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|
If you want more background on the RFA Ticker, read the inaugural post.