What
is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome is a
debilitating and complex illness,
characterized by incapacitating fatigue (loss of energy and stamina)
and multiple
symptoms in all body systems. The symptoms are made worse by physical
and
mental activity and are not relieved by rest. Patients’ ability to
function is
substantially less than before the illness.
Nearly one million Americans
have ME/CFS, but only 15% have been
diagnosed. A substantial but unknown number of patients are under the
age of 18
years. Adolescents 12 to 17 years old are more likely than younger
children to
develop ME/CFS, but children as young as four years old have developed
the
illness. In adults, three to four times as many women as men have
ME/CFS, but
the gender ratio is almost equal in affected children. ME/CFS usually
occurs as
sporadic (isolated) cases of the illness, but in 20% of patients it
affects
more than one family member. Clusters of cases or outbreaks of the
illness have
been found worldwide and in many of these outbreaks the illness has
been
prominent in schoolchildren.
The cause of ME/CFS is unknown,
but several factors may be involved. In
some families, where two or more blood relatives have ME/CFS, genetics
may
produce a susceptibility to the illness. Frequently the illness follows
an
acute infection, and immune system changes found in ME/CFS are similar
to
changes found in some viral infections. In spite of much research, no
known
infectious agent has been shown to be the cause. Occasionally, ME/CFS
is
triggered by: toxins, immunization, or major trauma. ME/CFS is not
a
psychological illness. Depression and anxiety may occur secondary to
ME/CFS,
but Major Depression and ME/CFS can be distinguished by behavioral,
immunological and hormonal testing.
There is no diagnostic test for
ME/CFS. The diagnosis is made from the
characteristic fatigue, the pattern of other symptoms and the exclusion
of
other fatiguing illnesses. The main diagnostic features of the illness
have
been incorporated into a number of different case definitions for
adults (2)
and more recently a case definition for children (1). An adult case
definition
(3) has often been used to diagnose children, but it excludes some
children
with genuine ME/CFS, who do not exactly fit the adult criteria. Key symptoms of
the recommended pediatric case definition for ME/CFS (1) are as follows:
·
Clinically
evaluated,
unexplained, persistent, or relapsing fatigue for
at least three months, which is not the result of exertion, is not
relieved by
rest, and results in a substantial reduction in previous activities
·
The
concurrent presence of the
following symptoms:
1. Malaise, fatigue, or worsening of other symptoms after exertion, with loss of mental and/or physical stamina, and delayed recovery of more than 24 hours
2.
Un-refreshing sleep, day/night reversal, nighttime insomnia and/or
daytime
hypersomnia (excessive sleep), disturbance of sleep quantity
or rhythm
3. Widespread
or migratory pain. The pain can be located in the muscles and/or joints
(without signs of inflammation), in the abdomen, in the chest, or it
can be a
new type, or an increase in severity of headaches
4. Two or more neuro-cognitive
manifestations, including impaired short
term memory, difficulty in
concentration or focusing, difficulty finding words or numbers, absent
mindedness, slowness of thought, difficulty understanding information
and
expressing thoughts, educational difficulties
5. At least one symptom from
two of the
following three subcategories:
a. Autonomic manifestations, including neurally mediated hypotension, postural hypotension, postural orthostatic tachycardia, shortness of breath, disturbed balance
b. Neuro-endocrine manifestations, including feeling of feverishness, cold extremities, low body temperature, sweating, intolerance to heat or cold, change of appetite or weight
c. Immune manifestations, including recurrent flu-like symptoms, sore throats, fevers and sweats, tender lymph nodes, new sensitivities to food, medicines, odors, or chemicals
·
Other
fatiguing illnesses must
be excluded by clinical examination and
medical tests. Routine tests are frequently normal, but specialized
testing may
show various abnormalities in some patients’ immune systems, nervous
systems,
cardiovascular systems and/or in cellular energy production.
·
The
pattern and severity of the
symptoms experienced by a child may
change markedly from day to day or during the day. Children with ME/CFS
often
do not look ill, so it is important to listen to what the child has to
say
about the severity of his/her symptoms. Mood changes, reactive
depression or
anxiety may result from the illness. Many children also have the
symptoms of
Juvenile Fibromyalgia (pain and tender points, or areas, in muscles
when they
are touched). It may also be difficult to distinguish ME/CFS from
Infectious
Mononucleosis, Rheumatoid Arthritis, Lyme disease, psychiatric
disorders or
other illnesses. ME/CFS has often been misdiagnosed, as School
Avoidance
Behavior, or as Munchausen’s syndrome by proxy (a condition in which, a
parent
fabricates their child’s illness).
ME/CFS in adolescents usually
starts suddenly with a fever and flu-like
symptoms. Sometimes the onset is gradual. In younger children, a
gradual onset
over months or years is more likely. It
can be especially difficult to diagnose ME/CFS in younger children,
because they
may not recognize that their fatigue and their other symptoms are
abnormal. The
diagnosis is often made retrospectively when the child is older. The
first sign
of the illness may be the child’s marked limitation of activity,
noticed by a
parent or teacher.
Children with ME/CFS may be
very ill at the onset of the illness and the
diagnosis is often uncertain, because routine blood tests are
frequently
normal. By definition the diagnosis of ME/CFS cannot be made for three
months,
even if no other illness is found. Sometimes a provisional diagnosis of
ME/CFS
can be made sooner. Early diagnosis may lessen the impact of the
illness by
ensuring the child gets adequate rest. The severity of ME/CFS varies.
Some
children are severely disabled and bedridden, while others can go to
school and
a few even do sports. Most are between these extremes. Remissions and
relapses
are common. Relapses may be caused by over-exertion or by other
infectious
illnesses. Over time, slow improvement is likely. Recovery rates are
uncertain
but rates of up to 40% have been reported. Dramatic improvement is more
likely
to occur in the first four years. Children whose health improves to
near
pre-illness levels are likely to find that they need more rest than
their
contemporaries.
Establishing the diagnosis of
ME/CFS and confirming that the child has a
recognized illness will relieve uncertainty in the minds of the patient
and the
parents. There is no medication, which will cure the illness, but
medication
can be helpful in the relief of individual symptoms. ME/CFS patients
commonly
respond to lower than expected, dosages of many medications. Adequate
rest is
the mainstay of treatment. Patients should be advised to adapt their
lifestyle
to live within their capabilities. Advice on nutrition can be helpful.
Children
with ME/CFS who are unable to attend school will be isolated at home,
miss
their friends and often need to give up their favorite activities. They
should
be encouraged to see their friends when possible and take up hobbies,
which are
within their capabilities.
Most students with ME/CFS fall
behind in their education due to cognitive
problems and fatigue. Many are too ill to attend school. A British
study found
that ME/CFS was the most common cause of long-term absence from school.
Students with ME/CFS may qualify for Special Services under the
Individuals
with Disabilities Education Act (IDEA) and/or Section 504 of the
Rehabilitation
Act, 1973. Eligible students receive an Individual Educational Plan
(IEP) and
the school should provide reasonable accommodations and/or home
tutoring.
References
1.
Jason LA, Jordan K, et al. A Pediatric Case Definition for
Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. J.
CFS 2006;13 (2/3):1-28.
2.
Carruthers BM,
3.
Fukuda K, Straus SE, et al. The Chronic fatigue syndrome: A
comprehensive approach to its definition and study. Annals
of Int. med. 1994, 121:953-959.
For
more information
E-mail: njcfsa@njcfsa.org.
Phone: (888)
835 3677 (Help Line).
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