Open Eye: Talking to ME sufferers

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A team from the Open University has joined forces with a national charity to conduct a unique study of young people with myalgic encephalomyelitis (ME).

This is a potentially devastating but little-understood condition which affects an estimated 25,000 people under 25.

Symptoms of ME, which is also known as Post Viral Fatigue Syndrome, include muscle pain, extreme fatigue, stomach and digestive disorders and forgetfulness, and in severe cases sufferers may be bedridden and unable to walk. Children as young as five are affected.

The research will be led by Dr Stan Tucker, Lecturer in Children and Young People in the School of Health and Social Welfare.

"We will go out and talk to ME sufferers and their families in their own homes, and try to build up a picture of their lives and their perspectives," he said. "We hope to identify some of the issues and the problems and themes which matter to ME sufferers."

The research is being funded through a pounds 28,000 National Lottery grant to AYME - the Association of Youth With ME - which is collaborating with the OU research team.

AYME's Rachel Lynds, 20, who was diagnosed as an ME sufferer at 14, said many people today still do not know what the condition entails.

"Young people's education often has to stop because school or college will not work around their illness. They lack self-esteem because of how ill they feel and the lack of support."

The results of the OU study will be fed through to the Chief Medical Officers' Working Party on ME in Children, which is drawing up guidelines on treatment for the NHS.