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 illustrateContinue
James 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 UKContinue
Get 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 £5Continue
Fluge & 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-changingContinue
How 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 doorsContinue
Wanted 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: MemberContinue
Jen Brea launches mass-advocacy platform — #MEAction goes live!
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 goContinue
Get a Ringside Seat for Invest in ME’s 10th International Conference on 29 May
Sasha and Simon preview the attractions and tells you how you can watch it unfold … This Friday, 29 May sees the tenth International ME Conference put on by UK research charity Invest in ME (IiME) in London. The day-long conference will include 220 participants from 17 countries and will be attended by researchers, clinicians and patients. The conference has grownContinue
The Lipkin Microbiome Crowdfunding Campaign Launches!
An ambitious $1.27m international, patient-led fundraising campaign storms into action. Sasha invites you to join it! This week sees the launch of a major new crowdfunding campaign: the Microbe Discovery Project. The campaign aims to raise $1.27 million (£760,000; €910,000) by 31 December 2014 to fund world-famous virus-hunter Dr. Ian Lipkin’s ground-breaking study of ME/CFS and the gut microbiome –Continue
Interview: Professor Jonathan Edwards on the UK Rituximab trial
by Sasha The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study. ‘No UK expert is better placed than Professor Edwards to advise us on setting upContinue
Go the Extra Mile for ME – and Your Favourite ME Charity
by Sasha ‘Go the extra mile,’ you’re thinking, as you lie on your sofa. ‘I can’t go the extra inch. This isn’t some sponsored walk thing, is it?’ No, my friends, it’s not. It’s an exercise in financial efficiency – oh, the fun! – that will allow even the most broke among us to have a go at raising someContinue
The UK Rituximab Trial: A Study in a Hurry
by Sasha On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, researchContinue