Once dismissed as the `yuppie flu,` chronic fatigue syndrome is increasingly recognized as a debilitating disease that may afflict millions.
The wheelchair clattered through the crowded airport terminal. In it, my wife, Marla, sat slumped, her head resting on her shoulder. People swirled around us, but she did not see them.
She did not open her eyes. She did not speak. The fatigue was too great.
For 18 months, a mysterious illness had drained her strength and confounded her doctors. It left her desperate for a cure, or even a treatment. That is why we departed the Dallas-Ft. Worth Airport one recent Saturday to see a specialist in Charlotte, N.C.
When the strange malaise began in spring 1989, the doctor told Marla she had a bad case of the flu. Some sort of virus had wiped out her system, he said.
The diagnosis seemed reasonable. Nothing to be alarmed about. After all, at 37, when you get sick, you expect to get well.
She didn`t.
The fatigue, fever and muscle tremors persisted into the summer. She tried to dismiss the sickness as a nasty bug that had struck her at a vulnerable time. Like many new mothers, she was swamped by the demands of our 8-month-old daughter, Elizabeth, and her part-time job as a reporter for the Dallas Times Herald.
Her condition grew worse. She couldn`t sleep. Her muscles ached. Six months after the onset of her first symptoms, she consulted a second infectious-disease specialist, this one in Chicago. He told her to ignore the symptoms. She asked about chronic fatigue syndrome, or CFS. The doctor said she didn`t have it. He said news accounts of the incidence of the disease, and its seriousness, had been overblown.
Chronic fatigue syndrome sounds benign. Fatigue? Doesn`t everyone get tired?
This is not tired. This is not even exhausted. This is debilitated. Crushed. Utterly helpless.
Marla lies in bed or on the couch all day, all night. She cannot raise her head for more than a few seconds. The trip from the bed to the bathroom leaves her exhausted for hours. She cannot lift Elizabeth, now two years old, or read her a story or even sing her a lullaby.
When she speaks, Marla`s voice softens to a whisper; to conserve energy she has begun to write notes. She finds it difficult, sometimes impossible, to keep her eyes open, even though she is not sleepy. She takes her meals lying down, head on the pillow.
”I feel trapped inside this body,” she wrote one day. ”I feel so cheated out of the joy of my life.”
Chronic fatigue syndrome usually begins with flu-like symptoms-fever, body aches, sore throat and a general listlessness. But it doesn`t go away. The lassitude grows worse, disrupting the routines of daily life. For many there`s muscle weakness, headaches, joint pain, memory loss, problems with balance and concentration, persistent low-grade fever, insomnia.
In the mid-1980s, the disease was jokingly dubbed ”yuppie flu” because most of the estimated 500,000 to 5 million patients were previously energetic, affluent professional women ranging in age from 25 to 45. But the disease strikes men, too, and symptoms have been detected in patients of all ages, from small children to the elderly.
Today CFS remains a medical mystery, its cause and cure unknown. Scientists don`t know if it is contagious or how it might be spread.
It has baffled doctors for years because routine blood tests reveal nothing askew and the wide range of symptoms cannot be neatly associated with a single illness. And apparently no one dies from it. For those reasons, many doctors still dismiss CFS as a mental illness, a psychological, not medical, problem.
But that is changing.
In 1988, the federal Centers for Disease Control in Atlanta issued the first official guidelines for diagnosing CFS as a physical ailment. Now the syndrome has begun to emerge from the haze of public jokes and medical skepticism to stake its claim, in the words of one prominent researcher, as
”the epidemic of the 1990s.”
In early September, an announcement by three researchers kindled public interest in the syndrome and raised the specter of a new and virulent retrovirus-a distant cousin of the AIDS bug-as the cause.
The announcement was made by Elaine DeFreitas of the Wistar Institute, a Philadelphia-based biomedical research institution; Paul Cheney, a private physician in Charlotte, N.C., who has treated 2,000 patients with the illness; and David Bell, a pediatrician who reported an epidemic of CFS among dozens of children in Lyndonville, N.Y. At a medical conference in Kyoto, Japan, they disclosed that they had discovered a segment of a retrovirus in several patients with CFS.
The researchers cautioned that it was only a preliminary finding. But eventually it may force many in the medical community to reassess the nature of this enigmatic illness.
Even before the announcement, public interest in CFS had been rising. A Centers for Disease Control information hot line is fielding 3,000 inquiries about the disease a month, almost triple the volume of a year ago. In the past few years, at least 400 support groups have been formed across the country.
”There are many people who have this disease who are afraid to admit it because of the stigma,” says Jay Levy, a leading AIDS and CFS researcher at the University of California at San Francisco.
”I have yet to go to a professional meeting where, when I begin to talk, I don`t hear some snickering,” says Cheney, who treated 200 patients in a 1985 outbreak of an illness resembling the syndrome in the resort town of Incline Village, Nev. ”But when I finish I don`t see anyone snickering anymore. It`s almost a stunned silence. They say, `I had no idea.` ”
”The tide is turning,” agrees Anthony Komaroff, a CFS researcher at Harvard Medical School. ”Five years ago, virtually no one had heard of it. . . . But now there are hundreds of people around the world studying this, we`ve got international conferences, and both the National Institutes of Health and the CDC are involved. That doesn`t happen for fad diseases.”
