Mother-of-two Kristie Trudgett, 44, sobs as she describes having long COVID.
"I want my life back," she told 9news.com.au.
"I don't know what to do."
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The headteacher at TAFE in Kingscliff, northern NSW, caught COVID-19 in February, and has never really recovered.
As well as constant fatigue, her symptoms include tingling so bad she describes it as "a sensation that there's poison running through my body".
While she has returned to work three days a week, she's too exhausted and ill to work any more days, she said.
"I sleep and cry on Tuesdays and Thursdays," she said.
She used spend time paddle boarding, practicing yoga and going to gigs.
Now she says she barely leaves the sofa.
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Long COVID is officially recognised by the World Health Organisation.
It's classed as a condition suffered by those who've had COVID-19, which lasts for at least two months.
Symptoms include fatigue, shortness of breath and cognitive dysfunction, or "brain fog".
A new study found women are 22 per cent more likely than men to suffer from long COVID, and they will experience a different set of debilitating symptoms to men.
Like Trugett, Sydney data analyst Anna de Sterke, 27, is also crying out for help.
She said she feels, "like she died and is seeing everybody carry on after her funeral".
She caught the virus last December, and said she was only mildly ill at the time.
But then the long COVID symptoms set in.
De Sterke described having to "budget" for what she can do every day, because of the "crushing fatigue".
That's compared to her previous life of going to the gym, weightlifting, cycling to work, hiking, and travelling with her partner.
She also has gastrointestinal issues, and says if she does anything as challenging as walk down the stairs, her heart rate soars.
"I now think about my life in terms of before I got COVID and after," she said.
"I'm experiencing a grief of the old me."
She says she tried to fool herself into thinking she has retired, to try and cope.
Meanwhile, Miquette Abercrombie, 49, has been told she can see an expert in long COVID in Melbourne – in six months.
The mother-of-two from Rowville is distraught when she describes how she has been bedridden for ten weeks, after being severely ill with COVID-19 in April.
"I literally lie in bed. I used to ride my bike 25km, I was at the gym, now I can't even walk to the laundry," she said, also in tears.
"I've never felt so alone and so sick with no support."
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She said she has been referred to a state-run long COVID clinic but must wait six months to see somebody.
All three women – who are all at least double vaccinated – have seen various GPs and say they have been told they have long COVID, after other things were ruled out.
But have so far not found any relief from any treatments.
De Sterke is seeing experts in chronic fatigue, which has been compared to long COVID.
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Only Abercrombie, a self employed registered BAS agent has any financial help – $400 fortnight from Centrelink.
Trudgett is terrified her sick leave from work will run out and she won't be able to pay her mortgage.
De Sterke is managing to work from home some of the time, and relies on the goodwill of her colleagues to get her through.
Professor Greg Dore, infectious diseases physician at the Kirby Institute and St Vincent's Hospital in Sydney, said the government needs to address the lack of services for long COVID patients.
But he believes it will improve as more cases emerge.
The federal government says between 10 and 20 per cent of people who've had COVID-19 will get some kind of long COVID.
With the official number of infections now at almost 9 million, that would mean between 900,000 and 1.8 million people could have some level of ongoing illness already.
"I think health departments are aware, there are ongoing discussions and activity around trying to develop the appropriate clinical model," Dore said.
"It was really the Omicron variant that changed the game in terms of the population level burned with infection and even if it has a lower risk of long COVID, the sheer burden of infection meant it was going to translate into long COVID."
He said doctors like him first rule out any other conditions, then refer people onto specialists to investigate individual issues such as for cognitive or heart problems.
But there's no magic cure so far.
He said research is underway globally.
"The issue with long COVID is it's not one trigger… there's probably multiple," he said
"There's no magic solution that will treat all long COVID effectively.
"It's going to be a matter of support, some specific interventions, further research to look at different approaches."
He said if people find their GP is dismissive, they should find another one.
How states and the government are handling long COVID
The Australian government said states and territories are responsible for health departments, and said a GP should be the first place patients seek help.
It said a wide range of Medicare rebates are available to help with costs, and long COVID patients may be eligible for MBS Chronic Disease Management items.
The government has also funded multiple research projects into long COVID.
NSW Health said the NSW government announced $19 million in the recent budget to pay for several new post-COVID clinics in the state, from early 2023.
There is already one at St Vincent's Hospital in Sydney.
People should see their GP in the meantime.
Victoria said the Victorian Agency for Health Information is doing a health survey to identify the prevalence and impact of long COVID, which will support its response, with plans for more services already underway.
It is spending over $600m on various COVID-19 services.
The ACT has a post-COVID recovery clinic at the University of Canberra Hospital in Bruce, and people need a GP referral.
Queensland Health said it is "is actively considering options for dedicated treatment pathways for long COVID".
WA Health said it is also "assessing the needs around long COVID", and said people need to see their GP initially.
South Australia has a long COVID clinic at the Royal Adelaide Hospital
NT Health says on its website people should see their GP if they are still ill, four weeks after having COVID-19.
The Department of Social Security said there are specific payments to support people who are unable to work due to temporary illness or a permanent impairment.
Contact journalist Sarah Swain: ss****@******om.au
