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
ContinueAuthor: Phoenix Rising Team
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
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
ContinueCDC 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
ContinueDr. Chia On Oxymatrine, Autoimmunity, ME/CFS and FM
Posted by Cort Johnson Dr. Chia posted a lengthy response to some of the questions asked regarding the last Oxymatrine post. (I added the headers) Dr. John Chia: Interferon and Oxymatrine: First of all, oxymatrine or equilibrant is used alone without interferon in almost all of the patients. I only used interferon-alpha 2a to help reducing the muscles pain often
ContinueDr. 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
ContinueThe Wave Begins? Swine Flu, ME/CFS and the CDC
Posted by Cort Johnson THE CDC/CFSAC BLOGS #1 Dr. Ken Friedman, board member of the IACFS/ME, just reported the first documented case of a person coming down with chronic fatigue syndrome (ME/CFS) as a result of getting the swine flu virus. This is what he said: Regrettably I must inform you that the first case of post-swine flu CFS has
ContinueDr. Chia Produces Herbal Immunomodulator – Oxymatrine
Posted by Cort Johnson Dr. Chia, an infectious disease specialist focusing on chronic fatigue syndrome (ME/CFS), has finished the production of a pure form of Oxymatrine, an alkaloid derived from the Sophora plant in China. Oxymatrine is used to treat many diseases including hepatitis and cancer there. Oxymatrine has been an important part of Dr. Chia’s protocol for several years
ContinueLooking Back – At the CFID’s Association
Posted by Cort Johnson John Herd’s recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts we’ve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the post’s tone was mild the post itself too often
Continue