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Guidelines for Schools
ME (myalgic encephalomyelitis): The recognition and
management of this condition in the school population.
Editor: Jane Colby (former headteacher)
Member of the Chief Medical Officer's Working Group on CFS/ME (Children's Subgroup)
Initial edition issued by the
National ME Support Centre
Harold Wood Hospital
ME has only recently been recognised in children and young people
as an organic illness precipitated by viral infection, though not infectious in itself.
The full extent of the effect this disability can have upon the lives of young people is
only just beginning to be understood.
These notes offer some general information for LEA staff and
schools. It is important to have some understanding of this illness in order to offer the
best possible help and support to the sufferer and his family.
Teachers and others who work with children are also
statistically at greater risk of developing ME than the general adult population. This is
another compelling reason to be aware of the condition, its symptoms and correct
2 ME the Illness
ME (also known as Post Viral Fatigue Syndrome or Chronic Fatigue
Syndrome) is a far more common disability than generally supposed, especially in the
pupils and staff of educational institutions. It has been recognised under different names
in many parts of the world, particularly those with temperate climates and high standards
of sanitation . It is a syndrome (a group of related symptoms) precipitated by a virus
infection in an individual who has usually been previously fit and with a good work or
The presenting symptom is often fatigue, made worse by even
minimal physical and mental exertion, and with a prolonged recovery period. Muscles are
often painful and tender. Physical activity can exhaust the sufferer's mental ability and
vice versa, making it impossible to carry out tasks which require both simultaneously.
The sufferer can vary from near normality to sheer exhaustion
quite suddenly. This is often mistakenly seen as evidence of malingering. Neurological
disturbances due to hypothalamic and neurotransmitter imbalance are characteristic and
- Inability to concentrate;
- Difficulty with recall, both verbal (temporary loss of spoken
vocabulary, pronunciation difficulties, switching the order of words) and numeric, as with
a slight stroke;
- Difficulty in assimilating new information;
- Reversal of sleep rhythms (hyperactivity and wakefulness by night,
somnolence and unresponsiveness by day);
- Emotional lability eg depression, anger, emotional `highs'
leading to hyperactivity. Mood swings may be severe and prove difficult to handle;
- Disturbances of appetite, taste and smell with results that may
range from anorexia to obesity. This can mean that the patient is obliged to avoid certain
foods. Hypersensitivity to smells can interfere with lab work;
- Disturbance of balance and clumsiness due to defects in spatial
- Hypersensitivity to sound and light;
- Impaired body temperature regulation;
- Abnormal response to exercise; pushing a child with ME too far
physically is dangerous. In particular, up to 30% of patients may suffer from cardiac
complications, depending on the strain of infecting virus.
The illness has an extended relapsing course  , but some
patients may be ill for a short or a much longer time. The illness may be prolonged by
inappropriate diagnosis and treatment in the early stages. Relapses follow physical or
mental stress, a variety of secondary infections, immunisations and other onslaughts upon
the immune system.
NB It can be difficult to believe that a child who is
often exhausted physically is also capable of hyperactivity. "There's nothing wrong
with him," is a common and natural reaction on witnessing such behaviour. It
is important to understand that the abnormal activity results from hormonal or
neurotransmitter disturbance with effects rather like taking a 'pep' pill. Total
exhaustion often follows. The teacher may never see this delayed after-effect.
3 Implications for Schools
Disablement is an inability to perform a bodily or mental
process, either completely or partially, due, amongst other things, to loss of the normal
physical or mental function of an organ or part of the body, leading to a reduced ability
to live life to the full. It is a form of social constraint.
Some young people may be able to function effectively within the
school or college, others will be too unwell to attend school and may need to be educated
at home. Therefore teachers and home tutors will encounter similar difficulties.
There is no one method of dealing with the situation. However, we
can with co-operation between parents, sufferer, medical and education authorities find
the best possible management for each individual at any one time.
3.1 Practical Pointers
- There may be a strictly limited amount of energy for the whole
day. Rest may be needed after travel or movement around the buildings, or after mental or
- Children with ME are often better judges than professionals of the
amount of energy available on a given day. It is important that they are involved in the
planning of their work. Pushing these children beyond their limits is counterproductive.
Paradoxically some children will push themselves beyond their limit. It may be possible to
recognise the onset of fatigue; signs include remoteness, pallor or a general unease with
deteriorating work standards.
- Students may not be able to maintain concentration. Powers of
comprehension, deduction, memory storage and retrieval may be affected, lessening the pace
of learning. This can occur after apparently minimal mental or physical effort. Students
may be unable to cope with the full range of the National Curriculum, and teachers need to
prioritise what is taught. There must be flexibility of pace - some days very little may
be achieved when mental exhaustion sets in (perhaps quite suddenly). In some children
intellectual fatigue is the worst part of their illness, and may be the most persistent.
