Chapter 1
A Mystery Disease

In 1869, American neurologist Dr. George M. Beard identified a mysterious condition in his patients that had no clear cause, but which left its victims suffering from chronic, extreme fatigue along with a host of other symptoms, including headaches and generalized pain. Beard was unable to find an organic—that is, physical—cause of the condition, so he concluded that it was a psychological disorder causing physical symptoms. In particular, Beard felt the disease had to do with overly aggravated nerves, so he named it "neurasthenia."

Beard continued to study and write about this disease throughout his career, publishing a book on it in 1881 entitled American Nervousness: Its Causes and Consequences. In it, Beard mused on what he considered to be the cause of neurasthenia, which he believed was a new disease, one that was somehow related to the complications of life in the late nineteenth century: "The modern differ from the ancient civilizations mainly in these five elements—steam power, the periodical press [newpapers], the telegraph, the sciences, and the mental activity of women. When civilization, plus these five factors, invades any nation, it must carry nervousness and nervous diseases along with it."³ To support his argument, Beard pointed out that the vast majority of people being diagnosed with neurasthenia belonged to the higher, more educated classes—people who were expected to use their minds more in their daily lives. Beard's treatment for his patients included bed rest—either at home or in a hospital if necessary—nourishing food, and emotional support from family and employers.

Over the years, attention to neurasthenia waned for various reasons. Certainly, as the twentieth century progressed, for instance, the notion that "the mental activity of women" could be so unnatural as to lead to illness came to be seen as unlikely. And while a diagnosis of neurasthenia was somewhat a status symbol in Beard's time, since it identified the patient as a member of a higher social class, neurasthenia eventually became thought of more as another form of simple hysteria, a condition that carried with it a much stronger stigma. Primarily, however, the lack of any proven organic cause kept physicians from concentrating much attention on neurasthenia. Moreover, since psychiatry was becoming accepted as a legitimate field of medicine, a whole new group of professionals was considered available to focus on what was viewed as a psychological problem.

Today, however, many experts believe that Beard was the first doctor to identify a physical illness that is now called chronic fatigue syndrome, although they would disagree with Beard's ideas regarding the causes of the disease. These experts also speculate that Beard actually identified an illness that has been around for centuries, pointing to earlier references to diseases, such as muscular rheumatism in the 1680s, that had similar symptoms. Experts also believe that in the years following Beard's initial discovery, many names were given to conditions that were all in fact the same thing: chronic fatigue syndrome.

Outbreaks

While much controversy remains over when CFS first appeared, most researchers now agree that the disease—in some form—can at least be traced back to the 1930s, starting with an outbreak in a Los Angeles hospital in 1934, in which 198 health care workers became ill. Since these individuals displayed symptoms directly following an epidemic of the disease poliomyelitis, they were initially diagnosed with polio. However, this diagnosis was proved incorrect when the patients did not develop paralysis, and none died, a common outcome for polio victims at that time. Also, closer study revealed that the patients had symptoms that polio sufferers did not have. For example, these patients experienced chronic fatigue that was worsened by physical exertion; they also had headaches, intestinal problems, impaired memory, and extreme muscle weakness, among a variety of other symptoms. Mystified, investigators named the disease "neuromyasthenia," without reaching a consensus as to what was causing the symptoms in the infected individuals.

Over the years, other similarly confounding outbreaks occurred throughout the United States and in certain European countries, though slight differences in symptoms kept anyone from being able to forge a definitive link between outbreaks. In 1948, for example, over one thousand people in Iceland became ill with what was labeled "Iceland Disease." Again, the theory was put forward that this was some form of polio. And again, patients did not become paralyzed or die. Outbreaks followed in Austria in 1949, New York State in 1950, England in 1953, and Washington, D.C., in 1953.

The outbreak that gained major attention, however, occurred at the Royal Free Hospital in London in 1955. First, one physician and one nurse were admitted to the hospital with similar symptoms: fatigue, malaise, headaches, and sore throats. Other reported symptoms included muscle weakness, abdominal pain, diarrhea, dizziness, and bladder problems. Over the next few weeks, increasing numbers of hospital personnel developed symptoms, until eventually 292 staff members in total were ill. The hospital had to be shut down for four months. While various minor abnormalities were detected with full medical examinations, investigators were still unable to find a specific cause. And strangely, while the disease did seem to be spreading (since all of these people who contracted it worked together in one place), only twelve of the hospital's patients became sick with the bizarre symptoms. This is inconsistent with a typical infectious disease outbreak, in which a large number of all people in the location become sick, regardless of what role they play in that location.

