Treatment recommended to Chronic Fatigue Syndrome (CFS) patients can be potentially harmful and is old-fashioned, according to a patient group who are asking a new government advisory committee to research potential cures, not counselling or exercise relief.

The predominant treatment for many of Australia's 200,000 sufferers of CFS — now called ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) — has been a combination of graded exercise therapy (GET) and psychotherapy (CBT).

Professor Andrew Lloyd from UNSW's Fatigue Clinic is a physician who recommends this treatment and he maintains it is "somewhat helpful" but concedes the treatment "doesn't help everybody".

Dr Andrew Lloyd recommends a combination of GET and CBT to treat chronic fatigue. ( ABC News )

"In general it helps most. In my experience it's very rarely harmful, if it's sensibly applied," Professor Lloyd told 7.30.

But medical ethicist Dr Heidi Nicholl, CEO of the Emerge ME/CFS patient group, said the treatment was "potentially harmful and old-fashioned".

She said a risk of harm arises when exertion is recommended to people who have "problems with energy production".

"Once you start looking at ME/CFS as a patho-physiological illness, then things like graded exercise therapy seem like old-fashioned approaches to the condition," Dr Nicholl said.

"We found that 89 per cent of patients felt worse after doing physical activity, so if you feel worse after graded exercise therapy, it's not going to be something that you want to do," she said.

The Government's National Health and Medical Research Council (NHMRC) is currently investigating treatment and research for ME/CFS. It is expected to meet in August and hand down its findings before the end of the year.

More than 'just tired'

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It is estimated about 25 per cent of ME/CFS sufferers are bedbound or housebound, and one in two can experience mental health problems as a result of their fatigue symptoms.

There is a growing awareness of the often invisible and misunderstood condition, helped in part by the Netflix documentary Unrest.

Jamie Drake was diagnosed as a teenager, and despite her 17 years of crippling ME/CFS symptoms, the NDIS rejected her application because her application did not meet the requirements for NDIS support.

"It's not just being tired all the time which is, I think, a pretty common assumption," Ms Drake said.

"It's being bone-weary exhausted, it's being sore, aching all the time, not being able to think very clearly. It's so many other little symptoms like ... forgetting words in the middle of a sentence."

Ms Drake received treatment from Dr Lloyd and has undergone GET and CBT, but said she had seen no long-term improvement.

She relies on full-time support, living in the home of her retirement-age parents David and Sally James.

Jamie Drake lives with her parents as she needs full-time support. ( ABC News )

"I think in many ways she's frozen in time," her mother said.

"When other parents were complaining about their kids staying out clubbing or going out a night, I just wanted to have a kid that could go out and do some clubbing.

"You're constantly grieving for the life that she hasn't had."

Some NDIS assessors are rejecting sufferers on the basis they have not tried GET/CBT, according to Dr Nicholl, a decision she said was based on "flawed" and "controversial" research.

Dr Heidi Nicholl says current treatments for ME/CFS are old-fashioned. ( ABC News )

"We have patients that have absolutely worked with their doctors. There are no effective treatments that can restore ME/CFS patients to health," she said.

"If the NHMRC advisory didn't recommend increasing funding towards the biological basis of this illness, then the danger is Australia gets left behind in the research," she said.

Professor Lloyd is on the NHMRC's advisory committee.

"I'm recommending these treatments, because, despite those concerns, the credible, scientific base around the globe ... are consistently in favour for both CBT and graded exercise," he said.

"Evidence is very rarely black and white. The bulk of the evidence is strongly in favour of what the minority evidence is against."

'There is recovery for anyone who wants to believe in it'

Layne Beachley says her ME/CFS symptoms were able to be managed. ( ABC News: Andy Park )

The unpredictable symptoms of ME/CFS can strike down even the highly active, like seven-time world surfing champion Layne Beachley.

"At first I just thought it was a natural part of being fatigued from being an extreme athlete," she said.

"I didn't seek GP support, I just thought I'd get through it if I rested a little longer and looked after my diet, but that didn't happen.

"Back then I hadn't even won a world title, I'd only just won my first event. But the stigma associated with it in the 90s was, 'Yuppies disease. Just pick yourself up and get on with it, you lazy bugger.'"

She said her symptoms were able to be managed, but wants recognition for those, like Jamie Drake, who aren't so lucky.

"I really feel for these people who are enduring more than two or three years of chronic fatigue because it is a debilitating disease, a real challenge," she said.

"I believe there is hope and there is recovery for anyone who wants to believe in it too."