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. When I first started writing
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
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 treatment. MP Ed Davey
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. [maxbutton id=”16″ url=”http://investinme.org/Documents/Fact%20Sheets/Status%20of%20Research,%20Treatment%20and%20Perception%20of%20Myalgic%20Encephalomyelitis%202018.pdf” text=”Read the briefing” ]
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
A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m (You’ll be able to watch the live stream here). We want to encourage as many of our MPs as possible to attend and use this as an opportunity to raise the visibility of ME! Here’s
We applaud the U.S. House of Representatives for its support to increase funding for the National Institutes of Health (NIH). Last week, the House Appropriations Committee released its draft funding bill that raises spending for the NIH by $1.25 billion (3 percent) to $38.3 billion in 2019. Year-by-year, the NIH budget increases, and, year-by-year, the NIH fails to address
We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award– after all, this
Next Thursday, Parliament will hold a 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in a monumental victory for the ME community. In preparation for the debate, #MEAction UK volunteers prepared a parliamentary briefing along with three other charities – ME Association, Action for M.E., and the ME Trust. (Learn more about how
