Founder of Health Rising and Phoenix Rising
The future is almost here. After Francis Collins said "watch us move", the NIH moved forward rapidly to create their Clinical Center study. That study suggested that they were indeed making a serious commitment to ME/CFS but it's only one study. If the proposal they're about to present for funding ME/CFS reflects the commitment they showed in producing that study we'll be in very good shape.
NIH funding has been mostly stagnant or declining for quite some time. In fact, the NIH has been saying that its real buying power has declined by about a third, if I remember correctly, in the last ten years or so.
The good news is that for the first time in years, the NIH got a significant bounce in funding (+$2 billion). This is not just more money; it's mostly unallocated money, which means it presents our best chance in decades to build a research base at the NIH that grows and grows.
The Trans-NIH Working Group - a group of Institute representatives working on ME/CFS - will present their proposal to move chronic fatigue research forward during an open session of National Advisory Neurological Disorders and Stroke Council. You can watch it LIVE on May 26th at 2pm (I assume that's EST). (It will be archived as well.)
It will be the first time we can see the Working Group in action.
I don't know if this is the be all and end all of the Working Group's proposal. I believe they will have to go to different Institutes to get funding but we may get an overview of the full proposal.
I predict RFA's will be in there. I'm hoping for clinical trials for Rituximab and Ampligen (those have been rumored). I would very pleasantly shocked if a couple of Centers of Excellence showed up. We'll see! Vicky Whittemore, our champion at NINDS, has said she thinks we will be pleased.
After they give their proposal I believe the NINDS Council will determine whether to fund it. Let's hope the proposal goes well and lays the groundwork for a new era in ME/CFS research and treatment.
VIII. Concept Clearance for Proposed Initiative
ME/CFS Research Consortium.........................................................Dr. Vicky Whittemore / Program Director / Channels, Synapses & Circuits Cluster, NINDS
To: "Emr, Marian (NIH/NINDS) [E]" <firstname.lastname@example.org>
Sent: Wednesday, May 18, 2016 10:52 AM
Subject: NINDS Council Meeting - May 26, 2016
As you know, the Trans-NIH ME/CFS Working Group is considering several initiatives to advance research on ME/CFS. In order to move forward, funding initiatives require approval by an Institute’s advisory council, which reviews grant applications and advises leadership on activities and policies affecting scientific programs.
On May 26, 2016 at 2:00 P.M., the Working Group’s proposal for ME/CFS will be presented during the open session of the National Advisory Neurological Disorders and Stroke Council. A copy of the Council meeting agenda is attached.
To watch the meeting live, please visit https://videocast.nih.gov on the day of the meeting. The recording will also be archived and available for future viewing.
Let me know if you have any questions.
Director, Office of Communications and Public Liaison/NINDS
31 Center Drive MSC 2540
Building 31, Room 8A07
Bethesda, MD 20892-2540
Phone: (301) 496-5924
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