‘Long COVID’ doesn’t exist as we know it, according to new research

Long COVID is indistinguishable from other post-viral syndromes and the term should be ditched, say researchers who found similar rates of long-term impairment between people who caught COVID-19 and those who were sick from other respiratory illnesses.

Patients who had been diagnosed with the syndrome are outraged by the researchers’ call to retire the phrase, while other experts have said they were unable to understand how such a conclusion was drawn.

COVID-19 testing at St Vincent’s Hospital, Sydney, during the pandemic in 2020.Credit: Louise Kennerley

The research, led by Queensland’s chief health officer Dr John Gerrard, followed about 2400 people who caught COVID-19 and about 2700 people with other respiratory infections, including influenza.

A year after infection, 3 per cent of people who were COVID-positive reported moderate to severe impairment (that is long COVID). Among the people who had caught the flu or another respiratory illness, it was 4.1 per cent.

The researchers concluded there was no evidence that a COVID-19 infection made impairment more likely. Gerrard said long COVID appeared to be a severe and distinct disease simply because of the huge number of infections during the pandemic.

“We believe it is time to stop using terms like ‘long COVID’,” Gerrard said. “They wrongly imply there is something unique and exceptional about longer-term symptoms associated with this virus.

Queensland chief health officer John Gerrard.Credit: Getty

“This terminology can cause unnecessary fear, and in some cases, hypervigilance to longer symptoms that can impede recovery.”

The research will be presented at the European Congress of Clinical Microbiology and Infectious Diseases in April, but it hasn’t been published in a peer-reviewed journal. An earlier iteration of the study, in which the researchers reported the status of participants 12 weeks after infection, was published in BMJ Public Health last year, however.

In the BMJ study, Gerrard and his research colleagues found similar rates of ongoing symptoms between those infected with COVID and the flu, and concluded “long COVID may manifest as a post-viral syndrome of no greater severity than seasonal influenza”.

The research was limited by the fact participants who were with pre-existing illnesses weren’t identified, and it focused on a highly vaccinated population contending with Omicron, a variant less likely to inflict long COVID than the ancestral strain.

A virologist from the Kirby Institute analyses antibody reaction with the COVID-19 Omicron variant in 2021.Credit: Kate Geraghty

Dr Steven Faux, co-lead of the long COVID clinic at St Vincent’s Hospital in Sydney, said observational studies should not guide public policy and he “couldn’t explain” how researchers came to the conclusion to ditch the long COVID term.

“Their comparison was between people who got COVID, of which 95 per cent are vaccinated, versus people who had the flu, of which 40 per cent are vaccinated. The vaccine is likely to decrease your risk of long or persistent symptoms.

“So you’re comparing apples with oranges.”

Faux said COVID-19 has long-term effects on almost every organ system, “including the loss of smell, taste and hair, which we don’t see in many other viral illnesses”.

Former chief health officer of Victoria Dr Brett Sutton, who now steers health and biosecurity research at the CSIRO, described the new findings as robust but said it should be up to people with long COVID to decide how their condition is described.

Dr Brett Sutton stepped down as Victoria’s chief health officer last year.Credit: Joe Armao

“I think there’s a necessity to make sure that they feel seen and heard and understood as a cohort who continue to suffer,” Sutton said.

“We need some kind of descriptor to be able to recognise them and the fact that they’ve got specific needs within the health system.”

Long COVID has forced Sydney resident Stephenie Watts to hospital twice and fundamentally rearranged her life. Watts was outraged by the suggestion long COVID should be folded in to other post-viral illnesses.

“I felt really frustrated by the fact they’re saying [the phrase] causes unnecessary fear and is ‘probably harmful’ because it really undermines the seriousness of the long COVID,” Watts said.

Stephenie Watts has suffered cognitive impairment since acquiring COVID-19.Credit: Kate Geraghty

“Long COVID really does describe what happens to oneself. It was triggered by COVID and you have this long tail of ensuing illness.”

Watts has suffered through more than three years of brain inflammation, chronic pain and vascular impacts from long COVID.

“I can’t walk more than 30 metres without stopping. I can no longer go to the shops because I can’t walk the distance in the shops. I can’t work because of the migraines and I can’t drive,” she said.

“My whole identity has really been washed away from this.”

Watts also cited recent research in The Lancet that found COVID increased the risk of 64 diseases and other negative health impacts 18 months after infection. The seasonal flu was associated only with six.

Jeremy Nicholson, professor of medicine at Murdoch University, said without lab analysis of the patients in Gerrard’s study or knowing for sure that long COVID is not physiologically different to other post-viral syndromes, the evidence to dismiss it as distinct condition is not there.

“Until this is resolved, we should still use the long COVID term because it pinpoints exactly the underlying viral cause for a given individual,” which may be relevant to future treatments, Nicholson said.

Professor Paul Fisher, from La Trobe University, is working to find signatures in the gut, immune system and blood cells to determine if there are any biological differences between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

‘This terminology can cause unnecessary fear, and in some cases, hypervigilance to longer symptoms that can impede recovery.’

John Gerrard, Queensland’s chief health officer

“We’ve done some work on blood cells, and we’ve looked at thousands of differences between ME/CFS and healthy controls. And we’ve done the same with a small number of long COVID patients,” Fisher said. “They are really similar, if not identical.”

The government announced $50 million in research funding into long COVID last year after an inquiry into the illness.

Fisher will travel to Canberra later this month with Emerge Australia, the lead organisation for people with ME/CFS, to discuss recommendation 8 of the long COVID inquiry, which pushed for more ME/CFS research funding.

Sutton said research into ME/CFS could benefit our understanding of long COVID, and vice versa.

“It’s an unfortunate silver lining that out of the COVID pandemic, there’s a deeper understanding that post-viral syndromes are probably more common than we think, and can be very debilitating.”

Last year a study estimated one in 10 people could end up with long COVID and the condition costs the nation at least $5.7 billion a year.

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