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Media personality Tracey Spicer said she feels like "a shadow of her former self" because of long COVID.
The broadcaster and author was diagnosed with COVID-19 in January after catching the virus on a holiday to the Gold Coast.
She was bedridden for two weeks, and while she recovered from COVID-19 symptoms such as a severe cough, she remains so sick she can barely work.
Mrs Spicer, who lives in Sydney and is triple vaccinated, said she's hampered by debilitating fatigue and even chest pains which have seen her rush to hospital, fearing she was having a heart attack.
"I've felt like a shadow of my former self. I've been swimming through mud every day," she told nine.com.au.
"Even cooking a meal can be absolutely crushing. I can hardly walk around the block.
"I've had the debilitating exhaustion, and I also had a very worrying four weeks where I was in and out of hospital with chest pain, I thought I was having a heart attack."
Mrs Spicer, best known as a journalist and newsreader who now works mostly as a writer, speaker and #MeToo campaigner, has seen multiple medics.
Many have had differing advice, and Mrs Spicer is calling for Australia to step up its response to long COVID to better help patients like her.
One GP told her to push through her crippling fatigue - the opposite what a long COVID expert at St Vincent's Hospital in Sydney later advised.
"He said, 'I've had so many people like you come in - you must stop exercising altogether immediately,'" she said.
He told her: "If you try to push your body then you end up feeling like this for years."
Mrs Spicer previously used to exercise for two hours a day and was training for a 30 kilometre walk, but says she has now been diagnosed with mild pericarditis, a swelling of the tissue around the heart.
While new long COVID clinics are springing up, such as in Sydney, Mrs Spicer is calling for authorities to push things forward, with fears tens or even hundreds of thousands of Aussies could be affected.
"Australia is so far behind the rest of the world in its understanding of it - America has labelled it a disability," she said.
"We need a government-led public information campaign to inform health care workers and doctors as well as the public about the symptoms, and what they should be doing about it.
"Otherwise we're going to end up with this wave of disability like what they've seen in other countries, and the society and the workplace are just not ready for it."
It's not even known how many people have the condition, but almost 4.5 million Aussies have tested positive for COVID-19 since the start of the pandemic.
Modelling by Deakin University estimates between 80,000 and 300,000 people could be suffering from of COVID symptoms three months after their infection, and that could range between an estimated 14,000 to 170,000 people a year after testing positive.
The figures could be even higher, as the modelling was done before the recent Omicron wave.
GPs say they're watching closely
Royal Australian College of General Practitioners (RACGP) President, Clinical Professor Karen Price admitted the outlook on long COVID is an "emerging picture," and added they are "watching the research very closely".
She said GP's are tackling patients' specific symptoms, such as those related to the heart or lungs, and referring patients for rehabilitation such as physiotherapy.
She said the government must to step in to help fund longer consultations needed for complex long COVID cases, plus help those who can't afford the gap in costs for rehab services.
"It's challenging to see where we're going to land with this in Australia," she said.
"This needs to be viewed through the lens of chronic disease which is managed in the community by GPs and that needs support and recognition."
'Tens of thousands' face some kind of long COVID
Health policy expert Martin Hensher from the University of Tasmania, said dealing with long COVID is a "very complex" for health services, simply because so little is known about it.
"Over coming months, tens of thousands, maybe hundreds of thousand will experience long COVID," he said.
"Even places like the UK, US, places which have had much bigger numbers for longer are still very much at sea about what really to do."
He said authorities need to survey the nation to find out exactly how many Aussies have symptoms.
Then, better co-ordination between GP's, hospitals and experts like physios or occupational health therapies is needed to best help patients, he said.
He said encouraging booster jabs is also vital, as they reduce the chance of people catching COVID-19 and developing long COVID.
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Meanwhile, Mrs Spicer said she relies on husband Jason and her two teenage children to help her, as she tries to relax and hope her health improves.
"All you can do is just rest," she said. "I'm fortunate, I can still work a couple of hours everyday," she said.
What is being done to help
An Australian Government health spokesman said people with long COVID symptoms should first see their GP, with recently updated guidelines for medics published.
A spokesman said it has funded multiple studies into the condition, including giving $3.4 million to Murdoch University to further research into improving the understanding of long-term impacts, and $1.7 million to the University of Melbourne to investigate the effect COVID-19 variants of concern may have on the brain.
It said the The Australian Institute of Health and Welfare is also working on a project using COVID-19 data.
"The aim of this project is to provide an evidence base for research into the medium and long-term effects of COVID-19," a spokesman told 9News.
"Broad areas of research include epidemiological and statistical research, service and medication dispensing and patient journeys, identifying groups or cohorts of interest, monitoring, evaluation and data quality improvement."
The government puts long COVID numbers at 10 to 20 per cent of those infected, estimating between 465,898 to 931,795 Aussies might have symptoms.
What is long COVID
Long COVID is officially recognised by the World Health Organisation.
It's classed as a condition suffered by those who've had Coronavirus, which lasts for at least two months.
Symptoms include fatigue, shortness of breath and cognitive dysfunction, or 'brain fog'.
Contact journalist Sarah Swain: [email protected]