Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), is
widely recognized in adults. But it is not as well known that children and adolescents
can have the illness. Recognition of CFS/ME in young people can be difficult because they
are physically, emotionally and socially different from adults.
About Pediatric CFS/ME
Although CFS affects children and adolescents in many of the same ways it affects
adults, there are some significant differences. From a clinical standpoint, one
major difference is in onset.
In adults, gradual onset occurs in up to 75% of cases. In children with CFS, most of whom
are adolescents, it's reversed, with around 75% experiencing acute onset. (Gradual
onset, however, is more common in young children.)
There is variability of the illness in symptoms, which tend to migrate. For example, a
child may experience sore throat and headache, followed the next day by lymph node pain.
There is also considerable variability in symptom severity.
In adults, there are often a few symptoms that are worse than others. In children,
certain symptoms may be worse one day, only to be replaced by other severe symptoms a few
days or weeks later. This dynamic can be further complicated by the fact that children
may have more difficulty recognizing and verbalizing their symptoms.
Dr. David Bell, a leader in the field of Pediatric CFS/ME believes:
The most striking thing about pediatric CFS is the ability of children to
adapt to their symptoms. Yet that fact makes it more difficult to detect and treat the
A teen may come home and sleep for three hours after school every day, but may not
complain of tiredness because it has become the norm. Similarly:
"young children who grow up with CFS have become accustomed to the symptoms and are able
to function despite persistent and sometimes severe discomfort."
The psychosocial aspects of the illness are another important difference for
pediatric patients. Says Peter Rowe, MD, a researcher at Johns
"One of the biggest challenges to pediatric patients results from the fact that the
illness affects them before they've truly had an opportunity to identify what their
aptitudes and strengths are in life, and to have established strong emotional
relationships with a significant other. The accountant who develops CFS as an adult knows
she was a capable, functioning contributor to society, and that the illness doesn't
define her as a person."
Misdiagnosed - Undiagnosed
CFS/ME is often misdiagnosed in children because the symptoms are not consistent. The
child will experience varying symptoms at different times of the week or month. When
the parents take their children to the doctor each time, the complete set of
symptoms experienced over time are often not pieced together.
Another reason why CFS/ME is going undiagnosed in children is because the criterion
developed by the CDC is for CFS/ME in adults. For children with CFS/ME, two types of
onset patterns have been noted. In children ages 5 - 12, a gradual onset of symptoms
is usually seen. In children 13 and older, it is more common to see an acute onset
The parents of these children often misunderstand their sick child as well. For young
children with CFS, they may not even comprehend that they are sick because they have
no knowledge of what normal and healthy feels like.
If you suspect your child has Chronic Fatigue Syndrome, he or she should be seen by a
CFS/ME specialist. General practitioners are typically not knowledgeable in dealing
with Chronic Fatigue Syndrome and if they are, they have probably dealt more with
adults than children. Visit our doctor database for help in finding a doctor who
specializes in CFS/ME treatment.
It's important to listen to your child and take their symptoms seriously. If your
child complains a lot about being fatigued, do not just assume that they are lazy
or unmotivated. If your child complains a lot about body pain, do not just attribute
it to growing pains. Regardless of age, we all need validation when we are truly ill.
What Do We Know From Research?
In spite of the paucity of research, studies have shed light on various aspects of
pediatric CFS. The main studies show the following findings:
CFS occurs in children and adolescents, though less frequently in children younger than
age 10. The age at onset of Bell's pediatric CFS patients ranges from 11-18; for Rowe
the age range is 10-21, with the average age at onset of 15. Both have seen younger CFS
patients, but not frequently. This suggests age of onset may be connected to hormonal
changes as children approach puberty, but this isn't confirmed.
Pediatric CFS has quite a variable duration, from months to many years. Although many
children get better, the illness can be more chronic than we first thought. For instance,
a 13-year follow-up study of 35 pediatric cases by Bell indicated that as many as 20%
don't recover, and of the 80% who reported a good functional outcome, only 37%
considered themselves fully recovered.
Comorbid psychiatric disorders such as anxiety and depression are not uncommon, but they
are generally mild when present and often secondary to the effect of being ill. Many kids
with CFS have no anxiety or depression, in contrast to prior views of CFS as a form
of generalized anxiety disorder or atypical depression.
