Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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About those NIH RFA's we've been waiting for....

Discussion in 'Latest ME/CFS Research' started by Denise, Dec 30, 2016.

  1. Denise

    Denise Senior Member

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    Although NIH said the RFA's would be out this month, we will have to wait a while longer.....
    The Trans-NIH MEcfs Working Group sent out a link to this announcement:
    "December 30, 2016

    Update on Funding Opportunity Announcement for ME/CFS Research Consortium
    On October 21, 2016, NIH announced its intent to publish a major funding opportunity for a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research consortium: https://grants.nih.gov/grants/guide/notice-files/NOT-NS-17-004.html. The early notice has allowed researchers to develop initial plans and collaborations to maximize their chances of competing successfully for the forthcoming funding opportunities. NIH had planned to release the solicitation for grants by the end of December 2016. However, due to a high level of interest from multiple NIH Institutes and Centers, several rounds of revisions were required, and a number of finishing touches are necessary to optimize the funding announcements. NIH expects the FOAs will be released by the end of January 2017. Importantly, this change does not affect the start date of the actual research, which remains scheduled to proceed this fall after approval by the NIH Councils.

    NIH remains committed to advancing the understanding of the biological basis of ME/CFS and developing treatments that will reduce the burden of illness due to ME/CFS. We believe that establishing a consortium of researchers working together will be a significant step forward in achieving this mission.

    This page last reviewed on December 30, 2016"
     
    Sean, Jennifer J, duncan and 10 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Thanks, @Denise.

    I wonder why the research won't start until the autumn? That's over nine months away! :(
     
  3. perrier

    perrier Senior Member

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    Thanks for this update. So, I gather this means by Jan 30 those who applied for grants will obtain a response,yes or no. Is this correct?

    Sasha's point is well taken too.
     
  4. Denise

    Denise Senior Member

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    @Sasha and @perrier- when NIH published the FOA (Intent to Publish Funding Opportunity) notices (here and here) in October 2016 they estimated both the award and start dates for the grants to be Sept 2017.
    Once the grants are released (January 2017?), researchers must apply beginning in April 2017. The submissions must be reviewed and approved.

    In other words - the release of the grants (hopefully no later than Jan 2017) is a very preliminary step in the process.
     
    Last edited: Dec 30, 2016
    Kati, Jennifer J, MastBCrazy and 3 others like this.
  5. jspotila

    jspotila Senior Member

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    This is not an atypical timeline. When an RFA comes out, researchers have a few months to apply and then NIH needs time for the levels of grant review. This is one of the reasons we need to see more urgency. Every time the timing shifts, we lose ground. Remember that Dr. Whittemore originally thought the RFA would come out in June or July, which would have meant grants would have started around the beginning of 2017. These bureaucratic delays are incredibly costly.
     
    JaimeS, aimossy, Solstice and 11 others like this.
  6. Denise

    Denise Senior Member

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    Costly in terms of lives and delays are also costly in terms of many lost opportunities for patients.
    I understand the concept of "wanting to do this right" but I deeply regret their lack of understanding of the urgency !
     
    Last edited: Dec 30, 2016
    Jennifer J, duncan, mfairma and 4 others like this.
  7. dreampop

    dreampop Senior Member

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    My only concern would be the other institutes are delaying until Collins is gone.
     
  8. Denise

    Denise Senior Member

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    Collins has indicated that if asked, he would remain as head of NIH. If he does not remain as head of NIH, he wants to return to his lab work at NIH.
     
    Valentijn likes this.
  9. GodGenghis

    GodGenghis

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    I'm curious how many of you believe this. I could see it going either way. In the end I judge them based on how they allocate the money.
     
  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    In the end none of what's happening is by chance. There are many, many people lobbying for improved funding and proper research. The way to ensure that promises are kept is to keep up the pressure/demands for better research and increased funding.

    There are those behind the scenes working with politicians and others like #MEaction where anyone can be involved even in small ways.
     
    JaimeS, mango, viggster and 1 other person like this.
  11. GodGenghis

    GodGenghis

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    I understand a lot is taking place behind the scenes to advance ME/CFS research and awareness. My question was whether other patients and activists accept the NIH's explanation that they missed the December 2016 deadline because of the unexpectedly high interest in the FOA's. I spent a lot of time on the phone this past week with the office of Dr. Collins, Dr. Koroshetz, and the Communications center of the NINDS, and none of them seemed prepared for the frustration they received from our community.

    Good things are happening, and as you rightfully pointed out, it's because of the work of a lot of people. And i'm encouraged by this announcement by the NIH working group. But missed deadlines still make it feel like the NIH hasn't stepped up its sense of urgency for ME/CFS. Hoping that's not the case.
     
  12. ghosalb

    ghosalb Senior Member

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    Dear Norway/Australian/other American Independent researchers - I am depending on you, even though you don't get to spend my tax dollars. Does not NIH feel any competitive pressure regarding how far behind they have fallen ?
     
  13. perrier

    perrier Senior Member

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    Agreed. And the days of darkness continue for all the young people stricken by this horror. Months go by, years go by, youth gets lost. Shame on all these bureaucrats.
     
  14. anciendaze

    anciendaze Senior Member

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    A change in administration which brings a change in policy is always a good opportunity to demonstrate the bureaucratic wisdom of accomplishing nothing over a period of years.
     

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