Managing chronic fatigue syndrome in children

Liaise with family and teachers to keep morale high and minimise disability

Last month the British press made much of a study purporting to show that chronic fatigue syndrome was the single commonest cause of long term absence from school in Britain.1 The authors claimed to have calculated prevalence figures for both pupils (0.07%) and teachers (0.5%) similar to previously reported figures for the general population.2 3 4 Dowsett and Colby make much of “clusters” of cases, defined as three or more cases in a school. The press release distributed by one of the authors states that 39% of cases occurred in such clusters, saying that this “suggests that ME results from an infection.” It refers to one cluster extending over several schools in an area where there was “recreational water heavily polluted by sewage.” The published paper contains no reference to pollution by sewage or anything else, but only to several cases in “schools near two new towns in a rural environment alongside recreational water.”

Unfortunately, the data from this questionnaire survey are heavily overinterpreted. The response rate was only 37% of schools contacted, no attempt was made to define whether non-responders differed from responders, and the local educational authority districts surveyed were chosen on the basis of social and geographical diversity but also “their interest in the project.” It is not clear on what criteria diagnoses were based except for “using reports originating from primary care physicians who may have referred cases to specialists for diagnosis.” No consideration was given to possible subjectivity of diagnosis except to suggest underdiagnosis in the areas of lowest prevalence. The possibility of overdiagnosis in the areas of highest prevalence was not mentioned.

Considering all of this, should the report be dismissed as special pleading? I believe not. While Dowsett and Colby's paper does not help elucidate the true prevalence or aetiology of the condition, it serves two useful purposes. It points out that there is a small number of seriously incapacitated children whose education is imperilled and for whom help is needed. It also provides some confirmation of the common belief of doctors treating adults with chronic fatigue syndrome that teachers are over-represented in their caseload.

Faced with a child with chronic fatigue syndrome, general practitioners and paediatricians have several tasks (see box).6 Firstly, to consider and rule out an extensive differential diagnosis of both physical and emotional disorders. Secondly, to hesitate before diagnosing chronic fatigue syndrome unless the criteria set by the United States Centers for Disease Control or the Oxford consensus criteria are met.7 8 Thirdly, to try to gain the family's acceptance from the outset that physical and psychiatric diagnosis and management are not mutually exclusive.6 And, finally, to liaise with a physiotherapist, child psychiatrist or psychologist,9 representatives of the local education authority and the child's school, and anyone else from any discipline who has something to offer, in devising and carrying out a plan of physical, emotional, social, and educational care to keep morale high and minimise disability.

Differing views on the value of rest as opposed to graded exercise cause anxiety for families.10 Evidence for the effectiveness of graded exercise comes from a randomised trial in adults published in this week's BMJ (p 1647).11 Experience suggests that a similar result would be likely with children.

Teachers play a pivotal role. As Dowsett and Colby imply, there can be scarcely a school where no member of staff has suffered from chronic fatigue. They may have firm views on the subject, which may sit uneasily with the doctor's acceptance of uncertainty or even scepticism, preferably kept in reserve. One result can be conflict on how best to continue a child's education. In particular, there will be those, like Dowsett and Colby, who strongly favour home tuition. Some paediatricians and educational psychologists are concerned that providing this may increase secondary gain in those children whose chronic fatigue includes elements of depression, school phobia, or unreasonable overattachment to home or family. Education authorities may be concerned about cost.

A case discussion, held at school with parents present, can do a great deal to ensure that all parties work together even if they have differing perceptions of the underlying problem. Each family needs an individual plan. Until we have evidence from research into the education of these children, polarised positions on the value of part time school attendance or provision of home tutoring are as pointless as those on the postviral or psychosomatic hypotheses of pathogenesis.

In the meantime, simple practical measures may help; for example, persuading the local educational authority to pay for transport to and from school at other than standard times. Pressing the authority to provide home tuition sometimes proves the best option, but only when school phobia has been definitely ruled out12 and the benefits of home tuition will outweigh potential social isolation. In my experience there is great satisfaction and pleasure for all concerned when a child finally returns to a full and lively school life after months or years of disability. Optimism is not out of place, even though reliable follow up studies are unavailable for a large series of children with proper entry criteria. Experience suggests that children are likely to recover more rapidly than adults.

Perhaps the most important implication of this study is one not mentioned by the authors. Most long term absences from school were ascribed in this survey to chronic fatigue syndrome, which reflects the fact that other serious childhood diseases no longer automatically result in this added disability. Many children who are successfully treated for malignancies and serious rheumatological disorders miss little school. Children with cystic fibrosis are unlikely to miss more than a few weeks in any year.13

The report on chronic fatigue syndrome by the joint working group of the royal colleges of physicians, psychiatrists, and general practitioners concluded that research should be directed in three areas: one was the management of the condition in children.5 Dowsett and Colby echo this and deserve support in their plea for research into the educational needs of these children.