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Quick Guide to the LTSA Survey
Part One
This is the abstract from a research paper into ME/CFS in UK schools published in 1997 in the Journal of Chronic Fatigue Syndrome. It is the largest epidemiological study of ME available to date (part-funded by Action for ME).
Long Term Sickness Absence due to ME/CFS in UK Schools: An Epidemiological Study With Medical and Educational Implications
ELIZABETH G. DOWSETT, MB. Ch.B; Dip.Bact., JANE COLBY, LAMSC; CERT. Ed.
Elizabeth G. Dowsett is Honorary Consultant Microbiologist to the South Essex Health Trust and to the ME/CFS clinic at St. Andrews Hospital, Stock Road, Billericay, Essex, CM12 0BH, United Kingdom.
Jane Colby is former School Principal, Member of the National Association of Head Teachers, Member of the UK National ME Task Force Focus Group on Children, Consultant for the Education of Children with ME.
Address correspondence to: Dr E G Dowsett 47 Drewsteignton SHOEBURYNESS Essex SS3 8BA United Kingdom.
ABSTRACT
A study was made to determine whether the recognition of multiple cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in one school is an unique experience. A five year retrospective period prevalence survey (1991-1995) was collated from sequential reports made in six English Local Education Authority (LEA) areas. By means of a confidential questionnaire circulated to 2942 school principals via internal mail, 1098 schools, comprising 27,327 staff and 333,024 pupils, were investigated. Details were obtained on age, gender, location in school sector, work pattern and morbidity. Forty-two percent of all medically certified long term sickness absence was ascribed to ME/CFS, this figure being well in excess of all other causes. This diagnosis was significantly associated with case clustering, variable geographical prevalence, a marked increase in the female:male case ratio at puberty and prolonged disturbance of educational potential. We conclude that ME/CFS in schools leads to serious economic and career problems. Redirection of research to special educational needs and to early diagnosis of infectious agents which can trigger ME/CFS in schools might prevent, at low cost, much chronic illness and education deficit.
KEY WORDS: CHRONIC FATIGUE SYNDROME, MYALGIC ENCEPHALOMYELITIS, VIRUS INFECTION, SCHOOLS: SICKNESS ABSENCE, EDUCATION DEFICIT.
INTRODUCTION
The current study was prompted by personal experience of an outbreak of “Summer Flu” with gastroenteritis in a village school. Seventy out of 230 9-11 year old children on the school roll were symptomatic. Following reassembly in the autumn, some 10% of those affected complained of profound fatigue and cognitive disturbance which had not resolved on follow-up two years later. Apart from one child, who had an encephalitic illness and was shown to have had a recent enterovirus infection in July, laboratory investigations were delayed and unhelpful. Relapse of the illness in these same pupils during the following year was demonstrably associated with superimposed infections due to Influenza A and parvovirus then circulating. Only a much larger epidemiological survey in a different setting seemed capable of answering the serious questions then posed.
[Excerpt from the Discussion:]
We conclude that research funding would be highly cost effective if directed specifically to the educational needs of pupils with ME/CFS and to the early investigation of infective agents associated with such a serious illness in schools.
[If quoting from the above or from the full research paper, please quote the following reference:]
Dowsett EG, Colby J. Long-term sickness absence due to ME/CFS in UK schools; an epidemiological study with medical and educational implications. J Chronic Fatigue Syndrome 1997; 3: 29-42
Part Two
The Original
Press Release
(Embargo: 00:01am
Thursday 22 May 1997)
New study shows:
ME is the
biggest cause of long-term sickness absence in UK schools - 51%
in pupils.
ME occurs in clusters - in one school a third of the staff had
ME.
Consultant microbiologist Dr Elizabeth Dowsett and Jane Colby, author of ME - The New Plague, studied 1098 UK schools representing a school roll of over 333,000 children and 27,000 staff over a 5-year period (1991-1995). This is the largest ever study of ME, and will be published on May 28 in the Journal of Chronic Fatigue Syndrome 1997 vol 3 (2).
This was a voluntary survey of 2942 schools in six widely spaced local education authorities carried out with their co-operation and assistance. Individual schools were guaranteed anonymity. Many declined take part, but the response rate was still a significant 37%. Nevertheless, the researchers were unable to use details of many cases and clusters known to exist in schools which did not respond and conclude that their figures are a gross underestimate of the true situation.
