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Livestream Tuller and Hughes 2 Oct 7.00 pm Newry : The PACE Trial: 'One Of The Greatest Scandals

Discussion in 'Advocacy Action Alerts' started by John Mac, Sep 20, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    @Brian Hughes . A critique of FITNET and MAGENTA in due course would be appreciated, as these will inform NICE deliberations and seem to be full of similar issues.
     
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  2. JoanNI

    JoanNI Established Member

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    Excellent thanks so much please let me know when the transcript is completed as I don’t get on S4ME very much. We have the problem with the first slides fixed and will have DVDs and USBs shortly. The aim is to distribute to influential people and for further PACE educational events.
     
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    And FINE, which was a ridiculous mess possibly worse than PACE in how blatantly it tried to bias the participants.

    http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/
     
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  4. Inara

    Inara Senior Member (Voting Rights)

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    Now I understand what they understand under "fatigue"!

    I think many of us know jetlag...my impression was it's always pretty severe. But I could function absolutely normal without any limitations. It's not comparable what people with ME experience, by far. It's so different that I wonder how ignorant people can be, and over such a long period. Or how bad an observer one can be...
     
  5. Esther12

    Esther12 Senior Member (Voting Rights)

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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Full transcript (have done it this way so people can just copy and paste it into whichever format they want.
    Apologies there were a couple of bits when I think the Internet connection went(?) that I missed out.
    Also, although I have been through it many times, every time I do I find a punctuation or spelling mistake, so there might still be some lurking.

    (as the forum only allows 20,000 characters will have to split it over two posts)
    PART 1
    @Brian Hughes
    @JoanNI
     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    PART 2
    @Brian Hughes
    @JoanNI
     
  8. Trish

    Trish Moderator Staff Member

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    Wow, that was a marathon effort. Thank you @Sly Saint. :trophy@
     
  9. Brian Hughes

    Brian Hughes Senior Member (Voting Rights)

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    Thank you so much for all this work! It is truly impressive endeavour, completed so quickly too. :emoji_cold_sweat:
    As always, it is humbling to see my words resonating like this. I really appreciate the effort you went to to produce such a precise transcript. Thank you again :emoji_dizzy:
     
  10. Brian Hughes

    Brian Hughes Senior Member (Voting Rights)

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    Thank you both. Yes, I appreciate that covering these would be very valuable. I can't promise anything quickly but I do hope to get to them in due course, if I can.
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thank you.
     
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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  13. inox

    inox Senior Member (Voting Rights)

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    Listening to the talk again, it occurs to me - had the PACE-authors just tweeked thing a little bit less, it would have been easier for them to get away with it.

    Had they moved the goalpost just half as long - and gotten rid of the claime of recovery - the results wouldn't have had such an impact around the world, I think. A claim of about 30 % improvement from cbt/get, that wouldn't have gotten as massive media coverage, that's not impressive. And could much easier be debated as a less important finding, of temporarily effect from reciving care.

    There wouldn't be the same need for patients advocates to expose the the trial and what they really did. It would have been a less interesting case-study for scientist and academics to dig into and use.

    But they got gready. Or - had oversold the findings beforehand?

    So here we are.
     
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  14. rvallee

    rvallee Senior Member (Voting Rights)

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    I think it's because of their early promises. Can't remember who found it (on Twitter, IIRC) but their initial predictions was that CBT would have a 6x and GET a 5x recovery rate compared to their "controls". They tweaked the data analysis to match their promises. Going as far as lowering the threshold below entry is the biggest tell. It's a monumentally fraudulent act of desperation that would have sunk them years ago if it wasn't for political influence shielding them from accountability.

    Since the plan was obviously to claim success and that they had evidence of a fully curative treatment protocol no matter what their data showed, they had to oversell it, especially since they had no objective data to support any of their claims. That's what they sold, and got millions for it. Their funders want a damn ROI and it doesn't matter how.

    The NICE guidelines were drafted early with expectations of this success. They could not fail, they had successfully pulled off implementing clinical guidelines without any supporting evidence. Failure would have been career-ending, likely prosecution-worthy. It still is, hence why they overplay their hands at every turn.

    Because this isn't just about us. We're just a stepping stone and failure would have derailed the whole project. This is a group of psychiatrists who is sick of lunching at the far tables in the cafeteria when they think their rightful place is to be the cool kids of medicine.

    Now things are falling apart all over the place, with their psychosophistry having been tried, tested and failed everywhere it's been pushed on defenseless victims. Yet they persist, want to implement it system-wide on all chronic diseases and chronic pain. The "deal with it" approach to medicine.

    They had to oversell it. Their career was built on it.
     
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  15. Andy

    Andy Committee Member & Outreach

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  16. Andy

    Andy Committee Member & Outreach

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    https://notthesciencebit.net/2018/12/14/here-is-a-video-of-my-lecture-on-the-pace-trial-controversy/
     
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