Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her “forgotten years” of having severe Myalgic Encephalomyelitis (ME) for 11 years since the age of 15. Her book focuses on the four years she spent hospitalized during which she was unable to speak, eat or move for the first two years.
Join us for a presentation and discussion on non-violent direct action with Alexis Danzig* and Terri Wilder on Sunday, April 16th at 3 pm EST (U.S.) / 9 p.m. London time. The call will run for 90 minutes and is geared towards a global audience. New and seasoned activists are highly encouraged to attend; those just
#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face of the ME community. Send in a still photo or 5-second clip of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. We will include these clips of people with
URGENT Congressional Action! Ask your House representative to sign a letter that inserts favorable language for ME into the House Appropriations Committee report on the FY18 budget. Deadline to sign: Tues., April 4th. Contact your House rep. today! See instructions for calling and emailing below. ~ U.S. House Representatives Zoe Lofgren and Anna Eshoo have agreed to sponsor
The University of South Australia will begin a research study that looks at how active video gaming can increase physical activity in adults with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
The study has no set research criteria, despite studies that show 2 out of 5 patients are misdiagnosed with CFS/ME in Australia.
Please note: #MEAction welcomes submissions from all contributors regarding issues that affect the health care of people living with Myalgic Encephalomyelitis. This action reflects the viewpoint of the individual submitter and not necessarily of #MEAction. We welcome all submissions regarding the American Health Care Act. #MEAction is a non-partisan organization, and is not affiliated with any political party.
Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring.
The South African investigative journalism program Carte Blanche has aired a well-researched segment featuring the struggle of the ME community around the world. An article about women suffering with ME in South Africa accompanies the video. The segment includes footage from the #MillionsMissing protest in September. The ME/CFS Foundation South Africa was behind getting the program
A research team at Stanford gave an update yesterday on some of the breakthroughs its team has made in understanding the metabolic cycles that are not working properly in people with ME/CFS that might be at the heart of the disease. Ronald W. Davis, PhD, made the announcement via YouTube. Davis directs the CFS Research Center
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life. Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about the planned ME research