There is a strong association between adolescent CFS and related circulatory disorders
that are characterized by intolerance of prolonged upright posture. Rowe reports that in
90% of untreated pediatric patients, this worsening of CFS symptoms with standing
is associated with abnormalities in the regulation of heart rate and blood pressure. The
most common of these problems is neurally mediated hypotension (NMH), but
postural tachycardia syndrome (POTS) is also common. These disorders are treatable, which
has opened up new avenues for the rehabilitation of patients with CFS.
A physical examination of children with CFS may not be normal, as was once claimed.
In addition to the orthostatic intolerance just mentioned, adolescents with CFS are
more likely to have joint hypermobility, a physical trait that is present before they
become ill. Children with CFS are also more likely to exhibit movement restrictions such
as restricted prone knee bend, ankle dorsiflexion and straight leg raise during the
Preliminary evidence suggests that certain treatments such as cognitive behavioral therapy
and graded exercise may help pediatric patients manage CFS.
What's Needed Next?
The variability of the illness in children makes it difficult to diagnose and
identify treatments that would be beneficial. In the short run, this points to the
critical need for individualized care for children with CFS. In the long run, it
emphasizes the need for a much larger research initiative.
Rowe and Bell agree on the vital need to focus more research on pediatric CFS, not
only because of the debilitating nature of the disease itself, but because of the
critical period of life it disrupts.
As Rowe puts it:
"Chronic illness and its limitations on activities constrain a young person's ability to
determine identity, discover skills and form strong emotional relationships with others.
There is an inability to engage in the normal activities of adolescence that help with
the healthy transition to adult life."
Clinically evaluated, unexplained, persistent or relapsing chronic
fatigue over the past 3 months that:
A. Is not the result of ongoing exertion
B. Is not substantially alleviated by rest
C. Results in substantial reduction in previous levels of
educational, social and personal activities
D. Must persist or reoccur for at least three months
The concurrent occurrence of the following classic ME/CFS symptoms,
which must have persisted or recurred during the past three months
of illness (symptoms may predate the reported onset of fatigue).
A. Post-exertional malaise and/or post-exertional fatigue.
With activity (it need not be strenuous and may include walking up a
flight of stairs, using a computer, or reading a book), there must
be a loss of physical or mental stamina, rapid/sudden muscle or
cognitive fatigability, post-exertional malaise and/or fatigue and
a tendency for other associated symptoms within the patient's
cluster of symptoms to worsen. The recovery is slow, often taking
24 hours or longer.
B. Unrefreshing sleep or disturbance of sleep quantity or rhythm disturbance.
May include prolonged sleep (including frequent naps), disturbed sleep (e.g.,
inability to fall asleep or early awakening), and/or day/night reversal.
C. Pain (or discomfort) that is often widespread and migratory in nature. At
least one symptom from any of the following:
Myofascial and/or joint pain (Myofascial pain can include deep pain, muscle
twitches, or achy and sore muscles. Pain, stiffness, or tenderness
may occur in any joint but must be present in more than one joint
and lacking edema or other signs of inflammation.)
Abdominal and/or head pain (May experience eye pain/sensitivity to bright
often described as localized behind the eyes or in the back of the
head. May include headaches localized elsewhere, including migraines.)
D. Two or more neurocognitive manifestations:
- Impaired memory (self-reported or observable disturbance in ability to
recall information or events on a short-term basis)
- Difficulty focusing (disturbed concentration may impair ability
to remain on task, to screen out extraneous/excessive stimuli in a
classroom, or to focus on reading, computer/work activity, or
- Difficulty finding the right word
- Frequently forget what wanted to say
- Absent mindedness
- Slowness of thought
- Difficulty recalling information
- Need to focus on one thing at a time
- Trouble expressing thought
- Difficulty comprehending information
- Frequently lose train of thought
- New trouble with math or other educational subjects
E. At least one symptom from two of the following three categories:
1. Autonomic manifestations: Neurally mediated hypotension, postural
orthostatic tachycardia, delayed postural hypotension,
palpitations with or without cardiac arrhythmias, dizziness,
feeling unsteady on the feet, disturbed balance, shortness of
2. Neuroendocrine manifestations: Recurrent feelings of feverishness
and cold extremities, subnormal body temperature and marked
diurnal fluctuations, sweating episodes, intolerance of extremes
of heat and cold, marked weight change-loss of appetite or
abnormal appetite, worsening of symptoms with stress.
