Category: Opinion

Canada: Research Reviewers as Disease Denialists

Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME).  Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the

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Canada: officials turn down grant app because CFS "isn't real"

For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute of Musculoskeletal Health and Arthritis] has committed to supporting the creation of a national network for translational research in ME/CFS in 2016-2017. This network will facilitate capacity building and provide a forum to

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Empty shoes

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

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 The alchemy of turning frustration into power

when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country!

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Canada – open letter to gov't from family of #MillionsMissing

Name/Nom: William A. Downey, BA, BSW Province:  BC Riding/Circonscription: Kelowna Lake Country Comments/Commentaires: I am writing on behalf of over four hundred thousand fellow Canadian citizens whose lives have been, and will continue to be, devastated by the well-known biomedical condition Myalgic Encephalomyelitis (ME); I write as a member of the additional hundreds of thousands of Canadian citizens who

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Speeches from the Front Lines of #MillionsMissing: Sonya

Sonya Myalgic Encephalomyelitis (ME) Patient 5/25/16 Washington, DC #MillionsMissing Protest Speech Transcript In April of 2011, I was thriving and loving life. At the peak of my career, working my dream job in the U.S. Foreign Service, only 39 years old but already the equivalent of a Colonel in the military, I was successful, healthy,

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Speeches from the front lines of #MillionsMissing: Carol Head

I’m Carol Head, President of the Solve ME/CFS Initiative, here with Linda Tannenbaum.  Our organization conducts innovative research to solve ME/CFS. We conduct research and have created a biobank of ME/CFS patient information for use by all researchers. Before I begin, a quick note of thanks to Mark Cormizand. As you may know, we are

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Speeches from the front lines of #MillionsMissing: L.A. Cooper

Hello, and a very warm welcome to #MillionsMissing London. My name is L.A. Cooper, I founded and run Change For M.E. Change For Us. We are middle representatives of this global movement; Melbourne kicked things off at 12pm their time (which is around 2am, 3am GMT, I believe) and Canada and USA follow us later

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