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Jane Colby
Executive Director of Tymes Trust
former Head Teacher
Consultant for the Education of Children with ME
Gill Jacobs
Health writer
former Development Director, Action for ME
The concept has arisen that the "F" word - Fatigue - is the main problem in ME. The term Chronic Fatigue Syndrome, now in general use, reinforces this impression. A US commission has been charged with finding a better name, for in reality the cognitive problems may be as bad as the physical fatigue. Therefore pace, content, venue and organisation of learning needs to be realistic and individually structured to take account of illness severity and stage of recovery.
The effects of having a widely misunderstood illness can be far-reaching. Alienation of the family from the professionals who are trying to help can occur. (Cooper 1997). Dr Alan Franklin, a British paediatrician with a substantial case-load of children with ME, has indeed seen many children who have lost confidence in medical advisers and others, when their problems are not recognised. Children have frequent infections and complain of their symptoms. This, together with the inconsistent and fluctuating nature of this illness makes it understandable that confusion can arise over diagnosis.
Part of the problem stems from the children not knowing what "normal" is, so they may not realise that their symptoms denote real illness. (Albrecht and Moore 1996) In addition, children believe adults. If they are told they are not ill they try to believe it. When finally diagnosed, they are at the mercy of a condition which even the adults do not understand. Children are very sensitive to the attitudes of those around them. Picking up on fear and pessimism can result in a deep sense of anxiety and hopelessness.
Showing genuine compassion and giving back a sense of control through a real partnership with all the agencies involved can be enormously beneficial. Otherwise, grief at the loss of ability to play and learn, coupled with pain and loss of friends, can overwhelm the child. This can cause anything from irritability and anger to withdrawal, depression and suicidal thoughts. The emotions are often disturbed in ME due to neurological dysfunction in the limbic system of the brain. Any extra distress merely aggravates such problems. Sick children need to feel secure and cared for and need to know they are being heard.
However, they are extremely resilient with the right kind of support, often becoming mature beyond their years. A programme which the child or young adult has helped to put together tends to succeed. Professionals who share decisions with parents and pupils tend to see a more satisfactory management plan emerge as a result, with the child actually setting more ambitious goals than the professionals at times. On the whole, children with ME do not lack motivation and ambition, just the physical health necessary to use them to the full. Rather than enjoying their state of dependence, as is often believed by others outside the family, both they and their parents can have great difficulty in accepting the limitations which ME imposes, and also in understanding the time-scale that recovery may take.
Parents are often assumed to encourage dependence from their children for their own needs. Where parents behave protectively it is, in our experience, usually in order to defend their child (a natural parental instinct in the animal kingdom) based on knowledge gained as a carer. ME is a relapsing and remitting illness. There is bound to be well-founded fear about relapse and overdoing things.
Clearly, there is a need for professionals entrusted with meeting the needs of children with ME to co-operate and build on their understanding of this illness, whilst research is being developed all the time.
Three questions commonly asked by home tutors are:
1. Why can't my pupil do more mental work? S/He is getting plenty of physical rest.
2. Why are parents reluctant to let me push my pupil further in lessons?
3. Why can't my pupil do more homework in between lessons?
The answers to these questions are related.
1. The reason your pupil cannot do more mental work in spite of having plenty of physical rest is that in ME the brain is as badly affected as the body, sometimes worse.
2. The reason that parents are reluctant to allow you to push your pupil further is that overworking the malfunctioning brain results in mental and physical fade which comes on long after the tutor has left the house and can last for days or even weeks. The pupil slowly deteriorates under a regime of mental overwork.
3. The reason your pupil cannot do more homework is that the lesson itself has depleted mental and physical energy and this has to be made up. If the lesson was too taxing, it may be that no homework at all is possible.
ME patients have significant memory deficits, consistent with brain (temporal-limbic) dysfunction and significantly different from depressed and normal control subjects. An interesting piece of research on the cognitive deficits is Smith A (1995).
The severest forms of ME may be commoner in children than adults. Neurological symptoms include:
US paediatrician Dr David Bell states in one study: "The three symptoms, besides fatigue, that caused the greatest discomfort…were headache, sleep disturbance, and cognitive difficulty." (Also see Action for ME Guidelines for Schools.) Memory, speech, visual and spatial awareness, information processing, following a train of thought, ability to understand instructions - all are impaired. Physical effort such as that needed to walk round school or, in bad cases, simply to get out of bed and dress, exacerbates symptoms and depletes the brain's functioning even more. Over-pushing the malfunctioning brain also exacerbates symptoms. Such effects typically exhibit a time-lag; they commonly happen 48 hours after the effort expenditure and the teacher may therefore be unaware of them.
