Category Tag: research

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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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New study on CFS/ME in adolescents in Spain: We come in PACE

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This is the "new" studie some doctors are trying to move around Spain with the recomendations of using CBT and GET in patients of CFS at the age range of 12-17 ...
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#SockItToMECFS with BHC’s new fundraising challenge!

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Bateman Horne Center launches the #SockItToMECFS Challenge. Wear your wildest and wackiest socks to raise awareness and funds for advancing ME/CFS diagnosis and care. Challenge your friends to do the same ...
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