Tag: research

Epic Measures: How One Man Changed the World (and Possibly ME/CFS and FM As Well)

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 they impose – should receive. So much needs to be done (funding, doctor education, drugs, other treatments) – and we’re coming from such a low place – that it seems almost impossible that it can be done in a reasonable amount of time. In fact, people do the impossible – make what seems at first to be inconceivable differences in one area or another – all the time. This blog is about a man who did that, and did so in a way that may directly help those with chronic fatigue syndrome (ME/CFS) and fibromyalgia.

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Dimmock, Mirin & Jason: Estimating disease-burden in the US

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 sclerosis, an illness

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Canada: Find CIHR qualified grant reviewers!

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 Research) to study ME/CFS,

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Recent Tryptase Study Yields Potential ME/CFS Insight

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 TPSAB1 copy number,” had two key features that could be potentially relevant to ME/CFS:

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Dr VanElzakker: two new ME/CFS studies at Harvard

#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 a scanner that

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