What: Researchers at Southern Connecticut State University are currently enrolling individuals in a study that will examine an intervention app for people living with ME/CFS. This app monitors daily perceived and expended energy and fatigue levels. Participants will be asked to complete an online survey about their health history, ME/CFS symptomology, as well as current
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all of these stories fit into
Mary Gelpi first published this post on her blog, 25 Pills a Day. Mary launched a petition asking the director of the U.S. National Institutes of Health, Francis Collins, to increase funding to 100 million annually for ME/CFS. She just sent a large box containing the petition and 50,000 signatures to Francis Collins. The box
Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message that precedes it. We at #MEAction are pleased to reproduce both here. We, some of Bob’s many friends, have put together this tribute to him. We do not think it is appropriate to discuss the circumstances
Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.
The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a team of volunteers to assist researchers in thinking about this, and
One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small. One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down the line, they don’t show
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
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 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).