Canberra's long COVID sufferers want more funding for University of Canberra Hospital clinic

The long COVID sufferer does not even have the strength to play the flute anymore.

"My own very existence has been undermined by long COVID," she said.

"Who am I when I could no longer participate in the things I enjoy?

"Who am I after my brain function has been impaired?"

After enduring lockdowns, home learning, business breakdowns and saturated media coverage, most Canberrans have tried to leave COVID behind.

But as the rest of us unmasked, some people couldn't get over the virus.

Long COVID is a post-viral illness defined as having symptoms three months or more after infection.

This can include fatigue, shortness of breath and "brain frog". It is diagnosed by eliminating other possible causes, and must cause significant disability.

Limited data estimates between 5 to 10 per cent of COVID cases developed into long COVID, but the Australian Institute of Health and Welfare said this was likely an overestimation

Risk factors for long COVID include being unvaccinated, experiencing severe illness while infected, or having underlying illness like high blood pressure, diabetes or obesity.

Dr Su Mon Kyaw-Myint did everything right.

The policy analyst barely left the house, had four vaccine shots and took an antiviral on her first day of COVID symptoms. But they still never went away.

"My quality of life is really, really, really low, and it just feels like I may never get better," she said.

"It may be the end of my career in some way [because] with long COVID, full-time is not possible and I still have a lot of cognitive issues."

There is little research and even fewer services available for people with long COVID.

One of these rare facilities is a clinic at the University of Canberra Hospital, which opened in April 2022.

Former patients like Ms Zhang and Dr Kyaw-Myint are calling for the ACT long COVID clinic to receive more financial support in the upcoming 2023-23 budget.

Ms Zhang said the clinic was "under-resourced and underfunded".

"They showed us a sense of validation of our conditions, and there's a great empathy. And they also give us a sense of hope, which I think is what kept me going," Ms Zhang said.

"But at the end of the three-month program, I couldn't even get an appointment."

The clinic did not eliminate Ms Zhang's symptoms. It does not promise to, as there is no cure for long COVID. It is a rehabilitation centre.

Patients who spoke to The Canberra Times said they had one initial appointment with University of Canberra medical rehab specialist Dr Philip Gaughwin.

After tests were taken, they were able to book appointments with allied health professionals like occupational therapists, dietitians and physiotherapists.

In recent months, the clinic has faced more demand after a surge of COVID last winter, and cases were becoming more complex and severe, a Canberra Health Services spokesperson said.

Less severe cases wait 12 months or more to be enlisted, but the most urgent cases can be admitted within three weeks.

There were 215 people on the waitlist, Canberra Health Services said.

They said 117 patients had finished treatment and there were 57 people attending the clinic at the end of March.

Graduates said while some had benefited from the program, it did not provide the medical or pharmacological support they expected.

Jack Flynn started the program in October last year.

"I think the expectation of what everyone assumes the long COVID clinic is and what it actually does [are] two vastly different things," he said

"A lot of us sort of assume we're going to go there and maybe have an experience and have an experienced medical team [but] the emphasis is more on living with the condition."

Chronic fatigue is not the same as long COVID but there is crossover in symptoms. Both develop after a virus, and the recommendations for managing long COVID come from chronic fatigue, also known as myalgic encephalomyelitis (ME/CFS).

University of NSW infectious diseases physician Professor Andrew Lloyd said the three treatments for ME/CFS were cognitive behavioural therapy, graded exercise and symptom control.

Cognitive behavioural therapy is a controversial treatment as it is psychological, but Dr Lloyd said it did not mean ME/CFS was a psychosomatic condition.

There are no medical treatments for chronic fatigue.

"We don't understand the biological basis of this disorder," Dr Lloyd said.

Graded exercise therapy and gradually increasing physical activity has been shown to improve the lives of chronic fatigue patients, the Royal Australian College of General Practitioners said.

"[It] has been shown to reduce fatigue, prevent physical deconditioning and improve physical functioning, as well as improve sleep, cognition and mood," the institute said.

The controversy around graded exercise is because patients had been overexerted in previous trials and treatments, University of Canberra Associate Professor in physiotherapy Dr Bernie Bissett said.

She is trying to help long COVID clinic patients with a "world-leading" treatment initially applied to Canberra ICU patients.

"We are using world-leading research first conducted in the ACT in the long COVID clinic," Dr Bissett said.

Similar to other physiotherapy exercises, patients increase strength through resistance. They breathe into a device called an inspiratory muscle trainer.

The research into the efficacy of the treatment on long COVID patients has not been published yet.

Ms Zhang said she found the occupational therapy sessions particularly helpful.

"The occupational therapist was extremely helpful in helping me. She had a full system of helping my brain to train short term and long-term memory, and she also provided a lot of good advice on how I could manage my everyday life," she said.

"[But] at the time, she was already pretty overwhelmed, and at the end of the program, I could barely book an appointment with her."

However, most long COVID and chronic fatigue patients still seek out pharmacological and alternative treatments, giving each other advice over social media and on forums.

Because these are not approved for treatment, they are not subsidised through the Pharmaceutical Benefits Scheme.

Mr Flynn and Dr Kyaw-Myint take low doses of naltrexone, a drug undergoing several trials in treating long COVID nationwide, including at Griffith University in Queensland.

Dr Lloyd said it was not surprising sufferers sought out their own solutions.

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"The truth is we don't actually have great treatments, especially our curative ones, and so it's understandable that patients would seek out other options, including from the alternative medical realm," he said.

"My own approach is to be pretty tolerant of that, provided whatever [the treatment] is, is not a complete waste of money and harmful."

Patients told The Canberra Times the professionals within the COVID clinic did not communicate with one another about patients. They wanted a singular point of contact to coordinate their care.

This was the case across clinics nationwide, physician and long COVID sufferer Associate Professor Nada Hamad told the inquiry.

"The model of care in a long COVID clinic does not work. It includes a combination of clinicians who don't talk to each other," she said.

Dr Kyaw-Myint told a federal government inquiry care was "siloed" and she didn't believe GPs should coordinate care.

"I don't feel like GPs are the answer. We need multidisciplinary centres of excellence for long COVID," she said.

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