Monday, October 21, 2013

180,000 Australians with ME/CFS

Kathy Sinnott and her daughter Miriam, age 24.
Source: News Limited.
This article appeared in the Herald Sun (Australia). 

THERE is the physical and mental pain, and it hurts.

There is no research into a cure, and that hurts too.

There are many doctors who don't believe chronic fatigue exists - and that hurts the most.

Sunshine woman Kathy Sinnott and her daughters Alice and Miriam have myalgic encephalomyelitis, commonly known as chronic fatigue syndrome. Alice is housebound, a sharp student reduced to days and days in bed. Miriam can work part time and study part time and rest a lot. Kathy has ups and downs, while looking after herself and her daughters.

They are just three of an estimated 180,000 Australians with chronic fatigue.

The complicated nature of the syndrome means there is no scientific consensus on its causes and the best way to treat it. That means no one is even researching how to fix it.

"There are so many people who are desperate for help. It wrecks so many lives," Miriam said. "It's even worse to know there's no one even trying to find a cure. "We don't even have hope."

Miriam said a lot of doctors did not believe chronic fatigue existed, which came as a blow to people whose lives had been put on hold.

"I had all these hopes and dreams … and they're just brushing aside how much that hurts."

Alice, 28, was too sick to speak or be photographed. At 18 she got into Melbourne University but could not continue with her ­studies as her symptoms hit harder. An attempt at doing a childcare course at TAFE also ended.

Kathy worked as a teacher while raising her children and would go straight to bed when she got home. "It's only since Alice was diagnosed I realised I could tick so many of the same boxes," she said.

Having two daughters with chronic fatigue is not what Kathy wanted for them when she dreamt of their adult lives.

"It's certainly not what I hoped," Kathy said. "I'd love to get Alice to the stage where she can live a normal life, even if its part time work or voluntary work.

Without the hope of a cure, the Sinnott women are doing their best to muddle through. Miriam said she worried about what would happen once her parents got older and needed care themselves.
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