***UPDATE: THIS ACTION IS NOW OVER*** Please contact your SENATORS and urge them to co-sponsor a ME/CFS Awareness Day Resolution NOW! Although the original co-sponsors would like to receive sign-ons as soon as possible and ideally by COB Wed, May 8th, they’re willing to accept co-sponsors up until the passage of the bill, targeted for this
***UPDATE: THIS ACTION IS NOW OVER*** ADVOCACY WEEK LOCAL ACTIONS As many of you know, Advocacy day is April 3rd in DC. Activists will be traveling from around the United States to have meetings with their elected officials to demand recognition and action for people with ME. No matter if you are in DC
***UPDATE: THIS ACTION IS NOW OVER*** Senator Markey is currently asking for support from his fellow Senators for TWO requests that can increase funding for ME! These requests would include: 1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee) 2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee) What our
***UPDATE: THIS ACTION IS NOW OVER*** Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME! These requests would include: 1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee) 2) Add ME to the Peer-Reviewed Medical Research
This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and allies who emailed them. Staff
***UPDATE: THIS ACTION IS NOW OVER*** Please contact your MEMBERS OF CONGRESS IMMEDIATELY and urge them to sign a bicameral letter to the Department of Health and Human Services (HHS). The joint letter – from both the House and the Senate! – (1) states that more must be done by HHS to address ME/CFS
For the past 35 years the FDA has neglected to bring meaningful treatments to market for people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). The lack of FDA-approved drugs means many patients rely on compounded medications to help improve symptoms and quality of life. The FDA is considering banning substances that have helped people
What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health professionals in the UK base their care of people with ME on these guidelines, and they are influential globally. Since their inception, patients and their families have found the current guidelines detrimental to care. Last week,
PLEASE NOTE: The Unrest CME has now expired. However, you can still recommend the film to your provider and access the associated materials. The film is available on Netflix and can be found here. We are so thrilled to announce that US healthcare providers – including doctors, nurses, physician assistants, therapists and social workers – can now
The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME) is a psychosomatic illness. Per Fink has been invited to speak at a psychosomatic conference at Columbia University in New York City on Saturday, Oct. 20th. Columbia University will reward medical providers who come to hear Per Fink speak with Continuing Education
