YA Online - Childhood ME

Childhood ME
A Report by an Independent Group of Advisers

Edited by Dr Anne MacIntyre

This document forms part of the material
being used as "work in progress" by the
Chief Medical Officer's Working Group on CFS/ME

Jane Colby	LAMSC; Cert Ed
Dr Alan Franklin	FRCP; FRCPCH; DCH; DRCOG
Dr Anne MacIntyre	MB; ChB
Dr Lyn Michell	MSc; PhD
Jill Moss	BA; MEd (Special Needs)
Jacqueline Siner	BA; MA; MSc; CPsychol; AFBPsS
Dr Nigel Speight	MA; MBBCh; FRCP; FRCPCH; DCH

For further information on specific contents, please contact:

Dr Alan Franklin (Medical Section) at the ME Association
Jane Colby (Education Section) at Young Action Online
Jill Moss (Social Services Section) at AYME

1		Introduction

2		Medical Section
2.1		Clinical presentation and diagnosis
2.2		Neurocognitive and psychological problems
2.3		Management
2.4		Epidemiology
2.5		Prognosis

3		Education Section
3.1		Introduction
3.2		Purpose of education
3.3		Effects of ME on cognitive function
3.4		Effects of ME on physical performance
3.5		Implications for school based learning
3.6		Special educational needs
3.7		Wider implications for education
3.8		Joint health-education plans
3.9		Social education
3.10		The multidiscliplinary approach
3.11		Statementing
3.12		Assessment and examination
3.13		Post 16 education
		Appendix to education section

4		Social Services Section
4.1		Statutory social services
4.2		Non-statutory social support services

5		Service Facilities

6		Summary


Appendix A		Case Studies

Appendix B		Authors and Referees

Appendix C		Diagnostic Descriptions
1		Clinical features of myalgic encephalomyelitis (ME) (Ramsay 1986)
2		Diagnostic criteria for chronic fatigue syndrome (Fukuda et al 1994)
3		References
4		Resources

The National Task Force on Chronic Fatigue Syndrome / PostViral Fatigue Syndrome / Myalgic Encephalomyelitis published a report in September 1994. This was followed by a report from the Royal Colleges of Medicine, Psychiatry and General Practice, published in October 1996. Although there were sections in each report about the illness in children and young people, it has become evident that there is a need for more detailed information about diagnosis, management, and education of young people with ME. These guidelines have been written by members of the medical and educational professions who understand the problems this illness causes for children and their families.

In recent years, ME/CFS has increasingly been accepted as a clinical entity. In July 1998 the Chief Medical Officer, Sir Kenneth Calman, announced before retiring that the Department of Health recognised the existence of this illness, and that a working party would be established to produce advice and information .

Our intention is to provide information about the existence and diagnosis of the illness in children, for all professionals and families who are involved with young people suffering from ME. Although in these guidelines published evidence is referred to where it exists, much of the information is distilled from the clinical experience and observations of practising paediatricians who have cared for many young patients with ME/CFS.

An illness with clinical features of muscle pain, neurocognitive problems and exercise induced fatigue has existed for centuries. In the 20^th century, epidemic outbreaks were recorded from 1934 until the 1950s. Earlier names included ‘English sweats’, ‘epidemic neuromyesthenia‘, and ‘atypical polio’. The term myalgic encephalomyelitis (or ME) was coined in 1956, (Ramsay 1985) following a series of world-wide outbreaks, and ME has been well documented in children. The name chronic fatigue syndrome (CFS) was preferred for the diagnostic criteria developed in the USA in 1988. CFS is the name used by doctors internationally, especially for research, however, the illness is still called ME by patients and many doctors. We believe the name ‘myalgic encephalomyelitis’ (or encephalopathy) is more appropriate than ‘chronic fatigue syndrome’, as it describes a specific condition with muscle and neurological symptoms, not only fatigue. In this document both names may be used.

Clinical observations and research evidence point to ME being a real, organically based illness which affects many organs in the body but particularly the brain. As with neurological disorders such as brain tumour or multiple sclerosis, ME may produce bodily and neuro-cognitive symptoms. The brain disturbance leads to cognitive problems, autonomic nervous system dysfunction, and emotional symptoms. Secondary psychological problems due to the effects of the illness may complicate the picture, as with any chronic condition.

Most paediatricians with an interest in this illness comment on the remarkable resilience of children with ME. Many children and their families show no psychological disturbance, in spite of sometimes severe and prolonged illness in the child. However children with ME do become very frustrated that they cannot take part in normal activities at home and at school.

The most important first step is to establish the diagnosis. Medical management is based on recognition of the symptom picture and hence diagnosis, followed by an explanation about the illness, with symptomatic treatment and support by other professionals. The majority of children make some recovery, especially if they are emotionally supported and allowed to rest. However in a few children, ME may lead to chronic illness and severe disability.

Potential problems for any child with long term illness include loss of schooling and social contact with peers. There are conflicting needs of ensuring some level of ongoing education, while allowing the child to recover without being pressured into returning to school too quickly, or meeting unrealistic goals. Some pupils may be too severely affected to contemplate any form of education.

"No-one who has experienced this illness, or who has had the responsibility of caring for a family member who has the misfortune to suffer from it, can have any doubt not only about the extent of the pain and distress it can cause, but also as to the disastrous effect it can have on social relationships and life in the community. This is particularly the case among child sufferers, for whom the effect upon their educational development and social well-being may be catastrophic, particularly when child and family encounter unsympathetic professionals. The consequences may last for years". (Pheby, 1997)

One of the greatest sources of anxiety to many parents is to observe a sick child whose illness is not recognised and named. Parents may fear their child has a serious or malignant disease which the doctor is missing, and to be told "all the tests are normal" without being given a diagnosis can be extremely frustrating. Furthermore, when children are unwell, but at the same time their illness is not validated or is undiagnosed, this discrepancy may affect how they are treated by both family members and professionals.

Special diagnostic criteria for children and adolescents have not yet been defined. The diagnostic criteria for CFS in adults (Fukuda 1994) were defined chiefly for research purposes. Young patients may not always fulfil CFS criteria, and yet still have a typical clinical picture of ME/CFS. (See Appendix C for description of ME - Ramsay 1986 - and the CDC 1994 criteria for CFS). There are some clinical features in children that are different from those in adults, especially in children under 10 years of age. The onset is often more gradual in young children, and their daily behaviour is more variable, without a clear history of an initiating infection. Certain symptoms - intractable headache, abdominal pain, loss of appetite, and nausea - are more common in children. There is no clinical difference, once the illness is established, between children whose onset is rapid, usually following an acute febrile episode, and those with a gradual onset, as is seen more often in young children.

The diagnosis is more difficult in young children because they cannot articulate symptoms such as fatigue and cognitive difficulties. Parents and teachers need to observe and assess symptoms such as onset of pallor and exhaustion, both in and out of school. Their observations of children or pupils whom they know well should be respected.

It is better for the child and family to allow for a firm diagnosis after 2 to 3 months of symptoms, instead of the minimum of 6 months as required for adults (Royal Colleges 1996), because good management can be instituted early in the illness and might prevent further deterioration.

A marked feature of ME is the fluctuation of symptoms from day to day, and the tendency for relapses and remissions over months. There is a combination of key symptoms that is remarkably similar from patient to patient: Post-exertional fatigue, malaise and cognitive dysfunction are invariably present. It is important for medical professionals to recognise the multiplicity of symptoms that commonly occur, as well as ‘fatigue’.

Severe cases of ME. The more severe forms of the illness in children and adolescents include symptoms such as dizziness, unremitting headache, severe muscle spasms that may require splinting to prevent contractures in the hands or feet, shaking episodes or pseudo-seizures without loss of consciousness, difficulty swallowing and paresis or paralysis of limbs, bladder irritability and a disturbed mental state.

Many of these conditions are rare, but may be worth excluding in individual patients.

ME/CFS compared with Depression, Anorexia Nervosa, School Phobia, and Somatization.

It is important to distinguish ME from primary depressive illness (which can occur in childhood), anorexia nervosa, and phobic anxiety state. Primary depression in childhood may be difficult to diagnose, and severe depression in childhood can occur in its own right as a biological condition, for example at the beginning of a psychosis. If emotional symptoms are apparent, it is important to explore their origin. For example, were they present before ME started, or did they coincide with the onset of the illness? Or has depression developed after months or years, secondary to the persistence of the illness?

There is uncertainty about the role depression might play in young patients with ME. Family dynamics form a good guide, and a well functioning family is less likely to produce a depressed child. It is important to look at the intra-familial communication and autonomy that existed before the onset of symptoms of ME, before assuming that depression could be the cause of the child’s symptoms. The modern trend is to regard most depressive symptoms in young people as a mental reaction to an underlying chronic organic illness, or to severe adverse circumstances, and many children and young people eventually develop depressive symptoms with any chronic illness. (Koplewicz and Klass 1993)

It is quite common for children and adolescents to develop anorexia secondary to ME. This is frequently due to nausea, and/or to muscle fatigue which affects chewing and swallowing. This loss of appetite and reduced intake might be confused with anorexia nervosa, especially in girls in early puberty. Anorexia nervosa is associated with a distorted body image, self induced vomiting, progressive weight loss, and frequently abuse of laxatives.

