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The look: Feeling the strain

Friday 24 September 2010

WomanFrom The City Weekly:

The look: Feeling the strain

23 Sep, 2010 12:18 PM

For most people, Monday morning involves an early wake-up, a groggy shower and hurried breakfast; but for people with chronic fatigue syndrome, this is often an aspiration rather than a reality. CFS can be a severe and disabling illness that affects about 38,000 Victorians and more than 180,000 Australians. It can render many people bedridden and at this stage there is no cure.

CFS can affect anyone and is often accompanied by myalgic encephalomyelitis, which causes pain in the muscles and inflammation in the brain and spinal cord.

But for years CFS has been surrounded by controversy, with its existence an ongoing debate. ME/CFS Australia chief executive Penny Abrahams says the World Health Organisation and the Royal Australasian College of Surgeons have recognised CFS as an illness since the 1960s.

“If sceptics want to debate the issue I’d say to them ‘perhaps you know more than these experts, but I doubt it’,” she says.

One person who knows about sceptics is Ricky Buchanan. At 19 years old, Buchanan fell ill with glandular fever and never properly recovered. “I eventually became housebound and had to spend most and then all of my day in bed,” she says.

“At the worst point I couldn’t even have held a conversation. I had a catheter because I wasn’t able to go to the bathroom on my own. It was, really, really awful.”

Now 35, Buchanan requires intensive help with the day-to-day things most of us take for granted. She hasn’t been able to achieve many of the things she had planned for herself, including finishing university. “My life is 100 per cent different from what it would have been if I hadn’t gotten sick,” she says.

Buchanan also says the worst part is the stigma that CFS sufferers are merely “lazy malingerers”.

“It’s probably just as hard to deal with a lack of awareness as it is to deal with the physical symptoms,” Buchanan says. “I’ve had friends with CFS who have died and people saying to me ‘I didn’t know it could get that bad’.”

Melbourne GP Don Lewis specialised in treating CFS after his wife became ill with the condition in 1985. Since then he has opened a clinic devoted entirely to diagnosis and treatment of the condition and says CFS is a “completely genuine” illness. “I think it’s outrageous to say sufferers are self-imposing their limitation,” Lewis says. “These people are just so keen to get back to the life they had that they would do anything for that.”

Lewis says early intervention is vital to treating the illness, adding that medical professionals need to get better at treating people before they become so sick they can’t get out of bed. At this stage, no one has been able to identify what causes the illness. Current theories involve toxic chemicals, immune deficiency and new evidence suggests a retrovirus that works similarly to the HIV virus.

But Lewis says common factors in CFS can be fructose malabsorbtion and lactose and gluten intolerance. This is just part of his research and he says success in treating the condition by diagnosing and treating these food intolerances.

He agrees it’s still long road ahead: “We need to understand far more about this illness in order to treat it.”

For more information, call ME/CFS Australia on 9793 4500 or visit

The article originally appeared here.



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