In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger requesting her to clearly and directly address our four key objections to publishing a flawed evidence review of ME/CFS treatments that CDC commissioned.…
On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign and shared their thanks in our work to educate the medical establishment about the new guideline. This is cause for celebration! This is the start of a real change that has…
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline fast approaching this is your last chance to join them and vote. Deadline Monday 13th December 5pm Vote now This process gives greater voice to people affected by ME/CFS to decide…
December 09, 2021 The M.E./CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future M.E./CFS research. Over 1,700 people have now voted for their… This post first appeared on Action for M.E. Read more >>
In the spirit of giving and giving back this holiday season, we’re excited to launch our #MEAction 2022 Board of Directors Recruitment Campaign! If you are curious about Board Service or want to use your skills to help a growing nonprofit or know someone who would be a great Board…
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and Black-mixed adults living with diagnosed or suspected ME or Long-Covid. Formal diagnosis is not required. The group meets every other Sunday from 1-2pm. It provides a safe space to share experiences…
Welcome to #MEAction’s 12 Days of Pacing! For the next 12 days will work through what #StopRestPace really means and how to apply it practically in your life. We are excited to share some great tips from our amazing community along the way. We hope you will view this ……
We are delighted to welcome actor Jennie Jacques as an Action for M.E. Ambassador. Jennie Jacques is a British actor who came to fame in the drama Desperate Romantics, which aired… This post first appeared on Action for M.E. Read more >>
NPR featured #MEAction in an article about long COVID called, “For patients with long COVID, chronic fatigue syndrome may offer a guiding star.” MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, speaks about how long COVID researchers and doctors must learn from the ME/CFS community. “People with chronic complex…
Welcome to the jungle, the press jungle! It’s hot and noisy here, with news fresh off the press. Trying to get the attention of the media is not as impossible as legend had it! This is Adriane, and as your Press Scribe, I’m here to write our way through this…