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Michael Sharpe skewered by @JohntheJack on Twitter

Discussion in 'General ME/CFS news' started by Indigophoton, Apr 9, 2018.

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Page 16 of 114
  1. Alvin

    Alvin Senior Member (Voting Rights)

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    Most trials are short term, few look for long term effects and most drugs never get tested for long term effects.
    That said i think there was a followup (or was there supposed to be) who knows what happened there
     
    Alvin, Apr 23, 2018
    #301
    janice, alktipping and Arnie Pye like this.
  2. Adrian

    Adrian Administrator Staff Member

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    There was a 2.5 year follow up for PACE which Sharpe spun as supporting PACE (because improvements remained) but the other arms caught up. Looking at the TSC/TMG minutes a major part of the follow up should have been economic data but this was never published.

    In addition there were plans that they would do a 5 year follow up and at some point it sounded like they had funding.
     
    Adrian, Apr 23, 2018
    #302
    Jan, alktipping, Joel and 11 others like this.
  3. Alvin

    Alvin Senior Member (Voting Rights)

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    Interesting.
    I suspect when they decided to do the PACE trial they really believed in what they were peddling, the numbers started catching up to them so they had to fudge their way to success. Once they realized they could not support their reality denial they had to scramble to save their enterprise. For a while it worked, patients didn't believe them but they beat them into submission but the dam has broke now and they can only attempt damage control.
     
    Alvin, Apr 23, 2018
    #303
    Jan, Webdog, Hutan and 5 others like this.
  4. MarcNotMark

    MarcNotMark Senior Member (Voting Rights)

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    Do you still think it's him?
    I think someone hacked his Twitter account (activists?), this cannot be real :p
     
    MarcNotMark, Apr 23, 2018
    #304
    Skycloud, Joh, EzzieD and 2 others like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Indeed, its the only plausible explanation :emoji_laughing:
     
    Alvin, Apr 23, 2018
    #305
    Skycloud and MarcNotMark like this.
  6. Sean

    Sean Moderator Staff Member

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    More troubling for Sharpe and co is the slopes of those lines from 52 weeks to 134 weeks (the post-treatment phase of the trial).

    Over that period the slopes for the APT & SMC arms are better on both primary outcome measures than for the CBT & GET arms. Meaning the rate of improvement in the post-treatment phase is better for APT & SMC.

    Furthermore, if you look at the overall shape of improvement rates over time they suggest that CBT & GET are tending to level off asymptotically (i.e the rate of response is reducing over time in a standard decay curve pattern, which is what you would see if the effect was just regression to the mean). But for SMC & APT they are quite different patterns: they either continue to improve at the same rate (SMC on Physical Functioning), or the rate of improvement actually increases (SMC & APT on Fatigue, APT on Physical Functioning).

    Even though the result of the 2.5 year follow-up was null (i.e no statistically significant difference), the slopes in the post-treatment phase suggest that both SMC & APT will deliver significantly better longer term outcomes than CBT or GET (e.g. at 5 years).

    http://www.thelancet.com/cms/attachment/2040675016/2054318872/gr2.jpg

    Figure 2 Fatigue and physical functioning at 2.5year follow-up.jpg
     
    Last edited: Apr 24, 2018
    Sean, Apr 23, 2018
    #306
    janice, Jan, alktipping and 14 others like this.
  7. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Saddened to see that the people and institutions supporting Sharpe are mysteriously unable to click the 'Like' button on his tweets. It makes it look like they don't want to be seen supporting him. I hope he manages to fix the technical problem soon.
     
    Luther Blissett, Apr 23, 2018
    #307
    Maggie, Anna, janice and 22 others like this.
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Absolutely Annie I think this is very important.
     
    MEMarge, Apr 23, 2018
    #308
    Allele, hinterland, alktipping and 4 others like this.
  9. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    I have had to read a lot of BPS rubbish these two past years. But this tweet really takes the cake when it comes to idiocy.

