Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extended an
Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them
A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August. The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests. In May 2016, #MillionsMissing protests
It’s been a devastating summer for the ME community. We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and Linda Hayes Burke. Yesterday, we learned that we lost Tom Jarrett. Jodi Bassett, 41, was a passionate advocate for ME who helped thousands of people better understand their condition through her website The Hummingbirds’ Foundation for
Hi, I’m Mike Harley from the UK, and for the last 18 months I’ve been raising awareness and funds for the biomedical research charity Invest In ME. One of my best friends has had ME for over 10 years and over the last 2 years I’ve met a number of other patients who are now
The Blue Ribbon Foundation, the non-profit behind the documentary Forgotten Plague, has an educational and research agenda. In addition to getting the film in front of as many people in the medical and health profession as possible, one of the primary programs they have created is a student fellowship for medical students to assist in top
The Solve ME/CFS Initiative (SMCI) is now accepting applications for the Ramsay Award Program in basic, preclinical, clinical, and epidemiology research. This competitive grant award is open to scientists and researchers at any career stage who are interested in studying myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).
The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate
This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters. Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the
Last October, I released the short documentary The Last Great Medical Cover Up to a widely receptive audience. Now, I am looking to alter and expand the film in time to promote Round 2 of the groundbreaking #MillionsMissing movement. And I need your help to make this new and improved version a reality. Individuals living
