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
Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME.
MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this
UK charity Invest in ME has written a briefing for the 21 June Westminster Hall debate that calls for £20 million in funding for biomedical research for five years. The briefing also provides an excellent summary of the disease and the challenges patients face accessing appropriate care.
This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work.
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