The Silent Epidemic – ME in Young People

Article by Dr E G Dowsett – April 2003

INTRODUCTION

Do children and adolescents suffer from ME? Simple observation and common sense tells most parents, teachers and doctors that they do and often more severely than adults. Yet there still remains a sizeable proportion of the general public, including professionals, who are prepared to ascribe the seriously disabling potential of ME in youth to anorexia, depression, school phobia or simply to a dysfunctional family. All are, at least, aware that ME in young people presents a considerable economic, educational and social burden.

HISTORICAL BACKGROUND

The association between ME and several species of paralyzing and non paralyzing neurogenic enteroviruses with epidemic and pandemic potential and which are capable of causing encephalitis, has been known since 1948. Since 1992 the disease has been classified as a neurological illness under the WHO designation ICD10, G93.3. In 1955, A J Wallis, a GP from Cumberland , UK was the first person to define the illness and to describe the variations in children. His definition has never been improved upon. In January 2002 the recent Chief Medical Officer’s working party on ME/ CFS in the UK gave clear directions on the care, support, educational and social management of ME in children assign that “neither the fact of a child or young person having unexplained symptoms or exercising selective choice about treatment or education for such a child, constitutes evidence of abuse”. Despite this statement, considerable numbers of children with ME continue to be removed from their families for psychiatric care in selective Health Authority areas.

THE MAIN PROBLEM

In recent years, there has been no funding made available and very few references can be found in scientific literature to possible methods of tackling these difficulties at the point where they most commonly occur – in the school and other educational settings.

THE INVESTIGATION

Our own interest in these young people was initially stimulated by personal experience of an outbreak of “Summer Flu” characterized by headache, sore throat and gastro-enteritis in a local village school. In late June, 70 pupils aged 9 – 11 years, out of 230 on the school roll, developed the ‘flu like symptoms. Following school re-assembly in September, some 10% of these symptomatic pupils complained of profound fatigue and cognitive disturbance, severe enough to require home tuition. Two years later their problems had not resolved. Apart from one pupil, admitted to hospital because of encephalitic complications in June who was shown to have suffered from a recent enteroviral infection, laboratory investigations were desultory and unhelpful, several families having already been referred for psychotherapy. In later years, relapses of this same illness in the same patients were associated with a seasonal circulation of Influenza A and Parvovirus epidemics. Of the many questions arising from the cluster of ME cases in a single school was a unique experience or whether, as we began to suspect, it would be duplicated elsewhere.

RESEARCH METHODS

With the support and co-operation of senior education staff, a search was made in six UK Local education Authority ( LEA ) areas, chosen initially for their varied geographical and socio-economic features, for all causes of medically certified long term ( over 2 months) sickness absence (LTSA) in pupils and staff. Confidentiality was assured in the collection of these details which was carried out only by senior educational staff and specifically excluded any personal identification. Additional information requested related to geographical location of the school, age, gender and school class grade or work areas of the sufferers; the size of pupil and staff roll; education provision or work adaptation for sufferers while sick and the outcome of these adjustments.

RESULTS OF THIS SURVEY

Between 1991 and 1995, we were able to collect details of all types of LTSA from schools with ME. In addition we gathered useful information from those without ME and from 63 private schools outside LEA jurisdiction. Excluding the “control” private sector, who details did not differ significantly from the public one, our survey comprised 1098 schools, 33,024 pupils and 27,327 staff – to our knowledge, the largest epidemiological survey of its type ever made in the UK .

SIGNIFICANT FINDINGS INCLUDE:

1. Prevalence of ME in the schools studied

Over one third of the schools providing information reported LTSA and of these 2/3 had cases of ME (230 pupils and 142 staff) suggesting a prevalence of in this population of 70/100,00 in pupils and 500/100,000 in staff – a rate some two or three times that quoted in other adult population surveys.

2. Types of illness causing LTSA in schools

Among the 885 individual sickness records received in 6 LEA ’s, ME was by far the commonest cause (41% overall, 33% in staff and 51% in pupils), followed by cancer and leukaemia (23%) general medical or surgical conditions (13%) musculo-skeletal problems (12%) psychiatric disturbance or virus infections (5% each).

3. Clustering of Cases

Using a definition of 3 or more cases with the same medical diagnosis in the same school, we looked at all types of illness falling within this category and found 54 clusters (36 due to ME, 7 to virus infections, 4 to psychiatric disturbance, 3 each to cancer/leukaemia and musculo-skeletal conditions and one to diabetes. 45 clusters, including all but one of virus infection, occurred in schools with ME, the exception being a school in close proximity to another school with ME. 4 small clusters (less than 6 cases) of cancer, musculo-skeletal conditions and psychiatric disturbance were recognised in schools with no evidence of ME. There was a noticeable difference from the large clusters of viral infection (variously described as “undiagnosed respiratory infection, ‘flu or glandular fever”, numbering up to 16 cases) associated with ME in the same school.

