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Why we have developed a plan of action for ME

Dr Nigel Hunt
Member of the Chief Medical Officer's Working Group on CFS/ME
GP Tutor

Jane Colby
Member of the Chief Medical Officer's Working Group on CFS/ME Children's Group
Executive Director of Tymes Trust
former Head Teacher

The following two-part article appeared in General Practitioner magazine on July 9 1999. We are grateful to the magazine for allowing us to reprint it here.

We would like to point out that not all cases of ME in children are over by the four-and-a-half years quoted below, though this does seem to be the average. Use your discretion here; there is a danger in expecting each case to end by that deadline, just as it would be dispiriting to parents to be told that their child was definitely going to be ill for that length of time.

There is also a danger in expecting the disease to vanish completely - "just like that". We are aware of children who have relapsed after having no symptoms for some years if they push themselves too hard. The disease is characterised by a potential for chronicity and relapse. Patients, including children, need to understand that they can affect the progress of their own health by being responsive to the messages their bodies give them and easing off if symptoms begin recurring, before a real relapse sets in.

NB Physiotherapy can be counterproductive if it is over-zealous; passive physiotherapy may be more helpful until the child is fit enough to make a physical effort without detrimental effects.

Part One : Why we have developed a plan of action for ME

Essex GP and GP tutor Dr Nigel Hunt is a member of the government working group developing guidelines for chronic fatigue syndrome, or ME. Here, he suggests an extended GP role in care for children.

At my Chelmsford practice I have a list of 2,600 patients, including two children and eight adults who suffer from chronic fatigue syndrome, which is about the average for a GP.

The first step

If you have a child with suspected ME, the first thing you must do as a GP is to go through the diagnosis - this can be done by yourself or with the help of consultant colleagues. Then there is the question of which drugs to prescribe and whether to offer physiotherapy. The medical side of this condition follows a traditional route: there is a common pattern and the disease runs its course.

Effect on the child

Chronic fatigue syndrome in children can last for about four-and-a half years. The earliest cases I have come across involve children aged between 11 and 12 years, but it can occur at younger ages that this. These children suffer tremendous knocks because they are denied a large part of their childhood. What I am concerned about, other than the medical aspect, is the significant problem these children face with their education.

I had one 16-year-old patient with ME who was studying for her GCSEs. I liaised with her school, but they seemed to have no idea about this illness. One problem with ME is the difficulty it creates with memory, so that conventional English and maths become extremely difficult. In severe cases the children can use art to express themselves, giving them a real sense of achievement. In this child's case, I involved an educational consultant to help me in negotiating with the school. We eventually secured an educational tutor for the child.

Collaborative Care

As a GP you are often on your own and, for children with ME, you lack the knowledge and the contacts to meet the needs of these children, particularly educational ones. What we have done, with the help of the patient support organisation Action for ME, is develop a collaborative care management model for these children. This involves setting up a multi-disciplinary team of professionals to develop the child's care. The team members can vary, but include the child's GP, consultant paediatrician, physiotherapist, home tutor and family. Most of the work of the team is done over the telephone, so it does not have enormous workload implications.

The action framework

Together with Action for ME, we have developed an action framework for GPs to follow. This includes, in the first instance, prompt medical diagnosis - by the GP or by referral - to free up the family's access to support from various agencies. The GP also needs to inform the family of any welfare benefits and support available. Regular contact must be maintained with the family, and the child's health must be closely monitored. The child's learning status must be looked at by the GP, who needs to liaise with the school and the local education authority to help set up a learning programme. In this role, GPs can use the help of an educational consultant from a patient support organisation.

Professional benefits

Collaborative care is an enriching process. If, as a GP, you become involved in the educational aspects of the child's care, you can empathise much more with the concerns of the parents. Parents have enormous worries if they have a child with ME. GPs, with the help of an educational consultant from a support organisation, can be extremely instrumental in swaying things in their favour with the school or the education authority. The doctor-patient relationship benefits as well.

Some GPs may worry that getting involved with the educational aspects of their care increases workload. I feel very strongly that if you are trying to practise medicine in a holistic way then you must consider the psychological effects of the diagnosis on both the child an the family.

Part Two : 10 points on organising ME care for children

Jane Colby, an educational consultant, highlights points in The Collaborative Care Management Model, guidelines developed with Dr Nigel Hunt in her role as Child Services Development Officer for the national charity Action for ME.

