Excerpt from washingtonpost.com
Chronic fatigue syndrome is a “serious, debilitating” condition with a cluster of clear physical symptoms — not a psychological illness — a panel of experts reported Tuesday as it called for more research into a disease that may affect as many as 2.5 million Americans.
“We
just needed to put to rest, once and for all, the idea that this is
just psychosomatic or that people were making this up, or that they were
just lazy,” said Ellen Wright Clayton, a professor of pediatrics and
law at Vanderbilt University, who chaired the committee of the Institute of Medicine, the health arm of the National Academy of Sciences.
Although
the cause of the disorder is still unknown, the panel established three
critical symptoms for the condition (also known as myalgic encephalomyelitis):
- A
sharp reduction in the ability to engage in pre-illness activity levels
that lasts for more than six months and is accompanied by deep fatigue
that only recently developed. - Worsening of symptoms after any type of exertion, including “physical, cognitive or emotional stress.”
- Sleep that doesn’t refresh the sufferer.
In
addition, the committee said, true chronic fatigue syndrome also
includes either cognitive impairment or the inability to remain upright
with symptoms that improve when the person with the condition lies down,
known as “orthostatic intolerance.”
The panel acknowledged what
people with chronic fatigue syndrome have long complained about: They
struggle, sometimes for years, before finding a health-care provider who
diagnoses a disorder that often devastates their lives. Sixty-seven
percent to 77 percent reported in surveys that it took longer than a
year to receive a diagnosis, and about 29 percent said it took longer
than five years. The vast majority of people with the disorder remain
undiagnosed, the panel said, estimating that between 836,000 and 2.5
million Americans have it.
“Seeking and receiving a diagnosis can
be a frustrating process for several reasons, including skepticism of
health care providers about the serious nature of [chronic fatigue
syndrome] and the misconception that it is a psychogenic illness or even
a figment of the patient’s imagination,” the panel wrote. Less than a
third of medical schools include the condition in their curricula and
only 40 percent of medical textbooks contain information on it, the
experts said.
Christine Williams, who has the illness herself and is vice-chair of the board of directors for the advocacy group Solve ME/CFS Initiative, welcomed the IOM report.
“I
have been sick for six-and-a-half-years, and this is definitely the
most encouraging thing that I have seen,” she said. Williams praised the
IOM for setting forth a set of clearly understandable diagnostic
criteria, including the hallmark symptom “post-exertional malaise.”
Williams
predicted that the IOM panel’s proposed new name for the illness —
“systemic exertion intolerance disease”–would be widely debated by
patients’ groups. But she added that the IOM “moved in the right
direction by getting away from ‘chronic fatigue syndrome’,” which she
said trivialized a serious disease.
Williams, who spent three
decades working as a health policy expert in the federal government,
said she hopes the report sparks additional research into new treatments
for the illness.
The cause of chronic fatigue syndrome remains
unknown, but symptoms may be triggered by an infection or “immunization,
anesthetics, physical trauma, exposure to environmental pollutants,
chemicals and heavy metals and, rarely, blood transfusions,” the panel
reported. Clayton said mononucleosis is “a major trigger” of chronic
fatigue syndrome among adolescents, but little is known about causes
beyond that.
Treatments can include drugs
such as anti-depressants and sleeping pills; gentle exercise and
psychological counseling; and lifestyle changes such as limiting stress,
caffeine, nicotine and alcohol.
Clayton also emphasized that
many people with chronic fatigue syndrome also have other medical
problems, which can complicate diagnosis and treatment.
“Lots of
adults have more than one thing going on,” she said. “If they meet these
criteria, they have this disorder. They can have something else as
well, which is not uncommon in medicine.”
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