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 a statement of principles and values as well
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: #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
#MEAction advocate, Terri Wilder, and #MEAction board member, Ryan Prior, are co-presenting at the Stanford MEDx conference this weekend about how #MEAction empowers the myalgic encephalomyelitis (ME) community through technology. Terri and Ryan will discuss the history of #MEAction, its founders, its reason for being, its social justice philosophy, its policy goals, the PACE trial,
As part of our ongoing advocacy work, #MEAction UK has been campaigning for the National Institute for Clinical Excellence (NICE) to update the current ME guidelines. Updated ME/CFS guidelines are due to be published in October 2020. However in the meantime, the existing guidelines published in August 2007 that recommend Cognitive Behavioral Therapy (CBT) and
The U.S. Center for Disease Control and Prevention (CDC) has initiated various projects focused on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), but there has been very little transparency or engagement with the patient community about the CDC’s overall plans, the approaches being used, or the status of the projects underway. Further, many of the
About #MEACTION BOARD & ADVISORS The majority of #MEAction board are people living with ME, making our team uniquely positioned to understand the real-life impacts of the government and medical community’s decisions or inaction on the disease. Elizabeth Weaver Liz is the Associate Director for Georgia State University’s largest Area of Focus, The Brains &
#MEACTION IGNITING A GLOBAL REVOLUTION IN ME CARE OUR MISSION People with ME are at the center of what we do. We fight for our community and strengthen our collective voice through strategic partnerships, mass mobilization, research, education and storytelling. We build awareness and power to achieve effective and well-funded research, treatment, care, and support
Support Support groups Facebook groups and monthly calls organized by region, affinity, or relation to ME. Find your group! Crisis Resources Mental health hotlines for anyone needing help, or just a space to talk. Find a Doctor A global directory of ME specialists or ME-friendly medical practitioners, community-sourced and open to submissions. Diagnosis and Treatment
