Putting Lazy to Bed: Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says

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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Putting Lazy to Bed: Chronic fatigue syndrome is a physical disorder, not a psychological illness, panel says