From the Scottish Daily Record, 28 October 2010 (story by Jolene Cargill)
TEENAGER Eilidh Berwick faces a gruelling battle to cope with everyday tasks. The housebound 15-year-old is totally dependent on her parents to feed, dress and wash her. But despite a diagnosis of ME – or chronic fatigue syndrome – the teenager found many doctors dismissed her crippling symptoms as being all in her head.
At one point, a specialist even suggested Eilidh be referred to a psychiatric unit.
Her mum Carol, 46, said: “When they talked about her going into hospital we thought they meant a specialist ME ward but it was a psychiatric ward. I had to go and cry after I got the phone call.”
Just getting a diagnosis of ME, otherwise known as myalgic encephalomyelitis, was a battle for the family. When it finally came in October 2005, Carol said she was shocked by their GP’s reaction.
“Eilidh was being treated for asthma but I knew something wasn’t right and her teachers agreed.
“When I took her to the GP he said, ‘Right, that’s enough of all this’ and told Eilidh to go and run round the building three times.”
Minutes later dad Blyth, also 46, found Eilidh outside in a distressed state but the GP wouldn’t accept that she couldn’t carry on.
Carol said: “He told her to run through the waiting room. After that, they said she had chronic fatigue syndrome and would recover in six months.”
Four years on, her parents had to fight to stop Eilidh being treated as a psychiatric patient. Now the family, from Glenrothes, Fife, complain doctors seem to have washed their hands of them.
Carol said: “The paediatrician told us the ME has been dealt with and it’s all down to anxiety. They always fudge over the physical illness.”
But, for Eilidh, the daily struggle with her condition is far from behind her. She has to be bathed in a chair because she gets so dizzy she cannot support herself.
Carol said: “Her dad and I have to hold her up, so she wears a bikini for privacy and we strap her in so she can sit on the toilet. She has no dignity.”
The year after Eilidh was diagnosed, a consultant prescribed physiotherapy for her. But, soon after the first course, her health collapsed.
Carol said: “We couldn’t see how this would help but we felt we had to go along with it.
“Eventually, her coordination was so bad she couldn’t find the water under the tap. It was like she had gone back to being a toddler.”
Eilidh said she knew when she was sent to a ward with cardiac patients to exercise on a treadmill that she would struggle but she pushed herself that week she fell and could not walk.
Carol said they took her to hospital where a consultant advised them to see a psychiatrist.
However, she protested and the consultant finally agreed to giving Eilidh intensive physiotherapy and psychological support.
Carol said: “They walked her on a leash strapped through a belt on her back and moved her legs like a puppet. Then they discharged her, saying she was able to walk.”
Eilidh said: “They kept giving me a row when I dipped and couldn’t stay up. But it was really sore. I had weakness and pains in my legs.”
Her parents said Eilidh’s health then seriously deteriorated. She made it to one class at school that week and has missed every year of secondary school since. She was barely able to walk but was so desperate to attend her first day of high school, Carol took her in a wheelchair.
Carol added: “Then they said she should walk in and the next day she struggled to lift the spoon at breakfast.
“We have been told she is spoiled, has a fear of movement, school phobia and even a fear of getting better. All that has dogged her ever since.”
Eilidh was sent to physiotherapy again in March this year but, by summer, she was barely able to get around the house.
The only support she gets now is from a psychiatrist who says her symptoms are caused by negative thoughts.
Eilidh said: “I just go along with the psychiatry. I had assertiveness training and it probably helped my confidence. But I know it doesn’t help the ME.”
Carol has given up her job as a primary teacher to care for Eilidh and had bereavement counselling.
“It’s like bereavement.
“You go through a grieving process. We haven’t lost Eilidh but that’s how it feels, in a way.
“But considering what she goes through she is so well-balanced and keeps her sense of humour.
“She desperately wants to get better and live the normal life of a teenager.
“At times, we wonder if we would have been better o if they had just left us alone and done nothing.”
Since her mum took her to a medical herbalist for help with chronic pain and poor circulation, Eilidh has started to feel better and manages an hour of home tuition every week.
Despite everything she refuses to give up her dream of being a fashion designer.
Eilidh said: “I love it when I am well enough to go to the shops and I keep up with all the fashion magazines.”
Last night, an NHS Fife spokeswoman said they did not comment on individual cases.
She added: “If a patient has concerns they can go to patient relations at Victoria Hospital, Kirkcaldy, and make an official complaint.”
Carol has set up a support group in Glenrothes. She can be contacted at email@example.com
Search for cure
ME (myalgic encephalomyelitis), or chronic fatigue syndrome, affects 150,000 people in Britain
Although more common in those in their early 20s and mid 40s, it affects young people too. About 15,000 UK kids have ME.
In 2004, a UK-wide study found that inactive children are more at risk of developing the condition.
Symptoms are similar to a really bad hangover, with extreme weakness, muscle pain, inability to think straight, disrupted sleep and headaches. It often leaves victims unable to get out of bed.
Scientists have long been trying to discover a cure. In 2005, researchers found differences in white blood cells of people with the condition.
Fish oil supplements and fatty acids are thought to help alleviate symptoms because they help to break down fats essential in cell membranes.