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PACE: Reports from trial participants (GET, CBT)

Discussion in 'PsychoSocial ME/CFS Research' started by Hutan, Jun 25, 2018.

  1. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    I experienced that a few times immediately after a race: my throat (and tongue?) would swell up and then dissipate after about 10 minutes. After the first time, I would go and hang with the paramedics in case it got worse and they needed to epi-pen me.


    Exactly. Ignorance is dangerous.
     
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    I'd be very careful of being charitable on this point. I think it was Trudie Chalder who essentially said that ME consists of feeling tired (because there are no objective, definitive tests) and so if people report that they don't feel tired any more, that's job done.

    Astonishingly, I don't recall any acknowledgement from any of these psychiatrists that patients might be influenced in their reporting of fatigue by any other factor than how fatigued they feel - such as social pressure to appear to be well. This is undergraduate stuff. Just jaw-dropping to me.
     
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  3. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Nail meet head.
     
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  4. JaimeS

    JaimeS Senior Member (Voting Rights)

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  5. JaimeS

    JaimeS Senior Member (Voting Rights)

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  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    But when your physical signs are imaginary, that's fine.
     
  7. Sean

    Sean Senior Member (Voting Rights)

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    So what, in their bizzaro version of science, does count as evidence for a failed therapy?

    Where is the possibility for falsification?

    Sometimes I think they are just taking the piss.
     
  8. Woolie

    Woolie Committee member

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    This:
    Perfectly summarised. Its huge.
     
  9. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    That hasn't been the case for women treated with mesh to hold their pelvic organs in place after prolapse. I don't know what the current situation is, but surgeons continued to use mesh for years after evidence of severe harm became apparent.
     
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  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    We're working on a project about medical harm, I hadn't heard of that one before - do you happen to have a reference handy?
     
  11. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    If you google "mesh prolapse problems" you'll find lots of information.
     
  12. Inara

    Inara Senior Member (Voting Rights)

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    I am not at Twitter and don't understand it :( but thank you
     
  13. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  14. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I've found one of the PACE participant accounts on Virology Blog: http://www.virology.ws/2015/10/30/p...to-david-tuller/comment-page-1/#comment-41476

    I shall keep looking for others...
     
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  15. Lucibee

    Lucibee Senior Member (Voting Rights)

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    And another: http://www.virology.ws/2015/10/30/p...to-david-tuller/comment-page-1/#comment-41500

     
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  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    http://www.virology.ws/2015/10/30/p...to-david-tuller/comment-page-1/#comment-41540

     
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  17. LightHurtsME

    LightHurtsME Senior Member (Voting Rights)

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    I understand this is a personal testimony - but I don't understand how a therapist can be "fantastic" and "caring" when they didn't help and didn't care enough to find out about ME.
     
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  18. Esther12

    Esther12 Senior Member (Voting Rights)

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    https://www.talkhealthpartnership.com/forum/viewtopic.php?f=490&t=4557#p12993
     
  19. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    It's the being "grateful for crumbs" response. Some patients have no one who cares how they are or will listen in detail. Maybe they don't have day to day problems on obtaining care or an income or housing or food. They need someone to listen to them.

    The therapist says that apart from CBT. GE etc there is nothing else that can be done anyway so for this patient it's better than nothing.
     
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  20. Lucibee

    Lucibee Senior Member (Voting Rights)

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    From another thread...

    So far we have too many second-hand accounts. Why are people not coming forward?
     
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