Another huge week for RFAs at NIH! Last week alone, NIH issued 17 RFAs for a total of more than $94 million.
ME/CFS research did not get an RFA, but we did get official news about the RFAs promised us last year. NIH published notice of intent to issue funding for ME/CFS Collaborative Research Centers and a Data Management and Coordinating Center. Here is what we learned in the Notices:
- The National Institute of Neurological Diseases and Stroke is the only named participating Institute. This fits with the rumors that other Institutes have not been eager to pony up the money for RFAs.
- “The overarching goal of this initiative will be to establish a network of Centers that will work independently and collaboratively to define the causes of and discover improved treatments for ME/CFS.”
- “The intended FOA [Funding Opportunity Announcement] will solicit applications that propose research on ME/CFS.” Emphasis is placed on longitudinal studies, early stage basic and clinical investigators, and an educational component.
- The Data Management Center will manage and coordinate the data collection at the Collaborative Research Centers, as well as data mining and data sharing. Each Collaborative Research Center will be expected to collaborate with the others and use the Data Management Center.
- The RFAs will not be issued until December 2016, and funding will begin in September 2017 at the earliest.
- No dollar amount was specified. The number of separate Research Centers was also not specified.
A key point is that NIH will be using the U54 mechanism for funding the Research Centers. This is a cooperative agreement mechanism, which will give the funding Institute(s) substantial staff involvement. In a regular research grant, NIH gives the investigator money to do the project and is hands off until results. But in cooperative agreements, NIH remains substantially involved in carrying out the activities. This seems like a good thing, although we’ll have to see how it plays out.
Collaborative Research Center awards can be quite large or quite small, depending on the context. For example, NIH awarded $35 million to three centers for five years of research into Fragile X syndrome, a genetic disorder. But in another case, awards to support collaboration with the Clinical Care Center were limited to $500,000 (ME/CFS was listed as one of the areas of interest for that program).
At this point, we can only speculate on the number and size of awards that we will see for ME/CFS research centers. I know that bureaucracy moves slowly, but the earliest funding under these RFAs will be September 2017 – almost two years after Dr. Collins announced his “big” initiative on ME/CFS.
Regardless of how the details play out, I hope that many institutions will apply for funding under these RFAs when they are finally issued. One of the worst possible outcomes would be a very low number of applications, because this would confirm the NIH world view that there just aren’t that many researchers interested in ME/CFS.
Until we know more, we have to stick to the data available. Here are the cumulative numbers:
| FY 2017 | FY 2016 | |
|---|---|---|
| RFAs Issued | 26 | 352 |
| Dollars Committed | $146,727,000 | $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 |
|---|---|---|---|
| 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.
Jennie, again thank you for your vigilance on the RFA front. I share your frustration and disappointment in the results thus far, and I hope that your data can be used by advocates going forward with the next administration.
Chris Williams
Here’s what I’m still confused about: Is this something that will allow someone like Ron Davis to get funding? I mean, is this money all going to go to infrastructure, or this money for actual research?
It depends on how the final RFA is written. The Fragile X Centers I linked to included funding for the research itself. But the Notice of Intent released last week could potentially be interpreted to mean the funding will not go to projects. If I had to guess, I would say that funding for research will be included. The bigger question is how much money. $1 million won’t go very far.
Thanks, Jennie.
Jennie, Thank you for continuing to PROVE that the ME community has been fed a load of BS! Actions speak louder than words, and this is the most outrageous example I’ve ever seen. Many promises, such as the following, from Science Magazine (sciencemag.org) October 29, 2015 (one year ago) are just words:
“Give us a chance to prove we’re serious, because we are,” Collins says.
Shame on you, Collins! And shame on the staffer who indicated to me that ME would get a substantial share of the additional $2 BILLION allocated to the NIH.
Signed, Anonymous
Jennie, you bring up an interesting and important point – the possibility of a low number of applications by institutions for some of this money. The money ultimately available would probably make a big difference – lots of $, much more interest; low $, they would probably say it wasn’t worth bothering with, for this disease. But beyond that, how will institutions that might be appropriate applicants learn of such RFAs? I know there is a published list on a government website as they are announced, but is there something we could do to encourage those medical facilities that we know are working on ME to make sure they know of the RFAs and encourage them to apply? We’d need to identify, then notify and encourage.
Personally, regarding the $ amount to be announced, I would imagine it would be less than $10 million. Chicken feed.
I think every single academic institution that has an ME/CFS investigator at it should apply. I suspect most of those investigators are tracking this, but I think we should encourage them in whatever way possible.
Thank you for your updates and information.
I’m skeptical until I see actual dollar amounts committed and grants given for real research, not a “window dressing.” I am surprised that Ron Davis and Ian Lipkin weren’t included on a committee. And I don’t think I saw Jose Montoya listed either.
Until I see real progress, I’ll remain skeptical about the intentions of the NIH leadership, and know that these announcements aren’t just to mollify us, but mean real action is being taken.
Here is a fantastic (albeit long) article published a few days ago at “undark” website, written by David Tuller. It takes time to read as it’s long and covers a lot of issues, but well worth reading and circulating. It bashes the PACE so-called study and links some of the “researchers” to disability insurers. But it’s more than that.
http://undark.org/article/chronic-fatigue-graded-exercise-pace/