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 York, finally passed both the
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 manage until you experience it.
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 outcomes. At #MEAction’s recent meeting
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. Click on any of the
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 – despite all the evidence that
I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser. That means that everything you give will be matched dollar for dollar until we reach our goal of $200,000 (£159,490)! Donate Now Here are three ways you can help us maximize this matching gift: Donate Start
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 the #MillionsMissing yet again! Information
This year’s #MillionsMissing, our community created some amazing videos that we are privileged to highlight. This is just a small sampling of the amazing videos that were shared with us. It would be impossible to include them all, but we thank you all for sharing! Chronic — Maggie Borgen M.E. & Friends — Lisa Walker
Thank you for sharing your stories, for illustrating our common thread so that our governments, healthcare systems, and other institutions can respond fully to the crisis of ME, Long COVID and other complex, chronic conditions. As Omar Wasow said in his #MillionsMissing speech, “We are at the cusp of newfound power.” “That has the potential to
#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, sat down with Dr. Liisa Selin, MD, PhD, and Dr. Anna Gil, PhD, recipients of an R01 grant to research immune system dysregulation in people with ME/CFS. Selin, a professor of pathology and a person with ME herself, and Gil, a viral immunologist, comprise the two-person