1 The GP is the key professional in the child's management. Suspected viral triggers for ME/CFS include Non Polio Enteroviruses and certain types of physiotherapy and graded exercise can exacerbate illness in some cases just as in polio myelitis. Chronic Fatigue Syndrome is a recent research-based name for the condition; there may be sub-groups within this umbrella term. In practice, symptoms other than fatigue, e.g. pain and cognitive disturbance, may be the most disabling. The child can minimise symptoms by careful self-management of energy output combined with physical aids as necessary e.g. orange badge, wheelchair.

2 Unlike adults, a child is required to work whilst sick. "Suitable education" is a legal right, but school attendance or rigid lesson schedules can undermine the GP's management and cause repeated relapse. Despair at lack of achievement may also develop. There is no legal requirement to attend school. Distance learning or appropriate home tuition often achieves better academic scores and also aids recovery through better balance of energy output. A5-year study found that 51% of children on long-term sickness absence from school had ME/CFS. [1] The GP is instrumental in facilitating their education.

3 Social isolation may distress children at home for long periods. For this reason, the report of the Royal Colleges (1996) recommended early return to school. However, schools are designed for rigorous work activities and relapses were commonly reported. The medical dilemma can be resolved by GPs recommending that, when well enough, a child visits school for social contact only. Staff may also visit children; work may be completed by other methods which assist academic success. Children can also benefit from contacting others with ME/CFS but need friends outside the "ME world" as well.

4 The Collaborative Care Management Model is designed to help GPs develop a joint medical and educational programme for a child. This programme should put health first, whilst still enabling the child to achieve their own goals despite what may be a long illness. Finance for a child's education is given to the school but for children unable to attend, it can be used to provide education to meet their needs, together with other monies attracted by those needs. Children with ME have special educational needs by virtue of cognitive dysfunction and potential for relapse.

5 The principal underlying the Model is that the child is regarded as the client, and is closely consulted in a non-threatening situation, with no pressure to follow established systems. One child's priority might be to pass GCSEs, another's priority might be to have more social contact with peers even if academic achievement is lower due to mental fatigue. If a child "owns" such strategy decisions, tempered by the GP's advice on the feasibility of those decisions, the strategy is more likely to work as motivation is high. Flexibility and adaptation of the plan may be necessary.

6 An urban myth about ME/CFS is that contact with patient organisations delays recovery. This is now considered a simple artefact of research i.e. patients who contact support organisations are generally more ill in the first place. In other illnesses, patient organisations are recognised sources of information and support. Many are listed in Supporting Pupils with Medical Needs - a good practice guide issued jointly by the DOH and the DfEE. Action for ME is the ME/CFS patient organisation listed in this guide, which recommends an Individual Health Plan for sick children.

7 Parents may be in great distress through coping with their child's debilitating and painful illness, and may appear over-protective as a result. However, they may have experienced misunderstandings by teachers and others whose recommendations have unwittingly resulted in further illness. The parents may then react like any animal whose infant is threatened, and become aggressive. This is not abnormal behaviour; parents who do not show concern for children's welfare are considered inadequate. To families, ME-friendly GPs are like gold dust. Letters supporting the child's needs are each like one grain of that gold dust.

8 School phobia and anorexia nervosa are both often confused with ME/CFS. A rule of thumb to avoid confusion with school phobia is that a phobic child is typically well when allowed to stay at home. Children with ME/CFS, by contrast, are typically ill at weekends after attempting to cope with time in school during the week. They may even aggravate this by non-acceptance of their illness and try to follow active leisure pursuits. Children with anorexia nervosa have a distorted body image and are terrified of gaining weight, neither of which attitudes are characteristic of ME/CFS.

9 The morale and self-esteem of young people with ME is often low as they cannot follow the normal life of a healthy adolescent. There have been suicides; however, caution is necessary in prescribing antidepressants because people with ME are unduly sensitive to medication. Young Action Online (service also available by post and telephone) offers free personal support and friendship and seeks ways to restore self-worth. A network of medical and other professionals with experience of the illness will advise GPs, colleagues and families. The Children's Dept. can be contacted on 01749 677551 or via the website.

10 A Frequently Asked Questions section will be featured in the full report on the Collaborative Care Management Model, so your queries at this stage are valuable to us. Please address these to the Collaborative Care Management Team at PO Box 4347, Stock, Ingatestone, CM4 9TE or email us at jane@jafc.demon .co.uk

For a print-out of the preliminary report, send a large s.a.e. to the same address. Working together is rewarding and helpful to all parties; please tell us if you would like to work with us and take part in future projects.

[1] Long Term Sickness Absence due to ME/CFS in UK schools; An epidemiological study with medical and educational implications
Dowsett EG, Colby J
Journal of Chronic Fatigue Syndrome May 1997 vol 3 (2)

(Note that Part Two was slightly edited for reasons of space when printed.)

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