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MEGA research for M.E./CFS: White & Crawley listed as involved

Discussion in 'Petitions' started by AndyPR, Sep 28, 2016.

  1. AndyPR

    AndyPR Senior Member

    Update posted to MEGA - https://www.change.org/p/support-th...ation-to-major-uk-research-funders/u/18337625

     
  2. JoanDublin

    JoanDublin Senior Member

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    Typical of them. Fingers in the ears, hands over the eyes, hear no evil, see no evil, etc. They are ploughing ahead despite the concerns expressed. Well OMEGA will continue to register patients opposition and comments
     
    AndyPR likes this.
  3. Esther12

    Esther12 Senior Member

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    Maybe they're building up to the exciting announcement that Crawley is leaving!
     
    Hutan, Valentijn and JoanDublin like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    Soooooo, anybody seen this website yet?
     
    TiredSam likes this.
  5. JoanDublin

    JoanDublin Senior Member

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    Was just thinking the same thing today. Meanwhile the OMEGA website is looking swankier and swankier

    https://opposingmega.wordpress.com/
     
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  6. AndyPR

    AndyPR Senior Member

    Jan, Valentijn and Countrygirl like this.
  7. Countrygirl

    Countrygirl Senior Member

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    http://www.megaresearch.me.uk/get-involved/

    The time is very short for those who want to apply for the advisory group. The members will be chosen by the MEA and MERUK and Prof Little.


     
    Esther12, Hutan, Jan and 4 others like this.
  8. Wildcat

    Wildcat

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    The Deadline for applying to be on the MEGA Advisory Group is the 6th December - only one week!

    That in itself indicates the authors are worryingly ignorant about the limitations imposed by ME.

    .
     
    Esther12, Hutan, AndyPR and 3 others like this.
  9. Chrisb

    Chrisb Senior Member

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    ...or that the desired candidates have already been identified and suitably forewarned.
     
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  10. Wildcat

    Wildcat

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    I expect the main entry criteria will be 'won't rock the boat'
    .
     
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  11. Binkie4

    Binkie4 Senior Member

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    @Countrygirl
    It's a bit of a conflict isn't it. While I would not wish to support MEGA, I would hope that the patient representative panel would include those who are not just natural MEGA supporters. What does the group think? Where is it best to expend one's energy? I find it tricky to decide. Once inside a group, might there be the danger of 'going native'? .......
     
    Countrygirl likes this.
  12. AndyPR

    AndyPR Senior Member

    5 days as they want applications in by 9am 6th December, I have commented on this on their Facebook post about it.
     
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  13. Wildcat

    Wildcat

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    @AndyPR .... Do you have a link to the Facebook page?
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  14. AndyPR

    AndyPR Senior Member

    Countrygirl likes this.
  15. Wildcat

    Wildcat

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    Many of us, even being Facebook members, cannot post on AFME Facebook site due to having been banned. AFME have a history of banning ME sufferers and carers from its Facebook page that goes back many years. Its a disgraceful practice. AFME banned FB members for informing others about AFME's unaccountability, banned for calling Lightning Process "a scam" ..... etc etc.

    It has been pointed out to AFME that they were in the habit of separating sick and housebound ME sufferers from an online community in which they had made friends and engaged in mutual support, in effect isolating housebound sufferers even more by banning them. But AFME are never moved. Representing housebound ME sufferers is not on AFME's agenda.
    .
     
    Last edited: Nov 30, 2016
    TiredSam, actup and Countrygirl like this.

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