Press Release Details of the Event Millions Missing Edinburgh protest is being held from 1200-1400 on Friday 12th May outside the Scottish Parliament to raise awareness of Myalgic Encephalomyelitis (ME – sometimes called Chronic Fatigue Syndrome) and the devastating impact it has on tens of thousands of people in Scotland. Protests are being held in
The University of South Australia will begin a research study that looks at how active video gaming can increase physical activity in adults with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.
The study has no set research criteria, despite studies that show 2 out of 5 patients are misdiagnosed with CFS/ME in Australia.
One of the best ways to advance research toward finding answers about neurologic disorders is through post-mortem brain donation – and the U.S. National Institutes of Health (NIH) reports an urgent need for donations from patients who’ve suffered with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Arranging in advance to donate your brain when you die
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
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.
An American with ME had strong words for the National Institute of Health (NIH): You have stolen 40 years of my life. Johanna Kaiser gave a brave testimony about the neglect of people with ME during the February 1, 2017 phone meeting with the NIH in which institute leaders answered questions about the planned ME research
Want to know more about the research centers and data center being planned for ME/CFS by the National Institute of Health (NIH)? Directors at the NIH discussed the research centers and answered questions from people with ME along with researchers in a phone call on Feb. 2. The NIH will provide $30 million over the
A member of the Shaw family reads their testimony during the comment period at the January CFSAC meeting: Good afternoon. I have had untreated ME/CFS for 38 years. Our testimony today is on the topic of the Center for Diseases Control’s (CDC) CFS group. The 2015 National Academy of Medicine report characterizes post-exertional malaise, or
The CFS Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). The committee meets twice-yearly, and recently met Jan. 12-13, 2017. #MEAction activist, Terri Wilder, spoke during the comment period at
2016 was a big year for ME/CFS advocacy. As we turn over the page to the fresh new year, the #MEAction Network Australia group reflects on some of the highlights of its advocacy efforts in 2016.
