By Craig Maupin (http://www.cfidsreport.com) (8-08)
In a 2007 issue of the “Journal of Chronic Fatigue Syndrome” (14:4), a group of researchers from DePaul University examine the stigma surrounding chronic fatigue syndrome (CFS). The article, “How Science Can Stigmatize: The Case of Chronic Fatigue Syndrome”, discusses how flawed scientific policies have contributed to the stigma associated with CFS. Researchers, Dr. Leonard Jason and Judith Richman, also suggest that flawed scientific policies have affected research findings and clinical care.
The name, chronic fatigue syndrome, was chosen by the Centers for Disease Control (CDC) in 1988. Since its inception, the name has sparked controversy and debate. The authors note that “fatigue is a symptom experienced by many otherwise healthy individuals in the general population”. They also note that fatigue is a “symptom of many illnesses”.
Studies have shown that the name chronic fatigue syndrome is associated with poor attributions of sufferers in health care providers. In April of 2005, a scientist who was present at the 1988 meeting, Dr. Anthony Komaroff, spoke out about the manner in which the decision on the name was made: “None of the participants in creating the 1988 case definition, and the illness name, ever expressed any concern that the name might appear to trivialize the illness. We simply were insensitive to that possibility, and we were wrong. Since “fatigue” is a universal human experience, I’m afraid some people have responded to the word “fatigue” in the name by thinking “I’m tired now and then like everyone, 'Why is this an illness?' ”
Estimates of the prevalence of CFS in the United States have increased. These estimates have ranged from 20,000 cases of CFS in 1993 to a 4 million cases in 2005. For instance, the CDC used different criteria in epidemiological studies in both Wichita and Georgia. The Wichita study, which used a 1994 research definition, estimated rates of CFS to be roughly 400,000 in the United States. A Georgia study, using a looser 2005 research criteria, estimated rates of CFS in the United States at 4 million, a ten-fold increase. The authors believe that the decision to include individuals who “might not have any reductions in key areas of physical functioning, and only impairment in role emotional areas” was responsible for the burgeoning estimates of CFS.
Jason and Richman explore the impact of broad definitions on CFS research and clinical care. They provide several examples of studies that utilize more inclusive definitions of CFS. These studies tend to suggest previous physiological findings in CFS, using stricter definitions, are no longer valid. As both researchers note, scientific policies have the power to affect how people with CFS are treated in a clinical setting: “Measurement that fails to captures the unique characteristics of [CFS] might inaccurately concluded that only distress and unwellness characterize [CFS]”.
The article is worthwhile for anyone who wants to understand the complex problems and trends in CFS research. The name “chronic fatigue” has been criticized for being too broad, suggesting too common a complaint. Over time, the definitions of CFS have broadened as well, reflecting these concerns about the name. Jason and Richman suggest that “using a broad or narrow definition of CFS will have important influences on CFS epidemiologic findings, on rates of psychiatric comorbidity, and ultimately on the likelihood of finding biological markers”.
Scientific policies affect how CFS, or any illness, is conceptualized, treated, and viewed. More discussion is needed about whether flawed and irrational policies have produced the stigma associated with CFS.