Students may not realise that they are entering a phase of exhaustion; the teacher must be
alert to the symptoms.
- Absences may leave gaps in the work covered; students may be
unable to catch up totally when they return without precipitating another relapse.
Co-ordination between teachers/departments is recommended to avoid overloading the
- It may be necessary for the student to take part selectively in
the PE curriculum eg swimming gently (in warm water to avoid chilling) is much less
strenuous than running. However care needs to be taken (see section 2 - heart
complications). Omit PE whilst necessary, especially in the early stages of illness. NB
The child may be able to perform in the short term if pushed but this is inadvisable.
- Small hand movements or handwriting may suffer - a word-processor
may prove to be much less tiring. NB The monitor brightness may have to be turned down and
some sufferers may be particularly susceptible to flicker (if using Windows or similar, a
high refresh rate may be required - 80Hz or even greater).
- The sufferer may have low tolerance of laboratory smells and
substances. Headache, nausea and dizziness may result from exposure to low levels of
normally harmless fumes.
- The student may need to use the toilet more frequently than
normal. It may be helpful to allow the student longer at lesson changes, to move around
the building slowly and visit the toilet. A companion to help carry bags between lessons
- Bear with the child having temperature problems. He may need to
put on extra clothing or remove it, since the body may not be regulating its own
- The student may need to eat and drink during a lesson. A very
sudden and dramatic deterioration (weakness, faintness, disorientation) can occur if an ME
sufferer does not eat promptly when necessary.
- Students may be very forgetful. Teachers need to remember that
this is due to brain malfunctions and is not deliberate.
- There may be emotional distress, anxiety or even panic, often for
no logical reason. The importance of reassurance and simple kindness from teachers and
parents cannot be overstated.
- Tests and exams often present practical problems which can
sometimes be overcome by giving the child extra time or rests during the exam (if
permitted). However, exams may be quite impossible on intellectually low days, despite
extra support. Public examination boards will make special concessions provided sufficient
notice is given.
- It is important to ensure that students, however ill, have the
opportunity to maintain contact with their peers. Peer group attitudes need to be
assessed. The sufferer is extremely vulnerable and bullying can be serious, loneliness an
extra stress at an already stressful time, which will delay recovery.
A student's peers may not believe in his illness and a `skiver' label can be very
distressing and hurtful. Positive action may be needed to help establish or remake
friendships, and a full explanation to peer groups about the nature and symptoms of ME may
help. Personal and social education lessons may provide an opportunity for the class to
discuss different types of courage, loneliness, feelings of foolishness and stupidity, the
way in which disease and disability are perceived, and implications of these.
- An adequate period of sick leave is essential at the onset of this
illness. The student/parents/teachers may expect too much based on the student's previous
performance when healthy. The danger is for everyone to push too hard and too quickly when
recovery starts. Fluctuations and temporary regressions or relapses are to be expected,
and despondency is natural when these occur. A good and positive approach is to compare
progress on a long-term basis - how was the student doing at this time last year?
NB Schoolchildren and staff are continuously exposed to infections and relapses are
therefore frequent when starting a new term or school.
4 Recommendations for Schools
- Statementing may or may not be appropriate depending on the
severity of the illness and the flexibility of the LEA. However, a register of pupils with
ME or their inclusion on the school's register of pupils with Special Educational Needs
would be helpful, whether or not there is a statement.
- Depending on the school's pastoral arrangements, it is advisable
that a member of staff such as the personal tutor, school counsellor, class teacher or
teacher with responsibility for Special Educational Needs should monitor and co-ordinate
the student's needs and provision for them. This is likely to be the best way of ensuring
a productive approach throughout the school and between professionals, home and school.
- Full use needs to be made of all support services eg EWO,
school medical service, home tuition service, educational psychologist. Transport to and
from school should be considered. Management may well include periods of education on a
very part-time basis at home or a modified timetable involving attendance only for
selected lessons, varying with the pupil's health.
- Consider the possibility of rescheduling exams if the student is
ill on the day, as with any other illness. Some boards may give permission for the student
to sit an exam at home. In some cases, if the illness is causing more physical than mental
problems, this could be a solution. Where mental confusion and physical weakness are both
severely present, there is no alternative but to postpone the exams. In the case of missed
A-levels, parents will need early counselling about their child's future options eg
at VI-form college, College of FE, Tertiary college.
- Combat lack of knowledge amongst all teaching and ancillary staff.
