The RFI requests information that might be useful in “the development of a comprehensive research program focused on the relationship of fatigue to health.” This research program will be funded through the NIH Common Fund, a trans-NIH program with $565 million in funding this year. The Common Fund is the home of major projects such as the Human Microbiome Project and the Big Data to Knowledge program.
The Common Fund would be a good home for ME/CFS research, since it is strategic, cross-Institute, and has a large budget. So what does it mean that the Common Fund is looking at fatigue and not ME/CFS? This seems to line up with Dr. Collins’s comments during his appearance on the Charlie Rose show on November 4, 2015. In answering a question about the NIH’s new effort on chronic fatigue syndrome, Collins said NIH will:
figure out what is going on in this condition. And if we understood that maybe we’d know what fatigue of other sorts is all about. Why do people in chemotherapy get fatigue? We don’t really know, wouldn’t it be nice to have that answer.
I asked Dr. Vicky Whittemore to comment on the relationship between this RFI (she is the primary contact) and ME/CFS. As of this writing, I have not heard back. UPDATE July 14, 2016: Dr. Vicky Whittemore (the primary contact on this new RFI) told me:
The proposed Common Fund program on fatigue is in the planning phases after being approved by the Council of Council. The initiative will need to be approved by NIH leadership (this fall) before it moves forward, so there are currently no funds or resources approved for this program. It is a separate effort but if it moves forward, we will hopefully learn a lot about the underlying mechanisms of fatigue that could be applicable to the study of ME/CFS and other diseases, as well as fatigue in the normal, healthy population.
ME/CFS advocates have spent years telling NIH that our disease is not fatigue. It strikes me as the height of crazy that NIH may have finally listened, and is therefore about to pour a substantial budget (via the Common Fund) into fatigue research and not ME/CFS.
UPDATE July 14, 2016: It would be the height of crazy if NIH decides to devote substantial resources to fatigue research, and not ME/CFS. If NIH is willing to pour money into fatigue but not into ME/CFS, if we continue to be left on the sidelines or the bottom of the barrel, then advocates will be fully justified in interpreting those decisions as evidence of prejudice against ME/CFS, its researchers, and its sufferers. I hope this will not be the case. I hope that ME/CFS will be recognized as a serious disease – not just the symptom of fatigue – deserving of substantial resources. If a fatigue program through the Common Fund is the way we get that, then that would be fine with me.
- Total RFAs Issued by NIH: 249 (October 2015 to date)
- Total Dollars Committed to RFAs: $2,129,686,000 (October 2015 to date)
- Total RFAs for ME/CFS: ZERO (October 2015 to date)
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If you want more background on the RFA Ticker, read the inaugural post.