Category Archives: Science

#MEAction UK response to NICE 2017

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#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 ...
David Tuller: "I am committed to seeing this effort through to the end"

Tuller on PACE Investigation Plans: Not Beholden to Anyone

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#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 ...

New York State Health Commissioner Sends Letter to Physicians about ME

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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 ...

Julie Rehmeyer’s memoir is out. Purchase her book today!

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“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 ...

The ME/CFS Biomarker Rollercoaster

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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 ...

Engaging People with ME as Partners in the CRCs

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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 ...
Action for M.E announces research

Action for M.E announces research

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UK charity Action for M.E has announced that they are funding two new research studies, totalling £42,000 ...

Julie Rehmeyer: Hope and Despair in Through the Shadowlands

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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, ...

Calcium channel ion defects: research from Australia’s Griffith Uni.

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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 ...

SF Bay Area: Get Stanford Some Healthy Controls!

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If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis's ME/CFS research.  If you know individuals ...
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