The fight continues in Denmark for proper recognition and care for people with myalgic encephalomyelitis (ME). Last March in a huge victory for people with ME, Danish MPs unanimously agreed on a declaration that will recognise ME as a distinct disease, remove it from the “functional somatic syndromes” category, and promote the World Health Organization
Following the success of the last parliamentary debates on myalgic encephalomyelitis (ME), Carol Monaghan MP is reviving the All-Party Parliamentary Group (APPG) on ME. After well attended Westminster Hall and House of Commons debates with cross-party support, Carol Monaghan MP has decided that it is time to re-establish this APPG. The first meeting will be
It was a big holiday season for Dr. Walter Koroshetz who oversees ME/CFS research at the National Institutes of Health (NIH)! As part of our Cards for Koroshetz Campaign, people with ME, caretakers and allies sent Dr. Koroshetz 500 holiday cards with their stories of living with a neglected and shunned disease. They told Dr. Koroshetz
It is with heavy hearts that we share the passing of ME community advocate, Cindy Siegel Shepler. Cindy lived with myalgic encephalomyelitis (ME) and multiple other health issues. She dedicated much of her increasingly limited time and energy to advocacy, increased awareness, and increasing research funds for ME. She had a true passion to protect
Claudia Carrera, 35, was halfway through her graduate program in musicology at New York University when her mild symptoms of myalgic encephalomyelitis (ME) became severe. She tried pushing through, but eventually had to return home to be cared for by her parents. Nowadays, she oscillates between accepting she may never accomplish her life goals––finish her
A year and a half ago in March of 2018, many of the leading U.S. ME/CFS clinicians came together for a summit at the Bateman Horne Center to discuss diagnostic and treatment methods for ME/CFS. There were three major goals for the summit, including to summarize and publish on key diagnostic and treatment methods; distill
This holiday season, the #MEAction community plans to flood the mailbox of the U.S. National Institutes of Health (NIH) with holiday cards calling for NIH NINDS Director, Dr. Walter Koroshetz, to take immediate ACTIONS to end the crisis of myalgic encephalomyelitis (ME). We need your help! Take action with us: Send Dr Koroshetz a holiday
Mark and Marcie Zinn are once again conducting assessments and producing elaborate reports to help patients!
Earlier this year #MEAction UK wrote, distributed and analysed a survey in response to The National Institute for Health and Care Excellence (NICE) releasing a call for evidence as they rewrite the ME guideline. Our full report from that survey found that ME/CFS services in the UK are not fit for purpose. Results identified that
Erica Verrillo is founder of The American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society (AMMES), which provides direct assistance (rent, clothing, food, etc.) to people with ME who are in crisis in the U.S., as well as resources to the ME community. A generous donor has offered a matching donation of five thousand dollars to
