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FAQ's About Pediatric CFS/ME
The following are questions and answers regarding Chronic Fatigue
Syndrome/Myalgic Encephalopathy (CFS/ME/ME) in children.
Contact us if you have a question you'd like answered. Select from the table
below for more FAQ's.
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Frequently Asked Questions
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What is Pediatric CFS/ME?
ANSWER:
Chronic fatigue and immune dysfunction syndrome (CFS/ME), also known as chronic
fatigue syndrome (CFS/ME), is widely recognized in adults. But it's not as well
known that children and adolescents can have CFS/ME.
In children and adults, CFS/ME is a complex illness characterized by incapacitating
fatigue, neurological problems and a constellation of symptoms that can resemble
many other disorders (including mononucleosis, childhood migraine syndrome and
Lyme disease).
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What Causes Pediatric CFS/ME?
ANSWER: The cause of the illness is not yet known.
Current theories are looking at the possibilities of
neuroendocrine
dysfunction, viruses, environmental toxins,
genetic predisposition, or a
combination of these. For a time it was thought that Epstein-Barr Virus (EBV), the cause of mononucleosis, might cause CFS/ME but recent research
has discounted this idea. The illness seems to prompt a chronic immune reaction in the body,
however it is not clear that this is in response to any actual infection - this may only be a
dysfunction of the immune system itself.
A recent concept proclaimed by Prof. Mark Demitrack is that CFS/ME is a generalized condition
which may have any of several causes (in the same way that the condition called high blood
pressure is not caused by any one single factor). It is known that stressors, physical
or emotional, seems to make CFS/ME worse.
Some current research continues to investigate possible viral causes including HHV-6, other herpes viruses, enteroviruses, and retroviruses. Additionally, co-factors (such as genetic predisposition, stress,
environment, gender, age, and prior illness) appear to play an important role in the
development and course of the illness.
Many medical observers have noted that CFS/ME seems often to be "triggered" by some stressful
event, but in all likelihood the condition was latent beforehand. Some people will appear to get CFS/ME
following a viral infection, or a head injury, or surgery, excessive use of antibiotics, or
some other traumatic event. Yet it's unlikely that these events on their own could be a
primary cause.
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How is Pediatric CFS/ME Diagnosed?
ANSWER:
CFS/ME/ME is diagnosed when symptoms persist for more than six
months and cannot be explained by any other medical or
psychological disorders.
Teenagers are more likely than younger children to fit the
case definition created by the U.S. Centers for Disease
Control and Prevention (CDC).
Pediatric CFS/ME is frequently misdiagnosed as a behavioral or
emotional problem, in particular school phobia. Unlike children
with school phobia, children with CFS/ME are typically
ill on weekends as well as during the school week.
Many children with CFS/ME also have orthostatic intolerance,
which causes inability to tolerate upright posture.
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What Are The Symptoms of Pediatric CFS/ME?
ANSWER:
The symptoms of CFS/ME in children are similar to those of
adults. In addition to debilitating fatigue, they may include
impaired memory or concentration, sore throat, tender
lymph nodes, muscle pain and headaches.
The majority of children with CFS/ME, particularly adolescents,
have an acute onset, symptoms appear suddenly within a few
days or weeks, usually with a flu or mononucleosis-like illness.
Gradual presentation occurs more often in younger, preadolescent
children and is defined by the appearance of
symptoms over several months or longer.
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How Is Pediatric CFS/ME Treated?
ANSWER:
Treatment for children with CFS/ME is similar to treatment for
adults, and is intended primarily to relieve specific symptoms,
such as difficulty sleeping, pain, gastrointestinal difficulties,
allergies and dizziness.
Lifestyle changes, including increased rest, dietary restrictions
and very light exercise, are also frequently recommended.
Children with CFS/ME may have unusual responses to medications,
so low dosages should be tried first and gradually
increased as appropriate.
Chronic illnesses such as CFS/ME are traumatic for the child's
family as well as the child, and support from school officials,
physicians and friends is important.
