No Christmas joy for ME/CFS research at NIH. Only two RFAs were issued last week, and neither were the RFAs promised to us. It appears that the RFAs are coming . . . at some point. Dr. Vicky Whittemore told me by email last week that the continuing budget resolution will not hold up the RFAs. She said, “The funds are committed, so it won’t impact the RFAs.”
After ME Action, Terri Wilder and I called on Dr. Collins to keep the promise he made to the ME community, Carol Head of Solve ME/CFS Initiative was also in touch with Dr. Whittemore. Carol told me, “She has confirmed that the NIH is working hard through an intensive process involving many institutes, to get the RFA’s out the door as soon as possible. Francis Collins is well aware of, and supports, the NIH commitment to the ME/CFS Funding Opportunity Announcements.”
I want to be very clear about something: NIH itself publicly said the RFAs are “expected to be published in December 2016”. That is not a deadline that we set. Nor is it an arbitrary date pulled out of the advocacy hat. NIH stated the RFAs were expected in December. By putting that date in the Federal Register Notice of Intent, NIH made it seem like a sure thing. It’s not as formal or binding as Dr. Whittemore’s statement at the May 2016 CFSAC meeting that the RFAs would be issued in June or July 2016.
It should be obvious that when NIH publishes something in the Federal Register, researchers and others will rely on that information. How many ME researchers are holding off on other grant applications because they are waiting for those RFAs? I do not doubt that Dr. Whittemore and others are working hard to get the RFAs out the door. But obviously, the Institute support is not there. And despite Dr. Collins supporting the commitment to the RFAs, that is clearly not carrying enough weight internally to speed things along.
I believe that an internal statement from Dr. Collins to whatever Institutions or individuals who are holding up the RFAs would go a long way to solving the problem. When people know the Director wants something, that thing usually happens. So, despite everything else on my personal and advocacy plate today, I am emailing Dr. Collins again to remind him of his promise to us. Please join me.
Here are the current cumulative RFA numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 121 | 352 |
| Dollars Committed | $637,707,563 | $2,840,680,617 |
| RFAs for ME/CFS | ZERO | ZERO |
And here is the table for FY 2017 alone:
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 12/19/16 | 2 | $10,000,000 | Zero |
| 12/12/16 | 28 | $125,950,000 | Zero |
| 12/5/16 | 14 | $114,800,000 | Zero |
| 11/28/16 | 10 | $47,660,000 | Zero |
| 11/21/16 | 6 | $42,780,000 | Zero |
| 11/14/16 | 6 | $44,350,000 | Zero |
| 11/7/16 | 10 | $25,490,563 | Zero |
| 10/31/16 | 4 | $26,550,000 | Zero |
| 10/24/16 | 10 | $53,400,000 | Zero |
| 10/17/16 | 17 | $94,890,000 | Zero |
| 10/10/16 | 1 | $28,750,00 | Zero |
| 10/3/16 | 9 | $23,087,00 | Zero |
If you want more background on the RFA Ticker, read the inaugural post.
The squeaky wheel gets the grease. Squeak. Squeak! SQUEAK!
Keep it up – and then we’ll thank them as soon as stuff actually appears, and again when money actually reaches reserachers.
I don’t see why they can’t acknowledge 30 years or more of pent up fury/demand – and fast track it.
I have the very strong suspicion that the research is going to lead to a LOT of problems solved, not just ours.
(I did join you.)
Squeak. Squeak! SQUEAK!
Yes, “…a LOT of problems solved, not just ours.”
Thank you, Jennie, for the gift of your advocacy!
DONE! DONE! AND DONE AGAIN! Thanks, Jennie!
Thank you, Jennie, for your constant, determined and dedicated advocacy for the ME/CFS community. The NIH should stick to the promises made.
I wonder if the hold-up is that Collins doesn’t know if he’ll keep the position in the next administration.
Anyway, your work is appreciated. Hope you got in some holiday fun, too.