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
ContinueJames Coyne “lays waste” to PACE trial in Edinburgh
Professor James Coyne Sasha summarises Professor James Coyne’s recent no-holds-barred talk on the PACE trial and points you to the slides, video, audio and transcript. Outspoken psychologist and professor of psychology James Coyne of the University of Pennsylvania blasted the PACE trial in a public talk in Edinburgh, Scotland, on 16 November, 2015. The PACE trial was a £5 million UK
ContinueGet PACE removed from clinical guidelines – sign the petition!
Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET … A brand-new and crucial #MEAction petition has just been launched, opening a new front in the rapidly escalating battle to protect ME/CFS patients from the misleading results of the PACE trial and similar studies. The PACE trial was a £5
ContinueAgents for Change: The 10th Invest in ME International ME Conference, 2015 – Part 1
Mark Berry reports on the 10th Invest in ME International ME Conference in London. The 10th Invest in ME International ME Conference (IIMEC10) was held, as usual, in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 29th, 2015. You can view the full conference programme (with photos and biographies of the speakers) here. The highly-recommended DVD of
ContinueHome care is the theme for Severe ME Day on August 8th
Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising … August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe
ContinueFluge & Mella’s pre-trial study highlights life-changing potential of rituximab
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today… It’s out! Dr Øystein Fluge and Professor Olav Mella have published their new study in PLoS ONE. And though the study was not a blinded, placebo-controlled trial, the results are further evidence that rituximab is beneficial in some ME/CFS patients, and potentially life-changing
ContinueHow we can hijack the media, in four easy lessons
Sasha explains how we can each help to make the most of big media stories about ME/CFS… Love it, hate it, good story, bad story… the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity? I think we should, because when an ME/CFS story breaks, the doors
ContinueRed Hot researchers spice up Chilli ME Challenge — Live!
Can you take the heat? Join Simon McGrath in support of the Chilli ME Challenge … Watch renowned researchers Drs. Ian Lipkin and Mady Hornig take the Chilli ME Challenge, LIVE from New York by webcast this coming Wednesday, 1st July at 1 p.m. EST. To spice things up, the researchers from Columbia University have promised that the more you give,
ContinueWanted by Llewellyn King: Member of Congress to take up the ME/CFS cause
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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