During the March 8, 2016 NIH conference call with ME/CFS advocates, I asked Dr. Walter Koroshetz of NINDS if he could commit to the community that an RFA would be forthcoming. He said no, and then qualified the answer by saying that he could not make such a promise until after all the approvals had been received, etc etc. RFAs were something they were working towards, and in a separate comment Dr. Vicky Whittemore said that a proposal for ME/CFS strategy would be presented to the Institute Councils in May. Many people have taken these things together and made the assumption that an RFA will be announced in May or shortly thereafter. I do not. Such a conclusion is based on attempting to read tea leaves, and we’ve been wrong too many times in the past.
Koroshetz said that he could not commit to us that an RFA was forthcoming. Therefore, the only assumption we can and should make is that an RFA is not forthcoming. It’s not a reality until NIH says that it is. Not only that, but what if the RFA doesn’t happen for another two years? Or it’s only for a total of $1,000,000? Will you be satisfied?
I’m seeing a lot of assumptions being made by ME/CFS advocates about what NIH or individual NIH employees mean when they say something. And I’m sure the same thing is happening on the other side – NIH employees making assumptions about what ME/CFS advocates mean when they say something. Assumptions do not matter. Actions matter. Data matter. Results matter.
Meanwhile, last week was a big one for RFAs: more that $87 million was obligated. Not surprisingly, ME/CFS was not one of the lucky beneficiaries.
- Total RFAs Issued by NIH: 163 (October 2015 to date)
- Total Dollars Committed to RFAs: $1,700,500,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 3/7/16 | 13 | $87,510,000 | Zero |
| 2/29/16 | 1 | $1,890,000 | Zero |
| 2/22/16 | 9 | $30,100,000 | Zero |
| 2/15/16 | 4 | $26,500,000 | Zero |
| 2/8/16 | 5 | $9,500,000 | Zero |
| 2/1/16 | 8 | $26,000,000 | Zero |
| 1/25/16 | 6 | $11,550,000 | Zero |
| 1/18/16 | 2 | $4,500,000 | Zero |
| 1/11/16 | 10 | $71,200,000 | Zero |
| 1/4/16 | 0 | $0 | Zero |
| 12/28/15 | 0 | $0 | Zero |
| 12/21/15 | 3 | $10,260,000 | Zero |
| 12/18/15 | 5 | $20,260,000 | Zero |
| 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 |
If you want more background on the RFA Ticker, read the inaugural post.
“Everyone knows, when you make an assumption, you make an ass out of ‘u’ and ‘umption’.” — Mitch Henessey, The Long Kiss Goodnight
There were several unanswered questions on last week’s call and certainly your question about RFAs for us was one that loomed large.
I’m with you: I’ll believe it when I see it.
Possibly statements are made to take the pressure off: if the advocates are off chasing read herrings, they will live on that and stop bothering.
I’ve been sick 27 years+. It’s going to take some REAL commitment to change my mind.
Meanwhile, I’ve discovered a few timing things that may be helping me, personally, get a bit more out of each day. If they pan out, I will blog about it. And not until I’m fairly sure: I floated some of my results at my support group meeting, with people who know me and know what I’ve gotten done in the past – no interest at all.
Meanwhile, I’m trying to write the second part of the Pride’s Children trilogy – it has a main character with CFS, and that is real. That’s my real focus – enticing people through fiction into learning what ‘we’ can and can’t do with a story they can buy into. Marketing is slow when you’re indie – but I have a bunch of lovely reviews on Amazon and Goodreads.
You are so right, actions speak louder than words! So many people giving lip service to us, but no actions. I’m following this to see if Anything is getting funded that pertains to ME/CFS and being disappointed over and over. Thanks for the continuing RFA ticker Jennie, hopefully there’s some good news coming – but I’m not going to hold my breath!
Hi Jennie,
Health Rising recently had a couple of blogs re NIH’s commitment to CFIDS/ME with some big studies in the works. Will that be money that comes from another source than RFA’s?
The intramural study at the Clinical Care Center and any grants awarded to outside researchers this year are all coming from non RFA money.
Give it six months. The judge them. This is just the start. Nothing happens overnight but it seems we are in a better place than we were last year.
I think we are in a better place than last year. But I also think it’s important to track progress on both short and long time horizons.
They’ve already had 30 years.
“Assumptions do not matter. Actions matter. Data matter. Results matter.
Meanwhile, last week was a big one for RFAs: more that $87 million was obligated. Not surprisingly, ME/CFS was not one of the lucky beneficiaries.”
Sure, actions are key. And I thought you asked a great question at the teleconference.
“Therefore, the only assumption we can and should make is that an RFA is not forthcoming. ”
But that is overly harsh.
As you report, The NIH [Collins and Koroshetz] are pushing for RFAs. They said won’t happen til May earliest, so lack of funding this week is hardly a surprise.
And yes, not guaranteed, and only actions count, ultimtately, but I find it hard to assume that we are not further on. When the head of the NIH says he wants to see RFAs, that is progress, surely?
I think the RFA tracker is a terrific idea – but we now know there will be nothing for a couple of months at least, so it would be a shame to report ‘still no action’ every week during that period, as if it were repeated failure by the NIH.
I hope you will focus instead on what happens – or fails to happen – come May. That is now the time for the NIH to deliver.
ps my write-up, based on the transcript:
http://www.meaction.net/2016/03/10/nih-aiming-to-commit-rfa-funds-to-mecfs-research/
I did not say there has been no progress overall. And I don’t fault Koroshetz for being unable to give me a straight answer. My point is that having RFAs as something they’re working towards, and presenting to Councils in May, does not translate into an RFA in May or soon thereafter. The Councils could say no. They could offer up paltry funding. The effort could stall for a hundred reasons.
