At the Sundance Film Festival in January, I had the privilege of watching Crip Camp, a documentary film that premieres today on Netflix. It’s about building a community in spite of a world that excludes you; that often tries hard to deny your humanity or ignore your very existence. It’s about how that community birthed a disability
Parents with ME have had to learn to be creative and flexible in their parenting.This will be key in responding to parenting during a pandemic. We have taught our children to wash their hands in hopes of avoiding seasonal illness. We have managed school holidays and cancelled plans. We can teach a master class in
We are so excited that the Postcards to Doctors Initiative sent more than 6,000 postcards to physicians across the United States! We’d like to take this opportunity to recognize one of #MEAction’s Postcards to Doctors amazing artists, Emily Lawton. After she was diagnosed with ME at the age of fifteen, Emily used the process of
A series of 24 papers on ME/CFS called “Advances in ME/CFS Research and Clinical Care,” published in 2018-2019 in the online (open access, peer-reviewed) journals Frontiers in Neurology and Frontiers in Pediatrics, is in the running to win a $100,000 prize! The prize money must be used to fund a scientific conference on the topic.
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
As the U.S. Advocacy Manager for #MEAction, I have the great pleasure of connecting fully to my life’s purpose: to be part of igniting the fire for change in the world. While it took me a while to determine that purpose, this truth has always been a driving force in my life. From a young
Senate Resolution passed! This is a great victory for all people with ME.
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there is scarce medical knowledge, treatments
NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis. With only a few weeks’ turn-around, the #MEAction NIH working group met and was able to produce a compelling response based
Anthony Komaroff, MD, is the distinguished Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital in Boston. He has published over 230 research articles and two books. From 1997-2015 he was editor in chief of the Harvard Health Publications Division of Harvard Medical School, the division responsible for disseminating all of the medical school’s
