NIH issued only two RFAs last week, but last week we learned much more about what is coming for ME/CFS.
As I explained in my summary of the CFS Advisory Committee, Dr. Vicky Whittemore reported that she will be presenting a “funding concept” for an RFA to the Council of the National Institute of Neurological Diseases and Stroke on May 26th. If the Council approves her concept, she then will have to seek approval from any other participating Institutes. Once approval from all the funding sources is secured, she (or the Trans-NIH ME/CFS Working Group) will write the RFA. If all goes well, Dr. Whittemore estimated that the RFA would be issued in June or July. Applications would be due in the fall, and funding would begin next year.
In light of NIH policies, Dr. Whittemore could not provide any information about the RFA’s target or budget. We will have to wait for the official announcement. She also seemed to indicate that there could be more than one RFA, although over what time frame is completely unknown. And while Dr. Whittemore seemed confident about the likelihood of the RFA this summer, it should be noted that nothing is guaranteed. The NINDS Council could refuse it, or request modifications. Other participating Institutes (as yet unnamed) may decline as well. And until we can read the RFA, we cannot judge if the concept or amount of funding is sufficient.
I return again to Carol Head’s comments at the CFSAC meeting: “Time is running out to believe in federal changes for funding.” This is the week of the #MillionsMissing protests. I will be missing from my local protest because of this damn disease. I am missing (and have missed) so much of my life. And until there is an actual RFA in my actual hands that actually provides adequate funding for ME/CFS research, I will continue to say there are #MillionsMissing in research dollars.
It’s a very simple equation, really. We are running out of time. And so is NIH.
- Total RFAs Issued by NIH: 223 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,036,840,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
|Week Beginning||RFAs Issued||Total Commitment||RFAs for ME/CFS|
If you want more background on the RFA Ticker, read the inaugural post.