The Invisibled Disease

When Irene Baker found out she had chronic fatigue syndrome, some doctors said it was all in her head. Others said she’d never recover.

Boy, were they wrong.

High in California’s Sierra Nevada, seasons change with astonishing swiftness. One day it’s fall, the aspens ablaze with golden light. Then the first winter storm barrels across mountain passes, blanketing the slopes in white. For a time the world belongs to skiers and snowboarders, who flock to the peaks around Lake Tahoe to throw themselves gleefully down powdery trails. Then, just when it seems winter will never end, an improbably warm day coaxes wildflowers from the clearings, and suddenly hikers and bicyclists are charging up the mountains for top-of-the ridge picnics.

Irene Baker’s a local, and she loves it all–the fierce, frigid storms, the shimmering summers, the allure and challenge of a constantly changing landscape. That’s why it’s so hard for her to think back to the time, 14 years ago, when it looked as though so much of what she loves about her life might be snatched away.

“It’s almost as if that all happened to someone else, not me,” she says, taking a break from errands at a coffee shop not far from the high school where she used to teach. With cheeks flushed, her bright eyes flashing with restless good humor, Baker could be cast in a commercial for some new age-defying, health-boosting supplement; she looks that vibrant.

Which is exactly how she thought of herself before the trouble began, before the appearance of a mysterious illness that would knock her life off track.

Baker was in her early forties then, teaching social studies full-time at Truckee High School and raising a ten-year-old daughter on her own. “I’d been feeling fine, working hard, jogging up into the mountains whenever I could. Everything seemed to be going so well,” she remembers.

“Then one day I put on running shoes to go jogging, and I just couldn’t do it. That had never happened to me before. It was as if there were heavy weights tied to my arms and legs. It was a kind of dead tiredness I’d never felt.”

The symptoms might have heralded a bout of influenza, but even the nastiest flu lifts after a week or two. Whatever this was only got worse as the weeks wore on.

“I’d try to do something around the house for a few minutes, and that would be it for the rest of the day. I’d be utterly exhausted,” she says. “For the first three weeks all I did was sleep. Then, after that, I couldn’t sleep.” She began to suffer night sweats, blinding headaches, a burning throat. Worse still was the feeling of being enveloped in a mental fog.

“I couldn’t concentrate. I couldn’t read,” she says. “My brain just seemed disconnected. I tried to keep teaching, but I’d be writing something on the blackboard when all of a sudden the kids would say, ‘Mrs. Baker?’ and I’d look up to see that what I’d written made no sense at all. I really began to wonder if I was losing my mind.”

In fact, Baker was one of the first people diagnosed with what has come to be called chronic fatigue syndrome, or CFS, a condition now thought to afflict anywhere from a half million to a million Americans, making it perhaps as common as Parkinson’s disease and lupus. Researchers chose the vague name because they had little to go on, just a sketchy collection of symptoms dominated by prolonged and unexplained exhaustion. Then, as now, people with CFS experienced a grab bag of other complaints, including headaches, muscle or joint pain, tender lymph nodes, sore throat, and memory trouble.

Over the course of a few months, more than 200 people from the little towns around Tahoe and the surrounding region were struck down by the same baffling set of symptoms. Investigators from Harvard University, the National Institutes of Health, and the Centers for Disease Control and Prevention arrived, followed by members of the media, who brought the apparent epidemic into the national spotlight.

Still, plenty of doctors scoffed at the notion that some sort of plague had descended. It was much more likely, they said, that patients were feeding on each other’s anxiety, or that their fast-paced lives had tired them out. Reporters, noting the affluence of some patients, dubbed the ailment “the yuppie flu.” Meanwhile, business leaders around Tahoe fretted that all the bad publicity would scare off tourists.

“Most of the doctors here in Truckee thought the whole thing was in our heads,” Baker recalls. “Right here from the start, there were people who were sure we were making the whole thing up.”

Baker knew otherwise. Morning after morning she barely had the strength to get her daughter ready for school. She had to give up teaching that spring and couldn’t go back in the fall. “I was scared to death,” she says. “I had a ten-year-old daughter. I was a single parent. I had no idea if or when I would be well again, when I could go back to work. I thought I’d lose my house, my job, everything.”

The blackest moment came in 1986 as she related her symptoms to health investigators, who suspected a smoldering virus was to blame. “I remember one of them telling me, ‘You’ll probably be like this for the rest of your life.'” Now she can only shake her head in grim wonder at the strangeness of it all.

Fortunately for Baker, the experts were wrong.

