Yesterday, the U.S. National Institutes of Health (NIH) published a report of the NANDS Council Working Group for ME/CFS research. #MEAction’s NIH Committee (comprised of staff and volunteers) will take time to thoroughly review this report’s recommendations and issue a full response to the NIH. Read the NANDS report. In the meantime, we want to share a
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
California advocates for myalgic encephalomyelitis (ME) are fighting for the state to institute a statewide Centers of Excellence program that would train ME specialists, provide state-of-the-art treatment for people with ME, and undertake advanced research. Activists across the state have already met with 24 state legislators to discuss this initiative. Activist and parent of a
School nurses, counselors, social workers or teachers in any U.S. state can now earn earn 3.25 Continuing Education credits (CNE) for completing a course on pediatric myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The course is titled, ““Why Can’t This Child Get to Class? Learn How ME/CFS Keeps Youth from Attending School.” The course features Dr, Peter Rowe,
Listen to the article: Part 1: Part 2: In the past two weeks, The Guardian/The Observer and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the
Bateman Horne center is opening applications for the #MEAction Blue Ribbon Fellowship. Announcing clinical clerkship opportunity for 4th-year medical students, med-peds, internal medicine and family practice residents. We are delighted to announce the #MEAction Blue Ribbon fellowship at the Bateman Horne Center (BHC) with Dr. Lucinda Bateman. The clerkship/rotation will consist of one month spent
We’re so excited to announce we’re growing our community’s impact through the expansion of #MEAction USA’s formal State Chapters. #MEAction USA’s State Chapters build local capacity around volunteer engagement, congressional outreach, local and state advocacy, and medical education, and support awareness raising efforts for ME. State chapters also act as laboratories to incubate new ideas
I’m Hannah Bowlus and I’m the administrative assistant at #MEAction. I take care of basic things like mailing t-shirts, archiving and scheduling calls. I talk with a lot of you. The more I get to know this community the more urgent and vital our work feels. I get to see everything that’s going on
Up with the Marines! We are so pleased that Congressman Jack Bergman (R, MI-1), a former Marine general, has become a champion for people with myalgic encephalomyelitis (ME). Michigan advocates led by Lori Chapo-Kroger, RN, president of Pandora Org, and supported by the #MEAction Congressional team, did a video conference with Rep. Bergman several months
People with ME are an incredibly science-literate patient population, even if that isn’t by choice: it’s the gaps in research and clinical care that have made us experts by necessity. Many of us eagerly participate in studies and engage in science discussions online. We regularly present our clinicians with new information! We understand better than
