This article was written in May, 1999.
"Chronic Fatigue Syndrome" is a terrible name for a disease. The name suggests that it is only fatigue and that it is all in the mind -- wrong on all counts. The name also encourages people and authorities not to take this severely debilitating condition seriously, increasing the destructive isolation to sufferers.
At the US government's CFS Coordinating Committee meeting last week, it was decided that a new name for CFS should be found before 20th September, 2000. A Name Change Working Group is to advise the US surgeon-general, who will recommend a new name.
Patient groups are rejoicing over the move, as they have been asking the US government for several years to rename the disease. Surveys have shown that over 90% of CFS patients want the name of their disease to be changed. Replacement names suggested by patient groups are diverse. `Myalgic Encephalopathy' describes what it does medically. `Ramsay's Disease', named after a doctor who described the illness. `Cheney-Peterson Disease' after two doctors who were the first to recognize and treat CFS.
Hillary Johnson describes the problems the name causes: "The euphemistic, benign-sounding name suggested a trivial, violational disability, one that could be shrugged off with vitamins, aerobic exercises, stress reduction, a good night's sleep, or sheer will-power ...in addition, it had the subtle effect of inspiring hostility toward the victim."
CFS is far from something that can be fixed by a good night's sleep. Aside from profound fatigue, symptoms include muscle pain, headaches, nausea, sleep disturbance, memory and concentration impairment, abnormal body temperature, sore throats and fainting.
Since high-profile CFS sufferers such as Michelle Akers have become known in the media, CFS is becoming more widely understood. Even so, most people do not understand how bad CFS can be. In the worst cases, CFS can cause frightening symptoms such as seizures, paralysis, and dementia. Studies by an AIDS researcher have shown that patients with severe CFS are as debilitated as AIDS sufferers in the last few weeks of their life -- yet the CFS patients have to live with their disease for an indefinite amount of time.
Scientists have known for years now that CFS is not a form of depression or a psychological disorder, but this information has been slow getting through to family doctors and the general public. This is due to the disorder's inappropriate name. It is hoped that a new name, and the publicity surrounding the change, will be a chance to educate the public about the disease, and get rid of the stigma attached to CFS.
