Monday, September 28, 2015

Patients battle for justice | OUPblog

 
by Leonard Jason
 

Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, multiple sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals?
 
... When this porous case definition was used to select patients, the resultant heterogeneity increased the risk of failing to consistently identify biomarkers, which contributed once again to dismissing those affected as having a psychiatric illness. Misguided psychiatrists then developed treatment approaches focusing on increasing exercise, even though the patients' chief complaints were muscle weakness and exercise-induced fatigue.
 
... This past year, in an effort to rectify these tragic abuses, the Institute of Medicine (IOM) released a report that not only clearly emphasized the debilitating nature of this illness, but also strikingly rejected the stigmatizing name CFS and the defective case definition. Unfortunately, particularly in light of decades of past disastrous scientific blunders, the IOM once again imposed an inappropriate name (i.e., systemic exertion intolerance disease) on the patient community, but patients valiantly challenged this recommendation by collecting data that exposed the spuriousness of this foolish name change effort.  Even a federal panel called the Chronic Fatigue Syndrome Advisory Committee at its recent meeting in August has rejected this new name.
 
Is there any way to salvage the damage inflicted on the larger patient community by well-intentioned scientists from the IOM?  Perhaps we might consider re-activating the brilliant scholarship of Dr. Melvin Ramsay and the term Myalgic Encephalomyelitis

Invisible Illness Awareness Week 2015 Starts Today!