    It's no longer a mystery to me how these people end up with such insane theories. What is one to expect when these clowns are not even able to distinguish between objective and subjective criteria.
     
    Rick Sanchez, Apr 23, 2018
    #309
    Pechius, janice, Solstice and 12 others like this.
  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    I think twitter is providing a diversion to draw you in and use up limited energy resources for something that is disintegrating.

    The IAPT/ illness coding/ MUS/ BDD / mental health act issue is where energy should be focused - it needs wider publicity asap - as it affects so many people with chronic illness ( a lot of which is better understood by the public than ME)
    @Nathalie Wright @Gary Burgess
     
    Amw66, Apr 23, 2018
    #310
    Maggie, janice, Sarah Restieaux and 21 others like this.
  11. hinterland

    hinterland Senior Member (Voting Rights)

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    True. Good point.
     
    hinterland, Apr 24, 2018
    #311
    Luther Blissett, Daisymay, Invisible Woman and 1 other person like this.
  12. Allele

    Allele Senior Member (Voting Rights)

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    Yes, absolutely This ^

    Thank you for tagging journos as well, as this needs to be widely disseminated, and I think should and could gain serious traction bc it effects *all* human people who ever seek medical help for complex or unknown symptoms. Should be headlining every news outlet everywhere relentlessly until it is axed forever.
     
    Allele, Apr 24, 2018
    #312
    Maggie, Pechius, janice and 12 others like this.
  13. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Amw66said
    Is this Sharpe's motive for engaging in this way? Keep us occupied while we think we are moving forward.
    In the meantime, their real work goes on behind the scenes.
     
    Binkie4, Apr 24, 2018
    #313
    Maggie, Inara, adambeyoncelowe and 4 others like this.
  14. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

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    I agree with this. I think we as a community need to change focus a little and stop spending so much energy bombarding him with tweets and contesting everything for days. It’s not going to stop Michael Sharpe from doing anything.
     
    Dr Carrot, Apr 24, 2018
    #314
    Inara, Lidia, hinterland and 5 others like this.
  15. Allele

    Allele Senior Member (Voting Rights)

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    I think there can be no doubt that the real work is going on with gusto behind the scenes. We must keep pulling the curtains!
     
    Allele, Apr 24, 2018
    #315
    janice, Samuel, Inara and 6 others like this.
  16. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    I don't think so. I suspect Sharpe is engaging at least in part because of the optics. To anyone who doesn't know the facts, he will be coming across as reasonable, polite, cordial and very patient with the pwme who keep challenging him.

    To illustrate, consider the conversation below from the point of view of someone who knows nothing much about ME and nothing about PACE (split over two posts because of the forum software limits):

    https://twitter.com/user/status/987412090523660291

    https://twitter.com/user/status/987655526241718272

    https://twitter.com/user/status/987667194044497921

    https://twitter.com/user/status/987711651712569350
     
    Indigophoton, Apr 24, 2018
    #316
    chrisb, Cheshire, Allele and 1 other person like this.
  17. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    Indigophoton, Apr 24, 2018
    #317
    Maggie, fossil, Inara and 10 others like this.
  18. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    I think this is true, but I also think that it's important to have put the other side, as various members of the community have done so well. Unfortunately it's not enough to be right scientifically - I wish it was - there is a political dimension too.
     
    Indigophoton, Apr 24, 2018
    #318
    Maggie, Chezboo, adambeyoncelowe and 7 others like this.
  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Indigophoton
    It's too innocent. It doesn't sound an honest picture to me .....am I being too suspicious?
     
    Binkie4, Apr 24, 2018
    #319
    MEMarge, Inara and adambeyoncelowe like this.
  20. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    @Binkie4 I don't know whether he is a master politician and spinmeister, or whether he genuinely believes what he's saying. I find it hard to get my head around someone not seeing all the flaws here, there and everywhere, but he is so consistent that I'm beginning to think he really has convinced himself that it's all good.
     
    Indigophoton, Apr 24, 2018
    #320
    DigitalDrifter, MEMarge, Binkie4 and 3 others like this.
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