On Wednesday, September 23 the CDC held its ME/CFS Stakeholder Engagement and Communication (SEC) conference call and the #MEAction community showed up to make our voices heard! Here is our initial summary of what you need to know.
LONG COVID & ME Understanding the Connection When the SARS-CoV-2 pandemic began, disability advocates sounded the alarm: acute viral infection leads to chronic illness in a significant number of individuals. Dr. Fauci repeatedly warned of the risk patients would develop myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Like many other neurological diseases, up to 80% of cases
Mark your calendars! The CDC will hold its next ME/CFS Stakeholder Engagement and Communication (SEC) conference call on Wednesday, Sept. 23 at 3 pm Eastern Time. Find information on how to call into the meeting here. The CDC program staff only hold SEC meetings a couple of times a year so now is your chance to participate! These
The Mayo Clinic recently removed harmful recommendations of Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for myalgic encephalomyelitis (ME) from their website, a win for people with ME and their families. The site still contains problematic language and misleading information, but this recent change could help many individuals seeking care for their ME. For
Me in the news #MEAction media resources: Press Kit | Press releases | #MEAction in the News | Our Photos | Our Videos | Contact Resources for reporters covering ME: What is ME? | Selected Media Coverage of ME | Films and books about ME Selected press coverage about ME in the mainstream media. Email [email protected] to alert us of important news items on ME. Also, we have a more thorough database
What a Summer for Advocacy and Education! We know the summer isn’t over yet, but A LOT has been happening with ME advocacy and education in the United States and the United Kingdom, and we want to make sure you are up to date, in the loop, and ready for next steps! National Institutes of Health (NIH)
Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th.
UK Parliament #MEAction UK’s parliamentary work involves a team of dedicated volunteers and thousands of constituents who have been engaging in campaigning since the organisation’s launch. Our aims #MEAction UK works to educate MPs about the injustice and neglect faced by people with ME, galvanising them to take action with and on behalf of their
JD Davids holding a protest sign that reads ACT UP and Occupy Wall Street End AIDS. JD Davids speaking into a microphone at a protest. JD Davids is a writer, an advocate and an #MEAction Board member. He has more than 25 years of experience in health activism, social movements, policy and journalism and he
Over the years, we’ve seen incredible pieces of art from people with ME. Many of these artworks move us, galvanize us, and let us into the inner world of the artist that we would otherwise never see. ME separates us from our lives and loved ones – from work, from parties, from basic errands like
