Chronic fatigue syndrome
(CFS), although first named in the 1980s, is not a new disease and
has been referred to by other names since the 1700s. Yet it
remains a controversial topic because, even as diagnoses increase,
many people (health professionals and the public alike) doubt CFS
exists or consider it a psychological ailment.
But research confirms that CFS is indeed a physical illness -
just one that's not fully understood. An estimated half a
million people in the United States have a CFS-like condition,
according to the Centers for Disease Control and Prevention
(CDC).
About CFS
The hallmark symptoms of CFS are overwhelming fatigue and
weakness that make it extremely difficult to perform routine and
daily tasks, like getting out of bed, dressing, and eating. The
fatigue does not get better with bed rest. The illness can severely
affect school, work, and leisure activities, and cause physical and
emotional symptoms that can last for months or even years.
Chronic fatigue syndrome is more common in females than males
and affects all racial and ethnic groups. CFS usually strikes
people between the ages of 20 and 40, but it also occurs in teens.
A CFS-like illness also has been determined to occur in kids
younger than 12. The actual number of children and teens affected
by CFS is unknown.
Causes
The cause of CFS is not yet known. Current research is exploring
the possibility that people with CFS may have a dysfunction of the
immune and central nervous systems. Scientists are also studying
various metabolic abnormalities and risk factors (including genetic
predisposition, age, gender, prior illness, environment, and
stress) that may affect the development and course of CFS.
Some researchers have suggested that a virus causes CFS, but
this hasn't been proved. At one time, researchers thought that
Epstein-Barr virus (EBV) played a role in the development of CFS,
but carefully done studies have not confirmed this. However, a
viral cause for CFS is still suspected because the symptoms often
mimic those of a viral infection, such as chronic infectious
mononucleosis. Researchers today are hard at work trying to prove a
possible viral link to CFS.
Other theories suggest that any of these factors may be to
blame for CFS:
- iron-poor blood (anemia)
- low blood sugar (hypoglycemia)
- environmental allergies
- a body-wide yeast infection
- psychiatric or neurological problems
- endocrine dysfunction
- hypotension (low blood pressure)
Symptoms
Because the symptoms of CFS are so vague and can vary widely
from person to person, the CDC developed a detailed case definition
in 1994 to help doctors diagnose it. According to that definition,
in order to be diagnosed with CFS a person must have both:
- severe, chronic fatigue for at least 6 months or longer that
is not alleviated by rest, with other known medical conditions
having been excluded by a doctor's diagnosis
- four or more of the following symptoms:
- forgetfulness or difficulty concentrating
- sore throat
- tender lymph nodes in the neck or armpit
- muscle pain or multi-joint pain without swelling
- headaches of a new type, pattern, or severity
- unrefreshing sleep and vague feelings of illness or
depression after exerting oneself, lasting more than 24 hours
following exertion
- tiredness that lasts longer than 24 hours
In addition, any of the above symptoms associated with the
fatigue must have occurred for at least 6 or more months in a row.
Also, continuous fatigue should have been the first noticeable
symptom of illness.
Other symptoms of CFS can include mild fever, blurry vision,
chills, night sweats, diarrhea, and fluctuations in appetite and
weight.
Diagnosis
Chronic fatigue syndrome is hard to diagnose because a single
diagnostic test does not exist and there is no identifiable cause
of the illness.
Another problem is that CFS symptoms often mimic those of other
disorders such as viral infections,
kidney disease
, cardiac disease,
depression
, and neurological illnesses. Doctors first have to make sure that
a person's fatigue and other symptoms are not caused by another
illness, a sleep disorder, or hormone problems such as
hypothyroidism.
We all get tired, depressed, and run down. But CFS is different
from normal feelings of fatigue and low energy. Symptoms of CFS
often develop suddenly and include a strong, noticeable fatigue
that comes and goes or remains for months.
When examining your child, a doctor will be looking to first
rule out diseases that appear similar to CFS, such as multiple
sclerosis and systemic
lupus
. The doctor also will take a medical history by asking you about
any concerns and symptoms you have, your past health, your
family's health, any medications your child is taking, any
allergies your child may have, and other issues. Blood and
urine tests
will be given to identify any other possible causes of illness.
Your child also will probably meet with a psychologist or
therapist who can help assess the symptoms in relation to cognitive
skills, concentration, memory, personality, and overall
psychological state. This is helpful because CFS is often seen in
people who also have depression or anxiety. In fact, because of
this, some health professionals mistake CFS for a psychiatric
condition.
