Within any large organization is a system of operating that is best navigated by those who work within it. That’s why the ME/CFS community is lucky to have among its ranks, Dr. Vicky Whittemore (NINDS liaison to ME/CFS), who understood exactly what was needed to make progress on ME/CFS within NIH. A year ago, she and Dr. Walter Koroshetz (NINDS Director) pushed for the establishment of the National Advisory Council (NANDS Council) Working Group; a group of individuals committed to articulating the needs to advance ME/CFS research and defining the pillars that would become a strategic plan for advancing those needs.
Solve M.E. was invited to join the Working Group and was represented initially by former Solve M.E. President and CEO Carol Head, then later by myself. Also present in the distinguished group were Solve M.E. Research Advisory Council (RAC) members Dr. Rochelle Joslyn and Dr. Anthony Komaroff, and recently appointed Solve M.E. board member Amrit Shahzad. The full list of working group members can be found here.
The Working Group focused on:
- identifying gaps and opportunities in ME/CFS research,
- considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators, and
- identifying potential approaches to enhance ongoing research collaboration and communication between NGOs, individuals with ME/CFS, researchers, and federal agencies that support research in ME/CFS.
We are thrilled that last week, the Working Group published its report on how the NIH can address identified gaps in ME/CFS research, which was unanimously accepted by the NANDS Council. You can read the full report here and you can read ME/CFS thought leader Cort Johnson’s reaction on Health Rising here.
Within the report, there are a couple of areas, we at Solve feel most passionate about. The first, a focus on strategies to facilitate basic and clinical research and approaches to bringing more researchers, including early-career investigators, into the field. Doing exactly that is one of the main objectives of our Ramsay Grant Program. The Ramsay Program is specifically designed to increase the researcher pipeline, and facilitate applications for larger grants based on promising pilot data. Going forward, we intend to grow and expand this program.
The second, the importance of establishing a registry and biobank. Many of you have heard me talk about big data and how pivotal I believe it is to understanding the causes of and treatments for ME/CFS. We believe the You + ME registry we are developing will fill this need.
The delivery of the report is just the beginning of what we anticipate will be a sea change in how ME/CFS is addressed within NIH, giving Vicky and the Trans-NIH ME/CFS Working Group the leverage and funding they need to take much needed action on this disease. With our participation in the Working Group, we will continue to advise this powerful entity on how to better serve our community. We’ve taken a seat at the NIH table, and we are saving one for you. Together, we can take a leadership role in partnering with the NIH to work with and for the ME/CFS community.