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CMRC agree on a new purpose, objectives and values, which replace its previous Charter, March 2018. EC also to leave the board of the CMRC.

Discussion in 'General ME/CFS News' started by Andy, Mar 6, 2018.

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  1. Sasha

    Sasha Senior Member (Voting Rights)

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    It's like Christmas!

    • build on the momentum created by the Institute of Medicine in the US by securing a high-level report on the illness and research in the UK, and use this to seek greater investment from policy and decision-makers
    • establish a CFS/ME Platform, similar to that of the Dementias UK Platform, to expedite and consolidate biomedical CFS/ME research.
    Yeeeeeeeeeeeeeeeeeeeessssssssssssssssssssssssssss!!!!!!!!!!! :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
  2. Trish

    Trish Moderator Staff Member

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    Well, I take back what I said earlier. This does indeed look promising. Very pleased to see Chris Ponting joining the board.
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Chris Ponting is good value. Maybe things are changing. But I have no faith in the sort of montage of funding names at the top. It makes it look like a sort of political black grouse lek with everyone pretending to make money available when they actually want it for themselves. The CMRC would have done better just to be a talking shop, not a wheeling and dealing outfit. Still, if anyone can turn this circus around it will be Ponting. He might start by bringing in the people who have actually been doing some science who have so far been excluded.
     
  4. Trish

    Trish Moderator Staff Member

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    ''ME/CFS Epidemiology and Genomics Alliance'' - providing the patient representation. I've just realised that must be the MEGA patient advisory group (PAG).
     
    Valentijn, TiredSam, Moosie and 12 others like this.
  5. Sasha

    Sasha Senior Member (Voting Rights)

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    There were some good people on that, IIRC, who were critical of the bad things in MEGA. This whole thing makes me wonder if their arrival on the scene and what they said helped change things.

    If so, hats off to them! :trophy@
     
    Woolie, janice, SarahandElly and 14 others like this.
  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    According to the new charter a new chair and deputy chair will be elected after five years.
    So Crawley's gone. But does this mean from the start of the new charter? So Holgate is safe as Chair for five years?
    Personally, given his involvement with Wessely, I'd prefer a completely clean start and Holgate replaced as Chair.
     
    Woolie, Alice, Valentijn and 16 others like this.
  7. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Does @dave30th know about this yet, or is it the middle of the night in Australia?
     
  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes I would love to think the powers that be at Bristol were struck by a lightning bolt ;) this winter and have made clear in private a change of direction was needed
     
  9. Andy

    Andy Committee Member & Outreach

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    I've sent an email to Arthritis Research UK, asking for a statement re: their involvement.

    Joanna Elson (Newcastle University) - http://www.ncl.ac.uk/ion/staff/profile/joannaelson.html#background - Mitochondria
    Colin Smith (Brighton University) - https://www.brighton.ac.uk/staff/colin-smith.aspx - Genomics
    Neil Harrison (Sussex University) - http://www.sussex.ac.uk/profiles/230391 - Neuropsychiatry
    Patrick Chinnery (Oxford University) - http://www.neuroscience.cam.ac.uk/directory/profile.php?pfc25 - "I am interested in the genetic basis of neurological disorders, and particularly mitochondrial diseases." [I think this must be the right person but he's not from Oxford.]
     
  10. Melanie

    Melanie Senior Member (Voting Rights)

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    I am not buying it, guys. Sorry.
     
    Awol, Luther Blissett, JemPD and 3 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    Binkie4, janice, Awol and 6 others like this.
  12. Simon M

    Simon M Senior Member (Voting Rights)

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    Well, Cambridge :)

    > Prof Chinnery: My laboratory research programme is based in the MRC Mitochondrial Biology Unit, and studies the mechanisms of mitochondrial disease in patients and model systems. Our aim is to understand why specific cell types are so vulnerable in mitochondrial diseases.

    I have an active genomics programme identifying new disease genes and mechanisms in neurological disorders.

    I also have an active clinical research programme developing new treatments for mitochondrial disorders.
     
  13. strategist

    strategist Senior Member (Voting Rights)

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    Excellent. A step in the right direction has been taken.

    I'm still cautious because words are cheap and the psychosomatic ideology has historically not been challenged enough. As we know, they have a tendency to prematurely draw conclusions that the illness is caused by psychosocial factors. A lot of psychosomatic research could be done under the pretext of biological investigation.
     
    Last edited: Mar 6, 2018
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  14. Simon M

    Simon M Senior Member (Voting Rights)

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    Last edited: Mar 16, 2018
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am wondering if she has taken up a position as head of research and development or clinical trials? Or even Dean?
     
  16. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thank you @Jonathan Edwards for all that you have done behind the scenes on this.
     
  17. Allele

    Allele Senior Member (Voting Rights)

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    Zoiks! I feel like any minute now i'm going to wake up from a dream!
     
  18. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I hope this comment is tongue in cheek!
    Isn't she prescribing antibiotics to youngsters with appendicitis?
     
  19. Andy

    Andy Committee Member & Outreach

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    Research excellence and patient communications is surely more fitting to her skill set? ;)
     
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  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Nope.
     

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