An extra $50 million in government funding has been pledged towards research into long COVID.
Health Minister Mark Butler said the funding would better inform policy decisions and improve health outcomes for patients.
The Department of Health and Aged Care has been tasked with developing a national plan to respond to long COVID, he said.
That will be welcome news to long COVID patients such as Tanya Lewis.
It has been more than a year since the Victorian first contracted COVID, but she is still feeling its effects.
"For somebody that used to be up at 5:30am out doing things — working, exercising, enjoying life — it [became] drag yourself out of bed ... then by 11am I'm lying down again," she said.
Ms Lewis has been unable to continue her work as a motivational speaker and describes her life with long COVID as 15 months of pain, fatigue and brain fog.
During her interview with the ABC, she became confused and struggled to keep her train of thought.
"This is one of the things with long COVID — if you concentrate too much, you get fatigued," she said.
Ms Lewis has tried physiotherapy, sports physiology and traditional pain relief treatments, and eventually managed to get a referral to a long COVID clinic. Experts there have helped her reintroduce small amounts of exercise into her life and recommended a balanced Mediterranean diet.
But she said recovery had been slow and doctors had struggled to understand her condition.
"You feel like you've had a ten-tonne weight put on your back."
Inquiry calls for action
A months-long parliamentary inquiry into long COVID and repeat COVID infections has handed down its final report and made nine recommendations.
The recommendations included:
- establishing a better COVID and long COVID data collection system
- reviewing antiviral eligibility
- providing more support and education for GPs to treat long COVID
- developing evidence-based guidelines for diagnosis and treatment
- funding state health departments to set up long COVID clinics at public hospitals
- setting up an expert panel to advise on the impact of poor indoor air quality and ventilation on the economy
- changes to the vaccination communication strategy to emphasise how vaccines can reduce the risk of long COVID
- funding more research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
- a national summit into Australia's response to COVID, including long COVID
About 5 per cent of Australians who contract the virus suffer from long COVID, according to multiple studies cited in the report.
They are affected by "up to 200 diverse and non-specific symptoms, making recognition and diagnosis challenging", the report said.
'My GP rolled their eyes at me'
The report said while long COVID's toll on each individual was unique, many people experienced:
- impaired quality of life due to fatigue, pain, brain fog and other symptoms
- bereavement for lives/futures lost
- inability to work or care for children
- reduced immunity
- inability to socialise and play sport
- declining mental health
Many patients were frustrated with the lack of answers or consistent advice from healthcare professionals, and were now disillusioned with Australia's healthcare system, the report said.
One patient, a social worker, told the committee: "My GP, who knew me for years, rolled their eyes at me, I'm almost certain, and was very dismissive, even though she knew me as a busy mum living a very full and active life and feeling pretty debilitated."
Another said: "I have not been able to work for seven months now. Physical fatigue, mental fatigue, brain fog, memory problems, limb tremors, breathlessness. Our health system is a mess. I had to wait three months to see a cardiologist. Multiple costly GP appointments that took up to two weeks to get an appointment. Still no help."
The inquiry recommended the World Health Organization (WHO) definition of long COVID continue to be used clinically, but it should be reviewed as more research becomes available.
The WHO defines long COVID — or "post COVID-19 condition" — as symptoms that usually develop three months after the onset of COVID and last for two months or more, and commonly include fatigue, shortness of breath and cognitive dysfunction.
But the Royal Australian College of GPs told the inquiry that definition meant some patients were missing out on opportunities for early intervention, because they were forced to wait three months for a formal diagnosis.
Data problems lead to knowledge gaps
The report included an urgent call for improved data collection, arguing there was a strong need for a comprehensive national database of broad information about COVID, as well as long COVID cases.
It said the database needed to encompass groups such as children, the elderly and Aboriginal and Torres Strait Islander people. The committee "notes with concern the lack of long-term health impact studies" relating to those groups.
While some data had been collected and several relevant databases already existed, they were not well integrated and a lot of information was missing.
The report said research was being hindered by both the lack of quality data and limited research funding, which had led to "considerable knowledge gaps".
"The evidence before the committee almost universally called for improved research and data on long COVID," the report said.
Sharon Lewin, the director of the Doherty Institute, told the inquiry the current approach to funding research was driving fragmentation instead of collaboration.
"We got a whole lot of small studies and nothing cohesive," she said.
"For big challenges like this we need strategic funding that brings people together, not breaks them apart, and allows small groups to compete against each other."
Labor MP Mike Freelander, who chaired the committee, said many aspects of long COVID remained poorly understood.
"This is real. It is having a real effect on people and in particular it is having a big effect on ... productivity on the economy," he told the ABC.
"We need diagnosis, access to care and we need to support people in the long-term as they go on their management journey. They will get better but it can take a long time."
The inquiry received evidence from hundreds of affected people and their loved ones, along with researchers, healthcare providers, government officials and others.
