Chronic fatigue syndrome (CFS) is widely recognized
in adults, but it is not as well known that children and adolescents can have
the illness. CFS has been found in children as young as age five. An Australian
study reported 5.5 CFS cases per 100,000 children up to age 9 and 47.9 per
100,000 ages 10-19.1
Early practical intervention for
pediatric CFS is well within the training and ability of primary care
physicians; however, the illness can and often does present differently in
children than in adults and it can be difficult to diagnose.
There appear to be two onset
patterns of pediatric CFS: gradual, or insidious, onset of symptoms, usually in
children 5 to 12 years of age, and acute onset of symptoms, more common with
cases beginning in adolescence.
As in adult CFS, symptoms may include
sore throat, joint pain, migraines, irritable bowel syndrome, post-exertional
malaise, sleep disorders, photosensitivity and impaired concentration and
memory. Symptoms of CFS in young children most often has its onset with headache
or irritable bowel syndrome.
The cognitive disturbances in CFS can
produce reduced concentration, short-term memory loss and confusion and may be
confused with attention deficit disorder in children. These symptoms may be hard
to recognize because children do not have as much experience as adults in
judging their own cognitive abilities.
Pediatric CFS patients will often
have numerous symptoms at equally severe levels, but the symptoms will migrate.
For example, a child may complain of sore throat and headache, followed the next
day by lymph node and abdominal pain. By recording the symptoms during office
visits, an overall pattern can be established.
However, establishing a
pattern may be complicated by the fact that children sometimes have difficulty
recog-nizing changes in energy and very young children in particular are unable
to verbalize what they are experiencing. Some children with CFS do not perceive
themselves as being ill because they have no clear reference for normal
The diagnosis of CFS is entirely
clinical: a characteristic pattern of somatic symptoms (see
CDC case definition on the back of all RR
issues) dominated by unexplained fatigue limiting normal activity. Laboratory
testing should be used to exclude other possible causes for the symptoms, but by
far the most effective tool to use when CFS is suspected is an activity scale or
daily diary that measures a child’s overall normal activity levels.
child with CFS will have substantially reduced activity levels, but may appear
to others to have a normal activity level. For example, a child with CFS may be
able to participate in sporting activities on the weekend (i.e., playing in a
soccer game), giving the appearance that she is healthy. On closer examination,
however, the child with CFS who participated in the soccer game would have to
rest for the remainder of the day and usually the next day.
attendance is the most important indicator of both severity and prognosis of
pediatric CFS. If the CFS symptoms are mild, the child can make it through a
full day of school, perhaps even with gym class, but will have increased fatigue
and may need to rest often. Moderate CFS permits part-time school without gym or
sports and requires the child to get extra rest every evening.
severe forms of CFS, school attendance may not be possible, and home tutoring
should be used to maintain an appropriate grade level.
child’s activity levels on weekends and during the summer to their activity
during the school week is also important. Children often report that they feel
better in the summer, which is often considered an indication of school phobia.
However, it may actually be because fewer sustained activities are required.
Measuring activity levels helps to rule out school phobia or depression.
Depressed children do not feel overly tired and weak. A child with CFS will be
just as inactive on the weekend as during the school week or may actually
maintain less activity during unrestricted times.
In longitudinal studies,
47% of children with CFS become well; 27% to 46% improve; 12% to 29% remain
unchanged and 6% to 17% become worse on follow-up
In pediatric CFS, it is important to develop
long-term treatment plans that address all issues, including maximizing the
child’s activity levels, alleviating anxiety and maintaining grade-level school
Children with CFS who cannot attend school or have reduced
participation in school activities are missing important developmental
opportunities and should be encouraged to combine social contact with exercise
or play whenever they are physically able.
The pediatric patient’s fears
should also be addressed. Children with CFS may believe that they have AIDS or
cancer or that they are dying. They may also fear that any increased activity
level will worsen their condition, causing them to avoid social and other
activities important to their development. Putting these fears to rest can help
children better cope with their illness.
For more severe CFS patients who
cannot remain upright for more than 4 hours in a 24-hour period, it is important
that they learn
coping skills for school and social activities.
Although pharmacologic therapy may help with the symptoms of the
illness, there is no evidence it shortens the overall course of the illness.
Health care practitioners should be aware that children with CFS often have
unusual responses to medications, so low dosages should be tried first and
gradually increased as appropriate.
If the child experiences difficulty
initiating or maintaining sleep, small doses of antihistamines may help. More
severe cases might require low doses of tricylic antidepressants3.
For headache pain, a mild analgesic such as acetaminophen or ibuprofen can also
There is increasing evidence that orthostatic intolerance
(OI) plays a role in adult CFS, and this area is being studied in children.
Research shows that OI may be more common in children with CFS than in adults
with CFS. Symptoms of light-headedness and postural syncope in children can
often be managed by increasing daily water and salt intake. In adolescents,
mineral corticosteroids and beta-blockers can be effective
Fatigue, which can be associated with reduced serotonin
states, may be helped with selective serotonin re-uptake inhibitors (SSRIs) such
as fluoxetine (Prozac) and sertraline (Zoloft).
Pediatric CFS is often
mistaken for school phobia, anxiety disorder or depression. Failure to make a
proper diagnosis can lead to isolation, insecurity and family stress for the
child. Examining the child’s school attendance and activity levels, as well as
establishing a symptom pattern through office visits, can help diagnose CFS.
Validating the illness, providing symptomatic relief and encouraging
graded increases in activity are the most prudent paths to managing the
illness.3 Because many of the symptoms of CFS are present early in other disease
states, periodic diagnostic reevaluation is essential.
As in other
chronic illnesses, the physician is often called upon to act as patient
advocate, managing both medical and psychosocial issues, and providing
information and education to the patient, family and school personnel. Physician
support during all phases of pediatric CFS will allow greater compliance with
Lloyd A et al. Prevalence of chronic fatigue syndrome in an
Australian population. Med J Aust. 1990;153: 522-528.
Bell D. Chronic fatigue syndrome in children and
adolescents: a review. Focus & Opinion: Peds. 1995;1:
Lapp C. Management of chronic fatigue in
children: a practicing clinicians approach. J CFS. 1997;
Stein M. Twelve-year-old-girl with chronic
fatigue; school absence, and fluctuating symptoms. J Dev Behav
Pediatr. 1998;19: 196-201.