From Bob and Courtney Miller:
We are excited to share news that the NIH has elevated its research approach to ME/CFS with important structural changes the patient community has been asking for. NIH announced today that ME/CFS will become housed in the National Institute for Neurological Diseases and Strokes, moving it out of the Office of Women’s Health.
Bob and I were personally assured this morning by NIH Director Dr. Collins that funding for disease research will increase (emphasis added), tied to an extramural research plan to be formulated by NINDS Director Koroshetz. Additionally, the NIH Clinical Center will conduct a deep research study of patients at its hospital, and will re-form the Trans-NIH Working Group with “decision makers” across the Institutes, chaired by NINDS Director Koroshetz. Dr. Collins was clear to us that there will be a major research role for NIAID, referencing the importance of studying immunological factors of the disease.
We embrace these changes, and are encouraged that the Director’s Office has led a new direction for ME/CFS research. We look forward to working together with patients, experts, and the NIH on follow-up, to make the most of these changes and successfully expand research that will lead to diagnosis, treatments and ultimately a cure. It has been a long time coming, and we have a lot of catching up to do in the science of our disease. More details and increased funding will need to be forthcoming to fulfill the potential of these changes, but this announcement is a promising set of steps necessary for a strong federal research program.
NIH press release: http://nih.gov/news/health/oct2015/od-29.htm
Atlantic Monthly story with quotes from Dr. Collins: theatln.tc/1NDffHt
Courtney Miller’s Letter to the NIH