bout some outbreaks, yeah...
An Illness That's Hard To Live With—Or Define
LIFE & CULTUREMARCH 5, 2011
By LEONARD A. JASON
In 1990, after a bout with mononucleosis, I contracted chronic fatigue
syndrome. For month after month, I felt as if I had the worst case of
the flu, and I had little stamina to do even the most basic life
activities. I had to leave my work as a psychology professor for a
year and a half.
I was lucky to have a strong support system and an understanding work
setting—something many other patients don't have—but I discovered just
how mysterious and frustrating the illness is. I also realized how
easy it is for people to confuse the experience of everyday tiredness
with the incapacitating illness known as CFS.
Fatigue-related illnesses have periodically appeared over the past 150
years. Some have mistakenly compared CFS to what was called
neurasthenia in the late 1800s—a condition that was thought to be
caused by reading newspapers and, in the case of women, by education.
But by the early 1900s, many physicians had concluded that
neurasthenia was probably due to psychiatric conditions, and it was
Clustered outbreaks of another fatiguing illness attracted attention
in 1934 at the Los Angeles County Hospital, and then at a British
hospital in 1955. Both outbreaks involved the hospitals' medical
staffs. Some physicians believed both outbreaks might have been a
version of polio. The exact cause still remains unknown.
In the late 1950s, Dr. Melvin Ramsay in the U.K. began using the term
myalgic encephalomyelitis to describe an illness marked by muscle
fatiguability after minimal exertion and symptoms involving the
central nervous system, such as impaired memory and concentration.
Patients often experience a sudden onset, and proponents believed
there was a medical cause.
In the 1980s, in the Lake Tahoe region of Nevada, an epidemic of a
debilitating disease occurred. Infectious disease physicians at the
Centers for Disease Control later labeled the disorder chronic fatigue
syndrome. Patients thought the name belittled the seriousness of the
condition and argued that it placed too much emphasis on fatigue when
the illness is also typified by severe symptoms such as memory loss.
Some used the analogy that if bronchitis or emphysema were referred to
as "chronic cough syndrome," those illnesses would be trivialized too.
Because of my experience with chronic fatigue syndrome, I decided to
conduct my own research. In a 1999 study, my research team looked at
the effect of the condition's name on a group of medical students and
residents. We found that a more technical name is taken more
seriously. We gave case studies of patients to the trainees, described
the disease as chronic fatigue syndrome, Florence Nightingale disease
or myalgic encephalopathy to different groups, and then asked the
trainees about prognosis, illness cause and treatment. Those who were
told the condition was called myalgic encephalopathy were much more
likely to give the patient a poor prognosis and to attribute the
illness to a medical cause. Many activist groups have now begun using
other names for both their organizations and the illness, including
myalgic encephalomyelitis and neuroendocrine immune disorder.
Another challenge has been defining the disease. In 1994, the research
community began using what is called the Fukuda criteria to determine
who is afflicted. But the criteria were too vague and opened the
possibility that someone without the two core symptoms (extreme
exhaustion following physical or mental activity lasting more than 24
hours, and persistent or recurring impairment in short-term memory or
concentration) could still be defined as having chronic fatigue
In 2005, the CDC revised the Fukuda criteria in an attempt to identify
patients with more precision. My research team believes the new
criteria are still too vague and could potentially include people with
primary depression. This ambiguity over definitions has made it
difficult for researchers to pinpoint a biological cause. When
investigators compare very different samples, it is difficult, if not
impossible, to replicate findings from one lab to another. And when
consistent biological findings do not emerge, investigators might
inappropriately conclude that CFS is only a psychiatric problem.
—Mr. Jason is a professor of psychology and director of the Center for
Community Research at DePaul University.