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What Are The Differences Between Adult & Pediatric CFS/ME?
ANSWER:
Although CFS/ME 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/ME, 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 (who treats children from
across the United States and Canada) believes, "The most striking thing about
pediatric CFS/ME is the ability of children to adapt to
their symptoms. Yet that fact makes it more difficult
to detect and treat the problem."
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/ME 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 Rowe, "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/ME as an adult knows she was a
capable, functioning contributor to society, and that
the illness doesn't define her as a person."
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How Long Will Pediatric CFS/ME Last?
ANSWER:
Many children (and adults) do recover from CFS/ME. However, there is no standard
duration for the illness. In the few published studies that have looked at
outcomes of pediatric CFS/ME this is what they have found:
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8%-27% percent of children with CFS/ME "recovered"
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27%-46% percent improved
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12%-29% percent remained unchanged from the onset of the illness
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The majority of children with CFS/ME (up to 94%) experience worsening of
their school performance due to the physical and cognitive symptoms.
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20% to 44% percent of children with CFS/ME must be home schooled because they
are too ill to attend classes.
Children with CFS/ME 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.
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My Child Seems Depressed. Is This Common?
ANSWER:
Many persons with CFS/ME become depressed as a result of, rather than
as a cause of, CFS/ME. Depression is common in all chronic illnesses;
it results from numerous losses, life changes and brain chemistry irregularities.
In some cases, depression becomes very severe. The good news is that, with
good medical care, it is one of the easiest-to-treat symptoms caused by CFS/ME.
CFS/ME related depression is properly managed with medication and/or supportive counseling.
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Is Exercise Helpful or Harmful?
ANSWER:
One hallmark of CFS/ME is an intolerance of previously well tolerated levels
of physical activity. Most people with CFS/ME symptoms worsen severely,
sometimes for days, following even minor exertion. Physicians generally recommend
that people with CFS/ME perform limited physical activity (such as walking or yoga)
to guard against the negative consequences of de-conditioning, but that they
listen to their bodies and not push beyond their limits.
Students with CFS/ME may be exempted from or obtain adaptations to
physical education requirements with a note from their physicians and the
understanding of school administrators.
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How Does Pediatric CFS/ME Affect School Performance?
ANSWER:
A child with CFS/ME must often work harder to maintain the same grades he or she was
earning prior to becoming ill. In many cases, grades drop because of the physical
and cognitive impairments caused by CFS/ME. Children with CFS/ME often miss a good deal
of school. A reduced school schedule supplemented by home tutoring can lead to a
positive educational experience.
Cognitive problems, such as loss of ability to concentrate and difficulties with
short-term memory, word-finding ability and visual/spatial perception can go
unrecognized. As a result, the cognitive deficits may only be pinpointed through
educational evaluation, which is provided by schools upon parental request
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What About My Child's Social Needs?
ANSWER:
It is important to consider the role school plays in the social development of a child
or adolescent and the simple accommodations which can help young persons with CFS/ME
become happy, healthy adults. In addition to becoming proficient in math and reading,
school is the place people learn to communicate, work with others and develop the
social skills that are essential throughout life.
Schools should maintain an open door policy for students with CFS/ME, helping them to
feel welcome whenever they are healthy enough to come to school. Allowing students to
come in for easier classes, such as art or music, and to be home tutored for more
difficult subjects, such as math or science, will allow them to participate in school,
while ensuring that their education does not suffer. Attendance requirements may be
modified to prevent chronically ill children from feeling that they are being punished
for being ill.
If these situations occur, the student's parents and health care team must step in and
try to strike a compromise with schools to ensure that their children have opportunities
to develop into well adjusted, as well as well educated, adults.
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Does My Child Have Educational Rights?
ANSWER:
Students disabled by CFS/ME are entitled to special educational services under the
Individuals with Disabilities Education Act (IDEA) and/or accommodations under Section
504 of the Rehabilitation Act of 1973.
