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.
The plight of people living with Myalgic Encephalomyelitis (ME) was heard in Illinois this week. The parent of a young daughter with ME, Amy Mooney, worked with her state representative, Michael J. Zalewski, to introduce a state resolution that recognizes ME as a tragic, disabling disease, and that commits to improving the availability and quality of medical care
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.
Obviously, I still have not integrated the sick person I am with my self-concept. In my heart, I aspire to be an adventurer. In my brain, I am a popcorn popper of plans and temptations. In reality, I can do one activity and, on a good day, maybe two, but not day-after-day in a row. On a bad day I have to be still. I have to wait for the temporary reprieve that recovery mode will eventually bring.
Researchers from Queensland’s Griffith University recently identified a dysfunctional cell receptor in the immune system of people with Chronic Fatigue Syndrome (CFS).
Fifteen people meeting the Fukuda criteria for CFS were studied, against 25 controls. Considering the small size of the study, the results cannot be considered definitive.
Solve ME/CFS Initiative (SMCI)‘s first webinar of the year, “A Clinical Approach to ME/CFS in Adolescents and Young Adults,” will be held with Peter Rowe, M.D. next Thursday, March 17, 2017. To register for the free webinar, go here: https://attendee.gotowebinar.com/register/7209349689868350723
If the Center for Infection and Immunity (CII) team is successful with its RFA application proposal, this funding would clearly help the institution to become a Collaborative Research Center, and would help to fund the analysis work involved in the Monster study – albeit slowly. If you’ve missed it, this study is not only about microbes and viruses; it was hugely expanded to include immunology, metabolomics, proteomics, genetics and epigentics.
A person with ME for more than 38 years wrote this pointed letter to the National Institute of Health, calling its leaders to act with urgency and correct their gross neglect of people suffering with ME.
