Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system. State health departments use the data collected to plan health projects and allocate resources; national
On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We are demanding urgent action to increase funding for research, find a diagnostic test, support clinical trials, and develop treatments, and a meeting to discuss all this with NIH Director Francis Collins. We also sent this video
The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)
Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under Ron Tompkins and Wenzhong Xiao, to the tune of $1.8 million dollars. The Center will include with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center. There are two main goals
Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and wait.” Blogger Jennie Spotila describes the agency’s plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative Research Centers to lead
Yesterday, the U.S. Congress introduced a resolution in the Senate to show support for research and medical education for Myalgic Encephalomyelitis (ME).
The impact of #MillionsMissing 2018 was phenomenal. Protestors took to the streets in 100 countries across the world with demonstrations taking place in North America, South America, Europe, the United Kingdom, South Africa and Asia. Along with people taking action from home, there was a total of 300 visibility actions. More than 50 news organizations ran
This anonymous patient was truly moved by viewing Unrest and is sharing this personal reflection to encourage action.
The logic is crystal clear for why the National Institutes of Health (NIH) should make a serious commitment to funding research for ME/CFS. The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29
