Jayson Cuming feels like he is living in limbo.
Mr Cuming contracted COVID-19 in June 2020 — well before he had a chance to be vaccinated — and two years on, still wakes every day to severe exhaustion, pain and brain fog.
The 35-year-old spends his days moving between bed and couch. Occasionally, if he can manage it, he will get up to walk around his rental house in Melbourne's north.
Life has crashed to a halt — and there is no indication it will start up again any time soon.
"Most days, it's just a wait and see if there's any new medical advice coming out for possible treatments or … hoping the government does something that might help," he said.
Just speaking on the phone leaves Mr Cuming breathless and sometimes he will sit dripping wet in a dressing gown after a shower, too exhausted to dry himself.
He has chosen not to shave his thick beard for over a year, allowing him to spend the little energy he does have on other "more important" activities, such as making lunch.
Not knowing what his future holds is "heartbreaking".
"If anything, the government has made it easier for people to get COVID now."
While many studies on long COVID are happening across the world, researchers expect it to take years to unlock the mysteries of the condition.
In the meantime, sufferers with severe, longer-term symptoms, like Jayson, have little relief available to them and are struggling to access disability support.
'Incredibly disabling'
Figuring out the exact number of people in Australia with long COVID is difficult as there is no official tally, nor is there a universal definition of it.
The Australian government defines long COVID as symptoms that persist for more than four weeks after an initial COVID-19 infection, which cannot be explained by other factors.
Research published last month suggested women, along with people who are older and had poor health pre-pandemic, may be more likely to report long COVID symptoms.
Many long COVID patients improve over time — but many do not.
A study last year found 5 per cent of people who got COVID-19 during New South Wales' first wave in 2020 were still experiencing symptoms three months later.
Australia has officially recorded more than 8 million COVID-19 infections — so even if just 5 per cent of those become long COVID, that could still be hundreds of thousands of cases.
Similarly, it is unknown exactly how many people have severe, lasting long COVID, which has been likened to another mysterious, multi-system condition, myalgic encephalomyelitis/chronic fatigue syndrome.
But what is known, is that those with severe forms of long COVID struggle to perform basic daily activities.
"Long COVID is incredibly disabling when people have severe symptoms," Australian Medical Association vice-president Chris Moy said.
"It's very multi-system and it's very hard to know what percentage [of cases] are really severe at the moment. Part of the reason why we may have patients in limbo would be to some degree the lack of clarity about diagnosis [of long COVID]."
Too unwell to work, 'not unwell enough' for disability support
Mr Cuming wants a number of more immediate actions taken to support people with long COVID while the science catches up, including more training for GPs.
But he said the number one thing that would help him live more comfortably would be financial support.
Mr Cuming attempted to start work again in 2021 before his symptoms got even worse, and he's now fully financially dependent on his wife.
The couple's income has been cut in half by Jayson's condition, causing financial and emotional stress.
While Australians with disability or chronic illnesses who cannot work can apply for support via the National Disability Insurance Scheme (NDIS) or Disability Support Pension (DSP), those with long COVID, like many others with invisible disabilities, struggle to prove they fit the detailed criteria.
NDIS participants need to prove they have a disability caused by an impairment, that the impairment is likely to be permanent, and that the impairment reduces their functional capacity to perform everyday tasks, and work, study or take part in social life.
When it comes to the DSP, an applicant's condition needs to be diagnosed, treated and stabilised.
Mr Cuming, like others who have contacted the ABC, has not been able to prove he fits either criteria.
He said extra financial support would help with medical costs, bills, rent, hiring a cleaner and paying for a wheelchair.
While he was too unwell to work, he said it felt like he was not "unwell enough" in the eyes of the government to access disability support.
"At times it makes it feel like the government thinks I'm either lying or exaggerating what I'm going through … or they consider the illness not really worth their money or time," he said.
'No real difference yet'
While research is underway on possible treatments, such as anti-inflammatories or antivirals, there is little currently available that can help patients return to pre-COVID capacity.
Long COVID clinics have been popping up across the country to help patients manage their symptoms, but most are in metropolitan areas and demand is much higher than the places available.
"We've been blown away by the amount of people that have sought us out," said Anthony Byrne, co-lead of the long COVID clinic at Sydney’s St Vincent’s Hospital.
"But there are limitations – there’s only a certain number of patients we can see and there are waiting times of weeks and months."
Mr Cuming has been attending a public long COVID recovery unit in Melbourne for the past few months but has seen "no real difference" yet.
Soon after joining, he was prescribed light, seated exercise, which he said made his condition worse.
Professor Byrne said it was important long COVID information and support was also available outside of the clinics.
"We shouldn't be doing things in silos," he said.
'A bunch of waves' coming
COVID-19 is showing no signs of dissipating — Australia is on the verge of another Omicron wave, with Queensland and NSW particularly on high alert.
Dr Moy said he expected the prevalence and impact of long COVID to continue to balloon as time goes on.
"It's worrying," he said.
Some researchers and disability advocates have termed the pandemic a "mass disabling event" and warned long COVID could cause significant disruptions to the workforce and demand for support to skyrocket.
"We're on the beach and there's a bunch of waves coming, not just one. COVID is not going away in the foreseeable future," Professor Byrne said.
"Most people will get over their COVID and not have long COVID. But there is a percentage that will … so we need to be thinking about resourcing."
Professor Byrne said preventing further acute COVID-19 infections would go a long way to keeping a handle on long COVID.
"If we can limit severe disease, then we will limit long COVID," he said.
New Health Minister Mark Butler did not respond to questions from the ABC.
Mr Butler acknowledged last month that long COVID would likely be a "major health challenge for the coming couple of years at least".
"I'm very keen to talk with clinicians, with researchers, have a look at the international research as well, and start to make sure that our health system is prepared for what will be a very big wave of people experiencing these very long symptoms," he told the Seven Network.
But that's of little comfort for Mr Cuming, whose life is on hold as he attempts to navigate a system not ready to help him yet.
"This is not something you would wish on anyone ever," he said.
