The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in
April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME. Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI
As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of the meeting, click here.
This Giving Tuesday, I’ve got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: “This article explores their effects on federal medical research priority-setting.
The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily lives. We continue to
This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center — and they invited Per Fink to speak. If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young woman with ME. [pullquote
Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care and investment in biomedical research for ME. Gaining MPs support in lobbying for change is vital to our success. So whether you are a person with ME, their carer, friend, family member or ally, we are
Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.
Back in February 2017, Senator Ed Markey (D-MA) publicly announced at a packed town hall meeting that he would advocate for ME. A few short months later, he did just that! His first act as an ME advocate was to sponsor a Congressional Briefing on Capitol Hill on May 18th. The briefing — which included
California – A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before the California Senate this Thursday. Now, is a great time to educate your California Senator about ME/CFS, and let them know that you are a constituent who cares about this cause. Even though the resolution (which
