Fatigued, frequently ill and experiencing ever-changing symptoms, Sue Curry has spent years living with a debilitating illness.

"It's like having the flu, a concussion, multiple sclerosis," she said.

Her illness, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (ME), is poorly understood and has no certain pharmacological treatment.

"When we are hit severe, you don't see us anymore," Ms Curry said.

Over decades, her symptoms worsened, leaving her bedbound.

But her condition improved dramatically when she discovered an unlikely treatment - cannabis.

Ms Curry is one of an increasing number of patients speaking out about their use of the drug, as state and federal governments move to allow its use in some cases.

Ms Curry said the drug had made an enormous difference to her quality of life.

"I have been to the place where this is not worth living, I'm quite happy to end this," she said.

"I'm not there now, with this drug ... I am able to sit here and speak with you ... life is worth living."

Following a decision by the Therapeutic Goods Administration to reschedule cannabis from a prohibited substance to a controlled drug, the ACT Government announced a new medicinal cannabis scheme last week.

It will determine guidelines for the prescription, distribution and use of the drug.

The move follows action by the Commonwealth on a cultivation scheme earlier this year, and a new compassionate access scheme in New South Wales for child epilepsy patients.

"There comes a time, after all the inquiries and investigations are done ... when a decision must be made," ACT Assistant Health Minister Meegan Fitzharris said.

"This framework gives the ACT an opportunity to implement a scheme with clear, regulatory oversight that protects both patients and public health."

Medical experts urge caution in Government acceptance

Despite the strong endorsement from patients and politicians, the Australian Medical Association's ACT President, Steve Robson, said the issue must be approached carefully.

"It's definitely a sexy issue for a Government to engage in, [but] we're very interested in making sure [it's] conducted in a way that's appropriate," he said.

Professor Robson said while there was some evidence medicinal cannabis could be helpful, there were still many unknowns.

"There's really a need to get a lot more robust evidence to help guide us," he said.

"We all want to help patients, we all want to help people get better, but we're not really sure what we're doing at the moment."