Category Tag: research

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, ...
SHAPE Lab Tech(Oscar Ortiz) draws blood from a Army soldier(Karla Bayles).

SF Bay Area: Get Stanford Some Healthy Controls!

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If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis's ME/CFS research.  If you know individuals ...
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Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)

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Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) have a long, long way to go before they get the attention and resources they deserve. It would take a heroic leap to quickly achieve what people with these diseases deserve and what the diseases themselves - given their economic costs / burdens ...
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Send TGIF Letters to Francis Collins

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Friday Letters to Francis Collins ...
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Dimmock, Mirin & Jason: Estimating disease-burden in the US

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Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why is funding so low? Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year.  Compare this to multiple ...

Fluge, Mella, and Armstrong: more support for disordered metabolism in ME patients

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One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small.  One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down ...
Canada

Canada: Find CIHR qualified grant reviewers!

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When a grant proposal is submitted, a panel of experts will examine it for merit before making a final decision.  But what happens when those 'experts' deny the very existence of the disease they purport to study? Memorably, a recent grant proposal was submitted to Canada's CIHR (Canadian Institutes of Health ...
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The PACE trial: Where “recovery” doesn’t mean getting your health back

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Do people really recover as a result of CBT and graded exercise? Sadly not, says a new analysis of PACE People with ME/CFS dream of recovery — of getting their health and lives back. So the results published by the PACE trial, showing that 22% of participants recovered after just 12 ...
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Recent Tryptase Study Yields Potential ME/CFS Insight

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From the Solve ME/CFS Initiative: We recently highlighted a paper published online on October 17, 2016 (doi: 10.1038/ng.3696) the journal Nature Genetics, one of the most rigorous publications in the field of genetics with tantalizing findings. The paper, titled “Elevated basal serum tryptase identifies a multisystem disorder associated with increased ...
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Dr VanElzakker: two new ME/CFS studies at Harvard

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#MEAction recently interviewed Dr. Michael VanElzakker regarding two, new studies on ME/CFS. The first aims to discover evidence of increased activity where the sensory vagus nerve enters the brainstem – a subtle effect that requires some intricate scans. In order to measure the activity in the vagus nerve, Dr. VanElzakker will use ...
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