Tag: Chronic Fatigue Syndrome

Naviaux's metabolism paper is about as big as you think

Robert Naviaux, at researcher at University of California, San Diego, published a landmark paper yesterday on the metabolites of patients with ME/CFS. It made news around the world. Below, an in-depth analysis of the paper’s findings and its implications. Note: some of the information below is speculative, linking Naviaux’s findings to other research.  Findings not

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#MEAction Policy Change: ME, not ME/CFS

The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate

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Contribute clips to L.A.'s #MillionsMissing Video

Last October, I released the short documentary The Last Great Medical Cover Up to a widely receptive audience. Now, I am looking to alter and expand the film in time to promote Round 2 of the groundbreaking #MillionsMissing movement. And I need your help to make this new and improved version a reality. Individuals living

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Send Dr. Ron Davis a 75th birthday message!

The Open Medicine Foundation (OMF) is inviting patients and supporters to send Dr. Ron Davis a message for his birthday and a donation to support his End ME/CFS Project. The OMF said that the messages would be compiled into a “massive card” that would be presented to him. Dr. Davis, of Stanford University, will be

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Solve ME/CFS Initiative Update

Last year was a pivotal point in the battle against ME/CFS. Game-changing reports from the Institute of Medicine and the National Institutes of Health’s Pathways to Prevention Workshop delivered long awaited public credibility for our disease. The federal ME/CFS landscape has shifted, and there is newfound openness and awareness among key governmental agencies. This positive change has heightened the battle as we fight for scientific understanding, fight for treatments and fight for a cure.

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Tuller slams “terrible” PACE in podcast

Dr. David Tuller has provided an overview and update of his work criticizing the PACE trial in a podcast interview with Professor Vincent Racaniello on This Week in Virology (TWiV). Dr. Tuller, of University of California, Berkeley, published a series of damning critiques of the study on Professor Racaniello’s Virology Blog, starting with a lengthy article

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Advocates and scientists respond to NIH’s Request for Information

Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request for Information to guide its research strategy on ME/CFS. It is the first time that the NIH has asked for public input on the disease. The request, made in May, drew public responses from Dr. Ronald

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Medical Textbooks Earn a Failing Grade in ME/CFS – 1 of 2

Part II in our series on medical education and ME Note: This is a two-part article in our series on education in ME/CFS.  Part 1 covers UpToDate, the University of North Texas, Michigan State University, and the University of Nebraska; Part 2 will cover the University of California–San Francisco, the University of North Carolina, and

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Attend the MEpedia online meet-up this Thursday!

What can you do for ME activism today? Many patients, caregivers, physicians and educators would like to contribute to ME activism in a meaningful way, but patients have limited resources and energy. ME patients aren’t working alone, however: if even a small percentage of the ME population were to work together, we would still be

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Jennifer Brea gives rallying TED Talk

On June 27, Jennifer Brea, #MEAction co-founder, filmmaker, TED Fellow, readied herself to speak in Banff, Canada at TEDSummit 2016.  The process of preparing can be described as grueling for anyone, much less for someone with ME: Brea had spent weeks writing and fact-checking the talk with a committee from TED, and now had to keep her focus

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