Today, after years of tracking the outcomes of some of those first cases and thousands more, researchers finally have a few things to celebrate. For one, they’ve learned that most people get better. Even many of the sickest recover fully, as Baker did; others get well enough to reclaim their lives. It’s now clear that only a small proportion of patients remain debilitated for more than five years.

Also to the relief of patients, early naysayers have been silenced. While the workings of the mind-particularly depression-may indeed play a role in the development of some CFS cases, others seem to result from discernible physical glitches. No one studying the illness these days dismisses the symptoms as those of hypochondria or hysteria.

And there’s more good news.

Though much about chronic fatigue syndrome remains bewildering, researchers have begun to piece together what goes wrong. Their discoveries offer real hope to the thousands of people all over the world who continue to come down with the devastating ailment.

IN THE BEGINNING, when word of a strange new malady spread through the towns around Lake Tahoe, people had plenty of reasons to be afraid. It’s bad enough to contract any lingering disease, far worse to have one that doctors say they’ve never seen and can’t identify. And because the mysterious plague seemed to strike in clusters–11 teachers at Baker’s school, girls on a basketball team the next town over, and a number of casino workers across the Nevada state line–many assumed it was contagious.

Mothers hesitated to kiss their children for fear of passing it along, remembers Daniel Peterson, one of the few local physicians to take the illness seriously from the start. “Even at the clinic we weren’t sure what precautions to take. Patients came in asking, ‘What have I got?’ and we didn’t have the faintest idea what to tell them.”

Was a new microbe on the loose? Around the world AIDS had begun to cast a lengthening shadow, spurring worries that other viruses might be lurking. Some people even called the new illness “chronic fatigue and immune dysfunction syndrome” (CFIDS), a name that is still used by a prominent patient support group even though faltering immunity, researchers now know, is only sometimes a feature of the illness.

The Epstein-Barr virus, the culprit behind mononucleosis, was an early suspect. Doctors theorized that some people with EBV might have been unable to shake off the active infection; maybe chronic fatigue syndrome was actually chronic mononucleosis. But the idea didn’t hold. Virologists found that people with CFS were no more likely than healthy individuals to carry the Epstein-Barr virus. Nor did CFS patients show any of the changes in their blood–a rise in antibodies and other immune fighters, for example–that would be expected in someone with a chronic infection.

In the years since, other viruses have come under suspicion only to be exonerated. And despite what initially looked like a cluster of cases, subsequent research has revealed that CFS doesn’t typically fan out through families, day care centers, nursing homes, or other community groups the way microbial illnesses do.

In short: It appears not to be contagious, at least in the usual sense.

Furthermore, the illness isn’t new. Around 30 years before the first cases showed up in the Tahoe area, the CDC investigated similar reports of chronic fatigue in Punta Gorda, Florida–an outbreak that never made the national news. Last century doctors routinely diagnosed neurasthenia, a “neurosis characterized by weakness and fatigue,” according to old textbooks; generations earlier physicians treated cases of febricula (which means “little fever”) and nervous exhaustion. Most experts now think those, too, were names for CFS. In fact, many fuzzily defined diagnoses that have risen in favor and then fallen over the years–including multiple chemical sensitivity and even Gulf War syndrome–have at their core a collection of symptoms that fits the definition of CFS.

Each of these conditions in turn has drawn skepticism when straightforward explanations of its origin failed to pan out. But the lack of a single cause doesn’t mean a disease isn’t real, says epidemiologist Paul H. Levine, one of the first scientists to go to Tahoe to investigate and a leading expert on the syndrome.

“A lot of us began with the notion that this might be a viral illness, that we would find a single agent at work here,” says Levine, who recently left the National Cancer Institute to become a clinical professor of epidemiology and biostatistics at the George Washington University School of Public Health and Health Services. “We were following the model of a disease like AIDS or influenza. But that may have thrown us off track. Many of us now think that CFS is probably more like heart disease–a condition that may have a variety of causes.”

A heart attack, in other words, can be triggered by various factors that add up in different ways to the same basic problem. Your arteries may be clogged because your diet is rich in saturated fats or, alternatively, because your body is lousy at clearing even normal levels of bad cholesterol from your blood. High blood pressure, a sedentary lifestyle, or inherited defects in the heart itself are just a few other factors that can predispose you to cardiac arrest. In the same way, chronic fatigue syndrome may arise from a number of characteristics that vary from one person to the next.

Some cases of CFS, scientists have learned in the last few years, can likely be blamed on something no one expected: an unusual type of low blood pressure called neurally mediated hypotension.

