“To replace ME/CFS, the [Institute of Medicine] committee proposes the name systemic exertion intolerance disease, or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort— physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives.” CfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsM E CfsChronic Fatigue Author:Ellen Wright Clayton
“There are many reports that suggest a biomedical basis for post-exertional malaise. This is inconsistent with the assumption that there is pathological avoidance of exertion in ME/CFS, and makes it difficult to believe that exercise leads to improvement.” ExerciseCfsChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsM E CfsGraded Exercise TherapyPace Trial Author:Sten Helmfrid
“The disabling weakness and exhaustion a person with ME/CFS experiences is so profound that "fatigue" is ...probably an insult.” Chronic Fatigue SyndromeMyalgic EncephalomyelitisMe Cfs Author:Jane Cuozzo
“Now, at last, medicine has decided to recognize our problem. This is a tremendous beginning, but by defining Chronic Fatigue Syndrome to the public with such a benign name, a name that gets confused with simple (often stress-related) fatigue, you have placed yet another burden on us.” FatigueChronic Fatigue SyndromeMyalgic EncephalomyelitisMe CfsChronic Fatigue Author:Jane Cuozzo
“...exercise has not been shown to produce a long term cure for ME/CFS and studies have not shown that exercise reverses the pathophysiological changes found in this illness... ...for many patients, adding an injudicious exercise program has caused post exertional malaise and deterioration of function” ExerciseChronic Fatigue SyndromeMe CfsGraded Exercise TherapyPost Exertional MalaiseMyalgic Encephalomyelitislgic Author:Fred Friedberg
“So, here’s the story about that: I was a member of ACT-UP in New York for two years, from its inception in 1986. I was a young gay man and everyone I knew was dying. In 1988, I moved to San Francisco to become a newspaper reporter at the San Francisco Chronicle, and that ended my life as an “activist.” To attribute my current work on PACE and related issues to what I did 30+ years ago is preposterous. My opinion that the PACE trial is a piece of crap and likely qualifies as research misconduct is based upon my public health training and expertise.” ActivismActivistChronic Fatigue SyndromeMe Cfs Author:David Tuller