Ash and 10 others like this.
  2. Andy

    Andy Committee Member

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    Andy, Feb 2, 2024
    #462
    Hutan, alktipping, Ash and 10 others like this.
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    And they also shared on Facebook
     
    NelliePledge, Feb 2, 2024
    #463
    Hutan, alktipping, Ash and 4 others like this.
  4. Andy

    Andy Committee Member

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    Andy, Feb 6, 2024
    #464
    Hutan, Kitty, Amw66 and 16 others like this.
  5. Ash

    Ash Senior Member (Voting Rights)

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    This is so good!!!

    Thanks everyone who has worked so hard to write, promote the petition getting the word out about the negative influence of the review on our access to healthcare, thank you also to everyone out there who supported and signed this petition. :hug:
     
    Ash, Feb 6, 2024
    #465
    Hutan, Joh, Kitty and 11 others like this.
  6. NelliePledge

    NelliePledge Moderator Staff Member

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    NelliePledge, Feb 12, 2024
    #466
    Hutan, alktipping, Kitty and 9 others like this.
  7. Andy

    Andy Committee Member

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    Andy, Feb 12, 2024
    #467
    Hutan, alktipping, Kitty and 9 others like this.
  8. Andy

    Andy Committee Member

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    Andy, Feb 12, 2024
    #468
    alktipping, Hutan, Kitty and 11 others like this.
  9. Trish

    Trish Moderator Staff Member

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    The committee has added a new update on the petition.

    In summary, we say there's no news from Cochrane since the December update from Hilda, and no news on S4ME's committee complaints since we heard some of them are being considered.

    Petition update:
    https://www.change.org/p/cochrane-w...19-exercise-therapy-for-cfs-review/u/32345087

    Copy on the open letter thread:
    https://www.s4me.info/threads/s4me-...rcise-therapy-review.34973/page-2#post-515335

    I have asked Hilda on her talk page whether there's any news. My post there awaits moderation.
    https://www.s4me.info/threads/cochr...a-bastians-talkpage.36153/page-13#post-515318
     
    Trish, Feb 15, 2024
    #469
    Joh, Amw66, Ash and 16 others like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
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    Another anniversary passes in the interminable process of producing a replacement review:

    4 years ago: 13th February 2020
    Appointment of lead to independent advisory group

    "Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, said: “Hilda’s appointment marks the first steps in Cochrane’s commitment to update the Cochrane Review on exercise therapy for chronic fatigue syndrome. We look forward to learning from the process of involving an independent advisory group of patients, clinicians and researchers in the development of Cochrane Reviews.”"

    Hollow words.
     
    Trish, Feb 17, 2024
    #470
    Yann04, JemPD, Joh and 20 others like this.
  11. Sean

    Sean Moderator Staff Member

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    Particularly in light of the fact that they don't really seem to be grasping the core problem of methodology, or even want to.
     
    Sean, Feb 17, 2024
    #471
    JemPD, Amw66, Ash and 9 others like this.
  12. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    I don't Hilda think is independent any more as she has recently been awarded membership of Cochrane https://www.cochrane.org/news/cochrane-lifetime-and-emeritus-members. She was always very quick to say she was suitable for the role because she wasn't a member of the organisation any more (having left because of their lack of progress on open access), although she was a founder member.
     
    Caroline Struthers, Feb 17, 2024
    #472
    Hutan, Chezboo, MEMarge and 10 others like this.
  13. NelliePledge

    NelliePledge Moderator Staff Member

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    NelliePledge, Feb 18, 2024
    #473
    Hutan, Joan Crawford, MEMarge and 13 others like this.
  14. Andy

    Andy Committee Member

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    Action for ME Twitter account report that
    "The APPG has agreed to sign the S4ME open letter to Cochrane requesting urgent action to be taken on the 2019 ME/CFS Exercise Therapy Review"

     
    Andy, Feb 20, 2024
    #474
    Skycloud, bobbler, Joan Crawford and 22 others like this.
  15. Andy

    Andy Committee Member

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    Andy, Feb 20, 2024
    #475
    bobbler, Joan Crawford, Hutan and 10 others like this.
  16. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    4,216
    Great news!
     
    Peter Trewhitt, Feb 20, 2024
    #476
    bobbler, Joan Crawford, oldtimer and 11 others like this.
  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    2,633
    Are they signing petition? Or open letter? Or both?


    edit: apologies. I see it is the open letter.
     
    Last edited: Feb 20, 2024
    Binkie4, Feb 20, 2024
    #477
    bobbler, Joan Crawford, Hutan and 6 others like this.
  18. Ash

    Ash Senior Member (Voting Rights)

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    Amazing news really! :emoji_beers:
     
    Ash, Feb 20, 2024
    #478
    bobbler, Joan Crawford, Hutan and 12 others like this.
  19. Andy

    Andy Committee Member

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    Andy, Feb 21, 2024
    #479
    Kitty, bobbler, Joan Crawford and 6 others like this.
  20. Andy

    Andy Committee Member

    Messages:
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    Just to highlight that the link in this section of the update is broken,
    "An update from the Cochrane IAG
    There was an update from Cochrane's Independent Advisory Group for the planned new review on 20 December 2023 - available here "
     
    Andy, Feb 21, 2024
    #480
    Kitty, bobbler, Joan Crawford and 6 others like this.
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