Focusing on Children

by Jane Colby
Former headteacher
Child Services Development Officer, Action for ME
Member of the National Association of Educational Inspectors, Advisers and Consultants

The following is the full text of a feature, an edited version of which appeared in the CFIDS Chronicle of America, Fall edition 1997

"Schools Hit by ME Plague": The Guardian, London, UK

On the morning of May 22 1997, the new Prime Minister of Great Britain shared the front page of one of the UK's most respected national newspapers with the statistics of ME/CFS in UK schools. Published in the Journal of Chronic Fatigue Syndrome, our paper revealed that between 1991 and 1995, ME/CFS caused over half of all long-term sickness absence in the studied student population.

Just how big the story would get, no-one could have predicted. On national television it had top billing. The full media circus continued for days and the spin-off has been the creation of greater awareness of ME/CFS in children throughout the UK than anyone here can remember. In November '97 the charity Action for ME, for whom I now work as Children's Officer funded by the BBC Children in Need Appeal, held the first national conference for educational professionals on the needs of children with ME/CFS. It was attended by almost 200 delegates including government representatives from the Department for Education and Employment, Educational Psychologists, Education Officers, Hospital and Home Education Co-ordinators and Tutors, and Educational Welfare Officers.

There was a strange reaction to the JCFS study from the British Medical Journal. Perhaps forgetting that a peer review process had been conducted, it called the study "poor" and suggested that the researchers, consultant microbiologist Dr Elizabeth Dowsett and myself, were biased. Since then, the publication of a 400-word letter in the BMJ's pages headed JOURNAL WAS WRONG TO CRITICISE STUDY IN SCHOOLCHILDREN, has cleared up the misinformation that was given.  But the incident shows how bedevilled attempts are to unearth the facts of this illness. The rise of ME/CFS has coincided with the rise of patient autonomy. Patients who find their treatment unhelpful or even harmful are speaking out, and doctors, like many other professionals including teachers, have slipped from their pedestals. Many see this is as a relief - they no longer have to put themselves under the intolerable stress of being oracles of infallible information - they can learn alongside their patients or pupils. But some feel vulnerable and threatened. An increasingly prevalent and much misunderstood illness which they cannot treat makes many doctors feel, in the words of one paediatrician, "quite helpless".

The new statistics thrown up by our study should not really have been surprising, given that our own Royal Colleges of Medicine had estimated that up to one million Britons might have Chronic Fatigue Syndrome. Children represent around 10% of clinic cases, and that is without including teenagers. The study is the largest of ME/CFS to date. It covered a school roll of 333,327 children and 27,024 staff, took five years, looked at six widely spaced Local Education Authorities and revealed that of the children off school long-term sick, 51% had ME/CFS. Adding in the staff figures the statistic was still 42%. Cancer and leukaemia, the next largest category, was only 23%.

A key finding was that students (and staff) in areas providing low levels of home tuition and modified timetables were more likely to withdraw from school entirely. It seems that where parents cannot get the help they need they are voting with their feet. This makes them ineligible for much of the help that could be offered by the official state education system. And that is the crux of the problem. Where we give no appropriate help, we risk developing a two-tier education system for ME/CFS-affected students, one for those who can afford private tuition, access to the Internet and other resources, another for those who can't.

How should we educate these young people? Should we simply return them to school as soon as they can drag their bodies there, no matter how detrimental it is to their educational achievements, no matter how ill they feel and no matter how much we expose them to new infections and provoke relapse? Different Local Authorities obviously have differing views. The provision of home tuition ranged in our study from 14% to 79%, and of modified timetables from 50% - 86%. The help you get depends upon where you live. In the UK, even where home tuition is initially provided, there is often great pressure on the families somehow to wave a magic wand, get their children better, and into school. No-one has the power to do that. The disease runs its course, relapsing and remitting, and until it has stabilised and school attendance may begin to be productive rather than destructive, the cases who do win long-term home tuition show that excellent exam results are obtainable if the energy reserves of the body are preserved so that the mind can function. The debate should not be about whether children should be put back into schools or not, but about what education is for in the first place. If it is to educate, to enable good qualifications to be obtained, then the educational result is more important than in what environment it is achieved. The environment is secondary.

Such improvements in policy will take time. Some paediatricians have until recently not even recognised the existence of ME/CFS in children, and where they have, the psychological model of the disease has taken hold. The refusal of aid seems to stem from the conviction that there is no lasting physical problem, even if there may have been an initial physical illness. Yet a follow-up to the famous Icelandic epidemic of the forties, named at the time "a disease epidemic simulating polio myelitis", showed that many people still had physical limitations nearly half a century after the event. That outbreak began in a school, centred on schools and led to over 400 cases involving both teachers and children. The peak age was between 15 and 19 years with a 3:1 female to male ratio.

In accounts of 70 outbreaks of ME/CFS under various names since 1934, 13 mention children and one is solely concerned with them. All but one note peak prevalence at puberty and 7 point to relapses and chronicity. Three specify other epidemiological features including predominance of female gender, summer/autumn onset, contact with contaminated water, milk or food, and clustering of cases within school and family contacts. In 1956 Lyle documented a Lancashire epidemic where children bore the main brunt of the illness, and again it clustered in schools and families; in this case, Echo 9 enterovirus was isolated.

