NIH Funding for ME/CFS extramural research will increase

October 29, 2015

Author:

Courtney Alexander Miller

Bob and I have advocated for a decade for funding equality at NIH and FDA approval of the first ME/CFS medication, from Pres. Obama's promise to Bob's hunger strike re: Ampligen.

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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.

Saying there are new tools and research approaches to apply to ME/CFS, the Director pledged to continue to be involved in developing NIH’s work and to integrate our disease experts. Patients and advocates played an essential role in advocating for a stronger NIH response, from meetings to the Obama Promise to emails to participation in the IOM and P2P processes, which taken together with recent published science have created a turning point at NIH and for our 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.

Read More:
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

Categories: All News, Featured news, United States

3 thoughts on “NIH Funding for ME/CFS extramural research will increase”

Russell Fleming
October 29, 2015 at 7:02 pm

Well done and many thanks to both of you. Today has seen a much need boost my own morale after British media efforts yesterday. I very much welcome this news as well. Well done America!
Erik Johnson
October 30, 2015 at 12:12 am

Congratulations.
That was quite the feat, getting the issue in front of President Obama, and getting that promise from him.
Laura Benton
October 31, 2015 at 2:44 pm

Awesome news! Well done! Thank you to all ME/CFS activists and advocates!!! Your efforts are finally beginning to pay off:-D

Comments are closed.

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