Wednesday, November 18, 1998 Published at 00:59 GMT
ME children need help with education
Some 25,000 British schoolchildren may have ME
Children with myalgic encephalomyelitis (ME) need to be considered as having special educational needs, according to a leading specialist.
Jane Colby, child services development officer for the Action for ME charity, will tell a conference on Wednesday that children with the illness need to be to be treated as having special educational needs at schools so they have a learning programme tailored to their needs.
But she says many could risk reinfection or a relapse if they go back to school too early.
ME charities estimate that around 25,000 schoolchildren in the UK suffer from the condition, which causes acute tiredness and muscle aches and can lead to permanent disability.
Some doctors are sceptical that the condition exists, but the government has now officially recognised it and appointed a working group.
Ms Colby is one of its members. She says many children are ready to learn before they are ready to return to school and need specialised education in the home to keep up with their studies.
"We can see on brain scans that when children with ME make mental or physical effort their blood flow goes down instead of up," she said.
"This means they should not be overloaded with work. They need to learn a little at a time, focusing on a few key subjects."
She suggests distance learning or offering children rest breaks and allowing them to sit exams at home.
She has helped develop a specialised educational package to help children with the condition.
She says too much education too early can harm the child's health.
Children with ME often have trouble concentraiting and remembering things. Many have trouble with particular subjects, such as maths.
But Ms Colby says the most important lesson they have to learn is how to manage their illness so that they ration their energy and do not suffer a relapse.
"It is a question of learning their limits, living within their limits and then they will find that the limits expand," she said.
She has just set up a voluntary network of professionals - called the Young Action Online Open Network - who can offer advice to families dealing with ME.
This includes educational psychologists, doctors, further education college teachers and home tutors.
They have all offered to give advice and support and can be contacted through Action for ME or Jane Colby's Website on www.jafc.demon.co.uk.
Ms Colby says schools often do not know what services are available and many children slip through the net and don't get the advice they need.
She adds that schools often misunderstand the disease because they rarely see the child at their worst.
She hopes the government's working group will help foster a wider understanding of the illness as well as come up with concrete guidelines for offering more support to families and sufferers.