The outbreak was so puzzling that researchers who later examined the patients' records concluded that there actually had not been an organic disease at work, but instead the symptoms were attributable to some kind of mass hysteria among the hospital workers. Years later, doctors looked back on the Royal Free disease as the origin of the modern debate as to whether CFS is an organic disease, caused by physical and biological factors, or a psychosomatic one with psychological causes such as anxiety or depression.

Yuppie Victims

The question of whether the illness that would one day be called CFS was organic or psychosomatic was brought back into the spotlight in 1985 when people living in the small resort town of Incline Village near Lake Tahoe, Nevada, became sick. There, perfectly healthy individuals were suddenly bedridden with severe fatigue and other symptoms resembling a serious case of influenza. But the victims failed to improve; after months had passed, they remained just as sick as ever. And others grew ill as well, until nearly two hundred people were afflicted. Drs. Daniel Peterson and Paul Cheney, the local physicians in Incline Village, grew frustrated at their inability to make a diagnosis. Although the patients were feeling severely debilitated by their symptoms, Peterson and Cheney had difficulty finding any serious abnormalities common to all patients, as would be expected if a single contagious disease was at work. In fact, most of the patients' lab results initially appeared the same as they would for a normal, healthy person.

Finally, Peterson and Cheney stumbled on what they believed was a major clue: A large majority of their patients had elevated levels of a virus called the Epstein-Barr virus in their blood. The doctors knew that this virus could cause mononucleosis, a disease characterized by many of the symptoms they saw in their patients. But mononucleosis is not typically as debilitating as the disease with which they were dealing, and it is also only rarely chronic. Peterson and Cheney began to wonder if they were facing an outbreak of a new infectious disease that was somehow connected to the Epstein-Barr virus.

The doctors contacted the Centers for Disease Control and Prevention (CDC), an agency of the federal government that is responsible for identifying and classifying infectious diseases. In response, the CDC sent two of its epidemiologists (doctors who specialize in uncovering causes and connections of diseases) to Lake Tahoe in September 1985. In the end, however, the CDC reported that there was not enough evidence to prove that the Epstein-Barr virus was behind the illness that was affecting so many members of the Incline Village community.

Peterson and Cheney, while aware that the evidence was not supporting their theory, were still disappointed that after this one visit the CDC had closed its investigation. In fact, not only did it discount the Epstein-Barr theory, but the CDC implied that the disease was psychosomatic, since no organic cause could be found.

Lending credence to the notion that the disease was psychosomatic was the fact that so many of the victims were young, upwardly mobile professionals (nicknamed "yuppies" by the mass media), a social class supposedly prone to self-absorption and self-indulgence. Even some who suffered from CFS found the socioeconomic similarities among victims striking. As Hillary Johnson, a journalist and CFS patient herself, put it in a 1987 article for Rolling Stone magazine: "So far, most [of the disease's] victims have been between twenty-five and forty-five, with the majority in their thirties.… [T]he disease appears to attack only successful, educated professionals while sparing blue-collar workers and the poor. That a disease could mark not only a generation but a class is remarkable."⁴

Despite the pervasive idea that this illness was reserved for a certain group of people, many believed that its reach would expand. Johnson herself went on to predict in her Rolling Stone article that the supposition that only a certain demographic group was at risk for the disease would soon be proven wrong.

A Breakthrough Is Made

In fact, an outbreak that proved Johnson's point had already occurred. Dr. David S. Bell, a pediatrician in Lyndonville, New York, in 1985, began seeing patients with a puzzling set of symptoms. The children complained of fatigue, sore throats, stomach pain, and swollen and tender lymph nodes. They appeared to have the flu, but it became clear that it was something more when time passed and the children failed to improve. Meanwhile, more children—and soon adults—began to experience the same symptoms. Bell attempted to get the state health department to show some interest, but he received no assistance from that agency. So he continued his own efforts to pinpoint a cause and arrive at a diagnosis.

Bell recalls having noticed a piece in the newspaper about the epidemic in Lake Tahoe. But while the Lake Tahoe patients' symptoms shared similarities with his patients' symptoms, Bell quickly dismissed the possibility of a connection between the epidemics when he read that the Lake Tahoe epidemic was called "Yuppie Flu" and that it was believed to be a form of hypochondria. He also glimpsed something about two doctors from the area talking about the role of the Epstein-Barr virus. "I knew that whatever we were studying had nothing to do with Yuppies,"⁵ Bell later told Newsweek magazine. After all, most of his patients were children. Also, a good number tested negative for the Epstein-Barr virus, so there was no obvious connection there either.

