February 2017 Research 1st – Dr. Nahle Letter

Dear Friends,
zaherOn January 27, the National Institutes of Health (NIH) posted two competitive funding opportunities: one for collaborative research centers (CRCs, U54) and another for a data management and coordinating center (DMCC, U24). This was followed by a call with the ME/CFS community in which Dr. Koroshetz, the director of the National Institute of Neurological Disorders and Stroke (NINDS), described the intent, magnitude, and scope of these new funding opportunities alongside key officials at the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Working Group.
For years now, the ME/CFS community has been vocal about the need for a tangible commitment from the NIH, and such news is certainly welcomed. Seemingly, this new development is a step in a sequence of events that started with the intent to bolster ME/CFS as announced by National Institutes of Health (NIH) Director Dr. Francis Collins in late 2015. This was followed by the establishment of the NIH intramural study on ME/CFS earlier last year, the roll out of supplemental awards for existing grants on the subject, the solicitation of the Request for Information (RFI) to generate input from the scientific community, and the commencement of the Common Data Element (CDE) project in partnership with the Centers for Disease Control and Prevention (CDC). We reported on each step periodically and continue to welcome any step toward advancing the science on ME/CFS.

Here, we make two points directly related to these new funding opportunities:

Zaher Feb Letter Graphic• In addition to these new center programs, creating dedicated requests for applications (RFAs) for stand-alone, investigator-initiated proposals (e.g., RO1 and R21 mechanisms) in ME/CFS will establish viable career paths for investigators and signal long-term commitment to this disease. These mechanisms have been the backbone of fueling discovery through NIH funding, and ME/CFS must be no different. Of note, many investigators or individual laboratories may have neither the bandwidth nor the connections to put together—or even participate in—prospective center grants, especially since these centers can be highly politicized (we believe this politicization must be avoided at all costs).

• Reviewing applications for these centers is critical. Particular attention must be placed on the nature and composition of the review panel. Having reviewers unfamiliar with or uninterested in ME/CFS could undermine this commendable effort. Standards must be upheld at all times to select the most meritorious grants.

As we always say, all elements of goodwill at the NIH, and in the community, must be harnessed constructively moving forward. These new center grants are just one element in a large toolkit of instruments at the NIH that includes exploratory grants, investigator-initiated awards, and a multitude of clinical and research training grants. All of these must be activated with the same commitment, to address different segments in capacity building, creating infrastructure and know how. If the NIH continues to expand its commitment, taken together, these elements constitute a framework for a comprehensive strategy to promote the understanding of a complex disease like ME/CFS.

Best,
Zaher

 

February 10, 2017
  • Thomas m Summers

    I am 61 and dealing with this since the mid 1980’s. I can’t afford to live on SSDI and will run out of savings in about 10 years. Used to try to find a cure through researching the internet. That energy is gone. Things are still moving very slowly in relation to other serious diseases. And that is the point. My physicians no only what they may read of the studies I have provided them. But like many of us, perhaps most, I feel I am just wasting away alone.

    • Sue

      You are not alone. We are here with you.

    • Rowena Beatty

      I am thinking of you Thomas. You are cared for.

    • Betty

      I feel exactly the same. Been dealing with this since 1989. I’m tired of reading research that offers no concrete results. I have kinda given up on ever being rid of this terrible illnrss

  • Adrienne Wooding

    where does

  • Keith Carley

    This April 6th will mark 30 years since I woke one morning to find I couldn’t lift myself up from the bed. I’ll be 64 at the end of February. I long ago gave up on having a cure, or even a treatment. Now I’d settle for an explanation of what’s gone wrong with my body.