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
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.
Article written by Rebecca Hansen, Chairman of the Danish ME Association
The Danish Health Authority (SST) released their new treatment recommendations for Myalgic Encephalomyelitis (ME) patients on June 18 as part of a guideline called “Physical Training as Treatment.”
The chapter on ME is nothing short of medical abuse.
It defines ME as fatigue and
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
Parliament Plays NICE
#MEAction UK was thrilled to watch the longest ever UK parliamentary debate about ME on 21st June, after working so hard alongside so many others to make it happen.
The three hour debate in Westminster Hall about treatment and research reflected a seismic shift in political understanding of ME.
This month we want to honor the work of three women with #MEAction Scotland - Emma Shorter, Kim Gurav and Janet Sylvester - who have done an incredible job advocating for people with myalgic encephalomyelitis.
The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which
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.
I’ve been privileged to serve on the #MEAction Board these last three years. Though I’ve worked in Silicon Valley and seen many high-growth start-ups, #MEAction’s progress has been one of the wildest rides I’ve ever seen. I’ve been amazed at the level of grass-roots participation and growth you’ve made happen.
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
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
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
Most of Australia’s medical research funding for ME and CFS comes from the Mason Foundation, who are currently looking at whether they will fund a biobank or a patient registry for Myalgic Encephalomyelitis and/or chronic fatigue syndrome samples. Recently the Mason Foundation updated stakeholders on the decision-making process.
This is important