It’s December and the news we’ve all been waiting for – the announcement of ME/CFS RFAs – has not come. But other things of note have been happening. On the RFA front, NIH has passed half a billion dollars in RFAs for the year, with more than $100 million issued just last week.
In news related to ME, the Trans-NIH Working Group has published a few items that we have been awaiting. Dr. Vicky Whittemore’s presentation on NIH research efforts from the October 2016 IACFS/ME meeting has been posted. One item of note is that apart from the upcoming research/date centers RFA, additional RFAs are part 0f the long-term goals for 2018 and beyond (and even then are not promised).
Of greater interest is the NIH Portfolio Analysis for 2007-2015. There is not a lot of detail in the analysis, and this obscures some interesting discrepancies. For example, page 2 presents a chart of research spending for each year. For 2010, the funding listed is about $4 million. But as I’ve previously noted, NIH originally claimed more than $6 million was spent on ME/CFS that year. Once you strip out the unrelated and XMRV research, the number is much closer to $4 million. There is no explanation in the portfolio analysis for where the $4 million figure came from, or when NIH decided to stop counting the unrelated grants. The conclusions drawn from the portfolio analysis (page 6) are disturbing, but not new. There is a very small pool of ME/CFS investigators, few new investigators are coming in, and sample sizes are very small. The single most important way to fix these problems – money – is not acknowledged.
The final news is the long awaited publication of a summary of the federal partners meeting on the P2P report. That meeting is the final step in the Office of Disease Prevention’s P2P process, as I noted in June 2015. The federal partners meeting was held in May 2016, 18 months after the P2P meeting, but we are just getting the report now. There are a lot of things to discuss about this report, but I will just point out one thing for now:
[T]his summary is intended to be a blueprint for the entire ME/CFS community. All stakeholders, including academic researchers, companies, government agencies, patient advocacy groups, and patients and their families, have a shared responsibility for meeting the needs described herein, and thereby improving the lives of people living with ME/CFS.
It is remarkable that the summary is intended to be a blueprint for all of us, when only federal partners participated in creating the blueprint. I see many places in this summary where the perspective of non-federal partners would have greatly improved the comprehensiveness and applicability of its conclusions.
One final note: Dr. Collins is very interested in remaining in his post, if President-elect Trump offers it to him. (hat tip to Denise Lopez-Majano for pointing me to that article)
Here are the current cumulative RFA numbers:
|FY 2017||FY 2016|
|RFAs for ME/CFS||ZERO||ZERO|
And here is the table for FY 2017 alone:
|Week Beginning||RFAs Issued||Total Commitment||RFAs for ME/CFS|
If you want more background on the RFA Ticker, read the inaugural post.