Tag: research

OMF Creates Harvard ME/CFS Collaborative Research Center

The Open Medicine Foundation (OMF) is proud to announce that it has funded $1.8 million for the establishment of a new ME/CFS Collaborative Research Center at the Harvard Medical School affiliated hospitals, which includes Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center.  The new Harvard Center will be led

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OMF Receives $1 million Donation for ME/CFS Research

The Open Medicine Foundation received a $1 million anonymous pledge to escalate Dr. Ron Davis’s systems biology approach with Robert Phair, PhD, at the ME/CFS Collaborative Research Center at Stanford University.  This will expand the search for and testing of their “metabolic trap” hypothesis, and will enable Dr. Davis to hire an additional scientist with

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Open Medicine Foundation Announces Harvard Collaborative Research Center

Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under Ron Tompkins and Wenzhong Xiao, to the tune of $1.8 million dollars. The Center will include with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center. There are two main goals

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Engaging People with ME as Partners in the CRCs

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 thinking about this, and

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Julie Rehmeyer: Hope and Despair in Through the Shadowlands

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, having ME.  It

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SF Bay Area: Get Stanford Some Healthy Controls!

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 who are happy to help

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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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