It is important to make the distinction early if weight loss occurs. The most important distinguishing feature of anorexia nervosa is a distorted body image and a phobic refusal of food, coupled with a fear of getting fat. Although weight loss is commonly seen, some young people with ME gain weight, and obesity may be associated with comfort eating, lack of exercise, or possibly water retention .

Phobic anxiety state, particularly school phobia, is associated with panic attacks and use of the avoidance response about the most feared situation. Symptoms associated with school phobia usually resolve during weekends and school holidays. This does not occur with ME, whose symptoms may be worse at weekends and persist through school holidays, when children try even harder to tackle the activities they enjoy face on with the family. The main reason that the pupil is reluctant to go to school is because of rapid onset of fatigue, myalgia, and loss of concentration after a short time in class.

Somatization disorder may resemble ME in that the patient has multiple symptoms which cannot be explained by any known medical condition or by use of abusive substance or medications. In ME there is typically no secondary gain from having the symptoms, whereas this is a common feature with somatization. When evaluating the child’s bodily symptoms, it is important to be aware that a child often cannot articulate about the condition, and may be stressed by the attitudes of others to the illness. In a few cases, somatization could be difficult to differentiate from ME, and there may be hidden stresses; a child can be unwilling or unable to communicate about sources of anxiety.

A study in the US evaluated the symptoms, severity, social support and ways of coping in 69 adolescents with ME/CFS. The results showed nothing to suggest that ME is primarily a psychiatric or psychosomatic illness, nor that adaptive coping styles reduced the severity of the illness. (Bell, 1996). However exposure to stress does increase the severity of the symptoms. The existence or incidence of co-morbid psychiatric illness in ME patients under 20 years of age has not yet been formally established, but is probably present at the same incidence as in the general population.

Medical investigations should exclude conditions such as those listed above, and might include as appropriate:-

Because the diagnosis of ME/CFS is based on clinical features, excessive investigation should be discouraged, and is unlikely to profit the child or investigator. Careful and long-term follow-up is essential, either to confirm the diagnosis, or to review each symptom in case a second disease process is operating.

There is still uncertainty about the patho-aetiology of ME and CFS. Several studies have suggested that viruses may initiate the response (Komaroff 1996) but there is little laboratory evidence to suggest persistent infection (Gow 1997). Clinically there are similarities between post-polio syndrome and ME/CFS (Bruno 1996), suggesting a common response to specific enterovirus infection. In some patients there is reduced circulating blood volume, which contributes to the postural hypotension (dizziness and confusion when upright) so frequently experienced (Streeten and Bell 1997).

Low dose chemical exposure is known to have a damaging effect on the central nervous system, and ME is clinically similar to illnesses resulting from known organophosphate exposure (Behan 1997), and to Gulf War illness (Jamal 1996). Publicity has been given to the possible role of OP poisoning in causing ME in some children who have been treated for head lice using a pesticidal anti-lice shampoo containing OPs.

Stress, in its broadest meaning, is a precipitant of ME/CFS, and in most cases is probably a co-factor with other triggers that include infection, immunisation or chemical exposure.

In trying to co-ordinate the many research findings, Professor John Dickenson (1997) has drawn attention to the effects of damage to the Reticular Activating System in the mid-brain and brain stem, producing many of the reported symptoms of ME. Some researchers have proposed that pre-existing psychiatric disorder, mainly depression, may be a predisposing factor for ME/CFS (Cope 1994) but there have been no studies to date which implicate this causative factor in children. Kopelwitz and Klass (1993) state in their book on Childhood Depression that nearly all children with a chronic illness eventually develop depressive signs, even if they are secondary to an original organic illness.

The illness has consistencies that allow it to be diagnosed as an entity; however it is becoming increasingly obvious that it may be triggered by a number of different factors. There may also be a genetic predisposition, in view of the not uncommon occurrence of ME affecting more than one member of a family.

ME is an illness that affects the central nervous system, and therefore has identifiable effects on brain functioning. Cognitive disturbances are part of the illness, and produce lack of concentration, short term memory loss, confusion, and also nominal aphasia. In addition to this, many children with ME suffer episodes of mood disturbance, such as depression, irritability, frustration and anger, and these may be part of the brain disturbance as well as being secondary to the effects of the illness on daily life. Because of the chronicity of the illness there is frequently loss of normal childhood and adolescent activities (school, friendships, sports, going out with peer groups). This can lead to isolation at home, being ‘passed by’, and sometimes to depression or despair.

One serious consequence is that adolescents with ME may remain at an immature level emotionally, and become too dependent on a parent, usually the mother. But more often, children who suffer from long and serious illness develop an emotional maturity beyond their years. Such maturity may however be unhealthy, and can be associated with loss of normal childhood and adolescent stages of emotional development.

One outstanding mood in the child with ME is frustration, rather than depression. In a small number of cases, abnormal illness behaviour or total withdrawal may develop. These behavioural problems can also feature in other chronic illnesses and are not confined to ME, or to children.

In most chronic illnesses, the patient and family’s attitude to the illness follows a series of changes. Doubts regarding the nature of the diagnosis may arise in some family members, (but usually not mothers), leading to denial, anger, depression and eventually acceptance. A family member’s belief about the illness may influence the sick child’s response. The illness causes total disruption to normal family life, leading to sorrow, depression, and loss of spontaneity. ME has a huge impact on the family.

Conflicting advice from health professionals can mean that the parents are confused: on the one hand they may be encouraged to treat the child as being ill, on the other hand they may be urged to treat the child as normally as possible. Familial overprotection may need to be considered if an attitude of rigid obstruction develops to prevent medical intervention, but Munchausens syndrome by proxy is rare and should not normally be considered. It is the normal response of a parent to be concerned about a sick child, and to explore all possible means to secure recovery.

Parents of children with any chronic illness may be perceived as being overprotective by health and education professionals, and this inappropriate accusation is often levelled at the families of young ME patients by professionals who do not understand or accept the profound impact of this illness on the parents. The emotional issues arising from ME are often compounded by ignorance, prejudice, or conflicting opinions of the professionals involved with child and family. Sometimes members of the extended family, such as grandparents (who may hold old fashioned views about illness) may be influential in determining the parents’ responses to the child’s illness.

Most parents find managing their child’s illness extremely difficult. For example enforcing the best balance between rest and activity, and of finding a balance between giving some independence and privacy and giving enough support without encroaching into the child’s needs to have some personal control. If a child does not improve, or deteriorates, the parents may feel they are somehow to blame, or else may blame outside professionals who have been trying to help (either of which may be correct). Ongoing medical support and good communication from the medical profession are very important.

Research has shown that the brothers and sisters of children who are seriously ill can suffer adverse effects. In a study (Sloper,1996) of the siblings of child cancer sufferers, 6 months after diagnosis 24% of siblings were showing adjustment problems and behavioural difficulties. In interview the siblings said they felt resentment at the lack of attention they received, and guilt that they felt resentful. Many mentioned their sadness at the loss of normal family life. Although there are differences between these conditions, siblings of children with ME are likely to experience similar effects.

2.3.1 The first step in management should be a diagnosis, which should be based on the pattern of symptoms over an appropriate period of time (2-3 months or longer), and will also involve the exclusion of other conditions which could be causing fatigue and other symptoms. The doctor who confirms the diagnosis should take time to explain the nature of the illness to the patient and the family, how it will affect the child's future progress and prospects, and its impact on the family.

Recognition of the illness by the medical practitioner will help to establish a bond of trust between the doctor, patient and family, and it is important to recognise the value of this in the ongoing management. Where the diagnosis is uncertain, a further opinion should be sought from a colleague with more experience or specialist knowledge.

The patient and family may need financial and welfare support, such as DLA and carers’ allowance, and community care of a chronically ill child may be difficult to achieve. (See Social Services Section).

If possible, most children should be managed in their own homes, under the supervision of their local primary care teams, with appropriate out-patient support where possible from a paediatrician with experience of the illness. Numerous GP surgery visits and hospital appointments can be energy and emotionally draining, especially if the outcome of such consultations is unhelpful. However most families find it helpful to see the family GP regularly to monitor progress and to assess any new symptoms (which could be due to other illnesses).

However, we recognise that at present many GPs lack experience in the recognition, diagnosis and management of ME/CFS, and hope that these guidelines may go some way to informing health care professionals about the illness in childhood. The GMC has issued appropriate guidelines (Duties of a Doctor, 1995) which could help to prevent the confrontational attitudes which often seem to develop in the medical management of ME/CFS.

Reference to child psychiatrists may be perceived by the family as threatening, although in practice many psychiatrists fail to find any psychiatric illness in children with ME referred to them. A psychiatric opinion may form part of the initial assessment, to identify possible aggravating psychological factors. If stress has been a causative factor then this needs to be addressed, as do any continuing emotional pressures on the child from family or school.

Professional mental health services, such as family therapists who understand the severity and impact of the illness, may be able to help children and families deal with the emotional problems that can develop in the child, parents or siblings, as with any prolonged childhood illness. (Koplewitz and Klass 1993)

If a child has to be admitted to hospital for investigations or intervention for an acute problem (e.g. instituting naso-gastric feeding) due to ME, this should ideally be on a short term basis, to a medical paediatric unit, with access to psychiatric input ifthis is needed. The experience of a typical hospital ward can be intolerable for anyone with ME because of the stress of the environment - constant noise, bright lights, disruption to the routine - in addition to any lack of understanding from nurses and doctors. Hospitals are not good places for restful sleep!

