By Jane Colby

Jane is Chief Advisor and Children’s Officer for Tymes Trust. A former head teacher and Consultant for the Education of Children with ME, she is author of Zoe’s Win, ME-The New Plague, ME Guidelines for Schools and numerous papers and articles. She writes for medical and educational journals and is co-author with Dr EG Dowsett of ME in UK Schools (Journal of Chronic Fatigue Syndrome 1997). She is a member of the UK government Chief Medical Officer’s Working Group on CFS/ME.

In 1997 the largest study of ME to date was published, causing a furore in the medical press. The study investigated the pattern of ME in British schools and revealed statistics so huge that they found their way onto the front page of the Guardian newspaper under the headlines Schools hit by ME Plague.

Dr Elizabeth Dowsett, a renowned ME expert, had approached me in 1991 because she had been given details of an outbreak of ME in a village school following an epidemic of gastro-enteritis. She wanted to know what was happening countrywide. Our 5-year study involved collecting statistics from a school roll of over 333,000 UK pupils and 27,000 school staff. Major findings included the following:

• 51% of pupils on Long Term Sickness Absence from school were suffering from ME. This far exceeded the figures for any other illness; cancer and leukemia, at 23%, formed the next largest category.
• 39% of cases occurred in clusters of both staff and pupils. A further 21% occurred in pairs. In Japan, a pair has been defined as a cluster; had we included pairs in our own cluster figures, this would have meant that a total of 60% of cases were in clusters. The pattern observed was consistent with a condition initiated by infection.

In the year 2000, three years after the publication of this study, the only serious attempts to modify education for pupils with ME in order that they may access learning and achieve success have been limited to local initiatives. No national policy exists for the education of these children. As a result, misperception of the nature of the disease in educational institutions has caused many children to relapse in attempting to attend school. We are making our children sicker in the name of education.

As a former head teacher, I am the first to admit that health must come first. Educational issues (i.e. school attendance, National Curriculum requirements, examinations, special educational needs) frequently trigger disputes between LEAs and families into which doctors are drawn. Sometimes these disputes even lead to case conferences and child protection proceedings, with some parents being labeled as having Munchausen’s Syndrome by Proxy, a rare condition where someone harms another person in order to gain attention for themselves.

The BBC programme Panorama of November 1999 highlighted this problem. The BBC health correspondent Mathew Hill and I collaborated to devise a questionnaire, which was sent to all the families in Young Action Online. The response rate was 62% and statistics as reported by the BBC revealed that:

• 59% of families were told by doctors that their children’s illness was caused by psychological problems.
• 5% had undergone psychological treatment. Their parents all reported it either had no effect or made their children worse.
• 7% of children from families questioned had been subject to child protection proceedings (i.e. court proceedings either threatened or carried out).
• 15% of families were told that it was their psychological problems that were causing the child’s illness.
• A high proportion of parents, 4% were branded with Munchausen’s Syndrome by Proxy (MSBP). This represents one in 18 families surveyed. (National Statistics show the syndrome effects just one in 100,000 families).

If these statistics are representative, then out of every 100 families whose children contract ME, 7 will be threatened with having their child taken into care and 4 will be thought to have MSBP. In order for this situation to improve, doctors, teachers and parents will need to collaborate in caring compassionately for the sick child, putting aside out of date perceptions of ME, believing what the child says, and allowing the child/young person some say in the management of what is, after all, their own life.

The Management of ME in children

Managing a case of childhood ME is not the same as managing an adult case, because children have to be educated by law and inappropriate educational methods can undermine the doctor’s management. However, good educational management can be combined with good medical management so that they become two sides of the same coin. Academic success, so far as health and ability permits, can thereby be achieved without provoking further deterioration in the child’s condition. This gives an enormous boost to confidence and self-esteem and also helps the child obtain qualifications for the future.

The Collaborative Care Management Model

GP Tutor Dr Nigel Hunt and I, in my capacity of Children’s Officer with Action for ME, designed this model jointly. It is simple in concept and has been found to work well. Sarah Gill, the teenage girl whose case formed the basis of the development of the model, obtained a Grade B in her GCSE despite serious illness and disability. The report is to be found on the Young Action online website at: http://www.jafc.demon.co.uk/yaonline/

The key point of the Model, which identifies the child as the Client, is an Action Framework for General Practitioners, which acts as a useful checklist.

The Action Framework

1 Diagnose (either by GP or through referral) as promptly as possible, to free up the family’s access to support from various agencies.

2 Inform the family of relevant benefits and practical support available.

3 Maintain regular contact with the family to monitor health of child and treat symptoms as appropriate.

4 Give details of preferred patient organisations to the family.

5 Identify child’s learning status (does attendance at school exacerbate illness?) and long term aims.

6 Liaise with LEA/school set up to learning programme which will help to achieve these aims without endangering health.

NB There is no legal requirement to attend school: social contact can be provided for separately. Modern technology is resulting in the proliferation of distance learning facilities.