It is not “a shame” to report the status of NIH RFAs between now and May. Understanding what NIH is doing overall is an important part of focusing on what does or does not happen. For example, NIH has committed more than $1.7 billion in RFAs since October. If they announce a $1 million RFA in May and say that’s the best they can do, having the full context will enable us to respond with well-informed advocacy.
I will most certainly focus on what does or does not happen in May. But I will also keep an eye on what happens before this “time for the NIH to deliver.”
Agree with that, it was simply the assumption ‘we should assume no RFA’ that I thought was going a bit too far, as if we had learned nothing in the teleconference.
>It is not “a shame” to report the status of NIH RFAs between now and May.
I hope you will be reminding readers that it’s clear from the NIH that May is the earliest for action, so they have all the info.
As you say, the amount of the RFA, and comparisons with other illnesses, will be key and the data you are collecting is invaluable. Thank you.
Simon, I don’t have any obligation to constantly remind readers that May is the earliest for action from NIH. To be perfectly clear, I think it is vitally important that the public see that RFAs are ticking along quite nicely for other areas of research. Why on earth should I say anything that implies it does not matter because NIH has said maybe something will happen in May?
NIH got $2 BILLION dollars above its budget request to Congress. ME/CFS research needs a chunk of that, and fast. Don’t you think other program officers are scrambling to get Council approval to get some of that money? That $2 billion is chum in the water – and the slow pace of ME/CFS related action means the sharks could have cleaned up that chum before our cause ever gets in front of Councils in May. I don’t know about anyone else, but I am not satisfied with bloody scraps the sharks can’t be bothered to eat.
What better time to keep asking and reporting ? It shows we are watching and engaged. It shows we care what happens to us. It is not a negative. It is a positive. I use the tracker to send it to my reps and those on the appropriations committees. Thanks Jennie for keeping on top of this !
A lot of us will be watching come May, Simon, and the amount of RFAs needs to be large if we are to believe there’s any real commitment from NIH.
At this point, all we have is a hint there may be RFAs to come, but I’ve not seen any idea of the amounts they have in mind. Have you?
It is my fear they will offer pocket change and patients who are so used to getting nothing will eagerly accept any meager amount.
The NIH has a lot to make up for regarding this disease, and when there’s a 2 billion dollar windfall, our illness deserves a fair amount to finally do the research that has been lacking for over three decades.
I hope they rise to the occasion and see that a proper amount of money is earmarked for ME.
However, the current reality, reflected on the ticker, is still ZERO dollars for ME and over a billion dollars for other diseases. This must be documented.
I agree, NO money is where we started in September! I for one am watching the ticker, and hoping….and hoping…..and hoping……
Like many government agencies, NIH rises to the occasion best when someone lights a fire or two under them.
I agree, Deborah!
I’ve been studying Dr. Collins’ speeches and press releases for years now. He regularly says nice and pleasing things and even executes on a token amount in order to deflect what needs deflecting. Saying he wants to see RFAs certainly was very nice, and represents an improvement over not saying so. However, the giveaway was that he did not mention us in his presentation to House Appropriations. If big bucks were in the cards he would have been using the prospect of delivering on M.E. (which, remember, was a big issue to reps and Senators in Conference) to lever his funding.
Also, while everyone at NIH politely maintains the illusion that the Council will rule on what Drs. Collins and Koroshetz ask for, in reality Dr. Collins can sway what it rules on short of madness. Actually, at this point, if people like Ron Davis keep up pressure, it may be more trouble than it’s worth not to come up with an RFA. But we’ve had the signal that it won’t be much. We would need ACT-UP scale agitation between now and May to raise the ante. We need Jennie reminding us often.
Time for people to contact their congressmen and senators. Make your words matter.
Yes! Thank you.
Thank you for your continuous reporting, Jennie. It’s giving me a context I did not have before in which to put whatever actions NIH takes with regards to ME/CFS.
You do such important work.
I agree with everything Jennie says here and others.
I have been sick with this disease for 30 years and four months. My clock is ticking. I’d like to see progress in research and government funding for it.
But I’m not holding my breath either and am not getting my hopes up. When there is a real commitment with (adequate) dollars attached to it, whether in May or later, then I’ll be more optimistic. But until this is real and concrete, I’m making no assumptions.
Meanwhile, thanks to Jennie for keeping track of the RFA’s, posting the information and asking the relevant questions, and to everyone who is keeping the pressure on the NIH.
Jennie,
Thanks for doing this. For far too long the CFS community has been content to be told the equivalent of “it will be any day now” from our government and some of our national advocacy organizations. It’s time we looked at reality based on observed facts not happy talk. Happy talk will not make us better. After 20+ years of happy talk I am in the mood for facts.
Thank you, Jennie. Your continued diligence, tracking, and advocacy is greatly appreciated.
Nothing about this is judgmental. If the numbers look bad, it’s because they are bad! If the humans behind the NIH curtain want to do something beneficial while we’re waiting for funding, then they can update .gov ME website info: make a statement condemning PACE, issue CFSAC’s blackbox warning for activity, make a public-awareness statement about the profound neglect and stigma often experienced by people with ME, and edit out the misnomer “CFS”. They should be able to make those changes in under an hour!
Jennie, I gratefully commend your work and your judgment. You should not be faulted for caution over prospects for the RFA that is key to NIH boosting M.E. research significantly — say, enough to begin saving our lives. Only a jump-start from an RFA can hope to overcome the two decades of negativity about M.E. research that NIH has embedded in scientists’ minds.
As someone who worked for a number of years covering Washington events I can attest that people who have power very often get what they want, while people who don’t have power very seldom do. And beware an entrenched opposition! Our road ahead remains steep and rocky.