THREE quarters of ME sufferers have lost their jobs because of their illness, costing the nation £6.4 billion a year, according to new research.

About 55,000 people in Britain are so severely affected by myalgic encephalomyelitis, once dismissed by many doctors as psychological, that they are bed-bound or house-bound.

The survey found that, of the 240,000 sufferers in Britain, 77 per cent had lost their jobs as a result of the illness. Published as part of an awareness campaign by Action for ME, it provides the most detailed analysis of the illness ever carried out.

Today The Times publishes a new poem by Frieda Hughes, the daughter of Sylvia Plath and Ted Hughes, about her experience of the condition to mark ME Awareness Week this week. Ms Hughes, a painter, children’s story-writer and poet, suffered ME for more than three years. The poem begins by describing how she first became aware that something was wrong during a long car journey in Australia.

For months afterwards she was confined to lying on a mattress in her studio home in Wooroloo, Australia, sleeping most of the day and night. During her slow recovery she wrote poetry, later shaped into Wooroloo, her first collection.

Other sufferers include Lord Puttnam, Dame Kelly Holmes and Shirley Conran, the author.

Trish Taylor, chair of Action for ME, said: “ME robs people of their ability to work and destroys their close relationships. It leaves many sufferers in wheelchairs and some have to be tube-fed.”

The survey found that more than one third of the public (35 per cent) has never heard of ME, which is also known as Chronic Fatigue Syndrome.

The illness particularly affects the nervous and immune systems. Many sufferers experience pain on a constant basis, and most believe that an infection was the cause.

One sufferer is Ebun Culwin, who has felt unwell since the age of 19 when she developed glandular fever, then pelvic inflammatory disease. She struggled until six years ago when, at the age of 47, she was found to have ME. “I just assumed that it was my fault, that I wasn’t getting enough exercise, fresh air or something,” she said. When she had her two daughters, in her mid 20s, the condition became worse and she blames it for the breakdown in her relationship with her partner. She said: “When my relationship collapsed, I was diagnosed with suspected meningitis, which I believe to have been the effects of ME.

“It has affected my cognitive abilities. I have a low concentration span, muddled thought processes and dyslexia.”

Ms Culwin, who also suffers from asthma and arthritis, has been bed-bound for weeks at a time at her home in London.

She lives on a disability pension from her job as a social worker. The diagnosis of ME was first made by a cranio- sacral therapist and eventually confirmed by her GP.

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