By Jane Colby, Executive Director,
Tymes Trust, November 2002

‘We are delighted to be working with raisingkids.co.uk to make the Tymes Trust Forum available to parents whose children have ME so that they are less isolated and may share valuable experience.’
Jane Colby, Executive Director, Tymes Trust

Have you got a child with ME in the family?

If so, you’ll already know how devastating its effects can be on a young life.

Illness is always upsetting and never easy to deal with. But how much worse when people don’t believe you? This is, unfortunately, the experience of all too many parents whose children have ME. There can be few families who haven’t faced scepticism from someone, perhaps a doctor, teacher, neighbour, friend or even a favourite aunt or grandparent.

ME is known to be linked with viral infection. In 1985 a polio-related virus laid me low and I soon discovered how disabling ME can be. A headteacher at the time, I left my profession to rebuild my health; I am now Executive Director at Tymes Trust, a national charity that supports children with ME and their families.

For 3 years we worked closely with the Department of Health on the children’s chapter of a report on ME (January 2002) and are delighted to be working with raisingkids.co.uk to make the Tymes Trust Forum available so that parents may share valuable experience with one another.

There are other names for ME, such as Post Viral Fatigue Syndrome (PVFS) and Chronic Fatigue Syndrome (CFS) which is the one used by most health professionals at the moment.

That name is not generally liked as it sounds as if the person is just tired. It also risks pulling in people who don't have the tightly defined illness called ME (short for Myalgic Encephalomyelitis). People with true ME may be made worse rather than better by psychologically based treatments such as Cognitive Behaviour Therapy and Graded Exercise Therapy.

If someone doubts you, facts can help. ME, defined by the World Health Organisation as a neurological illness, is by far the biggest cause of long-term sickness absence in schools.

The Dowsett/Colby study of 333,000 pupil records in UK schools (Journal of Chronic Fatigue Syndrome 1997) showed that 51% of all long-term sickness absence is caused by ME.

Children with ME are easily made worse again and usually need home tuition and/or distance learning, sometimes for years, to protect their health and help them achieve academically despite their illness.

Since ME is centred in the brain and central nervous system it causes symptoms throughout the body. For more information, please go to www.youngactiononline.com the partner website for Tymes Trust.

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• Discussion: Parents Of Children With ME