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I've been confined to my room for 14 years, says ME sufferer Amy

Tuesday 21 September 2010

Amy Bakewell
Amy Bakewell

From the Leicester Mercury:

I've been confined to my room for 14 years, says ME sufferer Amy

Amy Bakewell is one of 1,000 people in the UK too ill to leave their beds or home because of the condition ME. She told Tim Healy how it has taken over her life

For 14 years Amy Bakewell has been confined to a bed in a darkened room. She was once a fun-loving teenager studying for her GCSEs, but ME (myalgic encephalomyelitis) ended all that.

At its worst the condition left her unable to move, speak, read or bear listening to anyone.

Now, at 32, daylight still causes her violent pain and she can only cope with sitting outside in the garden of her parent's village shop, in Thornton, near Markfield, for five minutes in the evening once a fortnight.

Amy believes a mild concussion when she fell while hiking in the Lake District as a teenager, triggered the downhill spiral into darkness and pain.

She said: "I suffered mild concussion and whiplash in my neck when I fell on some stones. I thought it would get better, but it got steadily worse so that I could not go to school and sit my GCSEs a couple of months afterwards.

"I was looking forward to my exams as I was a swot. I tried to do A-levels but I rapidly deteriorated."

ME affects people of all ages and can cause severe debilitating fatigue, painful muscles and joints, and sleep, memory and concentration problems.

Amy has been restricted to bed since 1996.

She said: "I do not feel fatigued or tired. I feel like I'm being physically crushed. I also feel spaced out."

Amy has now recovered enough to read books by torch light, listen to audio books, talk to friends on the phone and swap texts with fellow victims.

These big steps, coupled with the dedicated love of her parents, Sue and Lloyd, are now producing shoots of hope.

She is determined to strive for an improvement in how doctors treat patients with ME.

There is still no known cure for the condition.

She said: "I am angry. I am angry that the medical profession does not know how to treat me.

"I was angry they thought it was neurosis and recommended psychiatric therapy. I tried those therapies but they did no good as there is a medical cause for my condition."

Amy added: "Although my pain levels remain inexorably faithful, I'll never stop striving for improvement."

She and her mum have tried countless herbal and other medical treatments.

But after consulting with ME specialists Dr Andrew Wright, based in Bolton, they started seeing some improvement.

Sue said: "We sent off blood samples to him and he prescribed various medicines."

Amy has been taking monthly doses of the anti-parasitic drug Ivermectin.

Sue said: "The drug appears to be having an impact. But things go very slowly.

"I am very thankful to Dr Wright, but we have had to go private as there is very little treatment on the NHS relevant to Amy's condition. "We do have a sympathetic GP now.

"I am also very grateful to the ME support groups including the 25% ME Group."

They both continue to hope that Amy's health will improve.

Sue said: "I am ever hopeful Amy will regain quality of life again. But I would like to see a proper medical screening for ME on the NHS."

Amy added: "Perhaps next year, if things continue to get better, I will be able to sit on the side of the Thornton reservoir in a wheelchair for just five minutes. But that may not happen."

The article originally appeared here.



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