Influential scientific researchers in the ME/CFS community will come together this Saturday, Aug. 12 for a one-day community symposium focused on the molecular basis of ME/CFS at Stanford University Palo Alto, California. Register here to join the livestream and be part of the conversation. View the agenda here. (DVDs can also be ordered for $15 from
Journal of Health Psychology Special Issue on The PACE Trial, Vol. 22, No 9, Aug. 2017 Publication date: 31 July 2017 http://journals.sagepub.com/toc/hpqa/current A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of
#MEAction UK response to NICE 2017 Background information UK clinical guidelines are written by a body called the National Institute for Health and Clinical Excellence (NICE). The current guidelines were last revised in 2007 and contain recommendations that people with ME consider unsuitable and potentially harmful. These guidelines also impact how ME is perceived in
#MEAction sat down with David Tuller recently for a wide-ranging discussion about the crowdfunding effort to help him continue his PACE investigations, the devastating stories he has heard from patients around the world, the poor media coverage of the PACE Trial flaws, and the ideal end result of all of the work he is doing. David Tuller
On Friday, May 26th, New York State (NYS) Health Commissioner Dr. Howard Zucker emailed a letter regarding Myalgic Encephalomyelitis (ME) to eighty-five thousand physicians in NYS. In the letter he describes the illness, encourages physicians to consider ME as part of a differential diagnosis when evaluating patients with symptoms, and refers readers to Jen Brea’s
“I read an early version of Through the Shadowlands while I was driving around the country, tent in my rental car, terrified that something inexplicable was wrong with me, convinced that I was losing my mind. Julie Rehmeyer’s book showed me that I wasn’t.
Biomarkers are a holy grail for ME/CFS because they have the potential to help diagnose disease, track disease progression or progress and help inform which treatments might help. The need for biomarkers is immense and researchers will identify many possible ones. It is encouraging that there have been more possible biomarker reports recently. It can be so hard
The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a team of volunteers to assist researchers in thinking about this, and
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
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.
