Chronic Fatigue Syndrome
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We all get tired. Many of us have felt depressed at times. But the
mystery known as chronic fatigue syndrome (CFS) is not like the normal ups
and downs we experience in everyday life. The early sign of this illness
is a strong and noticeable fatigue that comes on suddenly and often comes
and goes or never stops. You sometimes feel too tired to do normal
activities or are easily exhausted with no apparent reason. Unlike the
mind fog of a serious hangover, to which researchers have compared CFS,
the profound weakness of CFS does not go away with a few good nights of
sleep. Instead, it slyly steals your energy and vigor over months and
sometimes years.
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For many people, CFS can begin after a bout with a minor illness such as a cold,
or an intestinal bug. Often, people say that their illnesses started during
a period of high stress. In others, CFS develops more gradually, with no clear
illness or other event starting it.
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Unlike influenza symptoms, which usually go away in a few days or weeks, CFS
symptoms either hang on or come and go frequently for more than 6 months. Symptoms
can include
- Headache
- Tender lymph nodes
- Fatigue and weakness
- Muscle and joint aches
- Inability to concentrate
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CFS was once called "yuppie flu" because those who sought help for and
caused scientific interest in CFS in the early 1980s were mainly
well-educated, well-off women in their 30s and 40s. Since then, doctors
have seen the syndrome in people of all ages and social and economic
classes from several, mostly English-speaking, countries around the world.
Similar illnesses, known by different names, date back at least to the
late 1800s.
Still, for unknown reasons, CFS is diagnosed two to four times more
often in women than in men. In addition, some members of the medical
community and the public do not know about or are skeptical of the
syndrome.
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Because there is no specific laboratory test or clinical sign for CFS,
no one knows how many people are affected by this illness. The Centers for
Disease Control and Prevention (CDC) estimates, however, that as many as
500,000 people in the United States have CFS or a CFS-like condition.
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While no one knows what causes CFS, for more than a century, doctors
have reported seeing illnesses similar to it. In the 1860s, Dr. George
Beard named a similar or identical syndrome "neurasthenia" because he
thought it was a nervous disorder with weakness and fatigue.
In the mid-1980s, health experts labeled the illness "chronic EBV"
infection when laboratory clues led scientists to wonder whether the
Epstein-Barr virus (EBV), one of the causes of infectious mononucleosis,
might be causing this group of symptoms. Evidence soon cast doubt on this
theory.
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Health care providers find it difficult to diagnose CFS because it has
the same symptoms as many other diseases. When talking with and examining
you, your health care provider must first rule out diseases that have
similar symptoms. In follow-up visits, you and your provider need to watch
for any new cues or symptoms that might show that the problem is something
other than CFS.
When other diseases are ruled out and if your illness meets other
criteria as well, your health care provider can diagnose you with CFS (see
The CFS Case Definition).
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Scientific studies on EBV sparked new interest in the syndrome among
medical researchers. They realized they needed a standard way to describe
CFS so they could more easily compare research results.
In the late 1980s, CDC brought together a group of CFS experts to
tackle this problem. Based on the best information available at the time,
this group published in the March 1988 issue of the scientific journal,
Annals of Internal Medicine, symptom and physical criteria-the first case
definition-with which scientists could evaluate CFS study patients.
Not knowing the cause or a specific sign for the disease, the group
agreed to call the illness "chronic fatigue syndrome" after its primary
symptom. "Syndrome" means a group of symptoms that occur together but can
result from different causes. (Today, CFS also is known as myalgic
encephalomyelitis, postviral fatigue syndrome, and chronic fatigue and
immune dysfunction syndrome.)
After using this definition for several years, CFS researchers realized
some criteria were unclear or unnecessary. An international group of CFS
experts reviewed the criteria for CDC, which led to the first changes in
the case definition. This new definition was published in the same journal
in December 1994.
In addition to revising the CFS case criteria-which reduced the
required minimum number of symptoms to four out of a list of eight
possible symptoms-the newer report also proposed a conceptual outline for
studying the syndrome. This outline recognizes CFS as part of a range of
illnesses that have fatigue as a major symptom. Although primarily
intended for researchers, these guidelines should help health care
providers better diagnose CFS.
Despite the existence of case definitions, the causes of CFS remain
essentially unknown, and the only way to make the diagnosis is to rule out
other causes of the same symptoms. This can be particularly difficult
because many patients with CFS also have major psychiatric illnesses such
as depression, and some of these conditions and the medicines used to
treat them can cause some of the CFS symptoms.
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Learning how to manage your fatigue, in spite of your symptoms, may help you
improve the level at which you can function as well as your quality of life.
A rehabilitation medicine specialist can evaluate you and teach you how to plan
activities to take advantage of times when you usually feel better.
The lack of any proven effective treatment can be frustrating to both
you and your health care providers. Scientists are currently conducting
studies to evaluate such treatments as cognitive-behavioral therapy (a
psychological therapy) and graduated exercise therapy. While early results
look promising, these therapies do not work for everyone, and often induce
improvement but not cure. If you have CFS, health experts recommend that
you try to maintain good health by
- Eating a balanced diet and getting adequate rest
- Exercising regularly but without causing more fatigue
- Pacing yourself-physically, emotionally, and intellectually-because
too much stress can aggravate your symptoms
The course of CFS varies from person to person. For most people, CFS
symptoms reach a certain level and become stable early in the course of
illness and thereafter come and go. Some people get better completely, but
it is not clear how frequently this happens. Emotional support and
counseling can help you and your loved ones cope with the uncertain
outlook and the ups and downs of this illness.
Treatment
Antidepressants sometimes help to improve sleep and relieve mild, general pain
in people with CFS. Because adequate doses of an antidepressant often increase
fatigue, health care providers may have to start with a low dose and increase
it very slowly or prescribe another type of antidepressant. Some people with
CFS benefit from medicines used to treat acute anxiety as well as other nervous
system problems such as dizziness and extreme tenderness in the skin. You should
work closely with your health care provider to find a medicine, or a combination
of medicines, that works well for you and that your body can tolerate. For more
information on treatment, contact CDC (see below).
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CFS is a disease of unknown cause. Early results of new treatment
methods appear promising, but it is too soon to tell how well these
treatments will work, and for how many CFS patients. Because CFS can be a
serious illness that affects many aspects of daily living, you should
consult a qualified doctor who can evaluate you and help you manage your
illness.
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MedlinePlus (National Library of Medicine)
Agency for Healthcare Research
and Quality
Centers for Disease Control
and Prevention
Social Security Administration
National Organization of
Social Security Claimants' Representatives (lawyer referral)
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Chronic Fatigue Syndrome
