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 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
Continue
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
Continue
Clark Ellis brings us Part 2 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community … The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community. Questions were submitted
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
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
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
Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community … The Institute of Medicine recently published its report into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One of the committee members, Dr. Lucinda Bateman, graciously agreed to answer questions submitted by members of the patient community. Questions were submitted on the Phoenix Rising forum
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
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
Continue