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ME/CFS IN THE UK SCHOOL POPULATION

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1. THE PROBLEM
Do children and adolescents suffer from ME/CFS? Simple common sense tells most parents, teachers and doctors that they do and often more severely than adults. Yet, there remains a sizeable proportion of professionals in Health Care, Educational and Social Services who are still prepared to ascribe the numerous, disabling but seemingly unconnected symptoms of this illness in young people to anorexia, depression, school phobia or a dysfunctional family background. All are, at least, agreed that the illness presents a considerable economic, educational and social problem.

2. MARKET RESEARCH
No hopeful salesman can, nowadays, expect to succeed without prior market research and no-one intending to raise a bank loan for such a purpose will be considered without a well researched business plan. Unfortunately, when we turn our attention to human disease, conclusions are often reached without prior study of the WHO, WHERE and WHEN which can lead to effective consideration of WHY. In medical terms, this is called EPIDEMIOLOGY, which means the study of human conditions in relation to their environment rather than, for example, the behaviour of small animals or tissue cultures in laboratory setting.

3. HISTORICAL BACKGROUND1
Over 60 years ago, epidemiological studies of ME/CFS were commonplace and usually initiated by doctors who, lacking modern technology, simply used their eyes and ears. Of over 70 recorded epidemics of ME/CFS since that time, 13 clearly mention young people while one is entirely devoted to the age group. These old surveys were small and without government funding but they clearly deliniated present day findings such as female predominance of cases, peak incidence at puberty, variable prevalence linked closely to seasonal and geographical features (summer/autumn onset, cool/temperate climates and rural or suburban settings) as well as the key role of schools and similar institutions in the spread of the illness, with clustering of cases within families and schools. The serious disabling potential and chronicity of ME/CFS leading to relapse, is always noted.

4. WHY DID WE EMBARK ON OUR SCHOOL SURVEY?
To our knowledge, no government anywhere in the world has yet funded an epidemiological survey of this type and scale in schools. 10 years ago, a group of sufferers from ME/CFS who were also teaching professionals, parents or carers of young people similarly affected, conducted a postal survey of sufferers under the age of 25 years which stimulated a response from nearly 600 young people in the UK and abroad. The results were disheartening but they supplied the initial impetus to seek further information about the WHO, WHAT, WHERE and WHEN with an unexpected bonus in relation to WHY.

WHAT DID THIS SURVEY DISCLOSE?
There were 3 major findings:-
a) Only 29% of respondents under the age of 25 were in full time education, training or work, while 34% were totally excluded from all three. The remaining 37% were making various compromises, few of which could be considered satisfactory.

b) An enormous loss of independence and self esteem was reported, with additional grief at the general disbelief expressed not only by the press and by various professionals but at the loss of support even from friends, colleagues, family members, and those in a previously loving relationship.


c) The bonus was a personal invitation to study, at close hand, the consequences (after 2 years) of a seemingly trivial respiratory/gastro-intestinal infection causing symptoms in 1/3 of a village school roll, leaving some 10% of children so affected with chronic relapsing energy problems, musculo-skeletal pain and disabling prolonged cognitive disturbance. Early laboratory investigation was missed but relapses in the following year were significantly associated with the viruses then circulating in the school (Influenza A and parvovirus infection


5. HOW DID WE SET UP THE 1991-95 SCHOOL SURVEY?2
With a clear indication from the young people themselves of what to look for, we set out to find if such a cluster of ME/CFS cases in a single school was a unique event or if (as we already suspected) it would be duplicated elsewhere. We hoped that, if successful, the study might provide clear indication of a cause as well as some helpful pointers to diagnosis, management, treatment and prevention. Since we were not sanguine about the funding of our “business plan” by medical or charitable agencies, we were grateful for the prompt and unreserved backing of the educational profession to whose understanding of the importance of this subject, all students and young sufferers from this illness must pay tribute.

6. WHAT METHODS WERE USED?
A search was made in six English Local Education Authority (LEA) areas, chosen initially for their widely varied geographical, economic and social mix, for all causes of medically certified long term sickness absence in pupils and staff. Confidentiality was assured in the collection of these details which were handled only by senior educational staff and specifically excluded all personal identification. The information requested included geographical location, age, gender and school class location of sufferers, size of pupil and staff roll and education or management provision while sick as well as the outcome.

7. WHAT WERE THE MOST IMPORTANT FINDINGS?
Between 1991 and 1995 we were able to collect details of all types of long term medically certified sickness absence from schools with this problem as well as useful information from those without and from 63 private schools outside the LEA jurisdiction. Excluding the private sector, whose details did not differ significantly from the public one, our survey comprised 1,098 schools 333,024 pupils and 27,327 staff - the largest epidemiological survey of this type made to date.

Significant findings included:-
a) Prevalence of ME/CFS in Schools
Over one third of the schools providing information reported long term sickness absence and of these, 2/3 had cases of ME/CFS (230 pupils and 142 staff) suggesting a prevalence in this population of 70/100,000 in pupils and 500/100,000 in staff - a rate some two or three times that quoted in other adult population surveys.

b ) Types of Illness Which Cause Long Term Sickness Absence
Among the 885 individual sickness records received in 6 LEAs, ME/CFS 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 and virus infections (5% each).

