is National Chronic Fatigue
Syndrome Awareness Month
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We all know what it's like to
have a really bad case of the flu.
Think, then, what it also must feel like to have severe muscle
and joint pain, headaches and sore lymph nodes. On top of that, you
can't concentrate, and you're tired, really tired, most of the time
a sense of exhaustion that just won't go away, no matter how
long you sleep.
Some half a million Americans don't have to imagine it. They feel
that way day after day, year after year.
Called chronic fatigue syndrome or CFS, this illness comes with
a laundry list of symptoms and complaints, but an absence of absolute
answers. Cause? Unknown. Diagnosis? Uncertain. Treatment options?
But the effects? Very real.
"I missed an entire quarter of my junior year [in high school]
because my mom couldn't get me out of bed in the morning," says
27-year-old Jessica Klein, of Sterling, Va. She dropped out of college
for a while for the same reason, and earlier this year she had to
quit her job as a self-described "computer guru."
"They wanted me to stay for 8 ½ hours a day, plus a 45-minute
commute, and I couldn't stay awake that long," says Klein, who has
lived with this condition since she was 8 years old, although it
wasn't diagnosed as chronic fatigue syndrome until recently.
"It's not a normal tired," she says. "You run into a wall. You
can't keep your head up or your eyes open." Klein describes it as
"having bricks tied to your arms and legs, to your eyelids and the
back of your head."
Sometimes, she says, she's afraid to fall asleep because she might
not be able to get up in time for appointments.
The crushing tiredness apparently is universal, but other symptoms
are not the same for everyone, says Leonard Jason, director of the
Center for Community Research at DePaul University in Chicago and
a member of the federal government's CFS Advisory Committee.
Some sufferers feel faint when they stand up, others have feverish
symptoms, and for some, inflammation is the hallmark.
"When you look at a group of people with CFS, you never find 100
percent of the people with the same thing," Jason says.
Their illness takes different paths to the same endpoint: "They
feel very, very sick, extremely sick, extremely debilitated," he
If the constant fatigue lasts for six months or more, with at least
four other symptoms such as concentration problems, muscle
pain, sore lymph nodes or disturbed sleep then a diagnosis
of CFS is justified, Jason explains.
Still, no specific diagnostic tests for CFS are available, according
to the U.S. Centers for Disease Control and Prevention, leaving
doctors to diagnose by exclusion, meaning they resort to ruling
out other possibilities.
Medical treatment generally focuses on relieving whatever a person's
specific symptoms might be, but it also can include such options
as exercise, lifestyle changes and behavioral therapy. Support groups
For many, though, just getting diagnosed correctly is a struggle.
As Klein explains, "When we come in and start complaining, [doctors]
basically think we're nuts, and that makes me mad."
Part of the problem may lie with the name chronic fatigue
syndrome which many CFS experts say is inadequate and disparaging.
"Over 90 percent of the patient community hates that name," says
Jason, adding that it prompts many doctors to "roll their eyes and
not take it seriously."
"A name that sounds kind of technical or medical will have people
feeling that the person is sicker than if the name is a little bit
trivializing like saying you have 'chronic cough syndrome'
rather than bronchitis or emphysema," says Jason, who has published
research on the effect of the name "chronic fatigue syndrome."
However, CFS might not be the official designation for this illness
A group of scientists and patients has been working for the past
two years to come up with a new name and expects to present it to
the federal government's CFS Advisory Committee in the next few
months. With committee approval, it would go on to U.S. Secretary
of Health and Human Services Tommy Thompson, who can make it official,
The new name neuroendocrineimmune dysfunction syndrome,
or NDS better represents the illness, Jason says.
"The term is broad enough to encompass the most commonly reported
symptoms [which] are associated with or referable to the neurologic,
neuroendocrine and immunologic systems," states a paper prepared
by the group proposing the name change.
Continued use of the term "syndrome" recognizes that it's a "collection
of signs and symptoms that in their totality define this illness,"
the group says.
And, the group adds, that also should help NDS to gain acceptance
by the medical community.
"If you feel you have a medical illness and are looking for strategies
to help," Jason says, "you don't want to be referred to a psychiatrist."
March is National Chronic Fatigue Syndrome Awareness Month.
To learn more about chronic fatigue syndrome, visit the Mayo
Clinic or the U.S. Centers
for Disease Control and Prevention Web site, which includes
group directory among its listings.
Reference Source 101