3. Immune manifestations: Recurrent flu-like symptoms, non-exudative sore or
scratchy throat, repeated fevers and sweats, lymph nodes tender to
palpitation, generally minimal swelling noted, new sensitivities
to food, odors, or chemicals.
A. Any active medical condition that may explain the presence of chronic fatigue, such as:
1. Untreated hypothyroidism
2. Sleep apnea
6. Unresolved hepatitis
7. Multiple Sclerosis
8. Juvenile rheumatoid arthritis
9. Lupus erythematosus
11. Severe obesity (BMI greater than 40)
12. Celiac disease
13. Lyme disease
B. Some active psychiatric conditions that may explain the presence of chronic fatigue,
1. Childhood schizophrenia or psychotic disorders
2. Bipolar disorder
3. Active alcohol or substance abuse, except as below:
a) Alcohol or substance abuse that has been successfully treated and
resolved should not be considered exclusionary.
4. Active anorexia nervosa or bulimia nervosa, except as below:
a) Eating disorders that have been treated and resolved should not
be considered exclusionary.
5. Depressive disorders
May have presence of concomitant disorders that do not adequately explain
fatigue, and are, therefore, not necessarily exclusionary.
1. Psychiatric diagnoses such as:
a) School phobia
b) Separation anxiety
c) Anxiety disorders
d) Somatoform disorders
e) Depressive disorders
2. Other conditions defined primarily by symptoms that cannot be confirmed
by diagnostic laboratory tests, such as:
a) Multiple food and/or chemical sensitivity
3. Any condition under specific treatment sufficient
to alleviate all symptoms related to that condition and for which
the adequacy of treatment has been documented.
4. Any condition, that was treated with definitive therapy before
development of chronic symptomatic sequelae.
5. Any isolated and unexplained physical examination, laboratory or
imaging test abnormality that is insufficient to strongly suggest
the existence of an exclusionary condition.
What happens to children and adolescents who develop CFS/ME? The majority of
children, particularly adolescents, have an acute onset of symptoms that
marks the beginning of CFS/ME. An acute onset is characterized by the sudden appearance
of symptoms within a few days to weeks, usually with a flu-like or mononucleosis-like
illness in a child who had previously been healthy.
Children who experience an acute onset can clearly describe their symptoms, such as the
degree of fatigue or impairment in cognitive abilities, in comparison to their
pre-illness state. These children may accumulate a bewildering array of diagnoses from
their pediatricians, including childhood migraine syndrome, Crohn's disease,
atypical epilepsy, school phobia, attention deficit disorder, rheumatoid arthritis,
chronic rheumatic fever, irritable bowel syndrome and others.
The gradual presentation of CFS is slightly different and seems to occur more often in
younger (pre-adolescent) children. It is defined by the appearance of symptoms over
several months or longer, or by mild symptoms suggestive of CFS (frequent sore
throats, headaches or joint pains, relative inactivity, sleeping more than other children
of the same age) prior to an acute episode.
Children and adolescents with CFS/ME are occasionally extremely pale. More often,
however, they look completely well. The lack of obvious signs of illness may mean that
the first sign of CFS/ME will be a marked limitation in either physical or
mental activity. These limitations are usually first noticed by a parent or teacher.
The outwardly normal appearance of a CFS/ME child may lead to the accusation of
School Avoidance Behavior (school phobia) or the citing of a parent for Munchausen's
syndrome by proxy. The severity of CFS/ME varies.
Some children are severely disabled and bedridden. Others can go to school. A few are
capable of playing sports. Most children fall between the two ends of this spectrum.
As a rule, CFS/ME is more disabling than other chronic illnesses. The pattern and
severity of the symptoms experienced by a child may change markedly from day to day
or during the day. It is important to listen to what the child has to say about the
severity of his/her symptoms. Remissions and relapses are common. Relapses may be
caused by over-exertion or by other infectious illnesses.
Over time, slow improvement is likely, especially in the first four years. Recovery
rates are uncertain but rates of up to 40 percent have been reported. Children whose
health improves to near pre-illness levels are likely to find that they need more rest
than their peers.
A student who becomes chronically ill may develop the additional problem
of emotional conflict. The emotional conflict by itself can impinge upon a
student's education. A teacher can better assist a chronically ill student once
he/she realizes that the student is exhibiting one of the four behaviors associated with
the emotional conflict:
1. Denial - I am not sick. I want to be like everyone else. (The student overdoes
on good days, followed by severe relapses.)