Consider staff training; there may be a local seminar on ME. If nothing is available in
your area, consider an internal presentation of these notes. Speakers may be available to
- Ensure that arrangements for lunchtimes and food contribute to
good management of the student's illness rather than being counterproductive. A balanced
diet with added carbohydrate is essential and the student may have to carry carbohydrate
snacks or have access to a sweet drink if suffering from a hypoglycaemic attack. Blood
sugar control is often variable in this illness.
- Be especially aware and vigilant for new cases of ME both amongst
staff and pupils following any outbreak of an enterovirus infection (flu-like illness,
with respiratory/gastro-intestinal symptoms). Correct management in the early stages still
offers the best chance of recovery.
- It may seem superfluous to mention the great need for empathy with
the plight of parents whose children have been struck down in this way. Whilst they want
and need special arrangements made for their children, they are under terrible stress and
often fear phrases like `Special Educational Needs'. Both parents and child need
information from the school, but also need to be allowed to give information about this
particular case of ME and what in their own experience can provoke relapse, or be of
There are plenty of horror stories about misunderstandings between parents and schools. It
might be appropriate to mention just one - by no means as bad as some. A secondary school
pupil was excused from PE due to having ME. The teacher instructed him to use his time
taking messages round the school! The mother, herself an ME sufferer on heart medication,
then struggled into the school to put the matter right. The teacher was surprised and
apologetic - but wise after the event. Meanwhile, the condition of both pupil and parent
had been adversely affected.
- Research in schools reveals that cases of ME occur in clusters. If
you have one case amongst pupils or staff you may well have more. Look carefully at cases
of suspected school phobia, depression or stress as these can be missed cases of ME.
Pupils may be misdiagnosed as glandular fever since a syndrome similar to glandular fever
(caused by enterovirus infection) is a recognised trigger of ME.
Knowledge of ME is vital to all who work with young people, as
they are themselves at greater risk than the general adult population. ME can have serious
complications; around 25% of sufferers appear to make a complete recovery, but another 50%
experience a longer (fluctuating) illness. The last 25% can suffer chronic illness ie
very long-term, often severe. Evidence is also accruing that apparent recovery may be more
akin to remission. Therefore it is wise to be alert for the recurrence of symptoms in
future years, especially at times of extra demand and pace life accordingly.
The problems encountered in schools can be successfully overcome
if one is prepared to be flexible and creative. Parents and schools need to work as a
partnership to help the child overcome the frustrations and fears of what may be a long
Early recognition and correct management (conservation of energy
plus rest whenever the child needs it) is still the best hope for combating ME.
Children with ME have too often been mistakenly labelled as
school refusers. Diagnosis is a matter for the medical profession, but this can be a
complex matter and can take some time. In the meantime, it is important to play safe. Believe
the child. It may be that the knowledgeable teacher is the first person to put together
all the bizarre symptoms and recognise a case of ME.
 Dowsett EG. Human Enteroviral Infections
Journal of Hospital Infection (1988) vol 11 pp 103-115
 Dowsett EG et al. Myalgic Encephalomyelitis - a persistent
Postgraduate Medical Journal (1990) vol 66 pp 526-530
 Bell DS. The Disease of a Thousand Names
(1991) Pollard Publications, Lyndonville, New York 14098
 Behan PO, Bakheit AMO. Clinical Spectrum of the Post Viral
British Medical Bulletin (1991) vol 47 pp 793-808
 Demitrack Mark A et al. Evidence for impaired activation
of the Hypothalamic-Pituitary-Adrenal axis in patients with Chronic Fatigue Syndrome
Journal of Clinical Endocrinology and Metabolism (1991) vol 73 pp 1224-1234
 Ichise M et al. Assessment of regional cerebral perfusion
by TC-HMPAO SPECT in Chronic Fatigue Syndrome
Nuclear Medicine Communications (1992) vol 13 no 10 pp 767-772
 Lerner AM, Lawrie C, Dworkin HS Repetitively negative
changing T waves at 24 hour electrocardiographic monitors in patients with the Chronic
CHEST (1993) vol 104 no 5 pp 1417--1421
Costa DC, Tannock C, Brostoff J. Brain stem perfusion is
impaired in patients with chronic fatigue syndrome
Quarterly Journal of Medicine (1995) vol 88 pp 767-773
Bruno RL, Sapolsky R, Zimmerman JR, Frick NM. Pathophysiology
of a Central Cause of Post-Polio Fatigue
Annals of the New York Academy of Sciences (1995) vol 753 pp 257--275.
Hyde B, Cameron B, Duncker A et al. Epidemiological Aspects of
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome/Postviral Fatigue Syndrome
Nightingale Research Foundation, Ottowa, Canada (1994)
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