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Analysis: “Nothing about us without us”—patient partnership in medical conferences, 2016, Chu et al

Discussion in 'Other health news and research' started by Andy, Feb 19, 2019.

  1. Andy

    Andy Committee Member

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    Open access at https://www.bmj.com/content/354/bmj.i3883
     
    Andy, Feb 19, 2019
    #1
    Michelle, shak8, Invisible Woman and 9 others like this.
  2. Trish

    Trish Moderator Staff Member

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    My concern about patient involvement in ME research is - which patients?

    It seems all too easy for the BPS people to find patients to form their advisory groups who agree with everything they say, either through having had a good experience with the therapy because they didn't have ME in the first place and got better, or because they don't yet realise the harm that CBT/GET can do.

    Crawley claims, I think, to work with a patient/carer group, and AfME were complicit in PACE.

    I don't know how this can be solved.
     
    Trish, Feb 19, 2019
    #2
    Michelle, Invisible Woman, Dolphin and 16 others like this.
  3. Andy

    Andy Committee Member

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    I think that's only solvable by as many of us, who can, getting involved. I can well imagine that in any scenario, in ME research or not, that it will tend to be the supporters of a particular researcher and/or research theory who end up in an advisory group.
     
    Andy, Feb 19, 2019
    #3
    Michelle, shak8, Invisible Woman and 11 others like this.
  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Agreed. It's too easy to be seen to be doing the right things with regard to "involvement", while you're actually stacking the deck against any substantial changes being made.
     
    Snow Leopard, Feb 20, 2019
    #4
    Michelle, Invisible Woman, MSEsperanza and 7 others like this.
  5. rvallee

    rvallee Senior Member (Voting Rights)

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    That seems to be the operating procedure in Norway, with the LP coaches basically being presented as patient advocates who have recovered and are spreading the gospel of the totally-not-snake-oil-cult LP.
     
    rvallee, Feb 20, 2019
    #5
    Invisible Woman, ukxmrv, MSEsperanza and 1 other person like this.
  6. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    MSEsperanza, Oct 9, 2020
    #6
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  7. Andy

    Andy Committee Member

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    I wish.
     
    Andy, Oct 9, 2020
    #7
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    NelliePledge, Oct 15, 2020
    #8
    MSEsperanza and Andy like this.

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