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Guidelines for Schools
(third edition)

Abstract
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


1 Introduction

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 management.


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 [1]. 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 school record.

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 symptoms include:-

The illness has an extended relapsing course [2][3] , 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

  1. 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 physical effort.
  2. 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.
  3. 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.
  4. 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 student.
  5. 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.
  6. 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).
  7. 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.
  8. 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 is desirable.
  9. 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 temperature properly.
  10. 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.
  11. Students may be very forgetful. Teachers need to remember that this is due to brain malfunctions and is not deliberate.
  12. 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.
  13. 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.
  14. 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.

  15. 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

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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 assist.
  6. 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.
  7. 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.
  8. 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 positive help.

    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.

  9. 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.

5 Conclusion

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 illness.

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.


References

[1] Dowsett EG. Human Enteroviral Infections
Journal of Hospital Infection (1988) vol 11 pp 103-115

[2] Dowsett EG et al. Myalgic Encephalomyelitis - a persistent enteroviral infection
Postgraduate Medical Journal (1990) vol 66 pp 526-530

[3] Bell DS. The Disease of a Thousand Names
(1991) Pollard Publications, Lyndonville, New York 14098

[4] Behan PO, Bakheit AMO. Clinical Spectrum of the Post Viral Fatigue Syndrome
British Medical Bulletin (1991) vol 47 pp 793-808

[5] 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

[6] 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

[7] Lerner AM, Lawrie C, Dworkin HS Repetitively negative changing T waves at 24 hour electrocardiographic monitors in patients with the Chronic Fatigue Syndrome
CHEST (1993) vol 104 no 5 pp 1417--1421

Further Reading

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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