As I predicted, last week was another bonanza for RFAs. Another $130 million dollars was set aside, and NIH has now issued $2.6 billion in RFAs this fiscal year.
There’s a package for clinical centers and a data coordinating center for the Blood and Marrow Transplant Clinical Trials Network (almost $70 million). And there’s an RFA for early stage investigators that will make awards to sustain a program of research, as opposed to each individual project ($26 million). Other smaller projects make up the remainder of last week’s pot of gold.
I am not suggesting that NIH isn’t working on the RFA for the ME/CFS research network. There’s no indication that the idea has been dropped, and I believe that the RFA is in process. But I don’t know if it will be issued before the end of the fiscal year. Dr. Whittemore had estimated that the RFA would be issued in June or July. Obviously, there’s a hold up, although we don’t know what obstacles are in the way.
This is sickening to me. I can’t describe it any other way. Dr. Collins made a big show of support for ME/CFS research, and made a lot of promises (although vague ones). We’re still waiting. The RFA is late. The Clinical Care study is running late (Dr. Nath originally said enrollment of healthy controls would happen over the summer).
I feel like we’re waiting for a train that will never come. Every once in awhile, a conductor tells us the train is coming. When we become angry passengers and demand to know what is delaying the train, there’s a flurry of hand waving and promises to check it out right away and can we offer you some water while you wait. So we settle down and sit on the benches. And we wait.
- Total RFAs Issued by NIH: 305 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,650,685,617 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 8/15/16 | 16 | $130,685,000 | Zero |
| 8/8/16 | 13 | $137,053,000 | Zero |
| 8/1/16 | 9 | $30,900,000 | Zero |
| 7/25/16 | 5 | $128,556,617 | Zero |
| 7/18/16 | 3 | $17,950,000 | Zero |
| 7/11/16 | 10 | $75,855,000 | Zero |
| 7/4/16 | 0 | $0 | Zero |
| 6/27/16 | 3 | $12,971,000 | Zero |
| 6/20/16 | 1 | $2,000,000 | Zero |
| 6/13/16 | 5 | $21,475,000 | Zero |
| 6/6/16 | 5 | $7,100,000 | Zero |
| 5/30/16 | 4 | $6,900,000 | Zero |
| 5/23/16 | 8 | $42,400,000 | Zero |
| 5/16/16 | 2 | $7,800,000 | Zero |
| 5/9/16 | 11 | $32,100,000 | Zero |
| 5/2/16 | 8 | $32,485,000 | Zero |
| 4/25/16 | 4 | $7,500,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/18/16 | 10 | $42,230,000 | Zero |
| 4/11/16 | 4 | $6,825,000 | Zero |
| 4/4/16 | 8 | $27,000,000 | Zero |
| 3/28/16 | 13 | $161,000,000 | Zero |
| 3/21/16 | 1 | $2,700,000 | Zero |
| 3/14/16 | 5 | $23,650,000 | Zero |
| 3/7/16 | 9 | $82,710,000 | 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 | 4 | $9,300,000 | 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.
Welcome to Bethesda’s Potemkin Village.
I feel we’re being ‘waited out’ – if they don’t do anything, they think maybe we’ll just shut up?
Like the SSA does when it automatically denies many applications the first time they’re made (it took me three tries).
We can’t go away, any more than AIDS patients were able to ‘go away.’
And I had such hopes for 2016!
Reminds me to be sure this kind of stuff is expressed clearly in Pride’s Children 2 and 3 – the reason my main character takes care of herself (in 2005) and isn’t seeking more help (even though she used to be a physician) is BECAUSE THERE IS NONE. So we have to manage our own lives as best we can, with the heavy additional burden that doctors and researchers think we’re not all here in the top story.
A good many of us felt that the real purpose of that crazy P2P project was to bury us so deep in the NIH bureaucratic machinery that we would never see the light of their day–I think that fear is being confirmed. The NIH must be hoping that the Lipkin/Hornig, Davis/Naviaux, and other strong combinations will, without any substantial money from them, find the solutions, and spare them the trouble. I think Alicia Ehrhardt is right–for the time being, we will have to manage on our own.
“I feel like we’re waiting for a train that will never come. Every once in awhile, a conductor tells us the train is coming.”
The train seems to be moving in reverse:
1. The ID assigned to the Clinical Center study by clinicaltrials.gov is still “not found”. [1] When the Trial Recruitment Notice [2] was first uncovered, we were told that the notice was merely a preliminary placeholder created in order to get a NCT number assigned.
2. There is still no published revised protocol for the Clinical Center study.
3. The NIH Clinical Studies website has been offline for over a month, which means they can no longer use this website to publish a revised recruitment notice. [3]
4. There is still no official response to the IOM or P2p reports.
5. There are still ZERO papers published from the ballyhooed CDC multi-site study, which was started over FOUR years ago. [4]
[1] https://clinicaltrials.gov/ct2/show/NCT02669212
[2] http://forums.phoenixrising.me/index.php?threads/nih-post-infectious-cfs-study.42873/page-24#post-700489
[3] http://www.cc.nih.gov/home/clinicalstudies.html
[4] http://www.cdc.gov/cfs/programs/clinical-assessment/index.html
The important thing for the CFS/ME community is to honestly measure what the government actually does (as opposed to what they say or promise). Perhaps folks could come together and create a CFS/ME metrics web site. There we could collect objective data measuring the governments response over time in a systematic way. We may come to conclusions we might not like but at least those conclusions will be based on truth. After all if you want to change reality you must understand it first.
I agree with your assessment that it’s like waiting for a train that never comes. This is so upsetting and unfair.
We all appreciate your hard work on this. It is like telling your landlord that your roof is falling down and he pats you on the head, gives you water and says it’ll be taken care of. Meanwhile, plaster is falling down.
I wonder what it will take to get the government to move. I think that was a good insight in a comment that the NIH is waiting for Columbia, Cornell, Stanford to come up with a cause and markers for ME/CFS and then Washington doesn’t have to pay out anything and direct researchers to work on our disease.
This is why I wish we could do what ACT-UP did, have sit-ins, lie-ins, a “Silence=Death” campaign. They got national attention and people who were ill had thousands of activists supporting them and acting-up. But we are so immobilized by this disease and can’t do this, but what can we do?
The powers that be want to wear us out so we stop pushing, but the only answer to that is to push harder. I say this knowing our limitations, certainly mine.