Anil van der Zee, 38, is a former professional ballet dancer in Amsterdam. In 2007, he contracted a viral infection, Cytomegalovirus, and never fully recovered. A few years later he was diagnosed with Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS). He describes his transition from being a strong, vibrant dancer to a
Jessica Taylor-Bearman has written a book called “A Girl Behind Dark Glasses” about her “forgotten years” of having severe Myalgic Encephalomyelitis (ME) for 11 years since the age of 15. Her book focuses on the four years she spent hospitalized during which she was unable to speak, eat or move for the first two years.
How would the proposed NIH and CDC Budget Cuts affect ME research? News organizations recently reported that President Donald Trump’s administration has asked the House and Senate to approve budget cuts for 2017 of $1.232 billion for the National Institutes of Health (NIH) and $314 million for the Centers for Disease Control and Prevention (CDC).
#MEAction is working with musician Kaeley Pruitt-Hamm to re-release her music video, “Believe Her,” to showcase the broader face of the ME community. Send in a still photo or 5-second clip of yourself in bed holding a sign that says #BelieveME or #BelieveHer by April 30th. We will include these clips of people with
On 23rd April, Tom Whittingham is running the London Marathon for ME Research UK.
Watch and share his fundraising and awareness video.
There is one more screening of Unrest at the CPH:DOX film festival on March 24th, and then Unrest heads to the RiverRun International Film Festival in Winston-Salem on March 31st. Unrest made its international and European premiere in Copenhagen, Denmark at CPH:DOX, one of the leading festivals for documentary film in the world, on March 17.
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was going through, having ME. It
Are you prepared for an 18% reduction in ME spending?
I’m not. For one thing, the first year of funding for the new Collaborative Research Centers is set aside in this year’s budget. But all bets are off going forward. Like many other RFAs, the one for ME Centers explicitly states, “Future year amounts will depend on annual appropriations.” So it is possible that future years of funding could be cut or eliminated.
An Australian university is trialling a program to train health professionals in administering graded exercise therapy and cognitive behavioural therapy to roll it out nationally and internationally, despite the evidence of harm. Here is the response to a petition to ask them to stop.
The 2011 PACE trial examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care, but refused to share their data.
West Australian Alem Matthees filed a UK Freedom of Information Act. The ruling released the data and further examination found glaring problems with the study.