Thanks to Marguerite for sending the following.

Chronic Fatigue Syndrome No Longer Seen as ‘Yuppie Flu’

By DAVID TULLER

Heidi Schumann for The New York Times

Donna Flowers was once debilitated by chronic fatigue but has tamed
her disease with exercise and treatment.

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 agency has also sponsored a $6 million public awareness campaign
about the illness. And last year, it 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. 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 disease control agency, who helped expose its 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, which afflicts more women than men, causes overwhelming
fatigue, sleep disorders and other severe symptoms. 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 feelings of malaise
after exertion.

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 agency reported that a randomized telephone
survey in Georgia , using a less restrictive methodology to identify
cases, found that about one in 40 adults ages 18 to 59 met the
diagnostic criteria — an estimate 6 to 10 times higher than previously
reported rates.

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 agency’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 recently completed a randomized controlled trial of the
drug, which is approved for other uses, but the findings have not been
released.

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 cord,” 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 .

Updated from an article that originally appeared in The New York Times
on July 17, 2007.
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Why didn't you post that when Rich Shewmaker and Peter Bowditch were making
fun of it?