It would be a serious omission for me not to comment here on the role of psychiatrics in the treatment of ME, now often called Chronic Fatigue Syndrome. CFS is an umbrella term, which was identified by the National ME Task Force (Westcare) as combining the neurological disease of ME with other fatigue inducing conditions. This is a controversial area, with psychiatric treatment often being applied to children. Cognitive Behaviour Therapy and graded exercise, often favoured by psychiatrists, may have their place in helping some people with certain kinds of fatigue illnesses, but many children with typical cases of ME, according to both them and their parents have been made far worse, and families are beginning to take cases to court and seek publicity for their plight.

There is a divide in the medical profession as to the efficacy and safety of this method of treating ME. The idea that ME is a psychological condition has been largely disproved by the great number of physical abnormalities found in the brains and bodies of those patients. If we look back a few years, Winter Vomiting Disease, which was labeled during one particular breakout as mass hysteria, is now known to be caused by the Norwalk Virus. In the 21st Century, it is surely time to learn from such mistakes. Early investigation of every childhood case of ME would assist us greatly in identifying any viruses, which may have triggered it.

A New Teachers Code

Sadly if I analyse the reasons why children with ME and their parents ask for help, virtually 100% of those with whom I have dealt personally have been disbelieved by someone, somewhere along the line. Usually this has come from a doctor, teacher or other professional but sometimes from a member of their own family, or even from all three.

The reasons for disbelief are usually:

• The physical signs of their illness (e.g. pallor, shaking, or shivering, unsteady gait, clumsiness, twitching muscles, vacant expression reminiscent of petit mal etc.) have not been closely enough observed.
• Their own descriptions of how they feel (too hot in a cold atmosphere, too cold in a hot atmosphere, nausea, pain, weakness, malaise etc) have not been given sufficient attention, with some children being told that they are not really in pain at all.
• Their explanation of things which happen to their bodies when they do too much (heart palpitations, exhaustion to the point of collapse, inability to understand what is said, difficulty speaking or remembering words, faintness, numbness etc.) have been given little credence or put down to psychological factors.

Children are in a very vulnerable position when they leave their homes for a day at school. They depend on teachers for their well being as well as their education. Teachers can often help by the simplest of actions. It is important to remember, for example, that emotional distress is often an early sign of exhaustion and can be well alleviated by a rest, whereas shakiness, disorientation and malaise is often a sign of low blood sugar and can be alleviated by a snack.

Far from being psychological, the child’s symptoms are indicative of various malfunctions. These malfunctions can lead the unwary into danger; for a teacher to insist on physical education, for example, is unwise as it can not only cause relapse but can affect the heart during certain stages of the illness. We know for example, that exercising hard with influenza can lead to heart attack.

I would like to use this book as an opportunity to launch a simple code for teachers of children with ME, who are often in direct contact with children in key situations where these signs and symptoms manifest themselves:

OBSERVE
LISTEN
BELIEVE

Key principles for teachers to remember are:

• The full National Curriculum is not a suitable programme for children and students with ME. Because of cognitive disturbance including, very often, severe memory malfunction, children with ME in general cannot study many subjects at one time without detracting from success and also, in may cases, exacerbating their illness.

• Content of courses needs to be minimised. The student’s memory and store of energy are not, in general, sufficient to enable them to follow the full course.

• Examinations need to be tailored to the requirements of the illness. The maximum amount of the student’s energy needs to be utilized for the examination in order to achieve the best grade possible; therefore they often need to avoid travel and take the exam at home, they need rest/food breaks and extra time, and sometimes an amanuensis who can write for them or the use of a keyboard, since manual writing can be painful and physically difficult. The examination should be scheduled for the time of the day when their brain is at maximum arousal, typically the afternoon.

Children with ME are not only unwell, they also have Special Educational Needs by virtue of the brain dysfunction inherent in the condition. The Special Educational Needs Co-ordinator needs to be aware of their difficulties and an Individual Education Plan should be established. The school medical service can also offer invaluable support. Arrangements such as those above can be personalisd to fit the individual case and will help greatly to level the playing field for children whose illness severely disadvantages them through no fault of their own. We must not fail them.

The last word should perhaps go to the doctors and teachers who have recommended and used these methods and, of course, to the families who are in receipt of them. The overwhelming verdict given in letters, e-mails, phone calls and meetings is that they are practical and affordable. And they work.

From the book Zeo’s Win by Jane Colby. Published by Dome Vision, Rodmans Hoppett, Ongar Road, Flyfield, Essex CM5 0RB .In the year 2000. ISBN NO: 0-9537330-0-9. Further information can be obtained from the website www.youngactiononline.com.

October 2001