Bob and Courtney Miller are writing a letter to Francis Collins, Director of the National Institutes of Health (NIH) and Sylvia Burwell, US Secretary of Health asking that the NIH:
- Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability.
- Fund a mix of intramural and extramural research (as NIH does for Multiple Sclerosis and scores of other diseases), including a focus on identifying diagnostic biomarkers.
- Form and fund translational networks and centers of excellence, utilizing clinical experts in the field to build on recent collaborations and findings.
- Design and fund clinical trials for drug development, so ME/CFS patients can have our AZT; government can catalyze private investment by the pharmaceutical industry; and scientists can study the responders.
- Present a plan to ramp up funding to a per-patient level on par with Multiple Sclerosis over the next two to three years.
You can read the full draft of their letter here.
#MEAction has taken a big tent approach, supporting and sharing a wide variety of advocacy endeavors. However, there are times when we need to speak as one voice. Several American ME and CFS organizations have signed onto this letter. We would like to take a vote of registered #MEAction members to decide whether or not #MEAction should also sign this letter.
You can vote using the poll below. Have feedback? Leave a comment. Voting closes at 11:59PM Pacific Time on Sunday September 27th.