Colby says: "The figures are shocking, even without the other cases we knew of. This disease shows a very sinister pattern right across the school population. No-one can deny any longer how serious it is."
ME constitutes 42% of all long-term sickness absence (staff and pupils combined). In children the percentage is 51%, far in excess of any other condition. Cancer and leukaemia, the next largest category, only represents 23%.
Of the 1098 schools studied, 392 reported long-term sickness absence out of which 224 (57%) listed ME/CFS compared with the next numerical category (canccr and leukaemia) which was only reported by 161 schools.
20% of all schools responding had cases of ME. Schools were asked to list suspected cases separately and these were then excluded from the researchers’ calculations.
Of 885 individual sickness reports, 372 were due to ME/CFS
Other findings:
Prevalence:
On the basis of these voluntary responses, the average prevalence of ME was found to be 70 per 100,000 in children and 500 per 100,000 in staff. But due to the clustering pattern observed, averages are misleading. In one cluster, the prevalence in children calculates to 710 per 100,000 and in staff, to 5454 per 100,000. Also, the denominator used to calculate child figures (school pupil roll) is much larger than that for staff (school staff roll). One may see a cluster of 3 children with ME in a year group of 60, representing a full 5% of the group.
Infection:
39% of all cases occurred in clusters. The clustering pattern suggests that ME results from an infection. The biggest cluster extended over a number of schools in an area containing recreational water heavily polluted with sewage. This was suggestive of a mini-epidemic. The researchers want to see money spent on early diagnosis including microbiological investigation of infectious agents which can trigger ME in children.
Misdiagnosis:
There appears to be widespread misdiagnosis. A number of schools reported clusters of long-term sickness absence due to what had been diagnosed as glandular fever, one comprising 16 cases. BUT glandular fever (Epstein Barr virus) does not behave like this, nor does it show a sex bias, unlike ME (see Field’s Virology) and the researchers therefore want to see proper testing done for other viruses whose effects mimic glandular fever.
Age:
Cases show a dramatic rise over puberty and peak in the mid teens. This has big implications for education/exams. Peak prevalence in pupils was found to be 15 years and in staff 40 years.
Sex:
Cases in girls and women outnumber those in boys and men. In pupils the female/male bias was 2:1. In staff the bias was 4:1.
Educational Management:
Home Tuition:
Home Tuition was more generous in psychiatric/psychological illness and musculo-skeletal conditions than for ME. There was a huge difference in provision depending on area - ranging from 14% - 79%.
Part-time work:
There was a large difference in provision for part-time working for staff with ME depending on area - ranging from 38%-80%.
The study reveals an educational time-bomb with serious implications for Special Educational Needs budgets.
Children with ME require long-term distance learning support (such as home tuition) and special considerations for exams because the cognitive deficit caused by ME (visible on MRI, SPECT and PET scans) greatly worsens when they make the physical effort to get into school.
Dr Dowsett says: "These children have got to be taken as seriously as with any other neurological disease. They will not stabilise if they rush back to school. We have to give them our total support."
Colby says: "The purpose of education is to educate, not just to put children into schools. Social isolation can be addressed separately."
The Future
The researchers say that the total figures can never be known from a voluntary study, whatever its size. They believe that the government must now take responsibility for collecting the ME statistics as a matter of urgency.
About the Researchers
Dr Elizabeth Dowsett, Honorary Consultant Microbiologist to the South Essex Health Trust and to the ME/CFS clinic at St Andrews Hospital, Billericay. An internationally respected ME clinician and researcher, has personally seen over 3000 ME patients and holds records going back to 1916.
Jane Colby, former Headteacher; member, National ME Task Force Focus Group on Children; Consultant for the Education of Children with ME; author, ME - The New Plague. Formerly married to a GP and assisted in the practice. Recovering from ME.
Part Three
Further Work Required?
One aspect of this study was not widely publicised at the time. Of the six UK areas included, one area's results were anomalous. Despite recording the highest number of staff diagnosed with ME, it recorded only a handful of children diagnosed with ME. The reasons for this have yet to be investigated.
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