When people with this condition stand without moving for ten minutes, they become light-headed or queasy and may even pass out. The fainting happens because the body’s usual mechanism for regulating blood pressure is out of kilter. For unknown reasons, the arteries fail to receive the signal that would normally order them to constrict. (If the vessels don’t squeeze closed a bit, they can’t bump up blood pressure enough to keep a steady supply of oxygen and nutrients flowing up to the head.) After such a fainting spell as many as three out of four patients with this glitch drag through a day or more of disabling fatigue.

In 1995, Peter Rowe and a team at Johns Hopkins University School of Medicine decided to look for signs of this blood pressure abnormality in 23 patients with CFS. The volunteers were strapped to an adjustable table, which was then tilted to a nearly upright position. While the volunteers remained immobile for 45 minutes, doctors checked for signs of dizziness and sinking blood pressure. Indeed, 22 of the 23 patients developed these symptoms.

In the wake of Rowe’s findings, it was easy to imagine that this form of low blood pressure might be the single cause of CFS. But reality, it turns out, is more complicated.

Of 200 CFS patients checked in a joint study by the NIH and Johns Hopkins researchers last year, only half had abnormal test results on the tilt table–far less than the 95 percent seen in the earlier study. Even half is impressive, of course, says Stephen Straus, a leading chronic fatigue researcher at the NIH. But researchers don’t yet know how often the abnormality turns up without fatigue in the general population. And what triggers the malfunction in the first place remains an enigma.

In another set of cases, CFS seems to arise from a subtle defect in the body’s ability to deal with physical or psychological stress. Mark Demitrack, a psychiatrist at the University of Michigan, says that because many CFS patients became ill shortly after facing a major challenge to the body or psyche-a viral illness, for instance, or a period of emotional anguish–it made sense to look into their physical response to stress.

The hunch paid off. Demitrack and his colleagues found that some patients with CFS show signs that the system is out of whack, including a slightly damped overall response to stress and, in particular, abnormally low bloodstream levels of the stress hormone cortisol. Evidence that bolsters their theory: When scientists at the NIH recently gave a group of CFS patients a drug that mimics cortisol, two-thirds reported feeling better.

Even if this abnormality turns out to be widespread, it won’t account for everybody. In yet a third group of CFS patients, Levine says, the glitch seems more likely to lie in the immune system, specifically in the realm of so-called natural killer cells, whose primary role is thought to be defending the body against viruses and cancer. For more than five years Levine has been studying a family in which five out of six brothers and sisters plus three close relatives have chronic fatigue syndrome. Six of the eight have abnormally sluggish natural killer cells. The same defect has shown up in a significant number of other patients with the disease.

With three different links to CFS identified already–and still others likely to follow, according to Levine–it may seem as though scientists have merely traded one mystery for a bevy of half-completed puzzles. But teasing apart versions of the illness, Levine says, is enabling the researchers, at least in some cases, to take steps toward treating the underlying problems.

Straus’s team at the NIH has enrolled chronic fatigue patients in a study of a drug that may control neurally mediated hypotension. If the results, which should be ready within the year, are good, then at least one group of patients could be relatively easy to treat. Unfortunately, the cortisol-boosting medication tested by the NIH last year–an altered form of the steroid-proved too dangerous in its side effects to make it a practical therapy for those with stress-mediated CFS. But further research, Straus says, could produce less toxic alternatives. “Things are moving,” says Levine. “There is still plenty we don’t understand about chronic fatigue syndrome. But for the first time, we are beginning to see the light.”

An expert’s optimism is cold comfort for people still slogging through the worst of their illness. In 1985 Janice Kennedy and her husband, Gerald, worked at the same school as Irene Baker. Gerald taught shop classes; Janice was an English teacher. Janice was an avid cross-country skier, and both loved backpacking. Then CFS hit, and their lives have never been the same.

While Baker’s and Janice Kennedy’s symptoms came on with the suddenness of a mountain storm, Gerald’s troubles overtook him by degrees; over several months he experienced a steady erosion of energy, a gathering mental cloudiness, and dulling headaches. By the winter of 1986 both were too sick to keep teaching. Twice Gerald tried to go back, only to suffer a relapse. Five years ago, unable to make it through the tough winters in Truckee, he and Janice moved to a small town in the foothills.

“We always loved being outdoors,” says Janice, sitting on the sofa and gazing out at the woods that surround their house. “Now it’s an effort just to get down the hill in the truck to get groceries.” Gerald, a powerfully built man, used to pride himself on his ability to build almost anything and fix what needed fixing. Today he hires workers to do jobs he once did with ease.

“You work at something for half an hour, and if you overdo it, you can end up wiped out for days,” he says. “So we’ve both had to learn to pace ourselves.”

