At the start of the year, Sue La Velle was running her own business in Hobart's northern suburbs.
Then she caught COVID-19 — and eight months later, she is still living with the symptoms.
"I've lost my business … because I couldn't function," she said.
"I had a cleaning business and was cleaning four, sometimes five houses a day. It takes me all day to clean my own house now."
Modelling by the University of Tasmania's Menzies Institute for Medical Research suggests half a million people nationally could be suffering long COVID symptoms by the end of the year.
The report's lead author, professor Martin Hensher, said the modelling suggested at least 4,000 Tasmanians currently have long COVID symptoms.
"At least 900 of those people probably have severe long COVID which is really impacting on their ability to lead their lives. That's our minimum estimate,' he said.
"It is possible that it might be quite a bit higher and that actually several thousand, maybe as many as 10,000 people [in Tasmania] might have long COVID and 2,000 might have severe symptoms."
Ms La Velle's long COVID has meant she rarely leaves the house.
"The tiredness … you do something for 10 minutes and you can't do it anymore," she said.
"I have trouble talking sometimes because you can't breathe. I'm not sleeping.
"They call it brain fog. I describe it as someone lit a fire in my head and I'm trying to see through the smog."
Her inability to work means she is now on a Centrelink payment which is $90 a fortnight less than her rent.
Ms La Velle does not qualify for any additional support payments, and said her condition was not recognised as a disability until it rendered her unable to work for at least two years.
"My mental health is pretty shot at the moment," she said.
"It makes me feel helpless because I've always done for myself. It makes you feel hopeless … when can I go out and get a job and earn money? When is it going to improve?"
Sue stops treatment as costs add up
In mid-September, Tasmania set up a post-COVID-19 referral service to connect people who are still experiencing symptoms with the medical care they need — including specialist help.
The health department is encouraging anyone with lingering symptoms to reach out to their GP to see if the referral service can assist.
But specialist appointments for long COVID sufferers do not come cheap.
"I urgently had to see a cardiologist, and so far, it has cost me $1,600, which I had to borrow from my children," Ms La Velle said.
"I can't get all the tests I need because it's hundreds and hundreds of dollars. I had to stop all the supplements I was using because I couldn't afford it."
Ms La Velle has opted to take part in trials to access help.
"I've just signed up for a Melbourne-based trial that is looking at what supplements work," she said.
"That will go over six-plus months. I've had blood tests done today, that I couldn't access through the doctors here, but it has shown that I may have clots.
"People need to be able to access these basic tests."
Plea for COVID treatment clinic
COVID cases are continuing to trend upwards in Tasmania, with a 21 per cent increase last week.
Ms La Velle said there needed to be a dedicated clinic established in Tasmania to offer affordable treatment.
"I could just cry every day. Not through sadness or anything like that … frustration, that's what it is."
"Why is nobody listening? Why is nobody understanding?"
Nationally, Professor Hensher said there were big waiting lists and wait times for people wanting to access long COVID clinics.
"Long COVID is a new disease, it's a new burden on the health system so how do we care for them at the same time as the whole healthcare system, some people would say is in a crisis?"
"In Tasmania and nationally we are in the middle of a crisis of general practice where it really is difficult for people to access GP care.
"I think we need to look at how do we actually fund states and territories to provide good services for people with long COVID over the next year or even longer."
As well as health issues, he said long COVID was pushing people into poverty.
"Probably over the coming months we will see more people having to drop out of the workforce," he said.
"They are pushed into poverty, they are not able to work, they are left with debts they cannot sustain."
Tracking and research essential
Professor Hensher said Australia also needed to improve its tracking of the virus, saying the country is behind in two areas.
"There has been some funding for research but definitely not on the scale that we're seeing in peer countries like the US and the UK," he said.
"But I think even more of a problem has been not so much research but that we haven't invested in surveillance."
In the meantime, he said it was important to wear masks in public places and strengthen, not scale back testing regimes.
"Every case of COVID that we prevent is somebody who is not going to be at risk of long COVID."
