NIH Funding for ME/CFS extramural research will increase

Author:

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
Facebook
Twitter
WhatsApp
Email

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

  1. 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!

  2. Congratulations.
    That was quite the feat, getting the issue in front of President Obama, and getting that promise from him.

  3. 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.

Latest News

blackish rectangle with the words, MEAction Georgia Volunteer - Maggie Boxey- at TEDxOjia with the meaction logo in the bottom right corner.

#MEAction Georgia Volunteer, Maggie Boxey, Speaks at TEDxOjai

#MEAction Georgia recently had a huge accomplishment. Maggie Boxey, who is a member of the Georgia State Chapter, a Navy veteran, and a published author, recently gave a Tedx talk about her experience as a person with ME. Maggie was diagnosed a year ago but has been sick since 2020. Before becoming sick Maggie and

Read More »

SOS: Save our Science

People disabled by ME and Long Covid across the UK send out an SOS.  It’s time to send out our SOS signal, if we want to have funded research. May 12th, is Myalgic Encephalomyelitis Awareness Day. On this day, the #MillionsMissing of people with myalgic encephalomyelitis (ME) gather to demand an increase in research and

Read More »
a blue square image that features waves as the background. The 2025 #MillionsMissing logo at the top. followed by the words, Why We're sending out an SOS. A life preserver is in the bottom right corner and the meaction logo is in the bottom left corner.

Why We’re Sending out an SOS this #MillionsMissing

On May 12th, #MEAction and the #MillionsMissing are sending out an SOS to Congress to Save our Support Systems. Save our Science. Save Our Society.  HERE’S WHY: Healthcare, research funding and accessibility were already incredibly fragile for people with myalgic encephalomyelitis (ME), Long Covid and the disability communities. Now, we are seeing constant threats to

Read More »
Scroll to Top