Well hey, another Monday! And guess what? It’s another Monday with no ME/CFS RFA to report!
This is like a bad habit you cannot break. They say that the definition of insanity is repeating the same behavior and expecting a different result. I’m feel like we’re stuck in the movie Groundhog Day, doing the same thing over and over and over.
Look, NIH has issued more than 260 RFAs this fiscal year. They have committed over $2.2 billion to those RFAs. With a little over two months left in the fiscal year, we are still waiting to see if we’ll get anything at all.
In March 2016, NIH told the CFS Advisory Committee, “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research that will include new RFAs.” On the March 8, 2016 telebriefing, Dr. Collins himself said the same thing: “So in addition, on the extramural side, a vigorous, reinvigorated Trans-NIH Working Group is working to define the strategic areas of research that would form the basis for a request for applications to the extramural community, both in the short-term and in the longer term.”
Dr. Vicky Whittemore said at the May 2016 CFSAC meeting that she hoped to issue an RFA in June or July, after concept clearance by the NINDS Council. In an email to me on July 13, 2016, Dr. Whittemore said, “We are working on the ME/CFS research consortium RFA.”
Back in November 2015, Dr. Collins told NPR: “”It will be substantially greater than the current five or six million a year . . . We are going to ramp this up.” WE ARE STILL WAITING.
I know that federal bureaucracy moves slow. I know that Zika virus is the health crisis du jour. I also know that ME patients continue to commit suicide, continue to suffer, continue to wait.
I’m tired of it. How about you?
- Total RFAs Issued by NIH: 262 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,223,491,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
| Week Beginning | RFAs Issued | Total Commitment | RFAs for ME/CFS |
|---|---|---|---|
| 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.
Ugh, seriously.
Definition of persistence: the quality that allows someone to continue doing something or trying to do something even though it is difficult or opposed by other people.
I’m with you. I beyond tired of this waiting “game”.
Time’s (still) a wastin’ NIH!
But the reality is that patients don’t have time to waste! More than enough of that’s already been done by the PTB.
We want to lead productive lives! In order for that to happen, significant changes are needed in research funding and research quality.
Step up and do what’s right NIH!
And do it NOW!
“This is a high priority for us.” Cheryl Kitt, August 2015
“reinvigorated Trans-NIH Working Group”
There is nothing to “re-invigorate” because it was never intended to be “vigorous” in the first place. Rather, the purpose of the Trans-NIH group is to spread responsibility so thin that it becomes very very easy for busy paper-shufflers and meeting-organizers to adopt the attitude that the research program is actually the responsibility of somebody (*anybody*) else. If *everybody* is responsible, then obviously *no one* is responsible, and no one faces consequences for the failure to fund research.
It’s been 17 years since Antony Fauci and Harold Varmus (former NIH director) stabbed us in the back by kicking the research program out of the NIAID:
“Dr. Anthony Fauci, NIAID Director, met with the Dr. Harold Varmus, Director of NIH, [in Oct 1999] and concluded that CFS was more complex and activities should be relocated from a single NIH institute.”
-CFSAC minutes Sept 2003
When we get an RFA we won’t know what to do with ourselves!
It doesn’t seem to be a problem we’ll be facing soon, though.
Stay strong. Don’t give up. Your posts are much appreciated.
Is the NIH just waiting to see what is left over after committing funds for RFAs for other all the other diseases, then just give us the table scraps?
“I’m tired of it. How about you?”
Hi Jennie,
Thanks for keeping us informed with the RFA Ticker. Reading the “Zero’ each month sadly reminds me that my diagnosis has a very low priority in government funded research. Given the 30 year history of this trend in the US, do you think the community is open to exploring other options to gain a QOL?
Thanks,
Janine