The most important measure for children and adolescents is to be able to recognise their energy limitations, and to learn to stop before they become too tired. This is difficult for adults and almost impossible for children. Ideally an individual daily timetable should be discussed with the child and family, one which enables the sick child to live within his or her limits without increasing symptoms, and in which the activities can be repeated daily without distress. In practice this is very difficult, especially for ill teenagers, who may rebel against imposed rules or timetables. And in addition, ME is an illness characterised by fluctuating energy and symptoms, so it may not always be feasible to follow a strict daily timetable, especially if there are unforeseen stresses (e.g. an infection or family crisis), which can lead to increased symptoms or a relapse.

When considering how much activity should be undertaken, it is important that young patients, parents and advising health professionals should recognise whether the child is in an acute stage of the illness when increasing activity is counterproductive, or in a stable phase with few symptoms other than fatigue, when cautious increase in activity should be encouraged. (Franklin 1994)

However, many ME patients already operate at the limit of their energy levels, and for these any increase in activity may be inappropriate (Friedberg and Krupp 1994). Clinical experience suggests that exercising beyond the individual's energy limits could be as harmful as absolute rest, and this has been confirmed in recent studies by an exercise physiologist at the University of Pacific, USA. (Stevens 1995), and by Dr Charles Lapp (Lapp 1997).

Evidence of defective muscle metabolism in some cases of ME, (Lane 1995, Behan WMH, 1998) could explain why overenthusiastic rehabilitation programmes using graded aerobic exercise may fail in some children, and often leads to increased disability.

Total bed rest is harmful, except for a short time during the acute phase, and leads to postural hypotension (low blood pressure) and loss of muscle strength. However most young ME patients retain muscle tone, and get up for toilet purposes even when in a relapse. These complications can be minimised during an acute phase of illness by the application of gentle passive physiotherapy.

The best way for a child to maximise energy and improve daily functioning is by careful pacing of activity - i.e. alternating activity and rest, and also alternating physical with mental activity. (Westcare: Task Force Report, section 14, pp 66-69). The eventual aim is for gradual increase in overall activity, as the child’s tolerance improves.

C.B.T. has been advocated as a way to improve functional activity in some adults with ME/CFS (Sharpe 1996), but has not been formally evaluated in children. However, a team at St Bartholemew’s Hospital in London recently reported a pilot study of a multidisciplinary inpatient rehabilitation programme, using CBT and graded activity, for severely incapacitated adults with ME/CFS. (Essame 1998) None were cured, but most improved their fatigue scores (Karnofsky) using a biopsychosocial approach. It may be more difficult to apply these methods to children, although addressing the problems of sleep disturbance, general weakness, and weight loss would be relevant. A key feature in this study was the care planning with family members prior to discharge from hospital.

In severe bed-ridden cases, gentle physiotherapy can be given to maintain muscle tone and joint mobility. This can be taught to parents by a physiotherapist who understands the illness. Fixed contractures of fingers may sometimes develop in severely ill patients who have uncontrolled muscle spasms, and splinting may be necessary.

Gradual increase of an activity agreed with the individual child may be encouraged at weekly or fortnightly intervals. But rigid physiotherapy regimes that are beyond the ability of a sick child are potentially physically harmful and emotionally abusive.

Clinical experience confirms that mental activity is also energy consuming (Deluca,1995; Smith,1996) so that immediate return to school without recognising this should not be encouraged (Colby 1996), even though most children want to return to the company of their peer group as soon as possible. When they are able to do so, they find this to be a positively motivating experience, but if pressed to return to school too early, it can have a negative impact. (See Appendix A, case history 2) Re-entry to school should be gradual and planned with the school authorities.

The experience of US paediatricians (Bell 1996) suggests that a school child should be capable of spending up to three hours in a public place - e.g. shopping centre - with friends, without subsequent deterioration in the following 12 to 48 hours, before they are ready to return to school.

A key feature of ME/CFS is exhaustion from social interaction, whether talking and listening face to face with more than one person, or using the telephone. This has far reaching consequences especially for young people, however much they want to be with their friends. Other peer group friendships can however be developed using support groups for young ME patients (see Resources)

A properly balanced diet of mainly fresh foods is appropriate for most young patients. It is important that the child with ME has enough calories and protein for growth, and that if there is loss of appetite the meals are appetising and easy to swallow. The diet should include complex carbohydrates to prevent symptoms of hunger and faintness, which are common in ME due to autonomic dysfunction. Small frequent meals may be easier for a sick child with poor appetite to cope with.

Special exclusion diets for food allergies or intolerance are not needed for most children, although a proportion of them may have experienced diet dependent migraine before the onset of the illness. If they have significant symptoms suggesting food intolerance (for example migraine, joint pains or gastro-intestinal symptoms), a dietetically supervised exclusion diet of a few safe foods for 7-10 days may lead to significant improvement. In view of the immune system involvement (Tirelli 1996) it is not surprising to find indigestion and intolerance to foods developing.

The most common foods worth testing by elimination and challenge are: Milk and milk products, wheat, sugars, citrus fruits, and chocolate. (Hadisavassiliou 1996).

Severely affected cases with anorexia (not Anorexia Nervosa) and nausea may become malnourished and fail to maintain weight. The nausea is centrally mediated, and is a very common symptom of ME/CFS (Komaroff 1995). Poor food intake can also result from weakness of the chewing and swallowing muscles. Liquid oral feeds or even naso-gastric tube feeds may get such children through a difficult patch, provided they are tolerated by the child. A regime of liquid or tube feeding can be established in the patient's home with appropriate supervision from a district nurse and children's dietician.

There is no curative drug treatment, however certain drugs can help some symptoms. It is generally accepted that treating sleep disorder, depression, or pain where these are prominent, improves the quality of life. ME/CFS patients of all ages are usually highly sensitive to psychoactive drugs, and extreme caution with dosage in children is needed.

Analgesics Simple painkillers including paracetamol and non-steroidal anti-inflammatories can be tried. Severe migraine may be helped by specific drugs - for example Migraleve or Imigran - but only in adolescents over 14 years.

Diamox (Acetazolamide) may be effective for severe intractable headaches, which may be associated with low circulating blood volume (Streeten and Bell 1998).

Muscle relaxants Magnesium has been anecdotally reported by some adults to help muscle spasms and insomnia, taken by mouth. Intramuscular magnesium, though promoted in one earlier trial, is no longer considered appropriate, and is very painful. Occasional diazepam (Valium) can be tried for severe muscle spasms, but tends to be addictive.

Antidepressants These may be required if sleep disorder and /or depression are present, but do not cure the underlying condition. SSRIs (fluoxetine, sertraline etc) are not recommended for children, and a double-blind controlled trial of fluoxetine (Prozac) found it had no benefit over placebo for adults with ME/CFS. (Vercoulen 1995). However, anecdotal reports show that tricyclic antidepressants used in small doses (e.g. amitriptyline, dothiepin, doxepin, starting at 10mg nocte) may be useful to treat sleep disturbance, and reduce anxiety and pain. An alternative remedy, Hypericum (or St John’s Wort) has been found to be as effective as amitriptyline for moderate sleep disorder and depressive symptoms (Linde 1996).

Hypnotics Temazepam in a moderate dose can be used occasionally, but is not recommended for children, and the benzodiazepine group of drugs are addictive. For persistent sleep disturbance with frequent waking and nightmares, low dose tricyclics seem to be the best option. Melatonin has also been suggested as being vital to maintain the body’s diurnal rhythms and promote sleep at night, however there is no information about its relevance in children (Soutzos 1998), and at present it is not available on prescription in the UK.

Anecdotal experience has shown that immunisations may bring on a relapse in ME/CFS. As with any illness, non-essential immunisations should be avoided until the child is well.

The psychological effects of being seriously ill must be taken into account in the management of ME/CFS. One of the most damaging psychological effects for the child will be the feeling of having no control over what is happening. Another is the effect of having to cope with the attitudes of others who misunderstand and trivialise the illness. This can cause further withdrawal from society to avoid the pain of insensitive or hurtful comments.

From a review of research on psychological issues for children who are ill or disabled, Prosser (1992) concluded that the right to exercise a level of control over one’s life is essential for self esteem and optimal psychological development. Good psychological management of the child with ME would include restoring to him or her an element of control, as described in Higgins and Siner (1996).

The GMC advises doctors to respect the rights of patients to be fully involved in decisions about their care. Article 12 of the UN Convention on Rights of the Child (1991) makes it clear that children and young people have the right to participate in decisions about themselves. Ambiguity about the diagnosis of ME adds to the difficulties the child may experience within the family. In some cases, family therapy linked with ongoing GP contact has been useful in helping the child, and enabling the parents to feel more competent about their parenting. Good psychological management will not underestimate the importance of maintaining a healthy self esteem, and any attempts to involve adolescents in cognitive behavioural therapy should hold this to be of primary importance

Young people with ME are often adolescents, at a time when personal appearance and conforming with peers is very important. Being unable to take part in the same activities as friends, and having little contact with them, may cause feelings of isolation. Some severely affected youngsters have no social contact with their peers for months or years. Social support groups can help by enabling contact with others through post, phone or E-mail (see Appendix C). A common source of distress is the inability to attend school full time because of the limitations imposed by the illness, and the resulting loss of education. Liaison with and informing school authorities about ME/CFS would assist teachers to deal with the variability of the illness in a particular child. (see Education, and Resources)

We are aware of the views of some child and adolescent psychiatrists, which concentrate almost entirely on possible psychological causes of ME/CFS, and/or the psychological responses of young patients. It is appropriate to take into account the psychological responses of a young person to the illness, however this should not be considered in isolation from the physical features of the illness.

