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″
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 – long story short!
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
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
#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland. Watch the hearing: Not all petitioners are called before the Parliament’s Petitions Committee, so the fact that #MEAction Scotland has been summoned is very encouraging. The petition has received 7,000 signatures, and
Mark your calendars! 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. The fight for a larger debate on ME has had cross party support with Carol Monaghan MP securing the debate, along with the support of five other MPs. #MEAction UK and
MPs across the parties in the U.K. came together today to argue the case for scheduling a debate about Myalgic Encephalomyelitis (ME) in the main chamber of the House of Commons. Watch the video below. Carol Monaghan MP joined five other MPs on June 5th to argue the merits of holding a debate on ME
