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
Continue
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
ContinueWhen a news story about ME/CFS appears online and allows comments, it’s our chance to get important information into the media, to raise awareness about our disease and to encourage people to donate to our biomedical research charities. There are some key things to remember when posting: If it’s a good article, thank the journalist. If it’s a bad article,
If there’s a local or regional newspaper in your area, they’re probably desperate for good-quality letters to the editor. These papers often have a huge reach, and are a great way of raising awareness about ME/CFS and letting people know that there are research charities that they can donate to. So if there’s a big ME/CFS story in the media,
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
ContinueOne of the most important things that we can do as ME/CFS patients is to donate to the charities that carry out biomedical research into the disease. Governments are notorious for their decades of extreme underfunding of research into ME/CFS. But even if they increase their spend, for most diseases, it’s research charities who foot the bill for most research.
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
ContinueCan 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,
Continue
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 grown
Continue
Clark Ellis spoke with Dr. Ronald W. Davis and Linda Tannenbaum about the End ME/CFS Project … History The history books record that in the nineteenth century Louis Pasteur formulated a “germ theory” of microbes as the causative agents of disease, and thus revolutionized medicine. His findings, along with his contemporary, John Snow (who linked cholera to infected water supply), changed
Continue
Simon McGrath describes ME/CFS research presently in the media spotlight … The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune profile hadn’t been seen before. “Perhaps the most
Continue
Gabby Klein reports on news and updates from MEadvocacy.org … “I have tried raising money by asking for it, and by not asking for it. I always got more by asking for it.”- Millard Full ME Advocacy has been very busy implementing new projects and are seeking your continued support for their upcoming projects. Thank you for your support of MEadvocacy.org.
Continue