In September, fifty-five members of the House of Representatives sent NIH Director Dr. Francis Collins a letter in support of more ME/CFS research. Dr. Collins has now responded, but it is hardly satisfactory.
You may recall that Representatives Lofgren and Eshoo were the leading signatories on a letter to Dr. Collins in March 2014 that asked him to act on the P2P recommendations and the CFS Advisory Committee recommendations for an RFA. In September 2016, a total of fifty-five Representatives signed a new letter to Dr. Collins at the request of MEAction and collaborating advocates and organizations.
This new letter asked for an update on the Trans-NIH Working Group planning efforts, and specific plans for ME/CFS research through FY 2018. Despite this seemingly modest request, the Congressional letter breaks new ground. I don’t recall ME advocates ever garnering this kind of support from so many members of Congress. Not only that, but this success and the September 27th protests demonstrate a steady increase in support and public pressure. Advocates are justifiably proud of this achievement.
Dr. Collins responded to the letter on September 29th (click the images to enlarge, and my apologies for the image quality):
What is striking about this letter is that it contains very little news. Let’s take a look at what Collins said and what we know.
- “[T]he NIH has already funded seven supplements to existing awards focused on understanding the causes and mechanisms of ME/CFS.” We knew about the supplemental funding generally, but this is the first time I have seen a number applied to the effort.
- “The NIH is preparing two Requests for Applications (RFAs) which will support ME/CFS collaborative research centers and a Data Management Coordinating Center. These RFAs will be released once they are finalized.” We knew this.
- “The Working Group is preparing a summary of the [RFI] responses and will use the input to help guide future ME/CFS research and research training.” We knew this.
- “We are finalizing the protocol and the informed consent forms and healthy volunteers are being recruited to participate. The goal is to admit the first set of healthy volunteers next month.” We knew this.
- “The NIH recently formed an ME/CFS Scientific Interest Group . . . [and] started a bimonthly seminar series with internal and outside experts.” We knew this.
What is missing from Dr. Collins’s letter to Congress?
- Specific dollar amounts
- Specific timelines
- The status of the planning effort
- Specific activities planned for FY 2017 and 2018
None of this is a shock. These letters are public records, so no information will be included that is not ready for public dissemination. Perhaps the missing elements are in development, but it is also possible that there are no plans for FY 2017/2018 beyond what we know already.
What is surprising is that we are coming up on the one year anniversary of Dr. Collins’s big promise to ramp up ME/CFS research. Regardless of what may or may not be in the NIH pipeline, we should be further along than we are. We should have the RFAs already. We should have dollar amounts and timelines. We should have a sense of urgency. We should have plans for 2017 and 2018.
As Janet Dafoe said at the #MillionsMissing protest on September 27th: we are not pleased yet. We need transformation NOW.