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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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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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
Continue 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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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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Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing … Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us. Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’: Wanted: Member
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Sasha gives you the tour and tells you what it’s all about… Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days. Her health collapsed, and she was forced to go
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Hey, May 12 is our Day. Join with Jody Smith and let’s make some noise … Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and
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Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway … “When will this end?” It’s a question that most ME/CFS patients have probably asked themselves and their doctor many times. I certainly have. Yet there is astonishingly little hard data on recovery rates from this illness or
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As the 16 January, 2015 deadline for responding to the controversial P2P draft report draws near, and in the interests of balance and representing the whole community, Phoenix Rising presents two differing views on how to react. Today, Clark Ellis flags up important content to critique and to praise in the report. In her article, Gabby Klein makes the case for protesting
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Jody Smith may have dodged a holiday bullet this year. She’s hoping. Only time will tell. How did you fare? How have you survived the holiday season? I’ve been thinking of you in the Phoenix Rising community all week. I wanted to write something before Christmas but … I thought I was in for a crash, as old symptoms started
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Anyone else been poisoned along the way? Jody Smith tells part of her horror story … Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I’d just been dealing with some heavy-duty menopausal issues. The sleep abnormalities, the brain fog, digestive issues, astonishing weight gain, I
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