This past May, the Women’s Health Empowerment Summit chose three patients to share testimonies about their illness and Myalgic Encephalomyelitis was chosen as one of the three! PwME Kat Fox discusses her experience participating at the summit. How did you get the opportunity to speak at the Women’s Health Empowerment Summit? Well, for that we have to
Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting with #MEAction. We also asked
Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from the National Institutes of Health (NIH) that will fund research for 5 years at $500,000 a year and will involve 15 collaborators, 9 of which have never worked in the ME/CFS field before. The research will focus on
Lutheran pastor, Stephen Friedrich, spoke about his wife’s struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) hearing on June 20th. CFSAC met for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. [maxbutton id=”18″
Hi everyone, I just wanted to take a moment to comment on some of the confusion and concern of these last few weeks and offer some steps forward to help clarify how #MEAction works, what our core value are, and how we plan to make concrete our policy positions going forward. We are not a
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. *Note, an anonymous person gave this testimony. #MEAction has published it but did not
This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated
The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July 9. Apply here: CAC application, available in Google Forms. The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS, and developing diagnostic tests and methods for
This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work. Dear Friends, We want to clarify an important issue about our recent advocacy work. After two years of fierce advocacy by our community, we are thrilled that Senator Ed Markey of Massachusetts has now introduced a
Representatives from across federal agencies will convene for the next two days – tomorrow, June 20th and June 21st – for the bi-annual Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. CFSAC is an important committee that provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis
