Study: Name Influences Provider Perceptions

(Craig Maupin and Nancy Hall at http://cfidsreport.com) A recent study has affirmed what sufferers of Chronic Fatigue Syndrome have been saying for many years – the name given an illness plays a large role in forming perceptions of the illness. The study, published in the Journal of Social Policy by a DePaul University research team headed by Leonard Jason, PhD., asked health care providers to rate the severity of an illness given three different names. Of those three, the name chronic fatigue syndrome, or CFS, was perceived by health care providers to be the least severe.

The study issued questionnaires to nurses and nurse assistants asking them to compare three illnesses: “chronic fatigue syndrome, or CFS”; “chronic neuroendocrineimmune dysfunction syndrome (CNDS)”; and “CNDS, formerly known as CFS”. Of these three, the term chronic fatigue syndrome was perceived by the research to be less severe in terms of disability and associated with having a higher quality of life. The authors state:

"When the name of the illness tends to downplay the seriousness of its symptoms, the individual might be viewed as responsible for the development and "cure" of the illness. This process, while invalidating to patients, relieves society at large from the responsibility to develop programs for individuals and aggressively seek effective treatments and therapies. When scientists address illnesses that are not easily explained, such as chronic fatigue syndrome, it might be useful to explore research strategies that prevent stigmatization caused by biases and unexamined assumptions."

In 1988, a CDC panel coined the name “chronic fatigue syndrome” to describe a disabling illness of flu-like symptoms, severe fatigue, and orthostatic intolerance. Since then, sufferers of the illness have asserted the name has contributed to misperceptions of the disease, as well as a steady broadening of the definition. As a response to these concerns, as well as to new research findings involving unique immune and circulatory dysfunction, the Department of Health and Human Services requested the formation of a name change workgroup (NCW).

After 5 years of evaluation of current research, the NCW decided on the term neuroendocrineimmune dysfunction syndrome. The CDC has since fought the change. The HHS reversed their position on reform earlier this year, citing concerns about cost as well as possible negative effects of a change on scientific standards and patient care.

In 1994, the CDC implemented a new research definition, focusing less on the distinct symptoms seen in the disease, and more on an “integrative” approach that could bring other fatiguing illnesses into CFS research samples. However, many studies using the definition have shown conflicting results and outcomes, and have been roundly criticized for their lack of interpretable data. Patient advocates have claimed that the name has had a counterproductive influence on the definition of the illness and on research, obscuring a distinct disease under a broad symptom of “chronic fatigue”.