Understanding
Chronic Fatigue Syndrome
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.
Chronic Fatigue Syndrome (CFS) or Chronic Fatigue Immune
Dysfunction is a disorder characterized by prolonged fatigue and
weariness that is not relieved by rest. The onset of CFS lasts at least
6 months and includes symptoms that may be similar to viruses, such as
muscle aches, headaches, sore throat, and fever. Chronic fatigue also
can cause forgetfulness, confusion, and depression.
In addition to following a physician's recommendations for diet,
exercise, rest, and medication, people with CFS also can learn to manage
their daily lives with the help of an occupational therapist.
HOW DOES Chronic Fatigue
Syndrome BEGIN?
For many people, Chronic Fatigue
Syndrome 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, it
develops more gradually, with no clear illness or other event
starting it.
WHAT ARE THE SYMPTOMS?
Unlike influenza symptoms, which usually go away in
a few days or weeks, the symptoms of Chronic Fatigue
Syndrome 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
WHO GETS CFS?
Chronic Fatigue
Syndrome was once called "yuppie flu"
because those who sought help for and caused scientific interest in
the illness during 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, Chronic
Fatigue Syndrome
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.
HOW MANY PEOPLE HAVE CFS?
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.
WHAT CAUSES CFS?
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.
HOW IS CFS DIAGNOSED?
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).
THE CFS CASE DEFINITION
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.
HOW CAN
ONE COPE WITH AND MANAGE THE ILLNESS?
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).
CONCLUSION
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.
MORE INFORMATION
National Library of Medicine
MedlinePlus
8600 Rockville Pike
Bethesda, MD 20894
1-888-FIND-NLM (1-888-346-3656) or 301-594-5983
http://medlineplus.gov
Agency for Healthcare Research and Quality
Office of Communications and Knowledge Transfer
4540 Gaither Road, Suite 2000
Rockville, MD 20850
301-427-136
http://www.ahrq.gov
Centers for Disease Control and Prevention
1600 Clifton Road, NE
Atlanta, GA 30333
1-800-311-3435 or 404-639-3534
http://www.cdc.gov
Disability Benefits
Clearinghouse on Disability Information
Office of Special Education and Rehab Services
U.S. Department of Education
330 C Street, SW
Washington, DC 20202-2524
202-205-8241
Social Security Administration
Call your local social security office or
1-800-772-1213
http://www.ssa.gov
National Organization of Social Security Claimants’ Representatives
(lawyer referral)
560 Sylvan Avenue
Englewood Cliffs, NJ 07632
1-800-431-2804
http://www.nosscr.org
SOURCE:
http://www.niaid.nih.gov/factsheets/cfs.htm
