Tag: Myalgic Encephalomyelitis

Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them

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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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US: Attend the #MillionsMissing USA call this Sunday!

This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters.  Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the

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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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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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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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