SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding

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Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI. From one research organization to another, SMCI used the opportunity to articulate its vision for an ideal research opportunity from the NIH. SMCI submitted a sample funding opportunity announcement (FOA) addressing the key elements that have been absent or underfunded in ME/CFS research. This imitation FOA was presented utilizing the formatting and language of the NIH itself. In replicating the NIH’s own FOA form, SMCI highlighted the dire need for research funding and seeks to encourage discussion of the NIH’s responsibility to further ME/CFS studies.
SMCI’s submission includes discussion on the following topics:

  • Interdisciplinary research and biomarkers
  • Bioenergetics
  • Neuroendocrine systems
  • Immunity and inflammation
  • Epidemiology and diagnosis
  • Physiological interactions
  • Treatment and quality of life
  • Methodological considerations
  • Funding support and timelines

To read SMCI’s full RFI submission, please click here.
According to the NIH, “The members of the Trans-NIH ME/CFS Working Group will review and consider the comments received under this RFI with regard to current and future needs and direction for ME/CFS research and research training.”
While the government is under no obligation to respond, the ME/CFS community can likely expect a public statement regarding the results of this RFI in late 2016.
Please note that SMCI’s submission to the NIH is NOT an announcement (or any part) of an actual FOA. This document was prepared and submitted by Dr. Zaher Nahle, vice president for research and scientific programs at SMCI, using existing material from the NIH website combined with original content and opinions. This document is intended for informational use only and is a fictional FOA.
SMCI also participated in two additional responses to the RFI from the NIH. First, SMCI partnered with Bob and Courtney Miller as a cosigner of their response to the NIH regarding the funding of an Ampligen trial. And second, SMCI teamed with over a dozen organizations and advocates, including Mary Dimmock, Jennie Spotila (OccupyCFS), and Cort Johnson (Health Rising), to address major budget shortfalls and policy barriers in this additional NIH response.
A key element of our work at SMCI, in addition to funding research ourselves, is to continue to actively and knowledgeably engage with federal officials to press for additional ME/CFS funding and appropriate research.

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2 thoughts on “SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding”

  1. “the ME/CFS community can likely expect a public statement regarding the results of this RFI in late 2016.”
    Would that public statement be issued before or after NIH issues a public response to the IOM and P2P reports, which were published well over a year ago?
    NIH has been actively harming patients for THIRTY YEARS. They are STILL actively harming patients; they are even funding still more junk psych studies while still refusing to fund Ron Davis.
    The policy of not researching M.E. has not changed, and will not change, until those parties responsible for the policy have been exposed and held to account for their crimes in a court of law, preferably on a criminal complaint.
    What puzzles me is why, after 30 years of beating our heads against walls, so many advocates still believe that if they can just talk to the right officials, or draft the perfect argument, or sign enough petitions, or publish an article in a big enough newspaper, that Our Dear Leaders will suddenly see the light and turn on the money spigot.
    It took a huge class action lawsuit to bring the tobacco industry to heel. This is the direction we need to pursue. We need to do this NOW, because People. Are. Still. Dying.,

  2. I can empathize with your frustration. I just turned 32 and spent most of my bday in bed. Yippee! I was diagnosed at age nine. Often I think, it’s been thirty years, why do we have to wait even another six months for some committee to get permission on behalf of blah blah blah to blah blah blah. If we received half the funds that Zika received we’d be in great shape! And yet, I can’t say that all the efforts you mention are in vain or aren’t working. We have to keep at them, keep publicizing information and keep MAKING NOISE so that this “issue” is no longer buried and public officials understand we aren’t going anywhere or slowing our efforts or our exposure of what’s happened in regards to this illness and what’s failed to happen. And we will continue to make noise until the agencies can no longer continue the status quo of basically NO change at all in terms of patients wellfare. I DO think these efforts you mention can help, including a petition I wrote, but they can’t work by themselves. It has to be constant prodding from every angle, exposure and a demand for answers. Or more simply, just show us the damn MONEY and let the right people get to work with it. If we stop with any of these advocacy efforts, give way to discouragement and believe wholly that a class action lawsuit is the answer to our prayers, were sort of reverting to where we started. Our work combined can and will get this thing solved, but we can’t give up trying. Now, please sign this petition before I present it to Collins, not because it alone is going to fix all this, but because as a part combined with the whole of other advocacy ventures, (more of them than ever) we can achieve change. Class action law suit? Sure, I’d get on board. Start it up or begin researching it, because no one else is going to fight for us, and until we understand its on us to do the work, it’s easy to shout from the sidelines everything others are doing is wrong but not getting a foot out in the battlefield with us. We all want the same thing and there are many ways to get there. I for one, am working with a petition. What do you have? You wanna sue? I’d sign on to sue. So make it happen. Because no one else will, and that’s what advocates who are out there fighting now realized, and that they are trying at all is more than I can say for most.

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