Why some people recover and others languish remains one of the perplexing questions in CFS research, though some scientists have noticed that patients whose symptoms come on rapidly stand a better chance of getting well than those whose illness creeps up slowly. It also seems that when the fatigue persists for more than a couple of years, patients are less likely to recover fully. Those differences, Levine says, may point to different forms of the condition.

Gerald Kennedy’s experience of deep exhaustion following a bout of strenuous activity is common among CFS patients. The solution, as he’s learned, is not bed rest but carefully controlled exercise. While many sufferers shun physical activity altogether for fear of a relapse, the muscle atrophy that ensues makes them even more tired and may worsen other symptoms. Experts now recommend that patients follow a graded exercise program from the start–beginning slowly but building, if possible, to relatively normal levels of activity.

A positive attitude can also help. “People who have a fixed belief that there is a single cause, like some unidentified virus, often have a harder time,” says Demitrack. “They think of themselves as passive victims of something that came in from the outside. They begin with the idea that there’s nothing they can do.” Many CFS experts have begun to prescribe cognitive-behavioral therapy, an approach that’s designed to replace self-defeating attitudes with more optimistic expectations. Preliminary studies show the method works: At Kings College Hospital in London, 70 percent of CFS patients who completed 13 sessions of cognitive-behavioral therapy showed marked physical improvement. Only 19 percent of patients in a group that practiced relaxation techniques got the same boost.

The best news of all is that many sufferers eventually get significantly better, no matter what they do. “In our experience, 10 to 15 percent of even severe cases recover completely over the first 18 months,” says Demitrack, who has been studying the disease for more than a decade. “Another 70 to 80 percent have significant improvement. Only a few–one in ten–experience the worst of the symptoms for more than two years.”

Still, the deeper mystery of what happened in those alpine towns in the 1980s is unsolved. By the time federal investigators arrived, the incidence of new cases was slowing; what initially looked like an epidemic ended as inscrutably as it began. Levine and other NIH researchers have started checking up on 287 patients who were part of that original outbreak. In 1984 no standard definition of CFS existed, and follow-up has shown that less than half fit the current definition of the malady.

Of the dozen or so teachers who regularly gathered in the makeshift faculty lounge at Truckee High, 11 developed symptoms of CFS. If researchers are right about the role of the stress-response system, the cluster might have occurred because the teachers were exposed to the same intense physical or psychological stress, or to several stresses, and those with a predisposition to CFS then fell ill.

But no toxic chemicals were ever detected in the ventilation system or water pipes or anywhere else. Records show no particularly bad cold or flu making the rounds that year, nor any obvious psychological trauma the teachers had in common. And the many other people in the area who got sick around the same time had never been inside the school or had contact with those teachers.

Whatever clutch of factors led to the outbreak seems to have dispersed. Today Peterson still gets new cases in his CFS clinic, but the numbers are now close to averages seen in similar practices. Three years ago epidemiologist Bill Reeves, who’s in charge of chronic fatigue research at the CDC, took his investigation to the heartland and captured what is considered to be the most accurate picture of how frequently CFS occurs in the United States today. He and his team studied a cross section of people in Wichita, Kansas, a city whose demographics provide a snapshot of the nation as a whole. There were 183 cases of CFS for every 100,000 people. The illness was even more common among women: 303 cases per 100,000–almost six times the rate for men.

For Irene Baker, those first six months starting in the spring of 1985 were as bad as anything she’s ever experienced–the headaches, the moments of confusion or forgetfulness, the oppressive fatigue. But one day, like melting snow, the symptoms began to recede. A year after she became ill, she was able to return to work part-time. Today she’s teaching full days–a rambunctious class of 32 fifth graders.

“I’m my old self again,” she says. “I’m back to being able to do everything I want. And I have to say, I consider myself very, very lucky.”

Too Tired for Words?

Everyone gets worn out now and then. Even a week or two at a low ebb is nothing to worry about, especially if you’re busy or under stress. But if the lethargy lasts longer, talk to your doctor, since abiding exhaustion can be a sign of trouble. Problems to consider first: sleep disorders, mononucleosis, hepatitis, heart trouble, depression, and eating disorders, all of which sap energy. Only when other explanations are ruled out is chronic fatigue syndrome a likely suspect.

Unfortunately, there’s no simple blood test or other easy way to diagnose CFS, so experts are left with comparing your complaints to a laundry list of common symptoms. The hallmark is fatigue that has lasted at least six months. In addition, experts look for four or more of the following:

  • Problems with memory or concentration
  • Sore throat
  • Tender lymph nodes in an armpit or the neck
  • Muscle pain
  • Joint pain
  • Unusual headaches
  • Waking up tired
  • Exhaustion after physical activity

Writer: Peter Jaret, Health, May 99, Vol.13, p.114, 9p

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