Chronic Fatigue Syndrome Stigma Hurts Patients
By John Schieszer SEATTLE (Reuters Health) -
Patients with chronic fatigue syndrome are not just fatigued, often they are severely disabled. Yet, many patients have trouble getting good care and physicians at a conference here said that is partly due to the disease's name.
"I think the name itself offends patients and it doesn't help them in terms of having people they know or anyone they contact believe that they are really sick. It sounds just like a symptom," said Dr. Lea Steele, who is with the Kansas Commission on Veterans Affairs in Topeka, Kansas.
A growing number of chronic fatigue syndrome patients have been calling for a name change. A vocal group claims the disease is given little respect, and even funding efforts are harmed because the name implies that the patients are just fatigued and do not have a serious illness.
Many physicians attending the American Association for Chronic Fatigue Syndrome (AACFS) 5th International Conference, said that most patients find the name to be unacceptable because it focuses too heavily on only one easily misunderstood symptom. About 30 years ago, multiple sclerosis patients were subject to this same type of stigma when people referred to MS as "hysterical paralysis," Steele commented.
"I have felt for many years that the term chronic fatigue syndrome, which came in 1988, was something that was a trivial name," said Dr. Leonard Jason, from DePaul University in Chicago, Illinois. "If I said you had chronic cough syndrome, you would probably think that is kind of trivial. But if I said you have tuberculosis you would probably say, well that is serious."
Jason conducted a study with almost 100 medical students and found that the name made a difference and if it were changed to something more descriptive of the condition then patients would be considered more disabled and ultimately receive better care.
"The syndrome is trivialized by many people and yet it is a very serious condition. One way of rectifying that is to change the name," he said.
Currently, several names are under consideration, including myalgic encephalomaphy, neuroendocrine immune disorder and polyalgic asthenia.
CFS patients are sometimes bedridden. Their disease is usually marked by medically unexplained, newly onset fatigue which lasts at least 6 months. The fatigue is also accompanied by other symptoms, which include impaired memory, sore throat, tender neck or armpit lymph nodes, and muscle pain.
Jason said many CFS patients are denied disability insurance benefits because doctors and employers believe they are lazy or have a mental illness rather than a serious physical condition.
But president of the American Association for Chronic Fatigue, Dr. Sudhir Gupta, disagreed. "I think it would be premature at this stage to do anything with the name. It could hurt a lot of things...In my opinion, it would be a mistake to change the name until we know this disease better."
One of the problems a name change could adversely affect is funding for research, Gupta added.
Permission to use this article from: The CFIDS Association of America, P.O. Box 220398, Charlotte NC 28222-0398), http://www.cfids.org/and/or toll-free telephone number (800/442-3437) of The CFIDS Association of America, Inc.
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