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When Plum Stone first contracted COVID-19 in March 2020 at the beginning of the pandemic, she was a healthy 38-year-old and experienced relatively minor symptoms.
But as time went on, her illness became worse. She began experiencing heart palpitations and chest pains, dizziness, neurological symptoms including brain fog, had difficulty swallowing, and numbness in parts of her body.
Five years later, she is still struggling with cardiovascular and neurological symptoms. She has also developed , a disorder that causes an abnormal increase in heart rate and leads to dizziness or lightheadedness.
“I was reinfected in November 2022 and basically spent four weeks in bed [with] absolutely crushing fatigue, and my POTS was at the most extreme,” she said.
“For me, the narrative that only people with pre-existing health conditions were at risk just wasn’t right, that wasn’t my experience.”
Stone is one of many Australians , and feels they are being gradually forgotten as the world moves on from the pandemic.
She said her ongoing symptoms have impacted many aspects of her daily life, including her ability to socialise and exercise. Her brain fog and cognitive symptoms can make work difficult, and busy periods or moments of high pressure lead to post-exertional malaise, or a ‘crash’.
“While some of the symptoms are under control … it’s not a cure,” she said.
“These are symptoms I’m going to be living with forever.”
How common is Long COVID?
The World Health Organization (WHO) defines Long COVID as the continuation of new symptoms for three months or more after the initial infection.
According to the WHO, around 10 to 20 per cent of people infected by COVID-19 may go on to develop symptoms that can be diagnosed as Long COVID.
These symptoms can include fatigue and post-exertional malaise, brain fog and cognitive difficulties, physical pain and rashes, respiratory issues, heart palpitations, or symptoms of other disorders such as POTS and myalgic encephalomyelitis (ME/CFS).
Catherine Bennett, chair of epidemiology at Deakin University, said it is difficult to pinpoint the number of people with Long COVID in Australia.
She said this is partially due to difficulties getting a diagnosis, and many symptoms have crossover with other conditions.
“We risk missing people with Long COVID when we’re trying to count people out there because they’re not diagnosed and they haven’t been formally captured in the medical systems as a Long COVID case,” Bennett said.
“But we also have people who could be counted as Long COVID who don’t have Long COVID, so it does make it really difficult to know.”
Calls for more support
In February 2024, the Department of Health and Aged Care for post-acute sequelae of COVID-19, commonly known as Long COVID.
Under the national plan, the government committed to improving primary care models for patients, informing the health sector and community about Long COVID, and supporting research to increase knowledge and guide future policy and clinical care.
Patients are able to access services subsidised through Medicare, such as GP appointments, mental health services, and treatment at specialised clinics in some jurisdictions.
Some patients are also eligible for JobSeeker or the Disability Support Pension depending on their circumstances. The government has also committed $50 million to research into Long COVID.
Anne Wilson is CEO of Emerge Australia, the national patient organisation for people with ME/CFS, Long COVID and other energy-limiting diseases.
She said while the world has largely moved on from the COVID-19 pandemic, the people still suffering the effects have been left behind.
“It was a pandemic and it was five years ago and that’s been and gone … but it hasn’t, for the people who are still suffering,” she said.
“[People’s] lives have been completely disrupted because they can’t work, they have no income, their family life has been affected, their ability to function in every possible way has been impacted.”
When it comes to research and treatment, Wilson believes Long COVID and related conditions have not been taken as seriously as other illnesses.
She said there needs to be more funding for GP training, more Long COVID clinics and patient support services, and wider access to the National Disability Insurance Scheme and the disability support pension.
“These are invisible disabilities and the people are invisible. They’re invisible to society, they’re invisible to their doctors, and they’ve been very invisible to government.”
SBS News has contacted the Department of Health and Aged Care for comment.
Saturday, 15 March is International Long COVID Awareness Day.