c) Clustering of Cases
Using a definition of 3 or more cases with the same diagnosis in the same school, we looked at all illness falling within this category and found 54 clusters (36 due to ME/CFS, 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/CFS, the exception being in close geographical proximity. 4 small clusters (less than 6 cases) of cancer, musculo-skeletal conditions and psychiatric disturbance were noted in schools with no evidence of ME/CFS. This was a noticeable difference from the large clusters of viral infection (variously described as respiratory/gastro intestinal, “flu” or “glandular fever” numbering up to 16 cases) associated with ME/CFS. Of the 372 ME/CFS cases in pupils and staff 149 cases (40%) were distributed as single cases 78 (21%) as pairs and 145 (39%) as clusters of 3-9 cases, a remarkably high prevalence of coincident ME/CFS and viral infection in selected geographical areas.

d) Geographical Prevalence of ME/CFS
Though single instances were noted in all LEA areas but one, we were surprised to find the majority of ME/CFS case clusters associated with virus infection grouped in a LEA district which was by no means the largest but characterised by its surburban growth after much recent population influx from the building and expansion of “New Towns” in green-field sites. It has always been a characteristic feature of certain epidemic infections (eg. poliomyelitis) and of illnesses now suspected to be triggered by environmental factors (eg. childhood leukaemia) that, when isolated rural or suburban communities which have an established and naturally acquired “Herd immunity” are subjected to an influx of new population, the prevalence of such illnesses increases.

d) The Effect of Age and Gender on the Prevalence of ME/CFS in Schools
Of the 230 pupils certified as suffering from this illness, 157 were female and 73 male, a F/M ratio of 2:1. The average age was 13 with peak prevalence at 15 years. Sex 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. The majority of these sufferers were located in senior schools.

Of the 142 staff with ME/CFS, 111 were female and 31 male, a F/M ratio of 4:1, influenced by the fact that most staff employed in schools are female. This is especially noted in the primary and junior sectors where female staff are more common and there is close personal contact with children suffering from various infections and where the majority of staff suffering from ME/CFS are located.

e) Education and Work Modification for ME/CFS
Although varying education and work management patterns were used in sequence or in combination in all LEAs surveyed, we consider the following to be key factors in reducing physical over exertion and mental stress which, together with secondary infection, are the comonest causes of relapse in subjects with ME/CFS in the school environment:-

(i) Pupils:
Home Tuition for those too ill to attend school (but not generally suitable for the
very sick who make a better recovery if education is postponed until stabilisation
of the illness).

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

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

In our survey, provision over the 6 LEAs for HOME TUITION averaged 48% (range
14-79%), MODIFIED TIME TABLE 57% (range 50-86%) and SCHOOL WITH DRAWAL 6%
(range 0-17%). Though some other medical conditions enjoyed more generous provision, the
majority of pupils with ME/CFS were not removed from the school roll.

(ii) Staff
The average provision for OPTIONAL PART TIME was 50% (range 38-80%) but
EARLY RETIREMENT was taken up by 38% (range 27-100%) representing a serious
and probably avoidable loss of career potential compared with other illnesses.

SUMMARY

1. Of all the symptoms associated with ME/CFS, disturbance of cognitive function is the most disabling and long lasting in both pupils and staff3. It induces prolonged difficulties in maintaining wakefulness and attention, in concentration and memory, in language and mathematical ability and in appreciation of shape and judgment of distance which, combined with motor dysfunction affecting balance and fine motor control interferes with practical tasks and independence. Funding for educational research4 into the correct management and educational needs of those affected (such as that already received by individuals with other movement, speech or cognitive disorders) would be well repaid by preventing the repaid loss of educational potential in pupils at an age when brain development is at its peak.

2. Our survey into clusteirng of ME/CFS cases in schools and the wide variations in geographical prevalence disclosed, suggests that it would not be difficult to identify specific infections which can trigger the onset or relapse of ME/CFS. Epidemiological research directed to the school 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.

3. The recent issue of CR545 and the guidelines relating to management of young people with ME/CFS (eg lack of provision for Home Tuition, encouragement of early return to school, intervention with anti-depressant therapy and graded exercise) may well leave us with a generation of young people suffering from educational deficit and an inability to assist themselves back into work, to meet government targets.

PS. Since the publication of our work, a community paediatrician, unaware of our work and unknown to us, has, in subsequent years, completed a similar epidemiological survey in just two boroughs of one LEA mentioned in our study, with surprisingly similar results. This work is prepared for press but has not yet been published in the UK6.


References

1. BELL DS. Children with Myalgic encephalomyelitis) Chronic Fatigue Syndrome : overview
and review of the literature In : HYDE BM, GOLDSTEIN J, LEVINE P eds. The
Clinical and Scientific basis of Myalgic-encephalomyelitis/Chronic Fatigue Syndrome,
Nightingale Resarch Foundation, Ottowa, Ontario, Canada. 1992 : 209-216.

2. DOWSETT EG, COLBY J. Long-term Sickness Absence due to ME/CFS in UK Schools
An Epidemiological study with Medical and Educational Implications. Journal of Chronic
Fatigue Syndrome. 1997; 3(2) : 29-42.

3. BASTIEN S. Patterns of neuropsychological abnormalities and cognitive impariment in
adults and children In: HYDE BM, GOLDSTEIN J, LEVINE P eds. The clinical and
scientific basis of Myalgic-encephalomyelitis/Chronic Fatigue Syndrome, Nightingale
Research Foundation, Ottawa, Ontaria, Canada. 1992 : 209-216.

4. COLBY J. The School Child with ME: British Journal of Special Education. National
Association of Special Educational Needs. 1994; 21: 9-11

5. ROYAL COLLEGE OF PHYSICIANS, Chronic Fatigue Syndrome - Children and CFS.
1996; CR54 : 29-33

6. ARZOMAND M.L. Chronic Fatigue Syndrome among School Cildren and their Special Needs – Journal of Chronic Fatigue Syndrome (Haworth Prtess Inc New York London) 1998; 4(3) 59-69

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