2. Isolation - I cannot keep up with my peers. My peers ridicule me because some days
I can keep up and other days I can do nothing.
3. Depression/Anxiety - I will never get well. I will never do what I want to do.
I will never be who I want to be.
4. Resiliency - I am who/what I am. I will do what I can. My illness has taught me
special things. I will be a different person than I imagined.
Psychotherapy can be helpful in working through the phases of this emotional conflict
both for the patient and the family. For psychotherapy to be successful, the therapist
needs to understand and be experienced with treating patients with illnesses like CFS/ME.
Symptoms of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) include:
- Debilitating Fatigue
- Cognitive Difficulties
- Widespread Pain
- PostExertional Malaise
- Sore Throat
- Irritable Bowel Syndrome (IBS)
- Sleep Disorders
In adults with CFS/ME, these symptoms usually all occur at the same time at the onset of
the illness. Children are often misdiagnosed because their symptoms will migrate. Due to
the cognitive difficulties seen in this illness (short-term memory problems, lack
of concentration), CFS children can be misdiagnosed and told they have attention
deficit disorder (ADD).
Children with CFS/ME can appear normal and appear as though their activity levels are
normal but upon closer evaluation, the parent will find that their child has to rest
more after a sporting event, dance or other physical activity. Many people believe they
had a milder case of CFS/ME as a child that exasperated when they got older. Many
doctors attribute pain in children to "growing pains" when indeed they most likely
Pediatric patients with CFS/ME are less likely to have severe mood-related symptoms
compared with patients who are suffering from clinical depression (eg, major
depression). These mood-related symptoms include negative affect, suicidal
ideation or previous suicidal behavior, externalizing or acting-out behaviors, problems
with angry or aggressive behavior, low self-esteem, and feelings of reduced
self-efficacy. Thus, research findings with pediatric patients suggest that children
and adolescents with CFS/ME are not depressed in the conventional sense. Nevertheless,
these patients are psychologically distressed when compared with healthy people of the
Although social and academic activities may be disrupted, children with CFS/ME do
not demonstrate the same level of decline in these areas experienced by children with
clinical depression. Many children with CFS/ME are high achievers and report
dissatisfaction even with above-average performance. Self-esteem and self-concept
concerns are less likely to be issues than with depressed youth. Anecdotally,
numerous investigators and clinicians have noted that pediatric patients with CFS/ME
and their family members are inclined to deny the need for psychological assistance
for their personal problems, to minimize the role of stressors in their symptoms, and
to reject suggestions that psychological assistance may facilitate their recovery.
They generally attribute their symptoms to infectious and immunological causes, which
may be strongly reinforced by the lay literature.
Clearly, a disease this debilitating affects multiple aspects of functioning and
development, as well as the life of the family as a whole. Many subjects reported
regression via increased dependence in their relationship with their parents because
of their physical limitations. The patients spent more time with their parents than
the average adolescent or young adult and believed their health status made their
parents overprotective and more cautious. At a time when many healthy peers are gaining
more freedom and independence from their parents, these families displayed a level
of involvement that may have delayed some of these common rites of passage, such as
moving out of the home, going away to college, and working full-time.
In terms of their school functioning, many subjects in the study reported cutting back
on the hours and days that they spent in class, despite previous successes achieved in
the academic arena. Curiously, although many subjects believed that their grades had
declined, they still believed that they performed at a level either commensurate with
or superior to their classmates. Subjects reported a preference for quieter activities
with smaller groups of friends and indicated that they received criticism and disbelief
from some peers and teachers regarding the validity of their illness and lengthy absences.
The cause of CFS remains unknown. Many viral, bacterial
and psychological causes have been considered and rejected,
but the search continues.
From 10-15 percent of people with CFS have a family member
who also has the illness, leading researchers to speculate that
genetics may play a role, but more research is needed.
The diagnosis of CFS/ME is entirely clinical: a characteristic pattern of somatic
symptoms (see Centers for Disease Control and Prevention (CDC)
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/ME is suspected is an activity scale or daily diary that measures
a child's overall normal activity levels.
A child with CFS/ME will have substantially reduced activity levels, but may appear to
others to have a normal activity level. For example, a child with CFS/ME 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/ME who participated in the soccer game would have to rest for the remainder
of the day and usually the next day.
School attendance is the most important indicator of both severity and prognosis of
pediatric CFS/ME. If the CFS/ME 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/ME permits part-time school without gym or sports and
requires the child to get extra rest every evening.
