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"Doctors, school, friends thought I was faking CFS"

Thursday 28 January 2010

Nicola WarnerThe UK's Times Online has an article about Nicola Warner (pictured) and the current state of ME/CFS in the UK:

‘Doctors, school, friends thought I was faking chronic fatigue syndrome’

As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers

Penny Wark

It says a lot about the public perception of myalgic encephalomyelitis (ME) that it is a surprise to find that Nicola Warner is lively, positive and talks a lot. That’s the initial impression anyway. It’s only when you spend a little time in her company that you notice a certain stillness or perhaps sadness in her face and it becomes obvious that she is not entirely well.

Nicola, now 27, was 12 when she became ill with glandular fever. A year later, having been bedridden for eight months, she was told by a paediatrician that she had ME. He gave her a factsheet that terrified her, she says. “It described my symptoms, the pain in my joints and my muscles, the overwhelming fatigue, dizzy spells, nausea, migraines, memory loss . . . I wanted to go back to school to be with my friends.”

On her first day back Nicola collapsed and had to be carried out of the lesson. That was her last day at school. The GP told her parents that if she didn’t get out of bed she would become paralysed. Every morning her mum helped her to walk the few steps from her bed to the bathroom in the family’s home in Theydon Bois, Essex. The first time, she took three hours.

“I couldn’t concentrate, couldn’t read or watch television, couldn’t have a conversation. So I couldn’t see my friends,” Nicola says. “It was incredibly lonely. Some people thought I was faking it — neighbours, friends, school, doctors. I wasn’t making it up, I wasn’t being lazy though I was isolated and depressed. It wasn’t a mental thing but because I wasn’t leading a normal life there were mental issues surrounding it.”

In recent days the trial of Kay Gilderdale, who has admitted assisting the suicide of her daughter, Lynn, an ME sufferer, but denies attempted murder, has raised the profile of the condition that has no known cause, no diagnostic test, no cure and few treatments. It is estimated that 250,000 people suffer from it in the UK, almost three times the number who have multiple sclerosis.

The full article can be found here.



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