Of the 372 ME cases in pupils and 149 cases in staff 40% were distributed in schools as single cases; 78 (21%) as pairs and 145 (39%) as clusters of from 3 – 9 cases – a remarkably high prevalence of coincident ME and viral infections in selected geographical areas.

4. Geographical prevalence of ME

Though single instances were noted in all LEA areas but one, we were surprised to find the majority of ME cases-clusters associated with virus infection grouped in a LEA district which was by no means the largest, but characterized by its rapid suburban growth following population influx from the building and expansion of “New Towns” in Greenfield sites. It has always been a characteristic feature of certain epidemic infections (e.g. poliomyelitis) and of illnesses now suspected to be triggered by environmental factors (e.g. clusters of childhood leukaemia) that influx of new population into isolated rural or suburban communities may well introduce infection to an unimmunised population.

5. The effect of Age and Gender upon the prevalence of ME in schools

a) Of the 230 pupils certified as suffering from ME, 157 were female and 73 male, an F/M ratio of 2:1. The average age of sufferers was 13 years with peak prevalence at 15 years.

b) Gender ratios below puberty were more even, indicating a hormonal influence upon the known frequency and chronicity of the illness in females during child-bearing years as well as the distinctive alteration in immune function at puberty in females. The majority of pupil sufferers from ME were therefore located in senior schools.

c) Of the 142 staff with ME, 111 were female and 31 male – an F/M ratio of 4:1, influenced by the fact that most staff employed in the UK is female. This is especially noted in the “pre-school” and primary grades where females staff are more common and transmissibility of infection from pupils more likely. Female staff suffering from ME is therefore predominately located in primary or “pre-school/playgroup” grades.

d) Education and work modification for individuals with ME

Although varying education and work management patterns were used in sequence or in combination in all LEA ’s surveyed, the following appear to be key factors in reducing physical and mental over exertion which, together with secondary infection, are the commonest causes of relapse in ME.

PUPILS

Home Tuition for those too ill to attend school (but not suitable for the very sick who improve more rapidly if education is postponed until the illness has stabilised)

Modified Time Table which permits continued participation in selected school activities (excluding sport) and the taking of examinations sequentially over longer periods.

School Withdrawal which, in the absence of these concessions may oblige education “otherwise” at home. There is no evidence, however, that young people educated in this way fare worse than conventional school classes, while many sufferers from ME achieve results in the absence of school stress and exposure to infection.

STAFF

The average provision for OPTIONAL PART TIME was 50% (range 38-80%) but EARLY RETIREMENT was taken by 38% (range 27-100%). At an average age of 44 this represents a serious and probably avoidable loss of career potential compared with other illnesses.

SUMMARY

EDUCATION

Of all the symptoms associated with ME, disturbance of cognitive function is the most disabling and long lasting in both pupils and adult staff. It induces prolonged difficulties in maintaining wakefulness and attention, in concentration and memory, in language and mathematical ability. Poor appreciation of shape and judgement of distance, combined with motor dysfunction which affects balance and fine motor control, interfere with practical tasks and independence. Funding for research into the correct management and educational needs of those affected (such as that already offered to individuals with other causes of movement, speech or cognitive disorder) would prevent the rapid and sometimes permanent loss of educational potential in younger children at an age when brain plasticity and development is at a peak.

THE SEARCH FOR A CAUSE

Our epidemiological study originated with a group of children simultaneously suffering from a virus infection (and severe later complications) in a small rural school. The serious questions then rose in relation to child health, educational deficit and means of prevention pointed us to the need for a more comprehensive investigation. This led to a major survey of over 1/3 of a million pupils and some 30,000 staff at risk of similar disability in 1,024 schools. It discloses that ME is not spread evenly over the population, but is characterised by clustering and wide variations in geographical prevalence. With the aid of modern technology it would not be difficult to identify the specific agents which can trigger the onset or relapse of ME following seemingly trivial infections. Epidemiological research directed at the school population (the epicentre of spread to families and the local population), where good records are kept and prolonged follow up of physical and cognitive problems is possible, would undoubtedly be as economical in terms of diagnosis, management and prevention as it was of the understanding of the true prevalence and mode of transmission of poliomyelitis in the past.

THE FUTURE

Lack of adequate provision for Home Tuition, encouragement of early return to school and inappropriate intervention with graded exercise and anti-depressant therapy (causing damage to the rapidly developing juvenile brain) may well leave us with a generation of young people suffering from an educational deficit and of staff driven to early retirement. In years to come, these young people may also suffer the serious “late effects” of ME, setting off yet another generation of sufferers from palindromic disabilities indistinguishable from The Post-polio Syndrome.

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