Photo is of Rosie with her niece 10 years ago. Today we honor the life of Rosie Bayman who died from severe myalgic encephalomyelitis (ME) one year ago, today.* Rosie, from Warwickshire, England, had ME for five years before she died. Rosie wrote poetry in her head when she had to lie in darkness and in silence,
Listen to the article: Values & Policy Initiative Learn more This article is part of our Values & Policy Initiative, a six-month long process for the community to come together to learn and discuss our core values, tactics and positions so that we are more unified in our work as a large, diverse community. This process will culminate in
Listen to the article: On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I want to welcome and invite you to participate in what we are calling “Values and Policy,” an ambitious, six-month initiative to learn, engage, debate and ultimately devise the core tenets of
Listen to the article: #MEAction’s Values & Policy initiative has evolved out of the need to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community. As a first step, we asked the community last November to take a survey to indicate what
The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. [maxbutton id=”22″ url=”https://forms.gle/ZXEdp7W5nW4KBBcu8″ text=”Take the survey” ] The survey asks
#MEAction’s Postcards to Doctors initiative has been successful beyond our wildest hopes! Since August 1, we’ve received requests for more than 3,500 postcards from hundreds of individuals and groups. People from all over the United States have signed up to write to their clinicians asking them to take #MEAction’s CME program – we’ve sent out
Ellie Rushton, Birmingham UK, is setting out on a rather unique fundraising adventure. For the next six months (September to February) she will be attempting to do 1000 reps of bodyweight exercises every, single, day. Ambitious indeed! But what does it have to do with ME? “I had never heard of ME until I met
California advocates for myalgic encephalomyelitis (ME) are fighting for the state to institute a statewide Centers of Excellence program that would train ME specialists, provide state-of-the-art treatment for people with ME, and undertake advanced research. Activists across the state have already met with 24 state legislators to discuss this initiative. Activist and parent of a
Stanford University is holding its 3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, Sept. 7, 2019, sponsored by the Open Medicine Foundation. Patients, caregivers and the community are encouraged to join the community symposium to learn about the most current research, and to meet the scientists and clinicians in person. Registration closes on Aug.
We are excited to announce our newest Social Media Ambassador, Clarinda Viviers, from South Africa! A social media ambassador is a volunteer who is knowledgeable, an enthusiastic supporter of the ME community and #MEAction, and has a strong social media presence. Each ambassador amplifies #MEAction’s social media efforts and share news with #MEAction’s social media
