Category: Global

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

Note: This is a two-part article in our series on education in ME/CFS.  Part 1 covered UpToDate, the University of North Texas, Michigan State University, and the University of Nebraska; Part 2 covers the University of California–San Francisco, the University of North Carolina, and other best sellers.  To read Part I of this article, click

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2016 Invest in ME Conference write-up on PR

Phoenix Rising’s Mark Berry was at the recent Invest in ME conference and has written an excellent report: A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016 As the article is quite long, here are some tasters (my summaries, with quotes from Mark’s article) to whet your appetite for

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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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 The alchemy of turning frustration into power

when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country!

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New research: gut microbes identify 83% of patients

Signs of bacterial infection and inflammation Recently, a team of researchers led by Ludovic Giloteaux of Cornell University measured the levels of several biomarkers in 49 ME/CFS patients and 39 controls, including LPS to measure bacteria in the bloodstream and CD14 and C-reactive protein to measure inflammation.  Researchers also measured the levels of intestinal fatty

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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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QMUL spend £250,000 on PACE data tribunal

Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial. Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills &

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