Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Are you on the MEGA PAG?

Discussion in 'Latest ME/CFS Research' started by Demepivo, Dec 20, 2016.

  1. Demepivo

    Demepivo Dolores Abernathy

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    People were notified today if they were on the MEGA Patient Advisory Group (PAG). There were 45 applicants for 15 roles.

    I know that Spoonseeker is on it. (https://twitter.com/spoonseeker)

    <blockquote class="twitter-tweet" data-lang="en-gb"><p lang="en" dir="ltr">Found out today I&#39;m on <a href="https://twitter.com/hashtag/MEGA?src=hash">#MEGA</a> PAG. Will do my best to represent patients. Anyone else out there also on PAG, please get in touch...</p>&mdash; Spoonseeker (@spoonseeker) <a href=" ">20 December 2016</a></blockquote>
    <script async src="//platform.twitter.com/widgets.js" charset="utf-8"></script>


    Are you on it?
     
    Last edited: Dec 20, 2016
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  2. Dolphin

    Dolphin Senior Member

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    JohnCB, Woolie, AndyPR and 2 others like this.
  3. Cheshire

    Cheshire Senior Member

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  4. Cheshire

    Cheshire Senior Member

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    Predictible, but sad anyway...

     
    Last edited: Mar 17, 2017
  5. A.B.

    A.B. Senior Member

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    Sounds like MEGA is as bad as many of us feared. The rule really seems to be: if the BPS crowd wants it, it's probably bad for us.
     
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  6. slysaint

    slysaint Senior Member

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    And yet if you read the HofL meeting report (posted by CS) according to Claire Ogden of AfME it's all sweetness and light.
     
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  7. JoanDublin

    JoanDublin Senior Member

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    Has @charles shepherd any comment on this? That's really bad that three members have resigned giving indications that things in MEGA were as bad as we feared
     
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  8. lilpink

    lilpink Senior Member

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    Mandy Rice Davies Applies (again!)
     
  9. charles shepherd

    charles shepherd Senior Member

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    I am aware that 3 members of the group have resigned today and I have seen their letters of resignation

    However, I think it's up to them to provide more information as to why they have decided to resign

    Although I agreed to go through all the applications for membership of PAG and (along with MERUK and someone from MEGA) make recommendations on the most suitable applicants I have not had any further involvement with PAG and I am not a member of the MEGA planning group

    CS
     
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  10. Kati

    Kati Patient in training

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    To poke a little fun, does MEGA stand for Making England Great Again? :lol::lol::lol:

    Curious to know why the resignaton and were they all patients or were there also scientists?
     
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  11. JoanDublin

    JoanDublin Senior Member

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    They have to be patients to be members of the Patients Advisory Group
     
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    What I'm really interested in is: Why hasn't the rest of PAG resigned yet?

    We knew what MEGA was about and it's confirmed by three resignations so. . .
    It's really not helpful to all those suffering with ME to prop up and give credibility to MEGA.
     
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  13. JoanDublin

    JoanDublin Senior Member

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    You misunderstood me. I know you had no further involvement with PAG than initial streaming and recommending. I was only asking if you had anything to say about three members resigning in this way. But clearly you don't.
     
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  14. A.B.

    A.B. Senior Member

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    The patients that are staying probably think it will be the good biomedical research that we all need, or that it will be at least decent and that Crawley and White pose no real danger.

    Good biomedical research would erode the credibility of the BPS approach, which in turn would threaten the CBT/GET business that White and Crawley have built and are defending. It doesn't make any sense to trust them with a project that claims to be interested in good biomedical research. The only interest these people have is in ensuring that CBT/GET continues to be viewed as the evidence based treatment of choice, and what they really need right now are biomedical null results because the OMF, Aussies and the Norwegians are about to put them out of business. The easiest way to get a null result is to simply use a crap sample. No amount of good science can produce anything of value from that. Another way to get null results is to measure things that are irrelevant, and they have not told us exactly what will be measured, while also repeatedly telling us that tests may be cut due to budget constraints or following input from the patient advisors (with at least a portion of advisors coming from Crawley's predetermined advisor group IIRC).
     
    Last edited: Mar 17, 2017
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  15. Chrisb

    Chrisb Senior Member

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    Two points:

    These resignations demonstrate the integrity of the initial selection process.

    How can those who have resigned be replaced with anyone who will have the confidence of the patient community?
     
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  16. Esther12

    Esther12 Senior Member

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    Do you know if MEGA have a responsibility to inform any funders they've applied to of the resignations? If the patient panel was a part of their applications, wouldn't they need to update on this?

    It's difficult to see how Crawley could agree to the sort of safeguards informed patients would want. The PACE promoters are so far from reality I don't see how some happy compromise could be found. We need to focus on going past them.
     
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  17. Demepivo

    Demepivo Dolores Abernathy

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  18. Demepivo

    Demepivo Dolores Abernathy

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    One such person is Russell Fleming.

    Unfortunately the science is over his head and he's admitted to having a crush on Esther Crawley. He got the role by being a non stop sycophant.

    Surely the ME/CFS community deserves better representatives.

    Fair play to Spoonseeker & the other 2 for making a stand.
     
    Countrygirl likes this.
  19. Esther12

    Esther12 Senior Member

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    He used to post as Firestorm (?) here and I always got on with him. How could he possibly not be disgusted by Crawley? Hopefully it will implode before Crawley gets her mits on any more funding.
     
  20. JoanDublin

    JoanDublin Senior Member

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    I'm afraid he was a big proponent of MEGA on Twitter, encouraging people to sign, telling people to ignore the critics and saying that we needed Crawley as it would involve children, etc.
     

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