The use of cognitive behaviour therapy, for example, can be useful by enabling the child to rethink feelings of helplessless and lack of control, or feelings of lack of worth. But CBT is not helpful when attempts are made to get children to rethink themselves out of a state of physical illness. Intensive regimes of graded exercise and therapy within in-patient psychiatric units are often counterproductive for this reason.

Many accounts have been documented since 1934. Of these, thirteen make specific mention of children, and one is concerned wholly with this age group (Bell 1992, ‘Children with ME/CFS - an overview of literature). Most of the accounts of outbreaks of ME in children and adolescents find peak prevalence at puberty, and seven note the relapsing nature of the illness, and tendency to chronicity. Three documented outbreaks specify a predominance of female gender, summer/autumn onset, and clustering of cases in schools or families.

An outbreak in Iceland in 1947-8 was documented by Sigurdsson (1950) under the description "a disease epidemic simulating poliomyelitis." There were over 400 cases, and the outbreak centred on the high school in Akureyri, where teachers were also affected. The peak age was between 15 and 19 years with a 3:1 female to male ratio. Of those affected who are still alive, most still have disabilities today (Hyde 1988). In a Lancashire epidemic (Lyle 1956) children bore the brunt of the illness, which clustered in schools and families; Echo 9 enterovirus was isolated. In 1959 Acheson reviewed 15 outbreaks worldwide, noting, in particular, late childhood onset and chronicity.

The largest epidemiological study of ME in children and adolescents to date is by Dowsett and Colby (1997), and findings mirror those of earlier studies. Schools’ long-term sickness absence statistics were collected over a five year period from 1991 to 1995. Since the 1991 School Attendance Regulations made it obligatory to categorise absences from school as Authorised or Unauthorised, head teachers have had a duty to establish the genuineness of cases of long-term sickness absence. In this study, the resulting (confidential) documentation such as doctors’ letters and medical certificates represented a widespread section of the medical profession, due to the geographical locations of the six Local Authority Areas studied.

51% of all long-term sickness absence in the studied pupil population of 333,024 had been identified as ME (although the criteria for diagnosis were not specified for each case). The next largest cause - cancer and leukaemia - represented 23%.

The diagnosis was significantly associated with case clustering, variable geographical prevalence, a marked increase in the female:male case ratio after puberty, and prolonged disturbance of educational potential. Prevalence was estimated at 70:100,000, (0.07%) with the peak age being at 15 years. (The prevalence among staff was 0.5%, considerably above population average.)

An indication of the effectiveness of differing educational management programmes was the fact that Education Authorities offering higher rates of home tuition and modified timetables were less likely to see pupils being withdrawn from the school roll entirely.

In a study in two London boroughs of one of the LEAs used for Dowsett and Colby’s study, Dr M.L. Arzomand (1997) found similar total prevalence (0.07%) in Merton and Sutton together, but a significant difference of case distribution in these two neighbouring boroughs with the same populations, which indicated clustering of cases.

2.4.3 A study (a randomised telephone poll) in San Francisco (Steele 1996) found 2 per 1000 of the population of nearly 17,000 who had self-reported symptoms which corresponded with the cdc 1994 Fukuda criteria for CFS. Unexplained chronic fatigue was extremely rare under 18 years, and no case under the age of 11 years was found, but this could be explained by the strict criteria used. The prevalence in adolescents was therefore less than in the adult population. Further analysis of these data would suggest less than 0.2% or 2 per 1000 in the adult population, and probably half that number in the adolescent population.

At present there is not enough evidence to make a definitive statement. Several authors have published follow-up studies of paediatric ME/CFS patients. Dale and Strauss (1992) considered that young patients with CFS have a high probability of recovery within the first 1 -2 years, but that after longer periods of illness the recovery rate is less. There was an outbreak in Lyndonville, N.Y. state, in 1985: "104 patients were identified who retrospectively met criteria (for CFS). 44 patients were under 18. All were followed up for at least two years, when only four children had made a complete recovery." (Bell 1992). In 1998 David Bell presented findings (at a conference) from 15 year follow up, which found that after 15 years 20% had not recovered.

Feder (1994) in the USA claimed about 90% recovery over 5 years, most of whom recovered in the first 2 years. This was a selected district population of mild to moderately ill children and did not include the more severely disabled.

Clinical experience suggests that younger children recover more fully than adults, but that younger children with a gradual onset may run a more protracted course. Because ME is characterised by fluctuations in energy and symptoms, often with remissions of weeks or months followed by relapses - which usually result from stress or over-exertion, a child who appears to be recovering needs to be careful about exercise for at least a year. The more severely ill children may take a very long time to recover (>7 years), but such assessments are seriously flawed by the absence of a reliable comparison. ‘Recovery’ means the achievement of an acceptable life style in comparison with a ‘normal’ adult population. There are different degrees of recovery from a return to a tolerable energy level and lifestyle, to complete recovery to the pre-illness activity potential. It is possible that many people with ME/CFS who ‘recover’ have in fact adapted to a lower energy level and modification of lifestyle. What is unknown is what quality of life would have been achievable had the person not become ill in the first place.

We remain very guarded as to individual prognosis. David Bell’s study, presented in San Fransisco, concluded that there were no clear pointers to the predicted course of the illness in any individual child. (Bell 1996)

Since 1994 (Section 298 of the Education Act), all Local Education Authorities (LEAs) are obliged to arrange suitable education for children of school age who are out of school because of illness or injury. They may do this through home tuition, through hospital schools or tuition services, or through an integrated hospital/home education service. In addition, under the 1993 Education Act, maintained schools "must use their best endeavours to make provision for pupils with special educational needs." (Code of Practice)

ME/CFS often leads to chronic illness, resulting in long-term absence from school at rates in excess of any other medical condition (Dowsett and Colby 1997). If return to school occurs too early, or is not managed very gradually, together with disapplication of National Curriculum requirements for Physical Education, severe relapse can result. Cognitive deficits are also exacerbated by physical or mental over-exertion. (Bell 1995, DeLuca 1997) These factors place ME within the spectrum of medical conditions producing special educational needs.

The Code of Practice on the Identification and Assessment of Special Educational Needs, issued by the Department for Education and Employment, is designed to help schools and LEAs make effective decisions for children deemed to have such needs. A Statement of Special Educational Needs may or may not be made, but in all cases "LEAs, schools, and all those who help them work with children with special educational needs, including the health services and the social services, must have regard to the Code." The Code makes it clear that LEAs are empowered "to arrange for some or all of a child’s special educational provision to be made otherwise than at school."

N.B. The Northern Ireland Code of Practice for the Identification and Assessment of Special Educational Needs makes specific reference to ME/CFS as an example of medical conditions which should be taken into account when assessing a child’s Special Educational Needs.

Education for children and young people with ME needs to be tailored to their specific needs in order for the above to be achieved.

Language use may be severely impaired. The pupil may lose access to a whole range of vocabulary, being unable to recall simple words, and may find difficulty with written words.

Problems with speaking may include slurred speech, the reversal of word-order and the speaking of different words from those intended.

Pupils may listen to a teacher's explanations, recognising each word separately, without being able to deduce any meaning from the combination of the words into sentences, as if the teacher were speaking in a foreign language.

Speaking can be difficult and exhausting for a pupil with ME. The pupil may forget vocabulary or may speak quietly and slowly, because it is too physically exhausting to project the voice more loudly. This can be wrongly interpreted as depressive behaviour.

Numerical calculation may be severely impaired, not only high-level information processing. For example pupils may no longer be able to count a handful of money correctly, although they may know the value of each coin separately. Pupils may have trouble understanding a simple graph or table of mathematical information, although they know what each isolated figure represents.

Cognitive fatigue means inability to concentrate for normal periods of time. The pupil’s ability to focus on mental tasks wanes, with serious implications both for working to the expected timetable, and for coping with examination schedules. Continuing work when cognitive fatigue sets in generally aggravates symptoms. The brain becomes unable to perform, and if the pupil then makes a great effort to continue mental work, this often results in physical deterioration a day or so later. If cognitive difficulties are not fully appreciated, school staff can unintentionally add to a pupil's distress by implying that they are lazy, or not paying attention.

Moving about is very exhausting for pupils with ME. It is known that inappropriate exercise may lead to relapse. (Lapp 1997; Bell 1995) There is also evidence that the enforced exercise needed for most physical education can be damaging, causing deterioration. (Vereker 1992).

Sitting in an upright chair may cause exhaustion and pain, and affect concentration. Carrying books and bags may be exhausting. Writing by hand may not be possible for long. Speaking may be difficult, singing may be impossible.

The nature of schools is such that school may not be the ideal place for a child or teenager with ME to thrive educationally:

Pupils with ME are likely to tire if they have to walk long distance between lessons, and also have to carry books and equipment around, as is usually the case in secondary education, a peak age for the illness.

