Helen goes to air on her invisible illness

Young Melrose Park resident Helen James last week ventured onto ABC’s national television program JTV in an attempt to raise awareness of the disease she suffers from myalgic encephalopathy/chronic fatigue syndrome (ME/CFS).

Ms James, 22, was interviewed by radio and television journalist Steve Cannane for the segment.

In his introduction, Mr Cannane labelled the illness as “misunderstood and misdiagnosed”.

Ms James said: “I often find myself lecturing strangers about the difficulties of living with an invisible illness. It was fantastic to be able to do this on a broader scale.

“Many young people find it difficult to get help when they develop symptoms of ME/CFS.”

As a seven-year sufferer of the illness, she has become an active member of the Sydney ME/CFS Society management committee.

“I want people to know that ME/CFS is real and serious.

“It is not just being tired. It affects every part of your body. I get sore muscles and joints all the time, and I have trouble concentrating.

“To have something that people don’t even believe in, is very hard and very frustrating.”

It is estimated that 140,000 Australians have CFS. There is no cure and the prognosis varies from case to case.

People with ME/CFS experience a level of disability equal to that of people with multiple sclerosis, advanced HIV disease, or those undergoing chemotherapy.

“I have to think about everything I do. Because my body reacts differently to exercise and stress I have to plan carefully so I don’t overdo it,” Ms James said.

Like many other people with ME/CFS, she has had periods of near normal health, but is still susceptible to major relapses.

“We need more research into the cause of ME/CFS, and better understanding by doctors and other health professionals.”

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