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Category Archives: United States

Enrolling: Cornell Exercise Testing Study

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Who: Cornell Center for Enervating Neuroimmune Disease What: The Center is collecting information from both ME patients and sedentary controls. You will first have a quick phone call to determine eligibility. If eligible, you will meet with a doctor (theirs or yours) to be examined or for blood and urine tests. Then you will complete questionnaires. ...

The heart of ME? Lipkin’s Collaborative Probes the Impact of Exertion

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Simon McGrath is the author of the ME/CFS Research Review blog. The hallmark symptom of ME/CFS is post-exertional malaise (PEM), a prolonged, grim and disproportionate response to exertion. While Dr W. Ian Lipkin’s NIH-funded Collaborative – the Center for Solutions for ME/CFS – is focusing primarily on how problems in patients’ gut ...

Enrolling: Bateman-Horne Center Biomarker Study

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Help advance biomarker research! The Bateman-Horne Center is actively recruiting patients and healthy controls who are eager to participate by providing samples and information. This is then used in ME/CFS and FM research to discover biomarkers, improve diagnosis, and advance treatment ...

Will the FDA Stand in the Way of Your ME Treatment? Take Action now!

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Suppose there was a substance that could help you, but before you learned about it, or you could find a doctor to prescribe it, the FDA banned it from the market, even though patients have successfully used it for decades. Or suppose there was a treatment that had helped your ...

Learn how to Lobby Congress: Read our Toolkit

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Since its inception three years ago, the #MEAction Congressional team has worked hard to build relationships with members of Congress in order to gain their support for investing in biomedical research and clinical care for myalgic encephalomyelitis. Now, the Congress team has created a comprehensive manual for activists who want to ...

CDC Revises Its Information on ME

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In September 2016, I attended a meeting at the Centers for Disease Control as #MEAction’s representative.  Also present were Dr. Ken Friedman, Dr. Mark VanNess, Mary Dimmock, Dr. Lucinda Bateman, Dr. Lily Chu, Wilhelmina Jenkins, Dr. Anthony Komaroff, Dr. Charles Lapp, Dr. Susan Levine, Dr. Dan Peterson, and many other ...

M.E. Takes Center Stage at the Women’s Health Empowerment Summit

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This past May, the Women’s Health Empowerment Summit chose three patients to share testimonies about their illness and Myalgic Encephalomyelitis was chosen as one of the three! PwME Kat Fox discusses her experience participating at the summit. How did you get the opportunity to speak at the Women’s Health Empowerment Summit?  Well, for ...

The NIH responds to #MEAction, Next Steps

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Following the global day of action on May 12, 2018, #MEAction gathered photos and petition signatures from people all over the world and mailed it to Director of the NIH, Francis Collins (see letter). Along with your beautiful photos and anecdotes, we delivered a list of demands, including a meeting ...

Ron Davis Receives $2.5 Million Grant from NIH

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Dr Ron Davis and his team at the Stanford Genome Technology Center have received a large research grant from the National Institutes of Health (NIH) that will fund research for 5 years at $500,000 a year and will involve 15 collaborators, 9 of which have never worked in the ME/CFS field before ...

Pastor Testifies About Wife’s ME

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Lutheran pastor, Stephen Friedrich, spoke about his wife's struggle with Myalgic Encephalomyelitis before the Chronic Fatigue Syndrome Advisory Committee (CFSAC) hearing on June 20th.  CFSAC met for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and ...