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.
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.
The South African investigative journalism program Carte Blanche has aired a well-researched segment featuring the struggle of the ME community around the world. An article about women suffering with ME in South Africa accompanies the video. The segment includes footage from the #MillionsMissing protest in September. The ME/CFS Foundation South Africa was behind getting the program
