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Newer variants of COVID-19 are less likely to cause debilitating and long-lasting symptoms, but long COVID patients are still waiting up to 12 months to access support.

As an eighth wave of COVID ripples across the country, a new Australian study has found that 12 per cent of people infected with Omicron last year developed long COVID, compared with 25 per cent of those who caught the ancestral strain in 2020.

Ann Van Leerdam has had long COVID since January. The fatigue is so extreme that she struggles to walk and can’t stay up past 7pm, often missing tucking her son into bed.Credit: Paul Jeffers

The researchers – from the University of Melbourne, Royal Melbourne Hospital and Victorian Department of Health – defined long COVID as having persistent symptoms that impaired daily tasks for at least three months after an infection.

Risk factors for long COVID include being female, aged between 40 and 49, having a previous chronic illness and experiencing a severe case of COVID, said associate professor Alex Holmes, the study’s lead author and a psychiatrist who worked at the Royal Melbourne Hospital’s recently closed long COVID clinic.

Holmes suspects that the decreasing virulence of the virus could explain the decline in the proportion of people developing long COVID.

“The later variants are causing less severe and abnormal immune responses, both in the acute phase and in the prolonged phase,” he said.

There is a dwindling number of specialist long COVID clinics in Australia, with many public hospitals closing their services after COVID funding agreements between states and the Commonwealth came to an end. There has also been a push to move these services into general practice.

The clinics that remain open are overwhelmed with demand. Patients face a four-month wait to be seen at Geelong’s Long COVID Clinic, while those at the Post-Acute and Long COVID Clinic at St Vincent’s Hospital in Sydney have a 12-month wait.

Professor Stephen Faux, who co-leads the St Vincent’s clinic, said 25 per cent of his patients had given up work. Their most common symptoms are fatigue, breathlessness, cognitive impairment, headaches and a resurgence of childhood asthma.

“Sometimes there’s some associated mental health issue like anxiety and depression,” he said.

He said international research had found that 90 per cent of people with long COVID had no symptoms after two years.

The clinic, which is seeing patients who contracted COVID between last December and March, will soon double its employees to reduce its waitlists to a few months.

Faux said while earlier strains of the virus were more likely to lead to long COVID, more people caught Omicron, so there has been no slowing down of new long COVID cases.

Ann Van Leerdam, who is in her 40s, has been battling long COVID since January.

She’s so exhausted at the end of the day that she goes to bed at 7pm most nights, often before her 10-year-old son.

“I will never get back the year of my son’s life that I haven’t been able to engage in,” she says.

“Because I go to bed so early, I don’t get to tuck him in some nights.”

As well as the fatigue, Van Leerdam struggles to walk. “It’s like the power goes out in my legs,” she says, as she shuffles across her living room in Murrumbeena, in Melbourne’s south-east.

The condition has also impacted the community development officer’s cognitive skills: she struggles to write emails in the afternoon and sometimes forgets words.

Van Leerdam works four days a week, and taking extended sick leave is not an option as she has to pay off the mortgage on her apartment.

She said if she contracts COVID again, she will have to spend $1130 on antivirals because she does not qualify for a subsidy.

She’s yet to find a doctor who will validate her experience and provide her with strategies for managing the condition.

Ann Van Leerdam has been unable to find a doctor who can help her manage long COVID.Credit: Paul Jeffers

“It’s baffling how little infrastructure has been put in place for sufferers,” she said.

Dr Jenny Huang, a GP who works at the Geelong Long COVID Clinic, would like to see more training and remuneration for GPs to help them care for long COVID patients.

She said it was common for patients to recount how doctors had ordered a battery of tests and then told them nothing was wrong.

“They are left with their own devices to get better,” she said. “They have struggled to find people who will take them seriously.”

Doctors Bernard Shiu, Jenny Huang and Victor Wong at the long-COVID clinic in Geelong.Credit: Jason South

Her clinic sees about 15 long COVID patients each week, with each consultation running for an hour or more.

Some patients have driven for four hours to visit the GP-led long COVID clinic, which is the only one of its kind in Victoria. It assesses patients, provides them with strategies for managing the condition and might refer them to occupational therapists, exercise physiologists or cardiologists.

Huang said the Medicare rebate just covered the costs for the long sessions, but patients also have to pay an out-of-pocket fee of between $136 to $173 for an initial consultation.

“Many GPs may not have the capacity to care for [those patients] because they are so stretched,” she said.

Professor Martin Hensher from the Menzies Institute for Medical Research said being up-to-date with vaccinations and wearing masks protected people against COVID and long COVID. “Every new COVID infection you have is a new opportunity to develop long COVID,” he said.

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