With severe forms of CFS/ME, school attendance may not be possible, and home tutoring
should be used to maintain an appropriate grade level.
Comparing the 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/ME will be just as inactive
on the weekend as during the school week or may actually maintain less activity
during unrestricted times.
Pediatric CFS is frequently misdiagnosed as a behavioral or emotional problem, in
particular school phobia. Unlike children with school phobia, children with CFIDS
are typically ill on weekends as well as during the school week. Many children
with CFS also have orthostatic intolerance, which causes inability to tolerate
Many children (and adults) do recover from CFS. However, there is no standard duration
for the illness. In the few published studies that have looked at outcomes of pediatric
CFS this is what they have found:
- 8%-27% percent of children with CFS "recovered"
- 27%-46% percent improved
- 12%-29% percent remained unchanged from the onset of the illness
- The majority of children with CFS (up to 94%) experience worsening of their
school performance due to the physical and cognitive symptoms.
- 20% to 44% percent of children with CFS must be home schooled because they are too
ill to attend classes.
Children with CFS who cannot attend school miss out on important social
development opportunities. They can be classified as disabled and may be
entitled to educational services under the Individuals with Disabilities
Education Act and/or Section 504 of the Rehabilitation Act of 1973.
To date, only a few studies have attempted to document the natural history and
long-term outcome of pediatric CFS/ME, both in terms of health status and
psychosocial morbidity. In general, the physical outcome of CFS/ME in these studies
(ie, mean time since initial evaluation; range of 1.6-3.8 y) was favorable, with most
patients reporting either resolution or improvement in their symptoms; however, a
sizable proportion of these patients reported continued symptoms and significant
functional limitations. As in many chronic diseases, children with CFS/ME face
significant functional limitations (eg, frequent absences from school, disruptions in
social activities, adjustments in family dynamics) surrounding the symptoms and
treatment of their illness.
The first step in properly treating children with CFS is making the diagnosis. There is
a great body of knowledge available about how children cope with chronic illness,
and identifying a reason for their poor health will help them cope with it in an
emotionally healthier way.
Failure to establish the diagnosis and lack of cooperation between professionals may
lead to inaccurate impressions that the child is malingering or "faking." This may result
in isolation, insecurity, sense of failure, family stress and even legal action against
the family by school authorities. Further, an unresolved diagnosis may leave the child
with uncertainty as to whether he or she is really experiencing the symptoms, or whether
they are "all in the mind," as skeptics claim.
Otherwise, treatment for children varies little from that for adults and is intended
primarily to relieve specific symptoms. Treatment must be carefully tailored to meet
the needs of each patient. Sleep disorders, pain, gastrointestinal difficulties,
allergies, dizziness, light-headedness, blood pressure irregularity and depression
are some of the symptoms which physicians commonly attempt to relieve with prescription
and over-the-counter medications. Children with CFS may have unusual responses to
medications, so low dosages should be tried first and gradually increased as appropriate.
Treatment is otherwise largely supportive and responsive to symptomatology. This
includes physical therapy and modest aerobic or anaerobic exercise (if possible) to
avoid cardiovascular de-conditioning. Sleep may be addressed with medication; often,
melatonin or night-time
amitriptyline is helpful. If present
and severe, pain is often addressed in a pain clinic. Headache may be successfully
treated with anti-migraine therapy, and biofeedback regimens have been helpful at times.
If concurrent with orthostatic intolerance, headache may be amenable to measures designed
to improve blood flow and blood pressure. Fatigue and neurocognitive defects are
harder to address. Some clinicians have used stimulants with some success.
Lifestyle changes, including increased rest, reduced stress, dietary restrictions,
nutritional supplementation and light exercise (such as walking) also are frequently
recommended. These changes will likely impact a young person's educational and
social experiences, and their long-term impact must be considered. Supportive therapy,
such as counseling, can also help a young person with CFS identify and develop
effective coping strategies. Chronic illnesses such as CFS are traumatic for the
child's family as well as the child, and support from school officials, physicians
and friends is important.
CF904CFIDSChronicle.SetComm, Aspects of the Illness, Pediatric CFS, CFIDS Association of
- Dr. Kenneth Friedman and Rosemary Underhill, chronic fatigue syndrome, Recognizing
and assisting students with CFS, New Jersey Chronic Fatigue Syndrome Association.