Pupils may be especially sensitive to light, sounds, temperature changes and smells. Fluorescent strip lighting, often used in schools, or direct sunlight, may be intolerable. Ordinary classroom noise, or the magnified noise of assembly or dining halls, may cause great discomfort.

Normally harmless smells of chemicals used in science, cleaning or the art room, may cause headache and nausea.

Feeling unusually hot or cold may mean the pupil has to add or remove layers of clothing during the day.

The pupil may need food at unscheduled times if there is a tendency to symptoms suggesting low blood sugar (very common in ME). Appetite disturbance, nausea, or food intolerances may require the pupil to eat or avoid certain foods.

The pupil may need to visit the toilet more frequently than normal, and toilets may be far from work areas.

Reversal of normal day/night sleep rhythms may result in the pupil falling asleep in class in the morning. Unpredictable mood swings, irritability or fatigue may mean that the pupil appears sleepy, irritable or emotionally ‘high’, needing sensitive handling by staff.

Schools with pupils who may be at various stages of recovery with ME need to consider how they can offer a flexible response to these difficulties. The school will need to consider:

A child diagnosed with ME should be at Stage 2 or beyond in the process of Special Educational Needs assessment as detailed in the Code of Practice. An Individual Education Plan (IEP), written and monitored by the Special Educational Needs Co-Ordinator (SENCO) in each school, coupled with good home tutor and parent liaison, should ensure that children with ME are not overloaded on their return to school in order to ‘catch up’ with work, which only produces further illness.

Careful planning, combined with special arrangements from examination boards, can ensure that only the most necessary work is set. This enables a better standard to be attained in these pieces of work.

In the case of a child whose education is disrupted due to serious illness, it is advisable to seek the advice of an educational psychologist employed by the LEA. An educational psychologist will have an understanding of the psychological issues of the illness, and educational needs. As such he/she will be able to advise the child parent and school in agreeing a flexible response to the child’s needs. Educational psychologists also need to understand about ME.

Severely ill pupils will be at home and possibly bedbound, with no possibility of doing schoolwork. Such a pupil will normally remain on a school roll during what may be a long recovery period. The ability to begin academic work of some kind at home may return long before physical recovery occurs sufficiently to allow school attendance.

Once a severely affected pupil has recovered the ability to concentrate without bringing on physical symptoms, work on a part-time basis can resume through the home tuition service. Home tuition is usually short-term, but in practice there are a number of education authorities who accept that ME is an illness requiring long-term arrangements, and respond accordingly. (Education appendix )

The dilemma faced by schools, LEAs and doctors revolves around identifying the best time to re-introduce the pupil into the school environment. It should be remembered that the purpose of education is to educate, as defined in Purpose of Education, and the environment where this takes place is a separate issue.

The environment in which education takes place should be that which maximises the pupil's educational achievements. Decisions about school attendance should not follow conventional procedure just because it is the norm, nor be made for social interaction (which can be provided for separately), nor because education in school may be cheaper.

When deciding on the best learning environment for a child with ME, it is important to take account of possible effects on the pupil of mental or physical effort. In this illness there is typically a time-lag between the effort and any resulting debility or symptoms. The onset of symptoms may occur up to 72 hours after the effort has taken place, and may not always be apparent to the teacher or home tutor.

School staff and other professionals may only have the parents’ description of any reaction occurring after effort. This can lead to a breakdown of understanding. The parents may be considered over-protective as a result. It is advisable for the Educational Welfare Officer to be involved in home-school liaison, visiting the home regularly to see how any activities may have affected the pupil. It is important to remember that someone with ME can make a great effort for a short time, even during the visit itself.

Government publications emphasise that parents should be partners in decisions affecting their children. Doctors and education authorities should put this principle into practice.

Pupils with ME need a flexible system of education which is dictated by their state of health. A Joint Health-Education Plan, as recommended by the National Association for the Education of Sick Children is an appropriate way of providing for this on an individual basis.

DFE Circular 12/94, ‘The Education of Sick Children’, made it clear that: ‘Arrangements which local education authorities (LEAs) make must be tailored to the circumstances and the facilities available.’ Circular 14/96: ‘Supporting Pupils with Medical Needs in School’, suggests that ‘health care plans’ are provided so that school staff ‘have sufficient information to understand and support a pupil with long term medical needs.’ For the child with ME it is important that any planning recognises that the child’s health status may require that they are taught at home rather than at school.

The National Association for the Education of Sick Children (NAESC) published an important piece of research (Bolton 1997). 100 parents and 40 children and young people were involved in this study of the meaning and role of education during and after childhood illness, and opinions as to the effectiveness of what had been provided by LEAs. The report emphasised the importance of making joint plans, covering both health and education. 16 of the parents in the study and one young person gave evidence about the effects of ME. This group of parents were likely to describe health needs as paramount. The problem of providing suitable education for chronically sick children who are intermittently absent, or whose health fluctuates, as in ME, was noted.

3.8.2 The joint health-education plan for a pupil with ME is likely, except in milder cases, to include at some point a period of tuition outside school. In some areas of the country a selection of institutional and distance learning options is already available for children and young people who are well enough to study, but unable to cope with the demands of the school day.

Tuition in the child’s own home is often provided. Lessons need to be appropriate in number and scheduled at the most effective time of day in order to optimise education results. Most pupils with ME do not function at their best until late morning or afternoon.

Where there are teachers at the child’s own school willing to take on the tuition as an additional contract, home tuition can be provided by them at the end of a normal school day, rather than by a separate school tutor. This may make the pupil feel in closer contact with the school and less isolated. Facilities for a period of transition involving both the tutor and school simultaneously should be offered. This builds confidence and provides for the rehabilitation process in ME. Returning a pupil to school does not in itself count as successful rehabilitation if it detracts from educational achievement.

3.8.3 Other examples of half-way houses between school and home, already in existence, are ‘home and hospital schools’, which provide a disability friendly environment. Visiting Teacher Services are a development (Education appendix) which offers exciting possibilities. Distance learning using modern technology is a forward looking option for pupils with ME, with the facilities of faxes, computers, e-mail and the Internet.

An important part of the Joint Plan should be to remove unnecessary sources of stress to maximise the potentials for physical recovery and academic learning. It is important for professionals to be honest with the pupil and the family about realistic expectations for the future. They should also be encouraged to know that education opportunities continue through life.

3.8.4 Financial resources for some of this alternative education provision is sometimes provided by reclaiming from schools part of the Age Weighted Pupil Unit funding, to fund the Hospital education service or home tuition for that child.

Throughout the child’s educational career it is important that the Joint Health-Education Plan is regularly reviewed and updated to ensure that the educational and health needs are met. Where an LEA provides a flexible response to meeting the child’s needs, it has been shown that the child is more likely to remain in the education system. (Dowsett and Colby 1997)

Social education is important, but due to limitations imposed by ME, is best considered separately from academic learning. During what may be a long recovery period, a combination of home-based academic learning with separate arrangements for peer-group social contact can work well. A pupil can become socially isolated from peers because of long-term absence from school, but opportunities for social contact in and out of school should be made available for social education alone. (Resources)

Visiting Teacher Groups also work well in providing both social contact and tuition in a half-way house situation. Educating peers about ME is a very important part of socialisation, so that potential good effects of such contact are not undermined by adverse comments about the illness, or about the pupil's absence and special educational needs. Information for friends and teachers are available from Young ME support groups.(Resources) The early onset of fatigue in ME often makes social contact extremely exhausting. Arrangements for social activities, visits and telephone calls need to be paced so as to avoid exhaustion. Distance friendships can also be encouraged via the Internet and conventional networking.

3.10.1 In accordance with government recommendations, all those dealing with sick children should work together for a co-ordinated approach. This should include the education services. The educational psychologist may be a key worker in such a co-ordinated approach, (Higgins 1996) and needs to be well informed about the requirements of children with ME. People who have knowledge of the illness, such as representatives from ME patient organisations, can also offer valuable advice.

It is important for doctors, especially those in the School Medical Service, to be aware of all available choices for a child’s education, which can be offered in a variety of ways.

LEAs should inform medical professionals of all the options available to families, with the aim of always being as flexible as possible. This enables the doctor to make recommendations which truly support the individual child’s educational needs long-term.

In keeping with the principles of involving disabled persons in the planning of services for their needs, ME patient support organisations (Resources ) should be seen as respected partners in planning, and as useful sources of information The Office for Standards in Education has circulated a Children’s Charter (Colby 1996) to Schools Inspectors who specialise in special educational needs. This Charter was developed for a patient organisation, in step with the principles of multi-disciplinary working.

The pupil should ideally be part of the team making decisions about his or her future schooling. To be effective, such involvement needs to be real, not merely an apparent consultation followed by decisions which ignore their views, and is important in both educational and medical spheres, (Cooper 1997) to avoid alienation from professionals who are trying to help.

The professionals should not feel threatened by the genuine sharing of decisions with patients and pupils, since a more satisfactory management plan is likely to emerge as a result. The pupil may set more ambitious goals than the professionals at times.

It is recognised that ME is one of the medical conditions giving rise to Special Educational needs. Medical conditions likely to affect a child’s academic achievement are listed in the Code of Practice on the Identification and Assessment of Special Educational Needs. Research (Dowsett and Colby 1997) suggests that ME is a more common cause of long-term sickness absence than any of those currently listed. (The Northern Ireland Code lists it.) The National Association for the Education of Sick Children also reports that in 1996, children with ME formed the largest group about whom requests came in.