Bell was seeing more patients with similar symptoms more regularly and was coming no closer to a diagnosis. By 1987, more than two hundred people in Lyndonville were ill, and Bell had no diagnosis for any of them. But reports started to come in of other patients experiencing similar symptoms in various areas of the country, and the picture finally became clearer when one patient from California explained to Bell that she had previously been told her illness was something called "chronic Epstein-Barr virus syndrome." (This name was being used by doctors even after the Epstein-Barr theory was discounted, since the symptoms of the disease resembled a chronic mononucleosis.) Bell recalled the article about Lake Tahoe, the mention of Epstein-Barr, and made the connection: He was dealing with the same disease that Peterson and Cheney were seeing.

Bell quickly joined forces with Peterson and Cheney, and together they—along with other doctors who were beginning to become aware of and concerned about this new disease—struggled to get the American medical community to focus attention on the syndrome and recognize that an organic agent was at work, even if it was an elusive one to find.

Meanwhile, the popular media, which had generally been promoting the idea that CFS was psychosomatic, began to reverse itself. Articles appeared in various high-circulation publications, including Johnson's in Rolling Stone, arguing for the existence of a genuine organic origin for the disease. Still, the mystery remained of what that origin was. There were lots of theories and growing concern, but there was simply no concrete answer.

Finally, the CDC was convinced that there was in fact one recognizable disease at work, even though no one could identify the cause. In 1988, the agency gave this mystery condition a name, "chronic fatigue syndrome," and created a general case definition. The definition stated that a patient receiving the CFS diagnosis must have had persistent fatigue for at least six months that could not be attributed to any other cause and must have at least eight of a very broad list of symptoms, including sleep disturbances and swollen or tender lymph nodes.

CFS Today

Over the next few years, CFS caught the attention of more members of the medical community. One researcher was quoted in Newsweek as calling CFS "the disease of the '90s"⁶ because it seemed to be coming to the forefront of the public consciousness much as AIDS had captured the public's attention in the 1980s. And in a November 19, 1990, article, Wall Street Journal reporter Ron Winslow noted that the CDC was about to launch a study of CFS, writing that the study "represents the U.S. government's first major acknowledgment of the illness, a move that is long overdue in the view of many patients and researchers."⁷

As interest in CFS grew and more was learned about the disease, patients and doctors argued in favor of a more accurate and precise description from the CDC, one that reflected the emerging complexities of the disease. This revised definition was finally released by the CDC in 1994, and it remains the current basis for diagnosis. In order to receive a CFS diagnosis, a patient must have developed persistent and chronic fatigue that is not the direct result of exertion and is not helped by rest. The fatigue must also have produced a change in the patient's productivity levels in all major life spheres: work (or school, in the case of children), social, and personal. Along with this unrelenting fatigue, the CDC's criteria list eight other symptoms, stating that at least four of them need to be present along with fatigue for at least six months, but not be present before the onset of fatigue.

In spite of this more detailed case definition of CFS, there is no definite figure available of the current prevalence of CFS, for a variety of reasons. As Katrina Berne explains in Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses: The Comprehensive Guide: "Problems estimating the true prevalence of CFS include differing criteria; shifting case definitions; exclusion of children, the elderly, and those in remission; varying methods of collecting data; misdiagnosis with other disorders; and different prevalence rates in specific groups of individuals or geographic locations."⁸ But various studies place the estimated number of individuals worldwide with the disease in the low millions, and experts say this number is continuing to grow.

As Johnson predicted, CFS has been found across a wider range of ages and social classes than initially thought. When questioned about why so many of his patients were well-to-do people in their thirties and forties, Cheney pointed to the structure of the nation's health care system:

Only people from higher socioeconomic groups, and highly educated people, have the ability to get through the roadblocks that exist to this diagnosis. It requires persistence, an ability to challenge medical authority.… I've received hundreds of letters from all over the country, and interestingly, the majority of those letters come from lower socioeconomic classes.… People without money write me because it's free. I think there are large numbers of people with this who are trapped. They're trapped by money problems, and by the inability to deal with the medical establishment as it perceives this disease.⁹

There have been no attempts to determine how many children have been stricken, as Berne mentions, but there has been ample evidence of the disease occurring in young people. Still, the disease is seen predominantly in people between the ages of twenty-five and fifty. Interestingly, it has been noted that while both genders are affected roughly equally in children, adult women are diagnosed at somewhere between twice and three times the rate of adult men, a disparity that doctors have not yet been able to explain.

Much has been learned about CFS in recent decades, but many questions remain. It has still not been proven whether CFS is a new disease or an old disease with a new name. But after years of unexplained symptoms and mysterious outbreaks, there is now at least a name and a definition for the condition that confronts millions of people today. And the official acknowledgment and identification of the syndrome is an important step as doctors attempt to make a diagnosis.