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ME/CFS AUSTRALIA (SA) INC

Registered Charity 3104

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sacfs@sacfs.asn.au

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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.

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Brave teen who lost teenage years to ME

Tuesday 6 September 2011

From the UK's Basingstoke Gazette:

 

Daisy Hill
Daisy Hill

Brave teen who lost teenage years to ME

By Helen Morton
9:00am Thursday 1st September 2011

A BASINGSTOKE teenager, who suffers from a debilitating condition that has left her practically bed-ridden, has spoken out to raise awareness of ME.

Daisy Hill was a bright and active child. Academically outstanding, she pushed herself to achieve top grades at school, despite often being overcome with tiredness.

But in November 2006, aged 12, after two bouts of flu, she left Costello Technology College one day feeling ill, and never went back.

Within months she had been diagnosed with Myalgic Encephalopathy, also known as Chronic Fatigue Syndrome.

A daily cocktail of 11 pills helps the 17-year-old control her symptoms of nerve spasms, muscle-clenching and pain, but even with hours of sleep she is still mentally and physically exhausted and unable to carry out the simplest of tasks.

Since her diagnosis she has not been on holiday, cooked a meal or done many of the things that a normal teenager would take for granted. Even reading or watching television can leave her exhausted.

But, as an outwardly healthy girl, she faces prejudice from people who simply do not believe that she is ‘properly’ ill.

Daisy, who has been raising awareness online about ME, said: “People always look for signs that I am ill. When they see me in a wheelchair they assume I’m paralysed and are often confused when they see I can move my legs.

“There is a lot of ignorance out there about ME and there have been a lot of reports in the media – reports that are misleading and seem to trivialise the condition.

“People do seem to doubt if you are actually ill, but if I had been acting this for the last five years then I think I would deserve an Oscar. We’re a voiceless community because we’re confined to our rooms and sometimes literally voiceless – some ME sufferers have been known to lose their sight and ability to talk.”

Her mum, Liz Hill, 48, gave up her job in a doctor’s surgery to care for Daisy and she and her husband Andrew, 49, a procurement manager, and their two sons Steve, 22 and Tim, 21 give Daisy round-the-clock support.

ME has been the subject of fierce scientific and medical debate over the last few decades with no answers about the cause or the cure, but Daisy, along with 250,000 UK sufferers, is determined to be heard.

 

The above, with comments, originally appeared here.

 


 

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