What impairs the thinking processes? Michael J. Goldberg's NeuroSPECT imaging has demonstrated abnormalities in blood flow (perfusion) through the brains of children with ME (1997). Dr Goldberg explains: "The importance of defining perfusion lies in the observations that cerebral function and perfusion are directly correlated." In other words, we need oxygen to think.
The consequences of overpushing a child with ME are epitomised in a report on a boy of 12 (Colby 1997). "Relapses/downturns in [A's] health have occurred… [A] describes this as being partly due to the physical effort of a [weekly] school visit…and also to one home tutor's under-estimation of the need to pace both mental and physical effort in this condition. This exacerbated [A's] exhaustion and there was insufficient time between sessions for the resulting deficit to be made up." Modifications in approach unfortunately came too late to avoid relapse. Planning the frequency, length and content of lessons, the pace of work and the extent of curriculum and exams attempted in consultation with the child and parents has been found to be a successful approach. (Higgins and Siner 1996)
US paediatrician Dr David Bell (1995) states "there is a commonly held misperception that children with fatigue have emotional illness, a perception that is not supported by the pediatric literature."
Some medical authorities suggest that cognitive symptoms may be due to psychological factors which may maintain illness even if there was originally a viral trigger. (Chronic Fatigue Syndrome, Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists, and General Practitioners, October 1996) However, neuropsychological tests on ME patients reveal abnormalities consistent with a brain disorder. DeLuca et al (1997) tested patients with ME who had no psychiatric condition, comparing them to healthy controls and sub-groups of ME with a co-existing psychiatric condition. On tests on memory, attention and information processing, patients with ME were impaired relative to the other groups, showing that ME cannot be explained solely by the presence of a psychiatric condition.
Higher cognitive difficulty scores have been correlated with problems of immune function. Depression was not shown to be the cause. (Moss, SE.,1995) Brain scans showing reduced blood flow in the brain stem of ME patients do not show the same pattern in patients without ME but with depression. The brain stem controls functions such as heart rate, blood pressure, swallowing, coughing, breathing and consciousness. Reduced blood flow seriously affects brain function, since the brain's energy requirements are far higher than in any other part of the body. (Costa et al 1995, Tavio et al, 1966)
Experiments in mice are consistent with the notion that fatigue could be due to cytokine production in the central nervous system. Cytokines help in the task of killing infected cells, and a raised level in the blood suggests an ongoing viral infection. McGarry et al (1994) found at post-mortem the presence of viral genetic material within parts of the central nervous system, including the hypothalamus.
Lack of cortisol has also been noted in the brains of ME patients. This occurs in polio myelitis. People with depression have raised cortisol levels, so here is another difference between the two conditions. In addition, Michael Sharpe and other researchers have shown that in ME there is increased brain serotonin function, something which does not occur in depression. Sharpe et al (1997) state that this makes it "unlikely that chronic fatigue syndrome and depression share a common pathophysiology." In many ways they are opposites, although a reactive depression could result from the ME experience.
Where a child's illness symptoms are thought to be psychological, conferring "secondary gain" (i.e permission to stay at home) exercise and return to school are often promoted. However, a school phobic is typically able to be active at home, is not physically ill and suffers from separation anxiety, possibly with fear of bullying. Anorexia nervosa may also be suspected where children with ME fail to thrive, but children with ME do not have a pathological fear of putting on weight like an anorexic, nor a distorted body image. They do, however, have frequent nausea and may have difficulty in swallowing.
Where ME is incorrectly diagnosed as school phobia or anorexia, the parents' insistence that something physical is wrong may be mistaken for obstruction of necessary psychiatric treatment. They are then considered as actively blocking rehabilitation. Families traumatised by the illness may well be helped by counselling, but therapists need to understand the physical limitations of the disease. ME specialist Dr Elizabeth Dowsett points out that the importance of providing practical support such as hoists, wheelchairs, transport and benefits is often overlooked in the drive to provide emotional support.
