Correction Appended
For decades, people suffering from chronic fatigue syndrome have
struggled to convince doctors, employers, friends and even family members that
they were not imagining their debilitating symptoms. Skeptics called the
illness "yuppie flu" and "shirker syndrome."
But the syndrome is now finally gaining some official respect. The
Centers
for Disease Control and Prevention, which in 1999 acknowledged that it had
diverted millions of dollars allocated by Congress for chronic fatigue syndrome
research to other programs, has released studies that linked the condition to
genetic mutations and abnormalities in gene expression involved in key
physiological processes. The centers have also sponsored a $6 million public
awareness campaign about the illness. And last month, the C.D.C. released
survey data suggesting that the prevalence of the syndrome is far higher than
previously thought, although these findings have stirred controversy among
patients and scientists. Some scientists and many patients remain highly
critical of the C.D.C.'s record on chronic fatigue
syndrome, or C.F.S. But nearly everyone now agrees that the syndrome is real.
"People with C.F.S. are as sick and
as functionally impaired as someone with AIDS, with breast cancer,
with chronic obstructive pulmonary disease," said Dr.
William Reeves, the lead expert on the illness at the C.D.C., who helped expose
the centers' misuse of chronic fatigue financing.
Chronic fatigue syndrome was first identified as a distinct entity
in the 1980s. (A virtually identical illness had been identified in Britain
three decades earlier and called myalgic encephalomyelitis.) The illness causes
overwhelming fatigue, sleep disorders and
other severe symptoms and afflicts more women than men. No consistent
biomarkers have been identified and no treatments have been approved for
addressing the underlying causes, although some medications provide symptomatic
relief.
Patients say the word "fatigue" does
not begin to describe their condition. Donna Flowers of Los Gatos, Calif., a
physical therapist and former professional figure skater, said the profound exhaustion was
unlike anything she had ever experienced.
"I slept for 12 to 14 hours a day but
still felt sleep-deprived," said Ms. Flowers, 51, who fell ill several years
ago after a bout of mononucleosis. "I had what we
call 'brain fog.' I couldn't think straight, and I could barely read. I
couldn't get the energy to go out of the door. I thought I was doomed. I wanted
to die."
Studies have shown that people with the syndrome experience
abnormalities in the central and autonomic nervous systems, the immune system,
cognitive functions, the stress response pathways and other major biological
functions. Researchers believe the illness will ultimately prove to have
multiple causes, including genetic predisposition and exposure to microbial
agents, toxins and other physical and emotional traumas. Studies have linked
the onset of chronic fatigue syndrome with an acute bout of Lyme disease, Q
fever, Ross River virus, parvovirus, mononucleosis and other infectious
diseases.
"It's unlikely that this big cluster
of people who fit the symptoms all have the same triggers," said Kimberly McCleary, president of the Chronic Fatigue and
Immune Dysfunction Syndrome Association of America, the advocacy group in
charge of the C.D.C.-sponsored awareness campaign. "You're looking not just at apples and
oranges but pineapples, hot dogs and skateboards, too."
Under the most widely used case definition, a diagnosis of chronic
fatigue syndrome requires six months of unexplained fatigue as well as four of
eight other persistent symptoms: impaired memory and concentration, sore
throat, tender lymph nodes, muscle pain, joint pain, headaches, disturbed
sleeping patterns and post-exercise malaise.
The broadness of the definition has led to varying estimates of
the syndrome's prevalence. Based on previous surveys, the
C.D.C. has estimated that more than a million Americans have the illness.
Last month, however, the disease control centers reported that a
randomized telephone survey in Georgia, using a less restrictive methodology to
identify cases, found that about 1 in 40 adults ages 18 to 59 met the
diagnostic criteria - an estimate 6 to 10 times higher
than previously reported rates.
However, many patients and researchers fear that the expanded
prevalence rate could complicate the search for consistent findings across
patient cohorts. These critics say the new figures are greatly inflated and
include many people who are likely to be suffering not from chronic fatigue
syndrome but from psychiatric illnesses.
"There are many, many conditions that
are
psychological in nature that share symptoms with this illness but do not share
much of the underlying biology," said John Herd, 55, a
former medical illustrator and a C.F.S. patient for two decades.
Researchers and patient advocates have faulted other aspects of
the C.D.C.'s research. Dr. Jonathan Kerr, a microbiologist and
chronic fatigue expert at St. George's University of London, said the C.D.C.'s
gene expression findings last year were "rather meaningless" because they were
not confirmed through more advanced laboratory techniques. Kristin Loomis, executive
director of the HHV-6 Foundation, a research advocacy group for a form of herpes virus
that has been linked to C.F.S., said studying subsets of patients with similar
profiles was more likely to generate useful findings than Dr. Reeves's population-based approach.
Dr. Reeves responded that understanding of the disease and of some
newer research technologies is still in its infancy, so methodological
disagreements were to be expected. He defended the population-based approach as
necessary for obtaining a broad picture and replicable results. "To me, this is the usual scientific dialogue," he said.
Dr. Jose G. Montoya, a Stanford infectious disease specialist
pursuing the kind of research favored by Ms. Loomis, caused a buzz last
December when he reported remarkable improvement in 9 out of 12 patients given
a powerful antiviral medication, valganciclovir. Dr. Montoya has just begun a
randomized controlled trial of the drug, which is approved for other uses.
Dr. Montoya said some cases of the syndrome were caused when an
acute infection set off a recurrence of latent infections of Epstein Barr virus
and HHV-6, two pathogens that most people are exposed to in childhood. Ms.
Flowers, the former figure skater, had high levels of antibodies to both
viruses and was one of Dr. Montoya's initial C.F.S.
patients.
Six months after starting treatment, Ms. Flowers said, she was
able to go snowboarding and take yoga and ballet classes. "Now I pace myself, but I'm probably 75 percent of normal," she said.
Many patients point to another problem with chronic fatigue
syndrome: the name itself, which they say trivializes their condition and has
discouraged researchers, drug companies and government agencies from taking it
seriously. Many patients prefer the older British term, myalgic
encephalomyelitis, which means "muscle pain with
inflammation of the brain and spinal chord," or a more generic term, myalgic
encephalopathy.
"You can change people's attributions
of the seriousness of the illness if you have a more medical-sounding name," said Dr. Leonard Jason, a professor of community psychology at DePaul University in Chicago.
Correction: July 20, 2007
An article in Science Times on Tuesday about new research and
financing for chronic fatigue syndrome misstated the given name of an
infectious disease specialist at
