Posted by Cort Johnson Chronic Fatigue Syndrome (ME/CFS) is complicated. That’s bad enough for patients but for many physicians it’s entirely too complicated – the last person they want to see walk thru their office door is a chronic fatigue syndrome patient. Given the lack of chronic fatigue syndrome specialists – that’s a big problem – there are no substitutes
ContinueXMRV – the Potential For Change
Posted by Cort Johnson “A supernova (pl. supernovae) is a stellar explosion. Supernovae are extremely luminous and cause a burst of radiation that often briefly outshines an entire galaxy” This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients. If it really works out – still an if – one almost
ContinueXMRV – Puppet Master?
Posted by Cort Johnson The idea that XMRV could be a kind of ‘puppet master’ (eg. Dr. Bell) that allows other infections such as EBV or HHV6 or Lyme or enterovirus to become exacerbated is generating discussion. Dr. Coffin suggested such in his article “A New Virus For Old Diseases”. Dr. Huber, a researcher studying endogenous viral elements in ME/CFS has
ContinueXMRV/XAND Information Center
Posted by Cort Johnson The discovery of the XMRV retrovirus in most chronic fatigue syndrome (ME/CFS) patients appears to be a demarcating point in the history of this illness. The publication of the study in Science, the most prestigious scientific journal in the world, by a stellar cast of researchers from the National Cancer Institute, the Cleveland Clinic and the
ContinueGame Changer
Posted by Cort Johnson “Hopefully this will finally make people change their attitudes to this disease.” Dr. Judy Mikovits The news had been in the air for the last week; the Whittemore Peterson Institute was going to publish something big – really big – on Friday. Then early Thursday the news was out – a retrovirus had been
Continue“Solving CFS’ and Stepping Into The Digital Age
Posted by Cort Johnson The CFID’s is coming of age in the digital age. SolveCFS, a new website, is a nice step forward for the CFID’s Association. If you haven’t looked the CFID’s Association has been on a roll lately. Check these projects of the past few years: A sucessfull research initiative They hired a well known researcher, Suzanne Vernon,
ContinueRecovery, Relapse And Recovery (The Recovery/Recovering Stories #III)
Posted by Cort Johnson The Recovery/Recovering Stories – stories from ME/CFS patients who have experienced significant recoveries. The diversity of recovery stories indicates that ME/CFS is indeed a very heterogeneous disorder; any story may or may not apply to a given individual. Martha Kilcoyne detailed how she fully recovered from a severe case of chronic fatigue syndrome in ‘Defeat Chronic
ContinueCFSAC Nominations in Play
Posted by Cort Johnson The CFSAC is the federal advisory committee on chronic fatigue syndrome. It advises the Secretary of Health on the federal response to ME/CFS including research, treatment and disability. Among the agencies it interacts with are the Centers for Disease Control, the National Institutes of Health and the Social Security Administration. FIve slots are open, one of
ContinueGood Morning America Gets It Right!
Posted by Cort Johnson Its nice to see chronic fatigue syndrome (ME/CFS) well represented on the national stage. Dr. Donnica Moore was comfortable and poised on Good Morning America as she clearly enunciated many of the major aspects of ME/CFS. Early on she focused on post-exertional malaise – something we really need to get across. The inevitable depression question didn’t
ContinueMissed Opportunities Dog Efforts at Change
Posted by Cort Johnson The CFIDS Association of America generated a shockwave when Kim McCleary stood up at the federal advisory committees November 2008 meeting and accused the CDC’s CFS research program of wasting millions of dollars and engaging in poor research and said the program’s leader, Dr. Reeves had to go. The CAA would go on to slam the
ContinueCDC Grows MORE Isolated
Posted by Cort Johnson It’s seems that the CDC has figured this disease out. How else to explain their absence at the 3-day CAA/NIH sponsored brainstorming session recently held at Cold Harbor (“From Infection to Neurometabolism: a Nexus for CFS”). Thirty researchers from across the US and Canada were there but not one showed up from the biggest CFS team-
ContinueA Personal Lesson in Humility
A Guest Blog By Laurel (Laurel, a young woman with magna cum laude from Tuft’s University, has a severe case of ME/CFS. In this poignant blog she talks about some of hard lessons she learned (which everyone with this disorder should contemplate) and provides a personal look from the world of the severely afflicted. The CFIDS Association of America recently
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