Our study mirrors these earlier ones. Statistics were collected from schools; since the 1991 UK School Attendance Regulations made it obligatory to categorise absences from school as Authorised or Unauthorised, School Principles/Head Teachers here have had a duty to establish the genuineness of cases of long-term sickness absence so these figures can be relied upon. The resulting confidential documentation such as doctors' letters and medical certificates covered a widespread section of the medical profession due to the geographical locations of the areas studied. The diagnosis of ME/CFS was significantly associated with case clustering (39%) variable geographical prevalence, a 3:1 female:male case ratio after puberty (2:1 overall) and prolonged disturbance of educational potential. Prevalence was estimated at 70:100,000 (500:100,000 in staff) with the peak age in students being at 15. Like the US physicians' guidelines on Chronic Fatigue Syndrome, we recommend that clusters be reported for early investigation.

Studies in schools here are hampered by legal restrictions and a reluctance to admit to any problem which might cause bad publicity. A study by the Suzy Lamplugh Trust on violence in schools (1997) shows that schools fear bad publicity even more than violent attacks on teachers. Schools are in competition for funds (via pupil rolls) and for good inspection reports. Education Authorities generally expressed reluctance to provide statistics to us and needed reassurance about confidentiality. However, the statistics for control diseases, e.g. leukaemia, matched those already known, giving a good indication that the responses were reasonably balanced, and the 1098 responding schools (out of 2942 contacted) also represented a balanced spread between age sectors. A pilot study in fee-paying schools showed the same illness pattern but the response rate was lower (27%) probably because of pressures on corporate image. No-one will know the true figures unless reporting becomes mandatory. Evidence for a reluctance to diagnose ME/CFS in children in one district was noted, the standard deviation between areas being 6.91 in staff but 14.43 in children. Because this area had the highest number of ME/CFS staff cases, the standard deviation figures suggest not that the authority in question was an exception in having very few child cases, but that their illness had either been diagnosed under another medical name or remained formally undiagnosed. The parameters of the study excluded identifying these children by other means. Interestingly, a community paediatrician doing his own study in one of the areas we focused on has received a poorer rate of response amongst schools than amongst either doctors or parents, who do not appear to have the same motivation for withholding data. The prevalence uncovered is identical to ours, with other significant features also duplicated.

Appropriate education for children with ME/CFS differs considerably from that needed in other illnesses. Because of the cognitive dysfunction exacerbated by effort (lesions similar to polio are observable on MRI scan and lowered blood flow to the brain occurs after mental and physical activity) together with physical deterioration following too ambitious re-integration to school, there is a need for long-term special educational provision.

The educational philosophy I have been developing, which I call STATUS RESPONSIVE EDUCATION, advocates a system which is responsive both to the fluctuating Health Status of the pupil i.e. has the ME/CFS stabilised? and the Learning Status i.e. how efficiently is the brain functioning? The overall principle is simple: TARGETING SUCCESS. We must not continue to set up our young folk to fail, reinforcing that failure by ever more negative experiences engendered by inappropriate attendance in school. Nothing succeeds like success. We must build self-esteem and future potential by allowing students to be taught in conditions which will minimise their neurological dysfunction so as to maximise their achievement. This will be a GOAL-ORIENTED ENVIRONMENT such as the home or a small unit, with the goal being good educational results. Such an educational goal is not necessarily the same goal as that which a doctor may have.

We must develop a FOCUSED CURRICULUM for each student, which means reducing it to a few key subjects in which they are interested, to avoid dissipating the little mental energy they have. We must adopt the concept of END-ON EXAMS which means sitting examinations singly i.e. not all in the same year, perhaps beginning at an earlier age than usual. These exams need to be taken in ME-friendly conditions, which may be the home. One boy of 13 has in this way achieved a starred A grade in History GCSE, normally taken at 16, despite chronic disabling ME/CFS, and he is not an isolated case. We must therefore aim at LONGITUDINAL ACHIEVEMENT, so as to build a portfolio of qualifications year by year rather than imposing a huge programme of simultaneous exams, which forces down the grade achieved and may even force students to pull out altogether. HEALTH BEFORE WORK is also a Key Concept. Just as the old Hippocratic Oath involves promising to "do no harm" so the way we educate children with ME/CFS should also do no harm.

Finally, we must DE-STRESS these young people by removing the pressure to be like everyone else. They are not like everyone else. Nothing is so unfair as to treat them as if they were. We must live in the real world, and the real world is full of children who will end up long-term sick, without an education and without qualifications unless they get our help. We must not fail them.

Jane Colby's book on children with ME, Zoe's Win, was published January 2000 by Dome Vision (ISBN 0 9537330 0 9). The publisher's information:

Zoe's Win by Jane Colby is a stunning book - the first of its kind. Telling the story of a child with ME in a way that ensures no-one will remain unmoved, it includes a self-help section and, best of all, unequivocal advice for doctors and teachers: ME is an organic illness, court cases result from inappropriate treatment, and education must by law be tailored for the children's needs. The National Curriculum is unsuitable for children with ME and many fare better out of school than in it. Reviews by Mark and Anna Daffin (aged 15 and 13, TYMES Issue 30) give it 10 out of 10, and Dr Nigel Hunt of the CMO's Working Group recommends it as "a truly welcome addition to the ME literature". Includes the full statistics from the BBC's "Panorama" on ME in children. Orders are post-free if placed via Young Action Online, PO Box 4347, Stock, Ingatestone, CM4 9TE. Cheques payable to the publisher, Dome Vision. Price £7.95 (£1 off a second copy). For orders from outside the UK, please send a sterling cheque. Add postage/packing as follows: Europe £1.25; World Zone 1 (eg USA, South Africa) £2.25; World Zone 2 (eg Australia, New Zealand) £2.55. The offer of £1 off a second copy still applies but add another 50p postage (World Zone 2 add £1).

Jane Colby's earlier book, ME - The New Plague, on the suspected links between CFS and polio, is available from Young Action Online and all good bookshops. Signed copies are also sometimes available; email jane@youngactiononline.com to ascertain availability.