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May 12, 2017, Is International ME/CFS and FM Awareness Day

International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard …  Can you believe it’s been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence Nightingale’s birthday. This famous English

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Lipkin’s Monster ME/CFS Study: Microbes, Immunity & Big Data

The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work. Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests,

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August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.  August 8th, 2016 is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked.

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Professor & patients’ paper on the solvable biological challenge of ME/CFS: reader-friendly version

Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS … Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days. The editorial highlights

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Phoenix Rising supports the Millions Missing global day of protest

Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest … Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from

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The Real ME: A Stock Photography Resource for the Media

Sasha announces a new resource of appropriate photos for ME/CFS media stories … We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained. But do pictures that illustrate

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Phoenix Rising tells QMUL: release the PACE trial data

Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request…  On 1 February, ME/CFS patient Clark Ellis wrote an open letter to seven major British ME/CFS charities

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The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS

Simon McGrath concludes his blog about the remarkable Prof George Davey Smith’s smart ideas for understanding diseases, which may soon be applied to ME/CFS. Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference laying out ideas for bigger, better, smarter research. Although much of his talk wasn’t focused

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The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference (Pt 1 of 2)

Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s Part 1 … Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference that focused on bigger, better, smarter approaches to research. Since then, Davey Smith has said he’s keen to

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