I'm not tired, I'm sick

It's not wilfulness, nor is it school phobia. ME or Chronic Fatigue Syndrome is a genuine illness that affects at least 25,000 British children, writes Diana Hinds
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The Independent Online
When a child who has been previously happy, healthy and doing well at school is suddenly without energy, complaining of aches and pains, and sleeping much of the day for weeks on end, parents draw the obvious conclusion that the child is ill, possibly seriously. It is likely that the child is suffering from ME (myalgic encephalomyelitis), otherwise known as Chronic Fatigue Syndrome. But the chances of a GP or paediatrician diagnosing the disease will depend very much on where the child happens to live.

Such is the controversy around ME in adults - Does it really exist? Is it a purely organic illness, or is it basically psychological? - that many doctors will hesitate to diagnose it in children, according to Dr Nigel Speight, consultant paediatrician at Dryburn Hospital in Durham.

An estimated 25,000 children suffer from ME in this country (around 10 per cent of known cases), but because many children are misdiagnosed, the true figure is probably much higher. Not infectious itself, ME is thought, in most cases, to be triggered by a previous viral infection (such as glandular fever or flu). Children are particularly susceptible to ME between the ages of 10 and 16 - although it has been known in children as young as four - and the disease can persist for six or seven years in severe cases, thus wiping out a large chunk of childhood.

A growing number of consultants and GPs now accept, like Dr Speight, that ME is a primarily organic illness: a disturbance of brain function, affecting such things as memory, concentration, balance, sleep rhythm, appetite and hormone production, combined with exhaustion, which may come on 24 hours or more after mental or physical effort. Sufferers experience pain in muscles and joints, and severe headache is especially common in children.

The illness may take a mild, moderate or severe form, and, again because of the controversial aspects of ME, may go undetected for a year or more. For schools, particularly if they have not encountered ME before, spotting the signs can be difficult because of the fluctuating nature of the illness; children will not look as if they are ill, and may be perfectly active one day and weak and out of sorts the next.

In a new survey by Jane Colby and Dr Elizabeth Dowsett, one in five schools, out of 1098 studied, reported cases of ME, and 42 per cent of all long- term sickness absence (children and staff) was ascribed to ME. The fact that in the survey ME was found to occur in clusters suggests an infectious agent behind the disease, rather than simply psychological factors.

But there are yet more cases where ME in children is wrongly labelled as depression, anorexia, or, most commonly, school phobia, and the sufferers are referred to psychiatrists.

As Dr Alan Franklin, a consultant paediatrician in Chelmsford, Essex, explains, there are no official criteria for school phobia, but a fundamental difference from ME is that while a school-phobic child will have separation anxiety as a main underlying factor and be happy to do things at home but not at school, a child with ME will feel equally bad at home and at school.

Another common misconception - among teachers, and people outside the family - is that just because a child with a moderate case of ME may have sufficient energy one day to, say, ride her bike, this means she cannot really be ill at all. What these people do not see is the physical toll that the bike riding - in itself so important in helping to keep the child's spirits up - takes, perhaps as much as a day later, when the child is unable even to get out of bed.

Even when ME is recognised, then, the nature of the illness may be misunderstood to the extent that the child is forced to go back to school too soon, which causes their condition to deteriorate further. For pupils with ME in a big comprehensive, just the noise of the classroom and the physical effort of lugging books around the building can be hugely wasteful of their energy.

Far more productive is for them to be taught at home, until they are sufficiently recovered to cope with school life, even on a part-time basis. But here again, the attitude of the local authority to paying for long- term home tuition varies very much in different parts of the country.

Some authorities are reluctant to provide any home tuition at all; others will not agree to a combination of home tuition and part-time school as the child improves. Beth Tandy, a 15-year-old who has had ME for the last seven years, won a recent High Court victory, in which the judge ruled that East Sussex Council had acted unlawfully in reducing her home tuition from five to three hours a week in the interests of cost-cutting.

For pupils with severe ME, getting a statement of special needs, to ensure they receive sufficient help whether at home or at school, may also be extremely difficult in practice, especially since there is no national policy on ME for special-needs teachers. Jan Mogg, for example, has spent three years battling for a statement for her 13-year-old son Charles, who is too ill at present even for home tuition, but who will need help as he recovers.

"What hits you most is the overwhelming ignorance in the community at large about ME," says Mrs Mogg. "The special needs teacher at Charles's school seemed to think he was just being wilful."

Mike Downes, county co-ordinator for the visiting teacher's service in Norfolk, deals with about 40 cases a year of children with ME, and has learnt, he says, through experience, that it is futile to send a child back to school too early. He has funded home tuition in some cases for four years or more, as well as group tuition for similarly affected children living in the same area.

He also provides information about ME and training sessions for schools, and liaises with families, and he believes understanding of the disease is improving slowly. Examination boards are willing now to accommodate ME sufferers, allowing for supervised rest periods during the exam, or for the exam to be taken at home.

"The right time for children to go back to school, or college, is when they feel they can do it, when they feel more in control of their own body - which is why many begin to improve as they get older. Parents tend to get anxious about exams - but our advice to them is that if children can't take all their GCSEs at 16, it's not the end of the world, they can do them later"n

More information about ME from: Action for ME, tel 01749 677551

My younger brothers tell me, 'You'll get better, Kate'

Kate Gifford, 16, has been confined to her bed and her wheelchair for more than three years. "I have a headache all the time. I find it hard to concentrate, and my muscles do not work very well. I feel fluey and tired, and the pain is always there in my muscles, my head and my back."

Kate had made a good start at her secondary school when she became ill at 12, with suspected glandular fever. "She didn't get over that at all well," says her mother, Ann Gifford. "She was vomiting, and she couldn't walk without collapsing on the floor in tears. She just sat down in the wheelchair, curled up in pain, and didn't get up again. The girl she had been - who loved disco-dancing, swimming and horse-riding - had gone."

The consultant at the local hospital took the line that Kate must be either anorexic or school-phobic. Only the extreme decline in her physical health - at 13 she weighed 41/2 stone - prevented her from being despatched to a psychiatric unit for disturbed children.

Ann Gifford then fought hard for a second opinion. Through a physiotherapist, she was put in touch with the ME Association and with Dr Alan Franklin, an independent consultant in Chelmsford, Essex. Kate was transferred to Chelmsford Hospital, under Dr Franklin, where in time her condition stabilised.

Still very weak, and unable to hold a book for long, Kate now has one hour's home tuition a week, which is all she can cope with. Last summer, and a year early, she took GCSE English, sitting the exam in bed with long rest periods, and achieved an A grade. She is now taking art, and hopes to do more - if her mother succeeds in her fight to get the home tuition continued post-16.

"I'm quite pleased I've got my education, and doing well in English has made me want to get on," says Kate.

"The most difficult thing about having ME has been the attitude of my peer group. When I go out in my wheelchair, people I used to be friends with look at me as if I had two heads - they whisper and point.

"But my younger brothers cheer me up. They tell me, 'you'll get better, Kate'. And if I say I can't do something because my headache is bad, they don't make me"