Never heard of Invisible Illness Awareness Week? You’re not alone. Jody Smith sheds a little light to make it more visible … From time immemorial, people have been pushed aside and ignored for one reason or another. Nobody likes feeling invisible. That goes for the kid in the playground who doesn’t get chosen for baseball, for the person overlooked by the boss,
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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,
ContinueAugust 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.
ContinueNew Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson’s introduction and Dr. Whittemore’s keynote speech, at the 11th Invest in ME International ME Conference in London. The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016. You can view the full conference programme (with photos
ContinueA New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London … The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its previous home on Birdcage Walk, on Friday June 3rd, 2016. You can view the full conference
ContinueProfessor & 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
ContinuePhoenix 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
ContinueThe 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
ContinuePhoenix 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
ContinueThe 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
ContinueThe 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
ContinueLooking Ahead to Change: Little by Little
As the old year wanes and the new one beckons, Jody Smith reflects on the nature of change … Does the end of the year make you pensive and cause you to look back? It has that effect on me. I don’t make New Year’s Resolutions. I don’t think I ever really did, but the last decade or two would
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