Recovery, 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

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CFSAC 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

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Good 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

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Missed 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

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CDC 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-

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A 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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CDC Quickly Breaks First Promise

Posted by Cort Johnson CDC/CFSAC BLOGS #2   International Workshop – Clinical Management of CFS The aim of this workshop (to be held summer 2009) is to establish a collaborative international consortium of investigators who will present and discuss evidence- and practice-based findings related to the treatment, and management of CFS. CDC’s Five Year Strategic Draft Plan – May 2009

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Dr. Cheney Goes His Own Way – Again

Posted by Cort Johnson In April Dr. Cheney startled ME/CFS patients he announced that based on echocardiographic testing, that several commonly used supplements, some of which he had previously championed , were actually bad for ME/CFS patients. They included glutathione/whey protein, coenzyme Q. 10, D-Ribose and Vit D. Now he’s casting doubt on another core treatment; omega-3 fatty acids (fish

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