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no required symptoms, although common
and less common symptoms are described.
This is in contrast with the Centers for
Disease Control and Prevention (CDC)
definition for adults which requires
6 months of fatigue and at least four other
symptoms (Fukuda et al, 1994).
The fatigue in CFS/ME must be disa-
bling, i.e. severe enough to result in a
reduction of activities. The fatigue and
other symptoms are made worse (payback)
by exertion whether the exertion is physi-
cal, emotional or cognitive. The payback is
often delayed to the following day or later,
and can last a day or longer. When children
are moderately to severely affected, they
can get payback after what appears to be a
very small increase in activity. This may
present as children doing alternate days at
school or having increased symptoms after,
for example, home tuition. It is important
to recognize this when planning rehabilita-
tion programmes otherwise the rehabilita-
tion itself can make the illness worse.
In addition to the fatigue, an almost
universal complaint is sleep disturbance.
Usually children and adults find it hard to
get off to sleep or describe a restless or
broken sleep. They usually find it very dif-
ficult to get up in the morning and do not
feel refreshed after they sleep. Unrefreshing
sleep is part of the CDC criteria for CFS/
ME in adults and is a useful clinical sign.
There are many other symptoms
described in CFS/ME both in definitions
and in population studies. It is important
to recognize that not all children will talk
about fatigue at presentation. Children
may present with concentration and mem-
ory problems which is consistent with
population studies which have shown this
is a significant problem. The memory
problems appear to be short- and medium-
term problems which are very disruptive
for children attending school. Young peo-
ple talk about having a lesson one day and
forgetting the content the next day. This is
in addition to the concentration problems
as they phase in and out of conversations,
making learning even more difficult.
Recurrent sore throats and lymphadeno-
pathy, headaches, muscle and joint pain
are part of the adult CDC definition for
CFS/ME and these symptoms are com-
monly seen in children. Children may get
labelled as having recurrent ‘tonsillitis’
every 2–3 weeks because they keep pre-
senting with sore throat, tender lymph
nodes, muscle and joint pain. The diagno-
sis of CFS/ME must be considered for a
child who presents in this way if there is
associated disabling fatigue.
The severity and therefore presentation
of this condition is very variable. Some
children are only mildly affected and able
to attend full-time school but do nothing
when they go home, or miss school regu-
larly at the end of the week. At the other
end of the spectrum, some children and
young people are so severely affected that
they are unable to get out of bed. Their
symptoms are similar to those described
above but much more severe. They are
likely to have noise and light sensitivity
and may be sensitive to smells (such as
perfumes), medication and some food
types. Very little is known about this
group of patients and almost nothing is
published, but clinical experience is that
most do well with the right support, help
and rehabilitation programme.
If one sees a child or young person with
CFS/ME it is important to exclude other
medical or psychological causes for the
fatigue. Screening investigations are impor-
tant and history and examination may
point to other investigations which are
necessary. Blood screening investigations
should include full blood count, erythro-
cyte sedimentation rate or viscosity; C-
reactive protein; urea, electrolytes and
creatinine; liver function tests, random
glucose, thyroid function, CPK, ferritin
and coeliac screen. The urine should be
dipped for protein, blood and glucose.