A new research landscape emerges in America (Simon McGrath blog April 26)

Discussion in 'ME/CFS research news' started by Simon M, Apr 26, 2018.

  1. Simon M

    Simon M Senior Member (Voting Rights)

    A new research landscape emerges in America

    Things are changing in the US for ME/CFS research as four new collaboratives set up and get to work.

    In September last year, the National Institutes of Health (NIH) announced $35 million of funding to establish three new ME/CFS research collaboratives and a supporting Data Management Coordinating Centre. Since then, the Open Medicine Foundation (OMF) has said it plans to invest $5 million to fund a fourth research collaborative, at Stanford.

    So that's four new collaboratives based at leading institutions, using top researchers and clinicians and backed by a substantial amount of cash. The collaboratives will be using cutting-edge technology and large, well-defined samples of patients. This adds up to a game-changer for biomedical research in the US, setting it way ahead of the rest of the world.

    The NIH-funded collaboratives are:

    • The Center for Solutions for ME/CFS headed up by Dr Ian Lipkin and based at Columbia University in New York City.
    • The Cornell ME/CFS Collaborative Research Center led by Dr Maureen Hanson at Ithaca, New York State.
    • The Jackson Laboratory ME/CFS Collaborative Research Center led by Dr Derya Unutmatz and based in Connecticut.
    And the supporting centre for the NIH groups is the Data Management and Coordinating Center run by Dr Rick Williams at the Research Triangle Institute in North Carolina.

    Each NIH-funded collaborative has been awarded around $10 million each over five years, with around $5 million for the data centre.

    NIH director Dr Francis Collins said the collaboratives would "lead to knowledge about the causes and ways to treat people affected by this mysterious, heart-breaking, and debilitating disease". All the collaboratives have said they aim to understand the mechanisms of the illness in order to develop treatments and to identify biomarkers.

    • The ME/CFS research collaborative at Stanford will be run by Dr Ron Davis and funded by OMF through donations it receives from patients and supporters.

    The four collaboratives


    Read the full blog at ME/CFS Research Review


    Last edited: Apr 27, 2018
  2. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Meanwhile in Canada, in spite of over 580,000 diagnosed, Health Canada in its wisdom, has allocated $70k.

    All of that, plus more from patient groups, went to fund the ME conference next week in Montreal titled "Advancing the International Research Agenda".

    Without major funding for research from Health Canada, it would seem the conference would just be a masturbatory exercise and set up for failure. How very bureaucratic.

    The elephant that will be in every room at the conference, is the cold hard fact that Health Canada has no intention of giving even 1 / 1000th of what would be equitable funding for ME research. They fail us at every turn, and in every way.

    That is why so many Canadians are forced to pay out of pocket to travel for testing and treatment in the US. Thankfully they are moving forward...slowly.
    Sisyphus, Barry, Sly Saint and 11 others like this.
  3. Pechius

    Pechius Senior Member (Voting Rights)

    God bless America.
  4. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    God bless Simon for posting something with a positive outlook....very much needed!
    Barry, Binkie4, janice and 17 others like this.
  5. Simon M

    Simon M Senior Member (Voting Rights)

    Very kind :). I did write the piece in part to give people hope, but mainly because I feel very hopeful myself about the collaboratives. I’ve long been frustrated by the general lack of high-quality biomedical research and I really do think that the collaboratives are going to change that in a big way.
    Skycloud, Ron, Lisa108 and 25 others like this.
  6. Inara

    Inara Senior Member (Voting Rights)

    In Germany, it's 0.

    It really seems the bigger part of hope for ME research lies in the US.

    Thanks @Simon M.
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

  8. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    I think ME/CFS has only received credibility in the States recently, it is still way behind. This study concluded in 2016.

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