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Call goes out for research on ME

Thursday 17 May 2012


From New Zealand's Auckland Now Eastern Courier:


Nikita Watson
Nikita Watson

Call goes out for research on ME

Simon Smith
Last updated 05:00 25/04/2012

Nikita Watson had just turned three when she stopped being active and was tired and plagued with body pains.

Her mother Amber says it was a dramatic personality change that has lasted the past year and a half.

"She was my very, very active one – a lot of personality and a lot of a spunk.

"I used to feel like last year we'd lost her. We had lost the things that made her her."

Doctors have run extensive tests but are unable to conclusively say what is wrong.

Mrs Watson suspects her daughter has chronic fatigue syndrome – Nikita's uncle had the illness and it is known to run in families.

She says children sometimes grow out of the syndrome which is also called myalgic encephalopathy or ME.

"Right now she's having a good patch that's been going about six weeks.

"But the thing about chronic fatigue is that there are relapses, so I hold hope that this is it going up."

Dr Ros Vallings of Howick Health and Medical Centre says Nikita shows some signs of the syndrome and may end up with that diagnosis.

But the problem is there is no test – patients get the diagnosis by ruling out other causes, she says. That process takes time and is more difficult with children.

Mrs Watson says this is why she was among nearly 6000 people who signed a petition presented to Parliament last month.

"I think the really hard thing that used to keep me awake at night was just not knowing – just not knowing what was actually wrong with her. There needs to be more research and understanding about it because it's just so hard to get diagnosed."

East Auckland ME Support Group convener Wendy Matthews initiated the petition to draw attention to the difficulty faced by those with the illness.

It asks the Government to do more for patients and families by supporting research, better assessment, treatment and care. It also asks for better education for health professionals and the public, and to rectify a misconception that ME is psychological.

Mrs Matthews has suffered from ME for nearly two decades and says people with the illness are often misunderstood.

"Not only do they have a very nasty illness which actually has robbed them of so much of their life, but then they have also to deal with people's scepticism – and that is a real cruncher."

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The above originally appeared here.


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