It has been five months since Linda Molloy contracted COVID-19, but her life has not been the same ever since.
"Some days I feel like I'm doing better and other days, I get a bit teary and think this is never going to end," she said.
The 63-year-old from Perth tested positive for the virus after returning from Melbourne in March.
It took about 10 weeks for her to start recovering from the infection, but a couple of weeks later, another wave of debilitating symptoms hit.
"All sorts of weird symptoms started happening like neurological, neuropathy, severe headaches, and I was getting really anxious," she said.
"I usually get about two functional hours a day, so I do a few chores around the house and then I just feel very fatigued or get a headache and I literally don't want to talk to anyone."
Her exhaustion was so severe she sometimes could not lift her head from her pillow and had to give up driving.
She also developed a condition known as postural orthostatic tachycardia syndrome, or POTS.
"There's nothing that's life-threatening about these symptoms, except sometimes when you go to sleep you feel so bad that you think 'I'm not going to wake up in the morning'," she said.
'Long COVID is going to be a problem'
Before contracting the virus, Ms Molloy was busy caring for her daughter, who has ME/CFS.
"In the last 12 months she's been quite bad and she's had to quit work, so she's basically relied on me to take care of her and do all the chores for her," she said.
"So that's probably the thing that worries me the most is that if I don't get well quickly, what's going to happen to her?"
Ms Molloy said there was not a lot of support for people struggling with long COVID in WA and called for a dedicated clinic to be established in Perth.
South Australia, Victoria, New South Wales and the Australian Capital Territory have already set up long COVID clinics, with Queensland expected to follow soon.
"Long COVID is going to be a problem just like ME/CFS [and] I think people with these debilitating symptoms have just as much right to having some sort of treatment program set up as somebody that's got cancer or diabetes," she said.
"I think some people can have it more severe than others, but I also think that if you don't get the right treatment, the right help [and] the right direction on it early, it can manifest into something more severe."
What is long COVID?
Describing it as a "post-COVID-19 condition", the World Health Organization said long COVID occurred in people with a history of probable or confirmed infection "usually three months from the onset of COVID-19", with symptoms that lasted for at least two months and could not be explained by another diagnosis.
It listed common symptoms as fatigue, shortness of breath and cognitive dysfunction, something that could generally have an impact on everyday functioning.
It said symptoms may persist from the initial illness or start following an initial recovery and could "fluctuate or relapse" over time.
An estimated 5 per cent of Australians with acute COVID, regardless of whether they have been double vaccinated, will likely develop long COVID.
Professor of Allied Health at the University of Sydney and convenor of the Long COVID Australia Collaboration, Andrew Baillie, said cases like Ms Molloy's were common.
"No-one wrote the rules about how long it would take to recover," he said.
"COVID itself could be the largest mass casualty event in Australian history and long COVID might start to become the largest single cause of disability in Australia."
Despite the declining number of new COVID-19 cases in WA, Mr Baillie said he expected to see a "reasonably large number of people at the GPs looking for treatment for long COVID".
He said he believed a dedicated long COVID clinic in Perth could help with that.
"We really don't want people to have to jump around four or five different specialists and go and get appointments and wait … so if we can streamline things by bringing that expertise together, I think that will be really useful," he said.
"The clinic is able to reassure the person and say 'yes, we understand this and it's a common experience that a lot of people around the world are going through, so you're not alone'."
GPs want long COVID clinic considered
WA has officially recorded more than 1 million cases of COVID since the start of the pandemic, along with more than 500 deaths.
But the state government said it was too early to determine the number of people affected by long COVID.
In a brief statement, WA Health said it was continuing to "assess the needs around long COVID with contemporary data."
"There are 74 active research projects being rolled out across the WA public health system which are exploring COVID-19 in a variety of ways," the statement said.
The WA chair of the Royal Australian College of General Practitioners, Ramya Raman, said given the time it took for patients to develop long COVID, the state had only just started to recognise cases.
"It's a different cohort of patients that we're seeing here in WA, because we've had a really highly vaccinated population when the borders did open up and there was community transmission of COVID," she said.
Dr Raman said GPs in WA were still "trying to understand long COVID" but would likely advocate for a clinic if the numbers continued to rise.
"I think we need to be starting to think about it, because things can creep up very quickly," she said.
"The important thing is we're always advocating for the best possible care and services for our patients … and given that other states are considering it, it's a consideration that should be on the plate."
'The best chance at recovery'
Like Linda Molloy, Perth woman Martine van Boeijen also strongly supports the establishment of a clinic after exhausting all options to treat her long COVID.
She developed COVID-19 in April and has been unable to work at her veterinary practice because of debilitating symptoms including chest pain, fatigue, body tremors, insomnia, shortness of breath, loss of appetite and COVID toes.
The 46-year-old was also diagnosed with pericarditis due to the infection.
"On a good day, it feels like an elephant is sitting on my chest … but on a bad day, I feel like I'm having a heart attack," she said.
"I used to run 8 kilometres a day and work 60 hours a week … now I can barely complete one domestic chore a day."
She believes a long COVID clinic would give people like her "the best chance at a recovery", something Ms Molloy has spent months hoping for.
"I want to know what I can do to get better and get better quickly. I don't want it to go on for months [because] I've got to take care of my daughter," Ms Molloy said.
"It's bigger than Western Australia … everybody deserves the chance to go and get tested, get some answers and get some sort of quality post COVID care."
