A Mysterious Illness Receives Recognition

CFS (chronic fatigue syndrome) is “a major health and economic threat, second only to that of AIDS.”

THAT is what Dr. Byron Hyde of Canada said during the world’s first CFS symposium, in Cambridge, England, in April 1990. In fact, Dr. Jay Levy, a San Francisco AIDS researcher, called CFS “the disease of the ’90’s.”

Emergency Medicine explained that CFS is “a multisystem disease that affects the central nervous and immune systems and often the musculoskeletal system.” Concern over the disease has become great. When the U.S. magazine Newsweek ran a cover story on it in November 1990, the issue became the publication’s biggest seller of the year.

The CDC (U.S. Centers for Disease Control) in Atlanta has taken the illness seriously. In 1988 this leading U.S. health agency officially recognized this mysterious ailment by providing physicians criteria, or a set of signs and symptoms, for diagnosing it. The agency named the disorder chronic fatigue syndrome because its common, major symptom is fatigue.

Problem With the Name

Many, however, feel that the name is unfortunate. They say that it minimizes the illness, since the fatigue that characterizes CFS is different from ordinary tiredness. “Our fatigue,” one patient explained, “is to ordinary tiredness what lightning is to a spark.”

Dr. Paul Cheney, who has treated hundreds of CFS patients, says that calling it chronic fatigue is “like calling pneumonia ‘chronic cough syndrome.’” Dr. J. Van Aerde, who himself was stricken by CFS, concurs. A short time ago, this doctor held two full-​time jobs​—he was a physician at night and a scientist during the day, besides being a husband and a father. Last year he told of his experience with CFS, and Canada’s Medical Post published his account:

“Imagine a disease that zaps all your energy, making lifting the covers to get out of bed a real effort. Walking around the block, even at a snail’s speed, has become a major undertaking, picking up your toddler a breathtaking experience. You avoid your study in the basement because you cannot make it back up the stairs without having to sit and rest half way. Imagine, you can read the words and sentences of a newspaper article, but you can’t put it all together . . .

“Imagine feeling like you were receiving hundreds of intramuscular injections simultaneously in all your muscles, making it painful to sit, impossible to move, making a hug no longer pleasurable. . . . Imagine frequent chills, cold sweats, often accompanied by low-​grade fever. Combine all the symptoms and compare it with the worst flu you have ever fought, except it is much worse and lasts for a whole year, perhaps longer.

“Imagine the anguish and the bottomless disappointment when you relapse again and again, just when you thought you had beaten this thing. Imagine being scared, panicking because you feel imprisoned in a foreign body, and you don’t know when or even if it all will end.”​—September 3, 1991.

The name given the illness in the United Kingdom and Canada underscores the seriousness of the ailment. There it is called myalgic encephalomyelitis, or ME for short. “Myalgic” draws attention to the muscle pain, and “encephalomyelitis” to the effect the disorder has on the brain and the nerves.

Since the disorder affects the immune system, patient support groups in the United States, of which there are now hundreds, have named it CFIDS (chronic fatigue immune dysfunction syndrome).

Is this really a new clinical problem? How has it come to public attention?

Historical Review

CFS is probably not a new illness. Some have identified it with an array of symptoms that in the last century was called neurasthenia, a name drawn from the Greek denoting “lack of nerve strength.” The symptoms of CFS are also similar to those of fibromyalgia, which is also known as fibrositis. Some even believe that CFS and fibromyalgia may be the same syndrome.

Many outbreaks of CFS-​like illnesses have been reported in previous decades, most of them in the United States. But they have also occurred in England, Iceland, Denmark, Germany, Australia, and Greece. Names to describe the syndrome were Iceland disease, Akureyri disease, Royal Free disease, and others.

More recently, in 1984 about 200 people in the small town of Incline Village, near the California-​Nevada border, suffered a flulike illness that persisted. “We knew them as productive, happy, vigorous adults,” explains Dr. Cheney, who treated many of them. “All of a sudden they got sick and wouldn’t get well. In some cases they were sweating so much at night their spouses had to get up and change the bed sheets.”

Some disparagingly called this outbreak of illness at Incline Village Yuppie flu, since middle-​class, upward mobile young people were predominately affected. It was thought that patients might be suffering from acute infectious mononucleosis, but tests for that disease came up negative for most of them. Blood tests, however, did reveal high levels of antibodies to the Epstein-​Barr virus, a type of herpesvirus. Thus, for a time, the illness was commonly known as chronic Epstein-​Barr.

The Illness Gains Recognition

When Dr. Cheney reported to the CDC what was happening in Incline Village, little credence was at first given to his report. But from around the country, reports of similar health problems were soon received.

In time, studies indicated that the Epstein-​Barr virus was not a causative factor in most cases. Actually, this virus is present in about 95 percent of the adult population. It lies asleep inside people’s bodies. “When it’s awakened,” a doctor doing CFS research explained, “it may contribute to the disease.” But not necessarily.

A lot of research is being conducted to find the causes of CFS. As a result, more and more doctors are acknowledging that a real medical problem is affecting perhaps millions of people. Dr. Walter Wilson, the chief of infectious diseases at the Mayo Clinic in Rochester, Minnesota, U.S.A., said that he has changed his attitude. Seeing so many seeking help at great financial expense, he says, “you have to treat them with respect for what they are going through.”

Clearly, many lives are being devastated by an illness with common symptoms. The CDC receives thousands of calls about the condition every month, and only AIDS prompts more inquiries to the U.S. National Institutes of Health. “Something is going on,” explained Dr. Walter Gunn, who was in charge of CFS research at the CDC before his recent retirement. “But whether it’s one disease or several, one cause or more, is not clear.”

Some believe that CFS is primarily a psychiatric problem. The December 1991 American Journal of Psychiatry noted: “The authors argue that chronic fatigue syndrome will meet the same fate as neurasthenia​—a decline in social value as it is demonstrated that the majority of its sufferers are experiencing primary psychiatric disorders.” And a new book, From Paralysis to Fatigue, characterizes CFS as “a disease of fashion,” implying that it will not prove to be a significant illness.

Is CFS primarily a psychiatric problem? Are the symptoms usually due to depression? Is CFS a real disease?