Category Tag: research

Engaging People with ME as Partners in the CRCs

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The National Institute of Health’s RFA for ME/CFS Collaborative Research Centers breaks new ground. For the first time, the funding agency is strongly encouraging researchers “to establish partnerships with patients groups and solicit their input” as part of their research plan. #MEAction assembled a team of volunteers to assist researchers in ...
Action for M.E announces research

Action for M.E announces research

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UK charity Action for M.E has announced that they are funding two new research studies, totalling £42,000 ...

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, ...

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 ...

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 ...

Send TGIF Letters to Francis Collins

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Friday Letters to Francis Collins ...

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: 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 ...

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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