IDEA mandates a free and appropriate public education for all children with
disabilities. Young persons with CFS/ME (YPWCs) may meet IDEA's disability classification
of "other health impaired" defined by "...limited strength, vitality or alertness,
due to chronic or acute health problems, which adversely affects a child's
educational performance." If a YPWC is deemed to meet this criteria, the parents and
school personnel will meet to develop an individualized education plan (IEP), which will
be reviewed annually.
If YPWCs are achieving at their pre-illness level and are ineligible for services under
IDEA, they may be entitled to accommodations under Section 504 of the Federal
Rehabilitation Act of 1973. Section 504 assures equal opportunities for disabled youth
in schools receiving federal funds, including colleges and universities. The school's
504 contact person can put modifications, accommodations or aids into a plan outlining
what a YPWC needs to participate and benefit from the educational program.
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How Can I Help My Child with CFS/ME?
ANSWER:
Above all, believe your child. Children with CFS/ME need to be taken seriously by
parents, doctors, teachers and others, and not to be written off as manipulative,
lazy, emotionally disturbed or school phobic. Parents must learn to listen to and accept
what their children with CFS/ME communicate about what they can and cannot do.
Acknowledging and validating their illness relieves the pressure they feel to prove they
are really sick. Children need advocates, people who are willing to fight for them, to
educate the public, health care providers and educators about the physical and
cognitive challenges faced by children with CFS/ME.
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What Do We Know From Research?
ANSWER:
In spite of the scarcity of research, studies have
shed light on various aspects of pediatric CFS/ME.
The main studies show the following findings:
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CFS/ME occurs in children and adolescents, though less frequently in children younger than
age 10. The age at onset many pediatric CFS/ME patients ranges from 11-18; for other
patients the age range is 10-21, with the average age at onset of 15. This
suggests age of onset may be connected to hormonal changes as children approach puberty,
but this isn't confirmed.
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Pediatric CFS/ME has quite a variable duration, from months to many years. Although
many children get better, the illness can be more chronic than doctors first thought. For
instance, a 13-year follow-up study of 35 pediatric cases by Dr David 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.
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Co-morbid 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/ME have no anxiety or depression, in contrast to prior views of CFS/ME as a form
of generalized anxiety disorder or atypical depression.
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There is a strong association between adolescent CFS/ME and related circulatory disorders
that are characterized by intolerance of prolonged upright posture. Peter Rowe, MD,
a researcher at Johns Hopkins University, reports that in
90% of untreated pediatric patients, this worsening of CFS/ME 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/ME.
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A physical examination of children with CFS/ME
may not be normal, as was once claimed. In addition
to the orthostatic intolerance just mentioned,
adolescents with CFS/ME are more likely to have joint
hyper mobility, a physical trait that is present before
they become ill. Children with CFS/ME are also more
likely to exhibit movement restrictions such as
restricted prone knee bend, ankle dorsiflexion
and straight leg raise during the physical exam.
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Preliminary evidence suggests that certain
treatments such as cognitive behavioral therapy
and graded exercise may help pediatric patients
manage CFS/ME.
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Where Can I Get More Information?
ANSWER:
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The CFIDS Association of America offers many resources on its Web site
( http://www.cfids.org), including a
special section on youth-related issues. Pediatric CFS/ME information is also available to
help children and adults with specialized questions about educational, medical
and social/coping issues. Call the Association's Resource Line at 704/365-2343
for information.
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The National Information Center for Children and Youth with Disabilities (NICHCY)
PO Box 1492, Washington DC 20013
Tel: (800) 695-0285
Web site: http://www.nichcy.org
They provide resources, referrals to other national and local organizations, free
information packets and lists of publications.
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The CFS Youth Discussion Group (CFS-Y) is an e-mailing list for people under the
age of 25 with CFS, chronic fatigue immune dysfunction syndrome (CFIDS), ME, or
fibromyalgia (FM). To subscribe, send the following command by e-mail:
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- It's FREE!
