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ME/CFS AUSTRALIA (SA) INC

Registered Charity 698

Email:
sacfs@sacfs.asn.au

Mailing address:
PO Box 28,
Hindmarsh,
South Australia 5007

Office:
Closed while relocating

Phone:
1300 128 339

Office Hours:
Wednesdays, 10am-3pm

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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ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.

Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.

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Herald Sun article

Saturday 15 August 2009

Alex Wilson-GlabThe Herald Sun has a profile of Alex Wilson-Glab (pictured), a teenager with ME/CFS. The article was reprinted on News.com.au:

I'd rather have cancer, says Alex Wilson-Glab

TEENAGER Alex Wilson-Glab has barely been out of bed in 10 years and dreams of a good night's sleep.

She is so chronically tired some days she can't sit up, can't eat or leave the house and lives nearly every day in her single bed in her small bedroom in Brunswick, Melbourne.

"I stay in bed. I can't study any more and I can't even celebrate my birthday any more," said Alex, 18.

"I haven't had a birthday since I was 13. After a shower I need to lie down for 45 minutes and for things like brushing my hair and doing my teeth I need to lie down again for 20 minutes."

Alex contracted glandular fever in grade 3 and has suffered the affects of chronic fatigue syndrome since.

"I really wish I had cancer because then they could give me some form of prognosis," she said.

"People would sympathise, people would care and people wouldn't tell you to shut up because they don't care about your disability.'

Alex has muscle pain, fevers, chills, nausea, severe fatigue and can barely walk from bed to the bathroom.

Alex wants to raise awareness about CFS, which was once known as the "yuppie flu", saying it is a recognised medical condition and not a psychological disorder.

Alex, who sometimes needs a wheelchair, said one person had died from CFS in Australia and she fears she will be next. "I don't think I will ever recover completely. It would be better to die because people would listen," she said.

Aspiring lawyer Alex is doing one VCE subject at Lowther Hall but is so sick she can't attend school.

She will be admitted to the Royal Children's Hospital on Monday for monitoring.

Her mother Jeannie, 56, said the VCAA was refusing to give Alex extra time for her VCE exams. She was furious the medical world didn't recognise the severity of CFS.

"All the goals she has had all her life have been taken away from her," Mrs Wilson-Glab said. "Her teenage years have been taken away from her."

She said they remained positive and the family encouraged Alex to achieve everything she wanted in life.

RCH pediatrician Dr Kathy Rowe said CFS was common among adolescents.

"These kids do need support and it is not all in the mind," Dr Rowe said.

The disease had been gaining more recognition in the past 20 years.

"We don't know exactly what it is but symptoms are similar to an acute case of flu where sleep is unrefreshing," she said.

Dr Rowe said she sees 70 new cases of CFS a year with each patient suffering on average between four and five years before they recover.

The article originally appeared here.

 


 

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