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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.

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Page 41 of 41
  1. Midnattsol

    Midnattsol Moderator Staff Member

    Messages:
    3,999
    I was thinking about clinicians focusing on the importance of mental health of their patients when going to work today, how practical help (and/or better economy) would help more than being sent to CBT. But there is no system for patients to tell clinicians so (especially not after the potential initial happiness of believing you'll get any useful help).

    But my personal experience, and the experience of other sick/disabled people I know, is seen as anecdote. While their own clinical experience that this helps is somehow valid. With some actually believing that patients not coming back means they have recovered not simply given up/changed provider in the hope of getting actual help. Then there are the people who think I am the(ir made believe) classic fatigue patient: I just thought I was ill. Obviously I'm not since I'm working (or when I was a student: studying). No accomodations for you!
     
    Midnattsol, Apr 29, 2025 at 2:33 PM
    #801
    Sean, alktipping, SNT Gatchaman and 5 others like this.
  2. jnmaciuch

    jnmaciuch Senior Member (Voting Rights)

    Messages:
    571
    Location:
    USA
    God, same. “Obviously you’ve harnessed the power of positive thinking to “overcome” your illness. What do you mean you can’t take 4 classes and work for 12 hours straight? Yes I know you have an illness but obviously you’re one of the good ones who can power through it so…”
     
    jnmaciuch, Apr 29, 2025 at 2:40 PM
    #802
    Sean, alktipping, SNT Gatchaman and 5 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    14,568
    Location:
    Canada
    Principles and values, generic meaningless promotional marketing material, who can even tell the difference these days? Almost every word of this is a lie. They value none of this, and act the opposite.

    What is the best place to write a firm but polite message telling what I think of their hollow principles and blatant hypocrisy? I don't see the general contact form being any useful here.
     
    rvallee, Apr 29, 2025 at 2:49 PM
    #803
    alktipping, Hutan, Peter Trewhitt and 2 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    58,975
    Location:
    UK
    Cochrane have rejected both the S4ME appeals about their inadequate responses to two separate complaints.

    It surely can't be a coincidence that they reached their decision within a couple of hours of me sending reminders and asking for a progress report on each appeal.

    This was always going to be the outcome. Nobody at Cochrane has a clue about ME/CFS or seems to care about patients, it's all a big pretence.
     
    Trish, Apr 29, 2025 at 4:32 PM
    #804
    oldtimer, Sean, ahimsa and 15 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    15,742
    Location:
    UK West Midlands
    Using their bureaucracy to make it go away.
     
    NelliePledge, Apr 29, 2025 at 4:33 PM
    #805
    Sean, ahimsa, shak8 and 8 others like this.
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