One factor identified by the Department of Health (Welfare of Children in Hospital) as a potential trigger for statutory assessment procedures when the child is in hospital is when he or she has a medical condition likely to affect future learning ability.

Where extra provision of education is required, the government envisages that many LEAs will fulfil their responsibilities through the use of small units, or by individual and home tuition, with the aim of returning children to mainstream education as soon as possible. Indeed, this is regarded as the child’s right.

However, DFE Circular 11/94 (The Education by LEAs of Children Otherwise than at School) points out the importance of considering alternative education arrangements, including assessment for Special Educational Needs. Return to school should be considered only if it disadvantages neither the child’s health nor his/her educational achievement.

Formal assessment can be helpful if the resulting Statement is flexible. This is not usual, but for ME it is appropriate in view of the relapsing/remitting nature of the illness. A Statement covers provision for children up to the age of 19, as long as they are on the roll of a school. It also gives schools powers to make certain special examination arrangements without seeking further permission.

Any pupil with genuine reasons for needing special arrangements and/or consideration in examinations can obtain these through the school or examinations centre, and its contact with the various examination bodies. The principle is that, whilst it would be unfair for a pupil to gain advantage over others, no pupil should be disadvantaged by examination arrangements. Similarly, special arrangements must not mislead anyone about candidates’ attainment, and should not reduce the reliability of the assessment. (Joint Forum GCSE/A level booklet)

Children with ME are severely disadvantaged in normal examination settings, which demand:

For these reasons, special arrangements should always be considered for pupils with ME. A higher mark may be attained if a pupil sits an exam at home, at a suitable time of day, and with breaks in the examination for mental recovery. Most candidates with neurological dysfunction will qualify for an additional examination time allowance of 25%. The school or examination centre can also request that special consideration be given to the paper of a candidate who is unwell during the examination.

Booklets published by the Qualifications Curriculum Authority, and the Joint Forum for GCSE and GCE, give full details of the various arrangements which can be offered by schools and examination centres on their own initiative, and of the additional arrangements requiring permission from these bodies. These should be planned well in advance, and schools are advised: ‘If candidates have multiple disabilities, make sure that you have considered all the possibilities for meeting their assessment needs’.

Pupils with ME and their families should be told about special assessment and examination options in good time. Many will not know of the existence of such provisions, without being given the information.

All teachers of pupils with ME must have sight of the booklets that detail special assessment and examination arrangements, in accordance with the duties of heads of examination centres. Doctors should also see these booklets.

The young person with ME reaching 16 years of age often faces a plethora of educational problems, not least the withdrawal in many cases of home tuition and other help. This discriminates against them in terms of career prospects so they become doubly disadvantaged; such discrimination urgently needs addressing. A Statement of Special Educational Needs covers children’s needs post 16.

The issue of funding for post-16 education is a complex one. The Careers Service provided by the Local Education Authority is usually the key agency in making any necessary arrangements. It is important, therefore, that young people not attending school because of ME receive their full entitlement of careers guidance in order to make the best possible arrangements for continuing education.

Colleges of further education are often very skilled at making flexible arrangements for young people with ME who are able to attend college premises as disabled students. This approach is advocated in the 1996 report of the Further Education Funding Council ‘Inclusive learning’. Creative thinking is needed to meet the needs of a pupil with ME who wants to continue education, but is not physically well enough to attend college premises.

Education Appendix
Examples of flexible schooling producing good results

Norfolk runs a tuition service under the banner of the Visiting Teacher Service in which teaching is delivered in a variety of ways, from 1:1 to small groups, in a variety of premises varying from the pupil’s own home to Youth Centres to schools and, in three cases, in specific VTS Centres. Pupils helped include those who are ill, injured, hospitalised, those permanently excluded from school, refusing school, school phobic or special needs pupils awaiting appropriate provision.

A County Co-ordinator and three Area Co-ordinators provide a service over five areas of the county. Area-based core teams of staff and standby teachers fulfil specific tasks, teaching and running small groups. Referrals to the service are made by Education Welfare Officers (EWOs) and also from schools, parents, education agencies etc.

In order to staff the service with suitably motivated and trained personnel, staff are offered peer group and Area Co-ordinator support, regular staff meetings, annual day conference, and opportunities for training and resource provision, within the Area and County framework. The VTS maintains close links with health services, family support groups and associations, and has gathered information and resources which can be made available to schools, parents etc. from a wide variety of sources.

The County Co-ordinator notes: ‘The increasing of schools’ awareness of ME, and enabling them to understand how to deal with pupils in a more constructive way, has often led to more successful intervention and progress.’ This has been largely carried out by the VTS through offering course access and information. Regular case reviews are seen as a vital part of the educational process, enabling all parties to keep focused and to plan.

Individual teaching from one or more teachers for specific pupils has led to good results in enabling GCSEs to be taken and to the pupil going on to access Post-16 provision. The most effective means of attaining progress has been found to involve negotiation with the pupils over their own energy use, so that they learn to live and work within the limitations imposed by their medical condition.

ME has been found to affect pupils over a number of years. Thus, when the disease is met at a lower age, about 40% of pupils improve in health sufficient to enable at least partial return to school (which may involve both VTS and school simultaneously) during the statutory school age period (i.e. by 16 years) has been about 40%. However, due to the long-lasting nature of ME, pupils who develop it later in their school careers are generally still ill at the end of the statutory education period. Pupils using the VTS service nevertheless manage to achieve good results.

Whilst exams are not the only yardstick by which to measure success, one school which was initially dubious about its premises being used for a VTS Centre noted that the pupils’ exam results clearly demonstrated the educational value of the scheme. In other areas ranging across England and Northern Ireland, results of suitable tuition coupled with special examination arrangements underpin those of Norfolk. Examples are: A boy aged 13, severely ill and housebound, one GCSE obtained (Grade A starred) two further GCSEs now begun. A girl aged 19, became suddenly ill at 18 and missed A-levels, one A-level (Grade B).

The VTS County Co-ordinator notes: ‘In most cases, the co-operation of schools and colleges with the education of these pupils has been vital to their degree of success.’

The VTS scheme has served to educate both the teachers serving within it, and those serving in schools, since the VTS staff are able to visit schools and pass on their knowledge. The service has also developed information packs and has become a source for the wider educational community. LEAs and medical professionals dealing with ME in children and young people may contact the Norfolk VTS County Co-ordinator at the following address:

Mike Downes, County Co-ordinator (VTS), Room 35, County Hall, Martineau Lane, Norwich, NR1 2DL. Tel: 01603 222150.

The Children Act 1989 Guidance and Regulations, Volume 6, Children with Disabilities, Chapter 9, ‘Working with Education Services’ (p21) HMSO,

Child Health in the Community: A guide to good practice, Part 16 - ‘Children with Special Educational Needs’ (p79). NHS Executive

Losing the Thread : Pupils’ and Parents’ Voices about Education for Sick Children. Angela Bolton, The National Association for the Education of Sick Children, Case Study 3 - Children with ME/Chronic Fatigue Syndrome (p.30)

Under the 1989 Children Act, all children with disabilities fall within the classification ‘Children in Need’, and are therefore a responsibility of the Local Authority which should offer advice, guidance and assistance, taking the form of a direct service provision. In practice, Social Service Departments may be likely to display a confused approach to children with ME

The condition is still not widely understood by the professionals likely to become involved, and since the Community Care legislation, most social service teams have re-specialised into children’s and adult’s. Hence the original aim of the 1970 Social Services Act, to provide a ‘one door’ service, is becoming eclipsed.

Both Local Authority Education and Social Services Departments should offer assessment and, where necessary, direct service input for children and young people with ME. Direct services are likely to be put together by social workers and occupational therapists employed by the Local Authority.

Working with severe financial restraints, Local Authorities are targeting services towards clients whom they regard as being at high risk. It may be difficult to categorise children with ME within this approach, although statutorily services are supposed to be led by needs rather than by finance. However, mothers with children diagnosed with ME/CFS should certainly be potentially eligible for Home Care via Social Services Departments.

A key concept in the 1989 Children Act is of ‘partnership’ with parents and extended families. One valuable point of reference concerning the rights of children in the UK is the Children’s Legal Centre. (See Resources)

All voluntary agencies concerned with ME should encourage a Joint Agency Approach from Social Services, Education and Health Professionals. This is enshrined in the ‘partnership’ philosophy of the 1989 Children Act and well documented in the profuse guidance literature which accompanies its implementation.

Social Security Benefits (This information may be subject to change - correct in April 1998)

Disability Living Allowance (DLA) is a non-taxable allowance payable to people up to the age of 65, including children. Families of chronically ill children or adolescents are often unaware that their child may qualify for DLA. There are two components:

The Mobility Component is payable to children over 5, who are virtually unable to walk or require extra supervision outside. It has two rates - Higher and Lower.

The Care Component is payable at three rates, depending on whether the need for extra Care is present part of the day, a full day, or for 24 hours. For full information, obtain leaflets FB2 and HB6 from Social Security Offices or Post Offices.

Severe Disability Allowance (SDA) Adolescents aged 16 or over may be entitled to SDA, which is not always mentioned when enquiring about other benefits. This allowance may be payable to young people who are too ill to receive any form of education and who are unable to work. Any young person who is housebound and severely affected by CFS/ME may qualify for SDA in addition to DLA.