There are fresh hints that the incidence of the disease may be far greater than previously believed. In a year-long pilot study, the Centers for Disease Control asked doctors in four U.S. cities to refer patients with CFS symptoms.
To qualify under the centers` guidelines, a patient must have been debilitated by the disease for at least six months. Other clinical conditions that could produce similar symptoms-including psychiatric illnesses-must be ruled out. And the patient must suffer most of 11 symptoms ranging from extreme fatigue and muscle aches to trouble with memory, concentration and balance and a mild fever.
Based on previous research, the centers expected about 5 percent of those patients referred by doctors in the four cities to meet its criteria. But the preliminary results of the study, released to the Tribune, reveal about 25 percent of those patients satisfied the guidelines; another quarter came so close that their cases were virtually indistinguishable from the first group. ”It`s significantly higher than we expected,” says Walter Gunn, the centers` principal CFS investigator.
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Before the illness struck 19 months ago, Marla was healthy and energetic. The onset of symptoms was debilitating and it was six weeks before she felt well enough to resume parts of her daily routine. But she still tired easily and caring for Elizabeth was a struggle. The act of feeding her a bottle left Marla exhausted and trembling. She was plagued by insomnia, night sweats, muscle pain.
Over the next year, her strength slowly returned. She worked part time and adjusted to the constant fatigue. She drove to work and then reclined in her car seat for an hour to summon the strength required to walk into the office. Once there, she avoided casual conversations with colleagues because of the toll they took on her energy.
After three hours of work, to prepare for the 15-minute drive home, she rested for an hour on the floor of a storeroom. At home, she took four-hour afternoon ”naps” and retired by 8:30 p.m., as soon as Elizabeth was asleep. But even altering her lifestyle to that degree didn`t seem enough.
One night she was too exhausted to lift a kernel of popcorn from the bowl to her mouth. Last May, she pushed herself beyond the limit.
She has since learned that the first warning doctors give CFS patients is: Don`t push. If you`re tired, they advise, rest and pace yourself. But Marla never had consulted a doctor familiar with the disease. She kept pushing herself until she experienced the relapse.
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Eugene Kennedy, a Chicago author and professor of psychology at Loyola University, who has struggled with the illness since 1986, describes it as ”a black cloud descending.”
The fatigue was so extreme for Kennedy, now 62, that he was forced to take a nap between his morning orange juice and the rest of his breakfast. He has since regained some stamina, but in order to write for three hours, he must take hourlong naps before, during and after the session.
”This is a long illness and people get tired of you being sick,”
Kennedy says. ”They want you to snap out of it; they think you can make it an act of will.”
Today the only way to diagnose CFS is by using the Centers for Disease Control`s list of symptoms, because there is no blood test or other diagnostic procedure.
Even though the disease continues to baffle researchers, studies have revealed at least one indisputable fact: In CFS, the immune system is in turmoil. Much of it seems to be stuck at full throttle, flooding the body with a tide of different virus-fighting white blood cells, enzymes and antibodies. At the same time, certain parts of the immune system sputter far below normal levels.
Since the immune system is on the attack constantly, syndrome patients typically do not catch flus, colds or other common illnesses. But because other parts of the immune system are weakened, victims can suffer from ailments such as acne, yeast infections known as thrush, or shingles, a painful skin disorder.
”The encouraging news, relative to a disease like AIDS, where you see devastating consequences of the immune system falling apart, is that in CFS these things are very subtle,” says Komaroff of Harvard.
Because the symptoms are so varied, many researchers doubt it could be caused by a single agent, even a retrovirus. Viruses almost certainly play a part, but that doesn`t help researchers much. Viruses are notoriously elusive; they don`t respond to antibiotic treatment and most don`t leave footprints for researchers to follow. There are hundreds of known viruses, probably thousands, still undiscovered.
So CFS could be caused by several known viruses-or even by a new virus working in combination with old ones-all attacking an enfeebled immune system at once.
Why the immune system is vulnerable remains unclear. It could hinge on a genetic predisposition, a set of environmental factors or something as simple as stress. Some researchers theorize that exposure to toxins such as dioxin, for instance, or to a pesticide could cripple a victim`s immune system, rendering it open to attack.
One plausible theory is that CFS packs two punches: First a virus or retrovirus or some other agent mauls the immune system, then other viruses grow and thrive.
There`s a long list of possible suspects that could do either or both, including herpes viruses like HHV-6 and cytomegalovirus, retroviruses, and several enteroviruses, which live in the human intestinal tract. Traces of the latter have been found in some CFS patients. Those viruses produce heart inflammations, neurologic disease or flu-like illnesses.
The problem is that all human beings carry in their bodies legions of microscopic viruses, bacteria, parasites, fungi and protozoans, any of which can be damaging, even fatal, if allowed to multiply. But the healthy immune system keeps them in check.
Almost everyone, for instance, has several herpes viruses in the bloodstream. One of the most common is Varicella-Zoster, which causes chicken pox. Once exposed, the immune system never kills the virus, but bludgeons it into submission.
In many CFS patients, researchers find several common herpes viruses flourishing in the bloodstream, including the Epstein-Barr virus. That led researchers in the mid-1980s to theorize that Epstein-Barr caused the illness. But Nancy Klimas, a researcher at the University of Miami, demonstrated recently that Epstein-Barr and other herpes viruses become ”reactivated”
only after the immune system is hobbled.
Epstein-Barr is now believed to be a consequence, not a cause, of the disease.
