Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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David Tuller needs our help

Discussion in 'General ME/CFS News' started by Countrygirl, May 27, 2017.

  1. JoanDublin

    JoanDublin Senior Member

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    Let them say what they like. They've had the deck stacked against us for years with the many, many paid 'professionals' on their side getting well recompensed to abuse and slander very ill patients, not to mention their never ending pot of other resources including £250k for legal fees to prevent access to their trial data and unfettered access to the SMC giving them full control of the media message. About time we threw a few resources back at them!
     
    taniaaust1, MEMum, Mary and 30 others like this.
  2. lilpink

    lilpink Senior Member

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    I don't see how they could say that and not include themselves in such a description.
     
    MEMum, Mary, Barry53 and 4 others like this.
  3. Kalliope

    Kalliope Senior Member

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    Done.

    As Tuller writes himself on the crowd rising site:
    - There is much, much more investigating, blogging and hammering away to do--about conflicts of interest, about the FINE "sister" trial, about Cochrane's misleading systematic reviews, the false PLoS One claim that the treatments are "cost-effective," etc, etc.

    I'd very much like to see him dig further into all of this, particularly the Cochrane reviews as there were a couple of compatriots of mine (Norwegians) in that Cochrane review group. I spoke briefly to one of them last year, and according to her there's nothing seriously wrong with the PACE-trial, and there's nothing wrong with PACE-researchers in the Cochrane review group.
     
    taniaaust1, MEMum, Mary and 19 others like this.
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Done.

    An investment in my gaining access to appropriate research and treatment.
     
    MEMum, Mary, RL_sparky and 12 others like this.
  5. user9876

    user9876 Senior Member

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    I don't think the Cochrane group understand why PACE is so bad and the issues with methodology and using subjective measures on an open label trial. I don't think they understand the issues with outcome switching because they support PACE doing that and they do it themselves within this review.

    The wider Cochrane group should step in to clean up them propagating bad science. The Cochrane editor knows there are issues and has done nothing and as such I would take that as an indication that he is happy with misleading patients and outcome switching. In the long term it can only damage the Cochrane brand.
     
    MEMum, Mary, Esperanza and 17 others like this.
  6. RogerBlack

    RogerBlack Senior Member

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    Done.
    The concern about outcome switching in the cocnrane review make me wonder how many of their reviews are of genuine high quality.
     
    MEMum, Mary, RL_sparky and 13 others like this.
  7. Jo Best

    Jo Best Senior Member

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    Esperanza, mango, Jennifer J and 8 others like this.
  8. Wolfiness

    Wolfiness Activity Level 0

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    .
    How? Because an urge for consistency does not trouble them, is how .

    [​IMG][​IMG]

    Hwvr, the more we raise the more obvious it will be how many people support this.
     
    MEMum, PatJ, JaimeS and 11 others like this.
  9. Hutan

    Hutan Senior Member

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  10. Kati

    Kati Patient in training

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    Bump!

    David Tuller's efforts are worth supporting. His work has made a big difference in spreading awareness on the damage that PACE has done. Please consider donating so he continues to work on the issue.
     
    Last edited: May 29, 2017
    MEMum, Dolphin, anniekim and 10 others like this.
  11. Esther12

    Esther12 Senior Member

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    We're getting four years for the price of one... sounds a bargain!
     
    MEMum, RL_sparky, Mel9 and 7 others like this.
  12. TiredSam

    TiredSam The wise nematode hibernates

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    Done.
     
    MEMum, RL_sparky, Mel9 and 10 others like this.
  13. adreno

    adreno PR activist

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    Done. I would very much like to see a takedown of the Cochrane review.
     
    MEMum, RL_sparky, Dolphin and 12 others like this.
  14. lilpink

    lilpink Senior Member

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    Mmm I didn't really mean in terms their own imaginings.. I meant in terms of the real world.
     
  15. Valentijn

    Valentijn Senior Member

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    Any indication if he intends to do some FOIA requests to get more data? That entire process is pretty ideal for destroying the health of patients :( It'd be great to have someone healthy doing it.
     
    mango, snowathlete, Dolphin and 8 others like this.
  16. Binkie4

    Binkie4 Senior Member

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    Done. Thanks to David Tuller for a fearless challenge of the Establishment.
     
    MEMum, RL_sparky, Dolphin and 7 others like this.
  17. Large Donner

    Large Donner Senior Member

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    I wonder if John Caudwell could help with all his millions, does anyone have any contact with him via any Organisations?
     
  18. Somer

    Somer

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    Done
     
    MEMum, RL_sparky, Dolphin and 5 others like this.
  19. Starlight

    Starlight Senior Member

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    I was wondering if there is anyway we could keep this thread and the message about David needing out help on the front page of this forum or on the front page of the website until the money is raised. It's just that it is human nature to forget if we are not constantly reminded and this feels so very important. Maybe people could share this on their Facebook and social media and other forms regularly,like every day of two. It feels like it might be one of our best chances and it's very little money compared to what is usually needed to make a change for us.

    Any one have any other opinions on how we might best get it out there and keep it in the community consciousness?
     
    MEMum, Esperanza, Dolphin and 5 others like this.
  20. OverTheHills

    OverTheHills

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    Done. From the total so far the appeal looks to have started well.
     
    MEMum, RL_sparky, Dolphin and 3 others like this.

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