A parent or guardian who has to give up work to care for a sick or disabled child or teenager may be entitled to Carers’ Allowance.

If the family is on a Low Income, money may be available to pay for special food, or extra heating, for a sick or disabled child.

To find out the needs of children and adolescents with ME/CFS it is best to ask them directly:

In 1991, Dr Elizabeth Dowsett chaired a working party to investigate the special problems of children and young people with ME. 600 questionnaires were sent out and 500 were returned. The written comments on these forms were used as the basis for a self-help book for young people with ME. (Moss 1996) During the research for that book, a straw poll of 100 questionnaires were reviewed to establish the most noted needs by the young people:-

48% required information to explain about ME to friends, family, medical and educational professionals.

Five years later, in 1996, over 2000 letters were sent to a daily newspaper in response to an article about one child’s experience of ME. The same researcher took a random selection of 100 letters from the file which dealt with children with ME. Again the most noted needs were:

51% required information to explain ME to friends and family, and professionals.

The young people's emotional state was noted from their free writing in both studies:

From the 1990 study:- 62% had a low self-esteem, 9% had high self-esteem, and 29% had no clearly defined emotional state.

From the 1996 study:- 75% had a low self-esteem, 5% had high self-esteem, and 20% had no clearly defined emotional state.

Many children and young people become isolated and alienated from their peers, professionals who are involved with them and even members of their families because they feel strongly that they are misunderstood, that their illness is trivialised, and their voices not heard. The double burden of an illness which disrupts practically every aspect of their lives, and their correct perception that others do not try to understand what ME is really like must be almost intolerable. Some young people may withdraw into solitude rather than cope with comments and conversations which are hurtful and insulting. ME is an illness which hangs in a medical limbo. Adults find it difficult enough to deal with an illness for which there is no one accepted name, no treatment and no reliable prognosis. For children, who even when well are often not listened to or taken seriously, it must be especially hard to feel that no-one listens or acknowledges what they are going through. A number of issues relating to emotional needs deserve attention:

During late childhood and adolescence relationships take on new significance as they try out new identities and join and leave different social groups outside school. In a recent study of teenage lifestyles, young people with ME cited friends and friendships groups as the most important and preoccupying aspects of their lives. Those who are seriously ill may lose out on the intimacy and the fun of friends and on the process of developing self-identity through friendships. They may be rejected because of missing school and being unable to take part in status giving activities such as sports and out-of-school late night events such as gigs or discos, or they be stigmatised just for being ill. The seriously ill or housebound may become totally isolated from their peers because they do not have the energy to see friends or even maintain conversation on the telephone. Healthy young people with busy social agendas quickly lose interest in sick ones. Young people with ME watch their friends move on socially and academically while they remain stuck and static.

For children the impact of ME is profoundly disruptive to their sense of self-identity and self-worth as social networks are disrupted and friendships lost. The loss of school, friends, any semblance of social life, family activities, and possibly years of childhood and adolescence inevitably take their toll on self-worth. Many such young people become ‘old heads on young shoulders’ as a result of their negative experiences with the medical profession and others, separating them still further from their luckier peers. How to maintain and re-build self-confidence and self-worth are a long and isolating illness is one of our greatest challenges.

Children and young people, like adults, have to cope with scepticism and the trivialising of their suffering. Yet unlike adults they have to cope without the experience of age or the support of their peers. What young people need more than anything else is to have the impact of ME on their lives acknowledged. They need people to understand that they are losing a whole chunk of their lives which can never be regained. They cannot be 12 or 15 or 18 again; that time is lost forever. Without having others acknowledge this profound loss, they may become reluctant to talk about their feelings because they sense that they will not be understood. Therefore it is not surprising that they develop a total lack of trust in doctors and other professionals who deal with them, and even with family members, and withdraw into solitude and self-dependence.

The teenage years are the natural time for separation from parents. When ME strikes during this period, many young people of necessity fall back into a state of dependence on adults. When they should be spreading their wings and practising flights from the nest, they are stuck at home, usually being cared for by their mothers. It is important to find ways of giving some independence to these children even while caring for them. Allowing them some control over even small things such as when they watch TV, when they eat, when they go to bed, can make a difference to their negative feelings of dependence.

It is equally important to involve young people in decisions about their care by listening to them and letting them participate in discussions. Mature children and adolescents have the right to make as many choices as seem appropriate - for example whether to accept therapy or medication. We should not underestimate how well young people understand their own needs, nor how important it is to their self-esteem to be consulted about the organisation of their day-to-day lives and the management of their illness.

Young people with ME may cope best when parents and siblings treat them as ‘normally’ as possible. While in reality ME does dominate and disrupt life within the family, often deeply affecting all family members, nevertheless carers need to veto endless discussions of the illness and its symptoms, and to establish a routine in which the young sick person feels less of a burden and a focus of attention. Many young people may find enormous relief in talking about anything other than their illness, while at the same time needing acknowledgement of their plight. This is not an easy balance to achieve.

Everyone concerned with ill children should try to raise the self-esteem of children and young people with ME, and generate easily accessible information about the illness - for sources of information see Resources.

Cotterall 1996 describes two key processes during adolescence: Attainment and Identity. Adolescence is a time when young people develop their self identity, through growing independence, matching their thoughts to those of others. Peer grouping becomes an important part of social/emotional development.

Young people with ME often do not have the opportunity to belong to a peer group. Those with mild ME or CFS may be able to attend school, but their social life is often non-existent. Those who are house and bed-bound quickly lose their friends, and their self-confidence.

"Young people with little contact with their peers are low in self-confidence and often develop feelings of inadequacy." (Wadell 1984)

Young people with ME require emotional support in a way that will boost their self-confidence and empower their return to a social life and learning as their health slowly improves. ME Youth Organisations (see Resources, p…)can replace lost peer groups and be a step towards a more positive view of the future.

We ideally need a nationwide publicity campaign to highlight the problems of children with ME/CFS and to educate the public about the true nature of the illness. Literature of an easily accessible nature is required for children to understand their illness and learn to manage it effectively. Leaflets and visual material aimed specifically for children and young teenagers are needed. This should be seen as separate from the literature required by their parents.

Information about ME and the management of symptoms should be designed and written both as leaflets and videos for children, and for adolescents. These should be available both as hard copies and on the Internet.

Literature and videos about ME, both for children, and for parents, teachers, and doctors, are available from Action for ME, and from AYME (see Resources).

We need to establish a network of children and young people with ME so that they can collaborate and communicate with each other. Different young people have different needs, so a range of options should be available. There are already several newsletters written for young people and websites are available.

Whilst it is seen as vital to involve and empower the children and young people in the management of their illness, the emotional impact of children with ME on the family, especially the primary carer, must not be underestimated. Health, Social Services and voluntary ME organisations should be able to offer a listening ear, and provide informed advice for parents and guardians.

It is suggested that most children should be managed in their own homes by the primary health team (Royal Colleges Report), but many GPs and school doctors have scanty information and a poor understanding of the condition generally, and frequently express feelings of inadequacy to manage ME/CFS in children. We hope this report will go some way towards helping them. However we believe that each patient and GP also deserves both diagnostic help and support by a consultant paediatrician. In some cases a consultant’s expertise carries more weight in supporting and/or protecting a sick child. The patient support organisations produce literature and advice on many aspects of diagnosis, care and management, and would be pleased to provide information to primary care professionals.

We are unaware of any dedicated hospital in-patient units providing specialist care for children or young people with ME/CFS. There are four ME/CFS in-patient beds (for adolescents and adults) at Oldchurch Hospital, Romford, under the care of Dr L Findley, consultant neurologist, but these are situated in a busy general neurological ward. A few beds are available in the Burlesdon House Rehabilitation adolescent unit in Southampton.

In general, hospitalisation should only be the option when specific tests or emergency treatment require it. When this is necessary a bed may be made available either in an acute paediatric ward, or in an adolescent mental health unit. We regard both of these situations as totally inappropriate for the needs of these young patients, and if numbers increase, would prefer small regional units under the direction of a paediatrician with a special interest in this illness, together with the development of dedicated out-patients clinics sub-regionally, staffed by healthcare professionals with appropriate experience, training or special interest. This would go a long way to resolve the present very unsatisfactory service reported by many families.

We have attempted to provide some recommendations for the diagnosis and management of ME/CFS in children and young people, based not only on published work, but also on the ‘experience and reason’ which relies on the authors’ observed facts. (Hippocrates, Aphorisms, 1822). As clinicians and teachers, we feel that the two most important areas of a child’s life are health and education. But we also recognise that each family requires multidiscliplinary support. Psychological and emotional services may sometimes be provided by professional colleagues who have expertise in dealing with the inevitable disturbances of mind and emotion which accompany long-term childhood illnesses.

Currently there is much uncertainty regarding the number of children affected, the true aetiology and pathogenesis, as well as specific treatment for this illness. This report therefore cannot be the last word, but we hope it will provide enough information to allow those with less experience to help their patients to heal slowly and effectively, and to emerge with honour when they recover. Further funding and research are required to explore the causes and biological changes in the illness.

Despite the difficulties and lack of understanding about ME, the majority of young people do eventually recover sufficiently to live satisfying lives. Published studies about treatments such as cognitive behaviour therapy and graded exercise give conflicting evidence about its usefulness in ME. Young patients with who are offered these treatments as part of their management need to be carefully selected, be willing participants, and be managed by therapists who understand the illness.

