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Category Tag: CFS

Why the Fight is Personal

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I am so honored to work with the #MEAction community on a daily basis. Our organization is fighting hard everyday to communicate the truth about myalgic encephalomyelitis (ME) - to shout it out loud and clear - to the world. My role as the #MEAction Editor & Communications Manager is ...

Hannah Bowlus: Fighting Inequality, Finding Power in Community

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  I'm Hannah Bowlus and I’m the administrative assistant at #MEAction. I take care of basic things like mailing t-shirts, archiving and scheduling calls. I talk with a lot of you. The more I get to know this community the more urgent and vital our work feels. I get to see ...

Congressman Jack Bergman becomes Champion for ME!

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Up with the Marines! We are so pleased that Congressman Jack Bergman (R, MI-1), a former Marine general, has become a champion for people with myalgic encephalomyelitis (ME). Michigan advocates led by Lori Chapo-Kroger, RN, president of Pandora Org, and supported by the #MEAction Congressional team, did a video conference ...

Voices from Sacramento: Janet Dafoe and Ashley Haugen

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Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe's son and Ashley's brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally ...

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, ...

Send Dr. Ron Davis a 75th birthday message!

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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 ...

New research: gut microbes identify 83% of patients

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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 ...

Advocates and scientists respond to NIH’s Request for Information

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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 ...

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

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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 ...

Listen to Jarred Younger’s CDC conference call this Thursday

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The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future ...