Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis, is a syndrome that causes persistent fatigue that does not go away with sleep or rest. It affects around 250,00 Australians, from Bondi Junction to Perth, with one in four having to rely on home care services as a result of their persistent exhaustion.
But for those Australians requiring home care services, many are struggling to receive the financial support they need from government funded schemes.
Kristel Wood, who suffers from Chronic Fatigue Syndrome, explains that she has tried to receive support from the National Disability Insurance Scheme (NDIS) three times now, but each time she has been rejected.
When asked how the support could benefit her, she said, “I could focus more on work… I could get regular specialist home visits from a physio. I wouldn’t have the constant stress of playing catch-up with basic medical expenses. I’d be able to try treatment options that are currently inaccessible to me. Right now I’m barely coping.”
Mrs Wood explained the reason she was denied support was that her condition was not a “permanent illness”, and that “exercise and cognitive behavioural therapy are effective treatments”.
President of Chronic Fatigue Syndrome Australia, Penelope McMillan, described the situation as “heartbreaking.”
“We have members who are bed-bound and they can’t access the NDIS,” she said.
“We have people in distressing circumstances and there’s just no help. The legislation was quite clear that the NDIS should be based on need, but the National Disability Insurance Agency has created a procedure that discriminates.”
The Pace trial
While exercise and cognitive behavioural therapy are the typically prescribed treatments for those with Chronic Fatigue Syndrome, recent studies have revealed that these may not, in fact, be the best course of action.
A trial known as the Pace trial was conducted in the UK over five years and published back in February 2011. The trial initially claimed that 22% of participants recovered from Chronic Fatigue Syndrome as a result of exercise and cognitive behavioural therapy.
However, through the use of freedom of information requests, patient groups discovered that the term “recovered” could be seen as misleading as a result of the definition being altered during the trial to also encompass those who were still relatively ill.
Furthermore, when patients of the study were surveyed, 74% of people with Chronic Fatigue Syndrome who participated in the exercise program reported that their condition had in fact worsened.
A psychological or biological condition?
The study has further fuelled the continued debate or whether or not Chronic Fatigue Syndrome is a psychological condition or a biological one.
A study by Queensland’s Griffith University released a study suggesting that those with Chronic Fatigue Syndrome suffer from it as a result of non-functioning calcium receptors in their immune cells.
“The research team, led by Professor Sonya Marshall-Gradisnik and Professor Don Staines, have identified a dysfunctional cell receptor in the immune system which seems to be at the core of the problem,” Science Minister Leanne Enouch said.
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