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ME charities' response to the Reuters article

Discussion in 'PsychoSocial ME/CFS News' started by Andy, Mar 20, 2019.

  1. JaimeS

    JaimeS Senior Member (Voting Rights)

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    INTERESTING YOU SHOULD SAY THAT.

    My research says, when the 'old way' is challenged, two things happen:
    • Change the tone but not the heart of the message
      • ME is totally 'real'!
      • It's real to the patient
      • It's not malingering
      • ...but mysteriously it should still be treated precisely as though it were
    • Appropriate the language and methodology of what is fought against
      • "We are being harassed/belittled"
      • "We are being victimized"
      • "We are being silenced"
      • Basically, the other side has been successful? Steal their schtick.
    The point is to come out on top, not even to stick to any particular ideology.

    It's not conscious. It's literally they see a method has been effective for us and they're like, weee should be using that method.
     
    Last edited: Mar 25, 2019
  2. JaimeS

    JaimeS Senior Member (Voting Rights)

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    ....huh. Actually it works both ways.

    If you have done something terrible, also accuse the other side of having done precisely that.

    Looking forward to hearing that we've been gaslighting them.
     
  3. RuthT

    RuthT Senior Member (Voting Rights)

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    It’s called ‘owning the room’. They are experts & deploy all the armoury in their professional skill set. I would love to see them questioned forensically by a Parliamentary Committee or by a QC in court, under oath.
     
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  4. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Well there was that Tribunal that one time. :rolleyes:

    I remember reading that and being honestly a little shocked at how OPENLY dismissive the ruling was re: claims of harassment in particular. I had always thought that there are nutty people in every population and that it was totally possible the PACE authors had heard some really nasty stuff.

    But when they did their best to prove it, they could not. They were (almost literally) laughed from the room.
     
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  5. Sean

    Sean Senior Member (Voting Rights)

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    :D
     
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  6. Mithriel

    Mithriel Senior Member (Voting Rights)

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    I read this definition, it is not language I would use but it was very to the point.

    There are people who tell the truth, then there are people who lie. Liars are concerned with the truth because they want to hide it. Then there are bullshitters who don't care about the truth only the effect their statements have on listeners.
     
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  7. rvallee

    rvallee Senior Member (Voting Rights)

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    A fact that was cowardly left out of all articles published promoting their victim status. It's a material fact that reflects a strongly negative judgment on their credibility, highly relevant to the context and it was completely whitewashed.

    Complete abdication of basic journalistic ethics in the promotion of a harmful, and mostly false, narrative. Pathetic.
     
  8. Adrian

    Adrian Administrator

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    They do own the room because they control the message going to journalists. But we shouldn't forget the way the situation has changed. The data has been released. Patients have pulled together analyses which show they are misleading people and published them in academic literature. Cochrane have reluctantly acknowledged that they are wrong. We have changed the overall narrative of the story but when they put stories out they control them and because they are in a position where they are not challenged by journalists they can do that.

    I tend to think the real answer is to look towards the long term and keep up the pressure by pointing out the bad science and bad methodology the practice. At the same time we need to be putting a message forward about exciting scientific directions where researchers are starting to go.

    I don't think we can take their room off them but we can make their room less important. They will occasionally shout out of the window and be amplified by their friends in the media but if we get more positive messages out then those stories look increasingly strange (which is what is already happening with Sharpe).
     
  9. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    I made a video response to Sharpes interview.

     
  10. Trish

    Trish Moderator Staff Member

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    Good video, thank you @Adampwme. You have managed to put together in just 5 minutes clips and statements that show the other side of the Sharpe/PACE story very clearly.
     
    Last edited: Mar 31, 2019
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  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    brilliant....520 views already
    maybe it should be in its own thread in the advocacy forum to attract maximum reach of members?
     
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  12. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Could S4ME tweet/facebook the video @Andy ?

    It's a good video @Adam pwme thank you for your work.
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    earlier in this thread someone @Suffolkres (?) contacted Jerome Burne.
    apologies if this has already been posted, but he tweeted re the PACE trial and MS was not amused.





     
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  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Brilliant. Jerome got a result!
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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