There is no simple answer to this. Where passive physiotherapy may be helpful, active physiotherapy (in which effort is made by the patient) can precipitate relapse. In passive physiotherapy, limbs are moved gently by someone other than the patient to maintain flexibility and blood flow.
If recovery is well established and muscles are functioning more normally, gentle activity may well aid rehabilitation. But where the patient is not permitted to adjust the programme according to the effects of the activity, relapse can occur. One apt cartoon shows someone running, and the captions read: "Two laps...Four laps...Relapse." (Cartoons by Arber) This pattern often occurs until a patient has learned to pace him/herself and understand what his/her body is capable of according to the stage of recovery.
The key word is "stabilisation". Simply walking around a secondary school is commonly a cause of relapse in CFS/ME until stabilisation of the condition has occurred. Studies indicating that physical effort may help people with chronic fatigue have been based on selected groups of patients, many of whom do not have some of the classic neurological symptoms of ME itself, such as sleep disorder (Bell 1995). These patients may therefore either have another type of chronic fatigue and not the neurological disease ME, or they may be significantly recovered already, which is why they do not have sleep disturbance. This in itself would make them ready to undertake gentle, graded exercise such as walking.
Some researchers have explained to particular patients that they are too ill for the regime to help them. A study in the British Medical Journal claiming that a significant proportion of patients felt generally improved after a programme of walking and were still improved a year later (Fulcher and White1997) specifically excluded patients with sleep disturbance. The researchers were at pains to point out that their results applied only to those patients who did not have this symptom.
People with ME use a far higher proportion of energy for what is called "resting strength" than others. This is the energy expended merely to sit, digest, and carry out normal bodily functions. Experiments show that many have reduced volume of oxygen uptake. This is a measure of aerobic fitness or how efficiently the body utilises oxygen. This reduced uptake is equivalent to someone with emphysema or a 70 year old with a heart condition. It is thought to be linked to a mitochondrial dysfunction. (Behan W M H, et al. 1991) The mitochondria are the "cell batteries" from which our muscles derive energy.
ME is potentially a long-term condition. A study of 1826 patients by the Nightingale Research Foundation in Canada (1994) revealed that after seven years, only 2% of patients were fully recovered. Most children with ME will need various kinds of support for a considerable time. It is not generally practical to treat home education as a short-term stop-gap pending return to school, a fact increasingly being realised and accommodated by a number of education authorities who are making longer-term arrangements for home education, funding them through the Age Weighted Pupil Unit.
The British Royal Colleges of Medicine discourage home tuition except in the worst cases, but the American Public Health Service recognises it as an alternative. As the educational experts, the onus is on LEAs to decide the best course of action in any individual case. In making a decision the purpose of education should be paramount; the Action for ME Children's Charter, as circulated by the Office for Standards in Education to its Special Educational Needs HMIs, explains: "The purpose of schooling is not just to put children into schools; it is to educate children to the best possible standard."
It is interesting that the largest epidemiological study of ME available (Dowsett and Colby 1997) found that in the areas of higher provision of home tuition, children were less likely to be withdrawn from school entirely than in those offering little provision. That study also revealed that 51% of long-term sickness absence in pupils was due to ME. Flexible education which adapts according to the stage of recovery (ME typically fluctuates) is a successful strategy in LEAs who practise this approach.
The Code of Practice on the Identification and Assessment of Special Educational Needs does not specifically mention ME, but when the Northern Ireland Code came to be written it was recognised that ME should be included. It is listed in the examples of medical conditions which LEAs need to accommodate. The chronic nature of the illness, coupled with cognitive deficit exacerbated by effort, means that a child with this disease has, by definition, Special Educational Needs. A Statement of Special Educational Needs is helpful if it addresses the flexibility of provision necessary in such a fluctuating condition. This has been done for children with CFS/ME with some success.
The sessions are best timed for the hours of maximum mental arousal. The brain's Reticular Activating System (which keeps us alert) is typically disordered in ME (lesions are visible on MRI scan) and patients have to learn to do mental work at the most productive time according to the rhythm their brains have adopted. This is often, in fact, the afternoon or even the evening, but it does vary.