In future office visits, you and the doctor should discuss
any new symptoms, which might suggest that the problem is something
other than CFS. If other diseases are ruled out and if your
child's illness meets the criteria of the case definition, a
diagnosis of CFS can be made.
Because kids and teens often feel tired for many reasons, CFS is
a potentially misused or abused diagnosis. Kids sometimes use
fatigue as an excuse to avoid school or other activities. Many
teens are overly active in a number of sports, which can cause
fatigue. For these reasons, doctors are careful when making a
diagnosis of CFS.
Treatment
Unfortunately, there is no proven or reliable cure for CFS.
However, studies have found that individuals with the best chance
for improvement are those who remain as active as possible and who
seek some degree of control over the course of their illness.
If you suspect that your child has CFS, look for a doctor who is
willing to consider the problem as a medical condition along with
psychiatric symptoms. The doctor should be supportive, concerned,
and familiar with the diagnostic process.
Although there is no hard and fast treatment for CFS, experts
say that these lifestyle changes can help:
- Regular, carefully planned exercise, which helps by providing
healing movement, increased energy, and feelings of well being.
Exercise should not be extreme - people with CFS should always
pace themselves while doing any physical activity that requires
exertion.
- Stress management and reduction techniques, which teach
strategies for taking control over certain aspects of the
illness.
- A healthy diet, which can minimize symptoms and general
discomfort. Doctors agree that people with CFS should avoid heavy
meals, alcohol, caffeine, and large quantities of junk food. Some
people find that a registered dietitian or nutritionist can
suggest menu plans to help reduce symptoms of fatigue.
- Acupuncture, massage, stretching, yoga, and tai chi have been
helpful for many people with CFS.
In addition to lifestyle changes, sessions with a licensed
therapist or counselor or involvement in a support group can help
someone with CFS. The main goal of therapy is to help people cope
with the limitations brought on by the illness, and to change
negative or unrealistic thoughts or feelings into positive,
realistic ones. It also can help kids with CFS and their families
learn to deal with academic or social problems brought on by the
illness, such as missed school, poor performance, or withdrawal
from friends and social situations.
Some people find that antidepressant medications can help ease
the symptoms. Pain medications and anti-inflammatory drugs, such as
ibuprofen, acetaminophen, or other more powerful pain medications,
are also beneficial to some individuals. Antiviral medications are
being used with some success, and scientists continue to
investigate newer and more effective drugs to combat the symptoms
of CFS. Antibiotics are not used to treat CFS.
For most people, the symptoms of CFS are most severe in the
beginning, and later they may come and go. Some people recover
completely from CFS, although it's not clear why this happens.
According to the CDC, almost 50% of CFS patients experience partial
or full recovery within 5 years after the CFS symptoms began.
Helping Your Child Cope
CFS is a misunderstood and chronic illness, and feeling well is
often a challenge. Because there is no real treatment for CFS,
emotional difficulties, such as depression, frustration, anxiety,
and helplessness, can develop.
To help your child cope with the emotional symptoms of CFS,
consider these coping tips from the American Academy of Family
Physicians (AAFP):
- Encourage your child to keep a daily diary to identify times
when he or she has the most energy and help plan activities for
these times.
- Have your doctor plan an exercise program to maintain
strength at whatever level is possible. Maintaining some level of
activity and exercise, within your child's abilities, can
help your child feel better physically and emotionally.
- Encourage your child to recognize and express feelings, such
as sadness, anger, and frustration. It's OK to grieve the
loss of energy.
- Seek support from family and friends because emotional health
is important when coping with a chronic health problem. Support
groups or counseling in your community can also be a big
help.
- If your child's memory and concentration are affected,
work on strategies to keep track of important things, such
as keeping lists and making notes.
- Allow more time for your child to do things, especially
activities that require concentration or physical exertion.
Although many people with CFS have symptoms that follow a cycle
of remission and relapse, many others do recover completely over
time. Many new and experimental treatments for CFS are available,
but you and your child should avoid any unproven treatments (such
as extreme doses of vitamin supplements or herbal cures) until
checking with your doctor.
Although CFS is a misunderstood illness, scientists continue to
provide information and hope through continued research and
clinical trials. Currently, CFS is being studied by large research
organizations such as the CDC and the National Institutes of Health
(NIH), and scientists are trying to better understand its symptoms
and causes in kids and teens.
In the meantime, finding good medical care for your child and
offering helpful coping techniques are the keys to managing
CFS.
Reviewed by:
J. Carlton Gartner Jr., MD
Date reviewed: October 2008
Note: All information is for educational purposes only. For specific medical advice,
diagnoses, and treatment, consult your doctor.
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