Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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Petition: Opposing MEGA

Discussion in 'Petitions' started by AndyPR, Oct 19, 2016.

  1. AndyPR

    AndyPR Senior Member

    I can't see it, it may have been deleted as mine has been.
     
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  2. Jo Best

    Jo Best Senior Member

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    Thanks for letting me know.
    I'm blocked by AfME on Facebook and Twitter, but it was thanks to people like yourself posting on their Facebook that my eyes were opened to what's really been going on with these mainstream UK ME charities.
     
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  3. Jo Best

    Jo Best Senior Member

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    Just browsing the #IIMEC12 Twitter feed...
     
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  4. Esther12

    Esther12 Senior Member

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  5. AndyPR

    AndyPR Senior Member

    >We vote 'no confidence' in MEGA research for M.E.

    >A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

    In addition
    • They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding. o_O
    • The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
    • The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.

    https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

    3,241
    signatures
     
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  6. Jo Best

    Jo Best Senior Member

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    Trial by Error, Continued: My Letter to the University of Bristol
    14 JUNE 2017
    By David Tuller, DrPH
    http://www.virology.ws/2017/06/14/trial-by-error-continued-my-letter-to-the-university-of-bristol/

     
  7. Demepivo

    Demepivo Dolores Abernathy

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    @Esther12 I agree that PR members should have contact with the MRC on MEGA & related matters.

    The advocacy groups have had a positive impact on Francis Collins, Head of the NiH, in the US.

    Anybody: who is the Head of the MRC?
    What is their background?
     
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  8. AndyPR

    AndyPR Senior Member

    This is the response from David Marks, editor of the Journal of Health Psychology, to George Davey-Smith's resignation from the editorial board which, apparently, is due to GD-S belief that the recent PACE critiques are "anti-science". Now where have we heard that idea before, that any criticism of any work by the BPS cult is anti-science?? So if anybody was hoping the involvement of GD-S in MEGA would guarantee rigorous scientific standards in anything MEGA does then you might need to rethink that idea.



    Sign the petition here https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
     
  9. Demepivo

    Demepivo Dolores Abernathy

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    @AndyPR I wrote to GDS by email yesterday expressing concern that he had tried to suppress debate on PACE stating that debate is healthy.

    Not expecting a reply but got an out of office message.
     
  10. Demepivo

    Demepivo Dolores Abernathy

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    This thread is now 90 pages long! (Apologies if the questions below have already been answered)

    *Has any individual or organisation contacted the MRC about concerns with the MEGA application to the MRC Tissue programme?

    *Any news emerging about the MEGA application?
     
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  11. Esther12

    Esther12 Senior Member

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    That was my thought too. While being opposed on balance, I was conflicated on MEGA, but it's become completely clear that MEGA is a project that will be used against patients to try to reinforce the positions of people like Crawley and undermine their critics.
     
    Last edited: Jun 28, 2017
  12. slysaint

    slysaint Senior Member

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    MEGA:
    On your Marks, GETSET...................GO!:p

    eta: to clarify 'go' as in go away and ....'.
     
  13. AndyPR

    AndyPR Senior Member

    >We vote 'no confidence' in MEGA research for M.E.

    >A closer look at the MEGA petition reveals that key members and advisors of MEGA are involved in the discredited PACE trial, and the MAGENTA trial in children with ME/CFS which follows from the PACE trial, run by leaders of the bio-psycho-social (BPS) movement known collectively as 'The Wessely School'.

    In addition
    • They are still not including serious ill ME patients (they might be included in the request for funding after next), and will only be determining their definition of PEM after they've secured funding. o_O
    • The Patient Advisory Group has been shown to be nothing but lip-service to the concept of including patient input.
    • The ME "expert" is still Esther Crawley, who now gives lectures on how to deal with "anti-science" patients, with this petition as a main piece of "evidence", and on how to deny data release.
    • George Davey-Smith, the "heavyweight scientist" in MEGA has resigned from the editorial board of the Journal of Health Psychology due to the publication of "anti-science" articles that criticise PACE.

    https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

    3,242
    signatures
     
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  14. Jo Best

    Jo Best Senior Member

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    And from the petition covering letter: https://www.change.org/p/opposing-m...idence-in-mega-research-for-me-cfs/u/19240607
     
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  15. Jo Best

    Jo Best Senior Member

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    There's a separate thread on this news, but sharing here as Dr. Nigel Speight supported Opposing MEGA.
    https://opposingmega.wordpress.com/2016/10/28/dr-nigel-speight-signs-opposing-mega/

     
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  16. batteredoldbook

    batteredoldbook Senior Member

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    This is really great news. Thanks for sharing it, I'd not have known.
     
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  17. Jo Best

    Jo Best Senior Member

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    MEMum and batteredoldbook like this.
  18. lilpink

    lilpink Senior Member

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    UK
    This is such good news. I wonder if we'll see a reciprocal complaint made against the person who made this vexatious complaint in the first place?
     
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  19. Jo Best

    Jo Best Senior Member

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    I wonder how much tax-payer money it cost to investigate this vexatious complaint.

    The 2011 complaint against CMRC/MEGA Esther Crawley for research conduct is referenced in the NICE CG53 surveillance consultation document (GMC hadn't addressed all the matters raised, seemingly only those they felt could be rejected, and confused the issue by merging their responses to two separate complainants).

    Glad they made the right decision eventually in the case of Dr. Speight though.
     
  20. AndyPR

    AndyPR Senior Member

    From this post elsewhere http://forums.phoenixrising.me/inde...conflict-of-interest.52479/page-6#post-876922





    George Davey-Smith, the "heavyweight" scientist in MEGA showing his biases again.

    Sign the petition here --> https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

    3,273 people have signed already.
     
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