The normal consideration with a child on home tuition would be to follow a regime which will dovetail easily with the school curriculum on return, but ME typically needs a different approach. Many children are only just recovering sufficiently to attend an institution part-time by Year 11. Dowsett and Colby (1997) have shown that the prevalence of the condition peaks at age 15 and many children therefore never recover in time to return to school. They may enter FE College with part-time attendance and/or follow various forms of distance learning. Where children return to school as soon as physically possible, they often struggle with just a few lessons per week for little academic return.
Every child is entitled to the full, broad and balanced National Curriculum. However, in ME the practical realities make this impossible and pragmatism is the best option. Good results have been obtained by studying only the National Curriculum core subjects, with the option of broadening out if/when sufficient recovery occurs. Some children study towards and sit GCSEs end-on rather than simultaneously, with the first one being taken at age thirteen. Even starred A grades have been achieved this way by quite ill children, who can slowly build up their qualifications one by one. For the sake of good grades, this can be more successful than trying to sit a number of exams at the same time. Special examination arrangements to accommodate all the child's disabilities have helped considerably.
A suitable first qualification for the child to aim at is the subject which s/he finds easiest, given the cognitive deficit which is handicapping educational achievement. Having a serious and genuine aim can be very therapeutic in keeping up morale and boosting self-esteem, which takes a severe knock in this disease. Gaining qualifications is also of very great relevance to a child whose future has suddenly become uncertain. It can be very helpful to get Careers Officers involved early in order to help the family identify longer-term goals. This may facilitate the choice of subjects in which to take GCSEs.
Since there is no way to predict when recovery will occur, or how complete it will be (a substantial proportion of cases have residual symptoms which need on-going accommodation) the educational priority must be to enable pupils to use their small store of energy to realise their abilities as fully as possible, given their disabilities. This is the thrust of all the latest legislation and government circulars.
Stressful occupations carry less risk of ME than those involving exposure to infection. (Hyde 1994). However, the immune system is known to be affected by stress and anyone who is ill needs stress minimised to maximise the rate of recovery. In 1996, more parents telephoned the National Association for the Education of Sick Children for help with ME than any other condition. Not surprisingly, they overwhelmingly asked that health be given priority over education. (Parents and Pupils Voice 1996)
Inter-professional collaboration and delegation of control to the young person can achieve remarkable results. At the age of eleven, Jessica had a severe stomach bug lasting over five weeks. Friends who also caught it were hospitalised. The typical remitting/relapsing pattern set in; school phobia and maternal anxiety were diagnosed and Jessica pushed herself back to school. She relapsed badly. Her problems still being considered psychological, the school demanded full attendance or none and Jessica ended up in hospital. An exercise regime resulted in severe disablement. She could not lift her head and had to be carried upstairs on her return home. Finally, an enlightened educational psychologist became involved, assembled a team of professionals and allowed Jessica to make the decisions. Her relief was palpable and effective. Jessica has gone on to obtain GCSEs and is studying successfully in a flexible regime. She still needs a wheel-chair. (Full case history in 'ME-The New Plague' by Jane Colby).
This service is delivered in a variety of ways: from 1:1 to small group, 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. 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, an 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: "It is the increasing of schools' awareness of ME/CFS and enabling them to understand how to deal with pupils in a more constructive way which has so often led to more successful intervention and progress." This has been largely carried out by the VTS through offering course access, information and regular case reviews.
With suitable provision of aids, distance learning materials and thoughtful planning, the educational future for children with ME, and indeed their present well-being and happiness, can be readily transformed, widened and underpinned by the LEA. The Home Tutor can play a vital role during the long years of struggle for health. Such a struggle is unlikely to last less than a year and is more likely to be several years at least.
Action for ME would like to thank you for reading this leaflet and wishes you every success in your teaching. Please feel free to telephone for advice or further information. We would also especially like feedback from you about approaches which you have found effective.
Jane Colby, former Child Services Development Officer, Action for ME: now Executive Director, Tymes Trust. Telephone 01245 401080; Email jane@jafc.demon.co.uk
Mike Downes, County Co-ordinator (VTS), Norwich: Telephone 01603 222150
The plethora of research papers (of which these are only examples) showing functional abnormalities in ME continues to accumulate. They cover a wide spectrum of biological fields and give the inescapable message of organic disease. Discussions may continue as to the initial cause(s), but teachers will succeed best where they take these limitations on board, accommodate them, and thus enable their pupils to learn in spite of them. Action for ME is committed to helping you in this vital task.
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