By Dr R Vallings January 2016
One of the main reasons that young people with ME / CFS struggle with
school is associated with cognition. Mental confusion, memory problems
and difficulties with concentration are all described and may relate
to abnormal neurological pathology, sluggish cerebral circulation and
generalised fatigue.
Cognitive effort leads to fatigue in the same way that exercise will
lead to muscle fatigue and post-exertional malaise. Headaches are
frequently a prominent and persistent symptom, and they too will
interfere with the student’s cognitive ability. There can be
aggravation of symptoms associated with trying to focus and learn from
a computer screen. Many will describe visual symptoms with blurring of
text or eye fatigue.
A noisy classroom situation may not be conducive to mental effort, and
students are often moving from room to room carrying heavy books, this
all adding to the burden which the illness poses.
The young person may have problems with sleep, waking feeling
unrefreshed, and again cognitive effort may thus be limited. He/she
may arrive at school feeling already exhausted due to lack of
restorative sleep and having to get up early, and then issues such as
travelling, and the anxiety associated with what may lie ahead that
day.
Too much exercise, standing for long periods, heat and poor nutrition
can all compromise cognition. The student will be motivated to keep up
with peers, and push him/herself mentally, physically and socially
beyond the comfort zone, and suffer the consequences cognitively.
The teacher may have minimal understanding of the illness and its
sequelae, and even the efforts of parents to explain can be brushed
aside as “fussiness”. Attention span may be very short and the labels
of laziness, attention deficit or learning disorders can be appended
inappropriately.
Those with ME / CFS are usually highly motivated to achieve and will be
disappointed by failures and lack of encouragement. Ridicule is often
reported.
Parents and medical personnel need to communicate with the teachers to
enhance their understanding of ME / CFS. To ensure that the student has
the best possible opportunities to achieve appropriate education and a
feeling of success. This will mean allowing the student to work at
their own pace with adequate rest periods.
Management of the Cognitive Difficulties by the Primary Care Physician
Once a firm diagnosis has been made, the young person will feel
relieved that there is an explanation for their problems, particularly
those experienced by attempts to participate in regular schooling.
Parents need to be involved in this discussion, which should be
addressed principally to the patient, so that he/she is also involved
in decision making, and feels part of the team approach. Only the
young person knows how they feel, and should be encouraged to
verbalise their fears and needs. Teenagers will often need opportunity
for discussion without a parent present.
Many young people fear getting behind their peers academically. There
is a fear of never being able to catch up and consequently losing
friends who move on. There needs to be encouragement to participate in
ongoing education, however minimally, but without undue pressure.
This may mean limited attendance at school, or if available,
correspondence education or home-schooling. The student can then work
at their own pace. They should be encouraged to work for short periods
with adequate rest periods, recognising when they are ready to rest.
Some sort of structure for the days is helpful.
This may be difficult, if at home with parents needing to work.
Particular difficulties need to be discussed, such as aggravation from
computer screens, and difficulty focusing on written text (sometimes a
ruler placed across the page can help with maintaining focus).
Aggravating factors such as noise, bright lights, temperature and
unpleasant odours may need to be adjusted. Snacks and drinks need to
be available and allowed.
If well enough, some gentle outdoor exercise during breaks between
cognitive effort should be suggested, and for younger children playing
with siblings or friends after school or at weekends should be
encouraged.
Focus on symptom control is important, and this may be achieved with
attention to sleep difficulties and efficient pain management.
Learning good relaxation strategies with the use of music,
visualisation, and teaching self-hypnosis all have a role. Having
their own private space means that these things are more likely to be
done, and rest will be undisturbed. Regular snacking with plenty of
salt can help overcome symptoms associated with orthostatic
intolerance.
Medication such as very low-dose tricyclics or melatonin to help with
sleep may be useful. Some young people benefit from use of stimulants
such as methylphenidate, but there is a risk of a false sense of
wellbeing, leading to overdoing things. If the child is depressed or
unduly anxious, this should be addressed and there should be
opportunity to talk things through privately with a trusted
professional, who has understanding of this illness.
The young person needs to understand the issues that can aggravate
cognition, such as overdoing things mentally and physically, learning
to pace carefully, and avoiding situations which have proved
detrimental. Planning time carefully and incorporating rewards can all
help to ensure a better outcome.
Attention to achieving a regular body clock will mean that a good
routine that fits in with family and school is possible. Standing for
long periods, getting overheated or dehydrated and not eating
adequately should all be avoided.
Above all there needs to be a sense of achievement, (however small),
progress and normality if at all possible. Only the young person
him/herself know how they really feel, and gaining a sense of control
over this illness, rather than letting the illness control them
entirely will achieve a growing sense of personal achievement and
freedom from stress.
Reprinted from Co-Cure
Submitted by Lyn Wilson,
Taken from the The Queensland Communicator June/July 2017
With the annotation: Reprinted with permission from Meeting Place –
Autumn 2016 – Number 123
The official quarterly journal of ANZEMS Inc.
