Today, I’m debuting a new weekly feature that I call the NIH RFA Ticker. My goal is to give you the data you need to help assess whether NIH is doing all it can to promote and fund ME/CFS research.
First, a little background. “RFA” stands for Request for Applications, and it is an announcement from NIH saying, basically, we will fund $X amount of research on Y topic. This is different from regular funding opportunities, because the money has been set aside. If enough meritorious grants are received, that money WILL be awarded. That’s different from tossing your application into the general pool and hoping it floats.
NIH last issued an RFA for CFS research in 2006, and we’ve been begging for another ever since. The CFS Advisory Committee has recommended one, advocates have petitioned for one, and both the IACFS/ME and members of Congress have asked for one. Ever since the NIH announcement about reinvigorating ME/CFS research on October 29, 2015, many advocates have been asking if we will finally see an RFA.
NIH has offered a variety of excuses for not issuing one in the past: there are not enough scientists interested in this area; there is not enough data to appropriately target one; or NIH does not receive enough ME/CFS applications to justify one. But RFAs are a tried and true mechanism for stimulating research in specific areas. If NIH really wanted to jump start ME/CFS research, a guaranteed infusion of cash would attract researchers like flies.
So I decided that we need to start counting NIH RFAs. Just how many does NIH issue, and for how much money? This is very easy to do. Each week, NIH sends out an email listing the new RFAs and funding opportunity announcements. The information is also archived on the web.
Starting with the first full week of October 2015 (because that coincides with the beginning of the federal fiscal year on October 1st), I have counted how many RFAs NIH has issued and for how much money. I will update this ticker every Monday. Let’s see if NIH can come through for us like they do for many other areas of scientific interest.
NIH RFA Ticker
- Total RFAs Issued by NIH, to date: 94
- Total Dollars Committed to RFAs, to date: $1,401,490,000
- Total RFAs for ME/CFS, to date: ZERO
| Week Ending | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 12/11/15 | 27 | $765,090,000 | Zero |
| 12/4/15 | 6 | $26,600,000 | Zero |
| 11/27/15 | 4 | $21,000,000 | Zero |
| 11/20/15 | 15 | $134,400,000 | Zero |
| 11/13/15 | 2 | $16,100,000 | Zero |
| 11/6/15 | 10 | $22,850,000 | Zero |
| 10/30/15 | 7 | $49,800,000 | Zero |
| 10/23/15 | 10 | $33,200,000 | Zero |
| 10/16/15 | 0 | $0 | Zero |
| 10/9/15 | 13 | $332,450,000 | Zero |
This is A FANTASTIC idea to keep NIH accountable.
Jennie, yes indeed–a brilliant idea! Maybe you/we can persuade some politically effective sources to give wider publicity to these figures….Tuller has been doing a great job getting publicity with the PACE trial–maybe….? Solve ME/CFS ? ? And maybe preface the weekly figures with a few select quotes from the IOM and P2P reports about the serious and disabling nature of the disease–I have the IOM “Report Guide for Clinicians” to hand, and it starts:
“ME/CFS is a disease characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives, yet many struggle with symptoms for many years before receiving a diagnosis.” And so on.
HHS paid a million bucks for this…. The basic idea of a weekly thorn in the flesh reminder is just great–and the figure for 10/9/15 is very interesting–one hand refusing to recognize what the other hand should-and could-be doing. Wow!
Great job, Jennie. I’ve been looking for that archive…Very valuable advocacy tool
Thanks Jennie!!
I sent a copy of your NIH RFA ticker to the anonymous person at NINDS at the NIH who I have been writing to and asking this person why this is happening.
Thanks for your good work.
I am planning a fund raiser and am looking for a brochure or flyer that describes ME/CFS that I can give to all who attend. Anyone know of such?
meadvocacy has done some nice work on this end
http://www.meadvocacy.org/resources
“As Dr. Collins told Science Insider, ‘Give us a chance to prove we’re serious, because we are.”
Brings to mind that old adage, “Put your money where your mouth is.”
Excellent work. Tick, tock, time is passing and nothing is happening to help the patients.
But, but, Jennie, the NIH is our friend now, haven’t you heard?
How can you be so non-congratulatory?
After all, we got a press release and a vague promise to study fatigue!
/end snark
How silly of me! I’m such a Debby Downer! LOL
This is great, Jennie.
jennie did you get a chance to sign my petition asking for a new RFA
http://my.meaction.net/petitions/nih-please-create-a-new-rfa-for-me-cfs
I let it go a few months and we did quite well, nearly 500 sigs
I have sent it to the appropriate nih contacts but a few more names can’t hurt. i have a feeling that nih is unlikely to budge on this overly soon
Excellent idea, Jennie. Leave it to you to keep us all “in the know.” Thanks so much.
Thanks, Jennie, for your hard work and reporting on NIH funding.
I agree with the “Put your money where your mouth is” statement. When we see the financial commitment, we’ll know that it is real.
Until then, the best intentions won’t do the job.
The Dec. 11 figure floors me. It’s the highest amount and it was committed after the NIH said it would study ME/CFS and commit more money to this.
thank you and well done!
Jennie, regarding the “Total Commitment Amount” column, aligning it to the right (instead of left-aligning it) would make the dollar amounts stand out more & be more easily recognized. Having that column aligned to the left, makes it difficult to read/scan. When left-aligned, the $332,450,000 doesn’t look like much more than $332,000. Also, maybe adding totals for the RFAs & Commitment Amount would really have a greater impact.
Great idea that you came up with. Thanks for your advocacy!
Good suggestion! I’ll try to figure out how to code that alignment.
I’ll be using advanced statistical techniques to correlate the number of RFAs we receive… with the number of apologies we receive…
THAT shouldn’t be too hard.
Great idea. Thank you!
Will the NIH ME/CFS Research Working Group recommend RFAs? If so, what is a reasonable amount of time for them to start issuing RFAs? How do we keep informed about their meetings and discussions? I have signed up for their news release but have not received anything yet.
There is no indication that the WG will recommend an RFA, but they certainly could. RFAs are lengthy documents and require a series of approvals, so I would assume it takes a few months. Staying informed about the WG’s meetings is challenging because they’ve never released summaries or minutes in the past. FOIA attempts (by others) have not been successful, as far as I know. They may not even keep minutes.
Does the WG actually exist? And, is someone sending Collins this weekly review?
The Working Group exists, and they are fully aware of the ME/CFS tally.
Thanks for doing this – I have thought all along that if ones goal is to increase the US governments response to CFS the first thing to do is to measure that response over time. Advocacy without measurement is like running a business without accounting.
Merry Christmas, Moldies & Chronic Fatiguers! Fighting for your rights since 2004.
It’s not just a resistance to spend money to investigate ME/CFS that you are fighting.
There is monetary value connected with denying that forms of ME/CFS caused by biocontaminants in water damaged buildings are real, physical illnesses. There’s liability for the federal government, et.al. if the causation-connection is made. I’ve known this since 2004 and it’s not just unethical blind-eyes. It’s criminal intent to deceive.
“Root of the fourteen year old problem coming straight out of the CDC and covered up by a decade of case-fixing SLAPP (Strategic Litigation Against Public Participation) in the California courts.”
https://katysexposure.wordpress.com/2015/12/24/california-choose-wisely-to-stop-science-frauds-in-policy-over-mold-illnesses/