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