Uniting the ME/CFS community is not easy, but it has never been more important than right now. One thing we all agree on is the urgent need for vastly increased funding at the National Institutes of Health, our nation’s scientific research machine. When two federally funded reports told NIH that there was an “urgent need” to invest in ME/CFS research, a number of advocates seized the opportunity to push even harder for substantive change.
Among the efforts, a recent one was aimed at demonstrating consensus among advocacy groups on a platform of immediate next steps toward full funding at NIH. I worked with many ME/CFS advocacy organizations to fashion a 5-point platform for next steps at NIH and, with endorsement of a broad set of groups, sent it to Secretary of Health Burwell and NIH Director Collins in September.
The 1-page platform builds on engagement by patients, experts and advocates since the release of the IOM and P2P reports. Last spring, more than 500 patients and caregivers sent emails to Secretary Burwell and Director Collins highlighting the “urgent need for research” validated by both panels, calling on them for equal funding. CFSAC, with significant input from advocates, made recommendations to operationalize the IOM report and much more. SolveMECFS hosted a Congressional Briefing with Morgan Fairchild, among other things, and advocates engaged meaningfully with the Senate Appropriations Committee after it zeroed the minuscule funds earmarked to CFS in the CDC budget. MEAction is a welcome new force in catalyzing patient engagement.
The confluence of the two federal reports, the results of the Lipkin/Hornig immune studies, and numerous powerful media stories have created a demand for change that that has rarely been seen before.
I believe it is important to demonstrate our unity, to show the Secretary and NIH at every turn that we are united in our goal of equal funding for the science that can diagnose, treat and cure our disease. The more we act in concert, the more we will achieve.
Editor’s note: We at #MEAction believe in empowering a diversity of views and strategies within the movement. However, there is a strong consensus around the goals of Courtney Miller’s letter and so when she approached us about adding our support, we put the letter to a vote of all registered users of #MEAction. 57 users participated and support for the letter was nearly unanimous.
We are writing this article to share some exciting news! On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise