Dear New York Community- We need urgent action now to persuade New York Governor Kathy Hochul to sign our ME/CFS bill into law! Take action now! Thanks to you and the #MEAction community, bill A7712B/S6928B, which provides for a myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) education and outreach program in New…
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to…
The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at its Job Accommodation Network website to align with the most current CDC guidance. This action will help workers and employers find accurate information on ME/CFS and combat stigma and improve workplace…
After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a glimpse into her life as someone living with ME/CFS. Terra spread this experience over 7 days, focusing on a different theme each day. See her wonderful work and accompanying commentary below.…
Action for M.E. is delighted to announce a second ground-breaking PhD, this time in conjunction with the University of Oxford.This comes shortly after announcing our jointly funded collaborative initiative with King’s College London (KCL)Our second PhD has been part-funded by Action for M.E., with the other 50% raised through crowdfunding,…
Action for M.E. and ME Research UK are delighted to announce the launch of a new ground-breaking PhD-level research project in conjunction with King’s College London.This collaborative initiative has been jointly funded between ME Research UK and Action for M.E. and will be hosted at King’s College London. The new…
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as far as US disease tracking systems are concerned. Americans don’t experience any morbidity (suffering, impairment) from ME/CFS. They can’t die with ME/CFS. Nobody develops ME/CFS following an acute COVID-19 infection –…
Last night Action for M.E. and poet Alec Finlay launched Descriptions at the Scottish Poetry Library. Scottish actor Mark Bonnar was the narrator of the audio version of the piece. Audio segments were played throughout the event. The event was held to illuminate the impact ME has on people’s lives…
People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited recommendations for Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET). The invited speaker at May 13th’s CDC Stakeholder Engagement & Communication (SEC) Call presented this slide on ME/CFS management. Failing…
After an incredible World ME Day we wanted to share some of the amazing progress made across the globe. As individuals and organisations, our community stepped forward to fight for people with ME everywhere. We're going to do this by country, because there is just so much to cover! This…