State petitions and a global solidarity petition will be delivered to members of Congress in advance of appropriations deliberations in 2016. We demand $250 million dollars in annual research funding for ME.
This is a US bill that passed in the House and is currently making its way through the Senate. It would provide for $8.75 billion new dollars in funding to the National Institutes of Health (NIH). #MEAction is asking for language to be put in the bill that moves the disease from the Office of Women’s Health to the National Institute for Neurological and Stroke Disorders (NINDS) and calls for it to be funded at a level equal to disease burden and cost to the economy. You can read more about our activities here. And see the one pager we have been using for Senate meetings here.
Generally, while Congress is responsible for authorizing the entire budget for the NIH, it is NIH officials themselves who are responsible for the funds’ allocation and distribution. That said, Congress can make recommendations to NIH.
Solve ME/CFS, MassCFIDS, #MEAction and others have signed on to a letter drafted by Courtney Miller to US Secretary of Health Sylvia Burwell and NIH Director Francis Collins. The letter calls for a new research strategy and funding commensurate to disease burden. #MEAction signed on after a near unanimous vote by our site’s registered users. You can read the letter here.
The CDC ME/CFS funding was cut to $0 for the 2016-2017 fiscal year. After a One Click Politics campaign organized by Solve ME/CFS and #MEAction, several advocates met with congressional appropriations staffers and learned more about the process. While the community’s efforts definitely got these staffers’ attention, it is not clear whether funding will be reinstated for the next fiscal year. The funding cannot be reinstated unless budget caps are lifted. You can read more about the controversies of the CDC’s ME/CFS program here.
David Tuller wrote an in-depth, investigative piece on the methodological flaws and irregularities of the PACE trial, a UK study and one of the most expensive studies of ME/CFS in history. Using questionable outcome measures, it found that ME patients improve with exercise (GET) and cognitive behavioral therapy (CBT). The trial’s authors continue to maintain that GET and CBT are effective treatments. For more, see our PACE trial hub page.
#MEAction has launched a petition calling for the retraction of misleading claims.
Karina Hansen is a young, adult severe ME patient who was taken from her home by police in Denmark in February 2013 to a center for the treatment of functional (psychosomatic) illnesses. You can follow the work of Justice4Karina at their website and Facebook Group.
If you are interested in working on human rights issues related to ME, we have launched a working group. One of the first steps we hope to take is to write a short primer to provide experts and journalists outside of our community with an introduction to the history of forced institutionalization, discrimination, and denial of care ME patients around the globe face.