Published: 20 February 2024
It’s been four years since Tim Stannard could smell or taste anything normally, thanks to what he originally thought was “a little flu”.
“It’s debilitating. It’s depressing. Over four years now, I’ve suffered daily symptoms,” he said.
Months after returning to Australia, Mr Stannard said his symptoms were getting worse.
His GP referred him to numerous specialists, including a gastroenterologist, a lung specialist and a cardiologist, but none of them were able to find anything that explained his symptoms.
“It took me two years just to get a diagnosis of long COVID,” he said.
Eventually, he heard about a new long COVID clinic that had opened in a major Sydney hospital in 2022 and Mr Stannard asked his GP “on bended knee” for a referral.
It took six months for the clinic to respond with an appointment time, which was with an intake nurse over the phone.
“She referred me to a bunch of literature which is basically four years old, which is like ‘get lots of rest, drink fluids, sniff lemons and cloves to fix your broken brain cells that aren’t smelling anymore’.”
Mr Stannard said he wasn’t given any real answers regarding what medications he should take.
“Then I was told my next appointment will be in a year’s time in October of 2024,” he said.
Mr Stannard’s difficulties in accessing help is a common story amongst long COVID patients around the country, according to the CEO of Emerge Australia, Anne Wilson.
“The issue with long COVID clinics has been that the minute they’re open, they fill up and even people with long COVID can’t get appointments for six or nine months,” she said.
Emerge Australia supports people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Ms Wilson said 45 per cent of long COVID patients would be classified as having ME/CFS after three to six months.
“We have a major problem in this country. We can have as many long COVID clinics as government wants to fund, but at this point in time, the ME/CFS community … have nowhere to go and have no treatment available.”
long COVID is defined by the Australian Institute of Health and Welfare as still having symptoms 12 weeks after the initial infection.
Researchers estimate between 5 to 10 per cent of people who have had COVID meet that definition, while studies in the UK show it could be as high as 17 per cent.
According to the Department of Health and Aged Care, there have been more than 11.8 million cases of COVID-19 in Australia.
The majority of long COVID patients will be dealt with by their GPs, not specialist clinics, according to the federal government’s response to a parliamentary inquiry into long COVID, which was released last week.
But Ms Wilson said surveys by Emerge Australia revealed GPs were concerned that they didn’t know how to diagnose and treat ME/CFS or long COVID.
In its response to the inquiry, the government “noted” a recommendation to fund multidisciplinary long COVID clinics in major hospitals, but added it was up to state and territory governments to decide how they spent existing funding.
A separate recommendation to fund ME/CFS research was supported in-principle by the government, though no new funding has been announced.
Ms Wilson said the government’s response to the report was “a missed opportunity”.
“The ME/CFS community has been devastated by the government’s response to the long COVID inquiry report,” she said.
“Once again, this community feel that they’ve been overlooked and neglected.”
