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ME Research UK withdraw from UK CFS/ME Research Collaborative

Discussion in 'General ME/CFS News' started by Orla, May 19, 2017.

  1. Orla

    Orla Senior Member

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    http://www.meresearch.org.uk/news/me-research-uk-and-the-uk-mecfs-research-collaborative/

    ME Research UK has taken the decision to withdraw its membership from the UK CFS/ME Research Collaborative with immediate effect.

    ME Research UK exists to fund biomedical research into ME/CFS, to find its cause, to develop effective treatments and ultimately to discover a cure. In 17 years, it has funded 45 specific research projects in the UK and overseas, more than any other single organisation in the world outside the American continent. The decision to resign from the Collaborative was not taken lightly but reflects the Trustees’ wish to focus on the charity’s key aims. ME Research UK remains committed to drive increased interest and investment into biomedical ME/CFS research and looks forward to continuing to work constructively with organisations, charities, researchers and funders in the future.
     
    Anne, L'engle, justy and 59 others like this.
  2. Yogi

    Yogi Senior Member

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    Brilliant news.

    Now over to you Action for ME and ME Association????

    I wish they gave more of a statement. This must mean that EC could not be pushed out of CMRC?
     
    Anne, Cohen2, snowathlete and 12 others like this.
  3. dangermouse

    dangermouse Senior Member

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    Well done ME Research UK. Well done.
     
    MEMum, Cohen2, Woolie and 16 others like this.
  4. Molly98

    Molly98 Senior Member

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    :thumbsup::thumbsup::thumbsup::thumbsup::balloons::balloons::balloons:
    Brilliant news.
    Come on MEA and Action for ME if you follow suit you can all form your own collaborative together with IiME, Tymes Trust and ME Research UK. Leave all the dead weight holding us back behind.
    Fresh start?
     
  5. Orla

    Orla Senior Member

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    ME Research UK are on twitter so people can like their post announcing this to show their support.
     
    MEMum, Cohen2, snowathlete and 16 others like this.
  6. A.B.

    A.B. Senior Member

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    Demonstrating leadership and commitment to good research. :thumbsup:
     
    MEMum, Lindberg, Cohen2 and 17 others like this.
  7. Yogi

    Yogi Senior Member

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    MEMum, snowathlete, JaimeS and 9 others like this.
  8. RogerBlack

    RogerBlack Senior Member

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    MEMum, Cohen2, snowathlete and 10 others like this.
  9. dangermouse

    dangermouse Senior Member

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    That would be the outcome that I'd like to see. A move in the right direction and a stand against all that is fundamentally wrong with the CMRC.
     
    Anne, lemonworld, MEMum and 14 others like this.
  10. Countrygirl

    Countrygirl ME is not MUS

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    Well done MERUK!

    They show courage, integrity and a commitment to good quality science.

    There are two others, of course, whom we need to hear from.........................;) Will they make a stand against poor science and those who sell patients down the river for the sake of their own personal empire? :confused: One won't, one might :cool:
     
    justy, MEMum, Cohen2 and 13 others like this.
  11. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    Excellent news.
     
    MEMum, JaimeS, Jan and 10 others like this.
  12. lilpink

    lilpink Senior Member

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    How? She IS the CMRC.
     
  13. lilpink

    lilpink Senior Member

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    Good news. But it should never have been necessary. They should never have involved themselves in this charade in the first place. Very underwhelmed by their statement.
     
  14. BurnA

    BurnA Senior Member

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    It does seem very tame, they certainly could have said a bit more and used the opportunity to highlight the shenanigans of the CMRC.

    As they say, actions speak louder than words, so at least the action is what we wanted.
     
    MEMum, Cohen2, Woolie and 12 others like this.
  15. Large Donner

    Large Donner Senior Member

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    I was one of the people who was opposed to any of our ME organisations entering in this fiasco with the CMRC in the first place, the writing was so clearly on the wall. Yet even people at the helm of our ME organisations accused people like me of "just not wanting to see British science involved in ME", which was a totally bizarre thing to say.

    There was a number of threads on this forum and others I think pointing out the names of all the people involved in the CRMC it was so bleeding obvious what was going to happen.

    I do want to hear what people think would happen now, lets say if all the ME organisations did resign. Do people think the CMRC would just carry on regardless with Crawley at the helm and would she just love it even more having total free reign doling out more and more crap via the SMC who are also neatly placed in the CMRC.

    I really think that a total walk out by our organisations should go the whole hog and call for the disbandment of the CMRC, and explain in full detail that they are not prepared to work with Crawley under any circumstances, why and to just show the simple provable facts in black and white. This should be done in a press conference and also statements should be posted online.

    She is a quack and a danger to patients!!!
     
    Last edited: May 19, 2017
    Noro, lemonworld, Sidereal and 25 others like this.
  16. lilpink

    lilpink Senior Member

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    The real problem is that they shouldn't have acted this way in the first place. Very many patients and advocates knew how this would end. How is it a mainstream UK ME Charity didn't possess equivalent prescience? I'm glad they have now seen sense, but I am angered that they thought they knew best when getting into bed with the BPS school. I don't easily forgive. I was a staunch supporter of MERUK and they let people with ME down very badly imo. Ditto the MEA. They didn't listen to the patient base. I'm sorry but I'm not the type to bend over fawningly because someone has removed themselves from a situation they should have known was bad right at the very beginning. Now they need to earn redemption .. it would help if they added to their statement. It's weak and shows little insight.
     
  17. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Well done. Moves like this boost patient confidence in an organisation, and give more hope that things will change. It will take time to win back a lot of patients, but this is a step in the right direction. I hope the MEA and others follow suit.

    P.S. Don't mind me while I mess about with my avatar pic. I didn't realise it actually changed on the forum while you're still testing it out. I was bored with the last one. So it's kind of Frida, Frida, Frida, someone else as Frida, or the highly vexatious witch Geillis from Outlander.
     
    Last edited: May 19, 2017
    MEMum, Barry53, JaimeS and 7 others like this.
  18. Jonathan Edwards

    Jonathan Edwards Senior Member

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    An interesting development.

    I think it may be difficult for AfME to extricate itself from CMRC. However, I would encourage MEA to follow MERUK in this move. Recent events have made it time for this organisation to be closed down. It has no credibility outside its own membership.

    Once everyone is out of the CMRC tent there will be a new impetus for a venue for collaboration elsewhere. There are historic divisions that have a lot to do with the CMRC grouping in the first place. If we can forget the CMRC existed then maybe some of these differences can be laid to rest. There are avenues forward. Some mutual magnanimity would help in allowing people to share those avenues but maybe the first thing is to let people mend fences when they are ready and not push too hard.
     
  19. lilpink

    lilpink Senior Member

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    Quite so.
     
    Jo Best, JaimeS, ladycatlover and 3 others like this.
  20. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    Crawley needs to be shunned. I don't see how any ME organisation can work with her. She doesn't even know what ME is, and her behaviour towards patients is an absolute scandal. Other members of the medical profession need to understand this sort of behaviour is not acceptable and that the UK's patient population has no faith in her whatsoever.

    I'm saying this because if the CMRC closes and she still turns up in a patient or research organisation, we're no further on. Crawley and her cronies have to go.
     
    lemonworld, MEMum, Sidereal and 28 others like this.

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