We hope that the information and recommendations about education will give teachers and education authorities confidence so they can help affected young people to maximise opportunities to continue their education at home, before they reach the stage of recovery that allows them to re-enter school, college, or work.

Andrew, age 14, was an active extrovert teenager. One day at school he became acutely ill with fever, dizziness, generalised limb pains, vomiting and headache. Some other pupils at his school suffered a non-specific febrile illness during the same week. Andrew’s symptoms continued unabated and over the next 4 weeks he remained bedridden. In addition he suffered from anorexia, hypersomnolence, and he lost weight.

Over the next 3 months he failed to improve. His headaches and limb pains remained severe, he was mentally confused, irritable and depressed. He was so unsteady on his feet that he kept falling if he attempted to stand. On examination he was quiet, immobile, obviously in pain, and had no abnormal signs apart from a slow pulse of 60/minute. Routine blood test came back normal.

At 6 months from onset, he was still as unwell as ever, in continuous pain, and with very poor balance. He was regularly sleeping 18 hours a day, and on two occasions slept for 36 hours non-stop. By this stage he had lost 2 stone in weight and hospital admission was contemplated, but postponed. He received regular gentle passive physiotherapy but was too unwell for home tuition. At 9 months from onset he was experiencing ‘good days’ every 4 or 5 days, by which he meant he woke before lunch. On average days he was still sleeping until mid-afternoon.

At 16 months from onset he reported he was feeling ‘great’. By this he meant he was only sleeping 14 hours per day. His brain was functioning normally and he had returned to school 3 afternoons a week.

He continued steadily and spontaneously, and eventually returned to full time schooling with the loss of two full academic years. He took his GCSEs 2 years late, with excellent results. When last heard of, he was head of School and playing rugby.

G was an atopic child who developed colic, eczema and asthma in her first year, and hay fever and food intolerances in her second and third years. Aged 6 it was noticed she became exhausted more quickly than her younger brother after swimming. Aged 9 her asthma subsided, but one month later she developed a sudden onset of headaches and fatigue. She became increasingly light and sound sensitive, but continued to go to school part time, gradually improving over the subsequent summer.

In October her symptoms returned. She kept going as instructed by her doctors, but she looked very grey and complained of increasing tiredness. It became obvious over the Christmas holidays that she had exhaustion after slight effort, but she returned to school in January, only to be sent home after two days with a suspected viral illness. This marked the relapse of her severe fatigue, headaches, sound and light hypersensitivity. Following treatment for sinusitis she temporarily improved, but a month later the whole family developed an influenzal illness which led to a rapid return of all her previous symptoms in a more severe form. This time pain spread throughout her body with aching limbs, and she became rapidly exhausted after simple activities such as toiletting and eating. She was sleeping excessively. Routine haematological and biochemical tests were normal.

Other symptoms followed: - Excessive thirst, twitching movements of the legs and hands, poor balance, staggering gait. She described how her limbs would not "obey" her mind. She found difficulty in swallowing, with regurgitation; developed a low body temperature with cold sweats, poor co-ordination, and she required feeding. She could not remember the names of friends and classmates.

Further tests to exclude malignant or auto-immune diseases were negative. But - without any diagnosis being given, rehabilitation was recommended for a "self-imposed illness". Her parents rejected this view of the illness as they found it in complete contrast with previous experience of illness.

A second opinion was sought from a paediatrician, who recognised ME. A programme of pacing was started, with relief of stressful demands, and plenty of rest with very gradually increasing activity. Unfortunately there was further deterioration in early summer, with a rash on the upper torso, tinnitus, increased muscle weakness, inability to walk or to swallow, altered taste and nausea with some foods, breathing difficulty, constipation, vivid dreams, dizziness, blurred vision, mental confusion, and muscle spasms. She found it very painful to be touched.

By the end of the second summer she could hardly move, her voice disappeared, her eyes remained closed and she began vomiting. Following a brief hospital admission to exclude upper gut obstruction and myasthenia gravis, feeding was established via a naso-gastric tube and pump, using high calorie liquid feeds. She relaxed more at home but remained in a semi-comatose state for several months.

Passive physiotherapy to prevent muscle contractures was taught to her mother, who carried out the movements when she was asleep. A nutritionist gave advice about vitamin and mineral supplements. The naso-gastric tube had to be replaced sometimes by the district nurse.

After three months movements began again, but she developed violent uncontrollable muscle spasms and shaking episodes. Carbamazepine was used to reduce these episodes, which came daily, increasing in forcefulness during the course of the day.

Six weeks later the spasms lessened, and emotional responses reappeared with giggling, crying, anger and fear coming in sequence.

At the time her emotional state appeared very fragile. Her intermittent vocal sounds again disappeared, the muscle spasms returned, and she experienced visual hallucinations whenever a person walked into her room. She later described how voices sounded very confusing and unintelligible.

She slowly began to recover all her functions, starting with improved sleep pattern, opening her eyes, return of speech and swallowing, voluntary movements to readjust her position etc. Then came understanding of speech and language. She appreciated being read to and started looking at books and eventually began to read for herself. She began to accept visitors again. At first her peer group friends, then family (but close relatives appeared to distress her more because they probably communicated their anxiety more readily to her).

G enjoyed hearing stories about animals. She gradually increased her tolerance of people, light, sound and smells. As her naming ability returned, she began to reach for things in a random way, like a baby exploring her new world.

Three months on she began to try to swallow solid food again. It was difficult at first, but gradually the swallowing returned.

When she got to the stage of three meals a day, it was suggested that her naso-gastric tube be removed. A few days later she went down the stairs on her bottom to have a meal with the rest of the family. Thereafter she walked like a toddler, learning first to balance then moving between pieces of furniture and eventually taking herself to the toilet. By this time she could read again, watch television, or the rabbits playing on the lawn outside.

From then on her recovery was steady and progressive. She went out into the garden, out in the car with her parents, and even took a friend’s dog for a few yards walk on a lead. Having a puppy of her own proved a helpful stimulus, and in the summer holidays she was able to go to the seaside and eventually to take her puppy to training classes, which helped her to socialise again.

She was determined by now to return to school in September. Preparations were made with the staff as she would be starting a new secondary school, and she had not been to school for over a year and a half.

Re-introduction to school should be gradual and school staff adequately prepared.

She began with mornings only with no games or PE. The first day was exhausting. Each subsequent day was more exhausting until on the Friday evening she collapsed with severe leg pains. It took nearly six weeks for this to recover, but she was able to do academic work at home, and return to school after half term just for 2 or 3 lessons at a time. Academically she caught up rapidly, but in retrospect, everyone agreed that her re-introduction to school should have been more gradual.

G’s parents believe that the establishment of trust and confidence at the beginning, and non-confrontational and co-operative working of the professionals involved, treating her mostly in her own home environment and not pressuring her to recover in a set time schedule, have all contributed to the secure recovery of this child, without traumatic psychological scars that can appear when more forceful and stressful methods are employed.

Jane Colby LAMSC; Cert Ed; Former Headteacher; Medical and Educational Author; Child Services Development Officer, Action for ME

Dr Alan Franklin FRCP; FRCPCH; DCH; DRCOG; Consultant paediatrician, Chelmsford, Essex; Paediatric adviser to the ME Association.

Dr Lynn Michel PhD (Educational psychology); Former Research Sociologist; parent of sons with ME.

Jill Moss BA; MEd (Special Needs); Director of the Association of Youth with ME

Jacqueline Siner BA; MA; MSc; CPsychol; AFBPsS; Chartered Educational Psychologist

Dr Nigel Speight MA; MBBCh; FRCP; FRCPCH; DCH; Consultant Paediatrician, Durham; Medical Adviser to Association of Youth with ME; Paediatric Adviser to the ME Association

Dr Elizabeth Dowsett, Honorary Consultant Microbiologist, South Essex Health Trust

Dr Jenny Altschuler, Consultant Clinical Psychologist and Family Psychotherapist, Tavistock Clinic, London

Christine Eiser, Director CRC child and family research group, Department of Psychology, University of Exeter

Unexplained, persistent, or relapsing chronic fatigue that is of new onset (not lifelong), present for at least 6 months. The fatigue results in substantial reduction in occupational, educational, social or personal activities.

C. Exclusion of other medical illnesses, including drug or substance abuse, and major psychiatric illness. For a diagnosis of CFS, the case must fulfil all the major criteria, plus 4 or more of the minor criteria, which should be present for 6 months or more.

¹	Measured by recording blood pressure recumbant, then at 5 minute intervals standing still. In health, blood and pulse pressures can be maintained while standing for at least one hour.
²	This disturbance of neurocognitive function can cause acute distress to adolescents who are usually keen to return to school, but find they are unable to function normally. It is not appropriate to return a child to school immediately, without further educational assessment. That this disturbance is part of the illness and not due to psychiatric co-morbidity has been confirmed by Deluca and colleages (Deluca 1997).
³	These are part of the great difficulty children with ME have in coping with normal input - whether cognitive, visual, aural or visceral - because of rapid brain fatigue.

Needs	% in 1990	% in 1996
Information to explain ME	48	51
Information on how to manage ME	19	17
Contact with others	15	12
No clearly defined significant need	18	20