Scientists say there’s been a ‘revolution’ in understanding long COVID, but sufferers are still feeling left behind

Miquette Abercrombie describes the COVID-19 infection that changed her life as “straightforward”, but what happened afterwards was anything but.

Over the 700 days since her infection, which was in April 2022, she said she has experienced hundreds of different symptoms, from fatigue, brain fog, changes to her voice and heart issues.

She now struggles to walk normally and can no longer drive a car.

Before she became infected with COVID-19, the 51-year-old mother of three would run long distances, go swimming and cycling, and loved gardening.

“I had to defend myself because people just didn’t believe that I was sick … and just fighting to be seen and heard from your loved ones and your family is absolutely destroying.”

The World Health Organization (WHO) definition of long COVID, or post-acute sequelae of COVID-19 (PASC), now accepted by the Australian government, defines it as the continuation or development of new symptoms three months after the initial infection.

Fatigue, shortness of breath and cognitive dysfunction are recognised as some of the more common symptoms.

Though estimates vary and there is no accurate data, research presented in Australia’s long COVID plan suggested the proportion of Australians impacted may be around 5 to 10 per cent of those infected, meaning more than 500,000 people.

Alicia Newnham, 45, developed the illness after her first COVID-19 infection in May 2022.

She used to run her own cleaning business, demanding physical work, five days a week.

That’s over now, and she said her family was struggling to make ends meet on a single income, with the added cost of medical bills and prescription medications.

She said she was often asleep when her three children left for school and was unable to drive them around or attend their sports games.

“They’re missing out on their mum too,” she said.

“And my husband is my carer now as well as caring for them.”

Ms Newnham and Ms Abercrombie are behind Long COVID Support Australia — an online community resource that connects long COVID patients and recent research findings.

The pair helped to organise an event held in Melbourne on Friday — where about half a dozen sufferers lay on the steps of Victoria’s Parliament House to mark International Long COVID Awareness Day.

The small group were surrounded by more than 200 pillowcases marked with stories of those who could not attend because they were too sick.

The pair said the event is not a rally or a protest, but an action “to show people that we exist”.

“It’s for everybody, for people in the future, who might go through what we’ve gone through,” Ms Newnham said.

In particular, they are hoping to draw attention to the government’s recent parliamentary inquiry into long COVID and push for further action, including more training for doctors, better access to antivirals for those suffering from long COVID and income support.

Emerge Australia is the national patient organisation that supports those living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

It also now provides support and education to those suffering from long COVID.

“The impact of long COVID and of ME/CFS on the individual is identical,” CEO Anne Wilson, who attended Friday’s event, said.

“[Patients] lose their lives. They can’t work. They can’t function as a member of a family.” 

Ms Wilson acknowledged that the government had put a significant investment into long COVID research, committing $50 million in April last year, but said more was needed to support both long COVID and ME/CFS patients while the research was taking place.

A health department spokesperson said the government was also committed to strengthening primary care arrangements for people with long COVID.

The spokesperson said Medicare was now allowing long COVID patients to have consultations longer than 60 minutes, and the government had invested an additional $50 million in June last year to drive innovation in primary care, which will support people with long COVID.

Revolution in long COVID knowledge is underway

Suman Majumdar, the Burnet Institute’s chief health officer of COVID and Health Emergencies, said there had been a revolution in our understanding of long COVID and the science on it was “crystallising”.

“In the last three or four months, there’s been some major advances and developments, as well, from both the science and policy perspective in long COVID,” he said.

He said some of this research deals with the biological perspective, which has demonstrated how the virus that causes COVID-19 produces long-term effects and is different from colds and influenza.

He said other recent significant research includes findings about the impact of COVID-19 on the brain, including its ability to have an ongoing impact on IQ function as well as studies that have shown how the virus persists in brain tissue.

“The understanding of how COVID invades these multiple organs has been, really, a game changer,” he said.

“It shows that firstly, this condition is real, and secondly, it will help us develop strategies and treatments to address it.”

And while this understanding is key to developing future treatments, Dr Majumdar said they don’t exist yet.

Delay in government response to long COVID plan

While Dr Majumdar commended the government’s response to the long COVID inquiry and its development of a long COVID plan, he said more actions were needed to address Australia’s current and future burden of the condition.

He noted there was a “long pause” between the inquiry handing down its final report, in April 2023, and the government issuing its response, in February this year, and said more needed to be done. 

“There were no new significant actions coming out of the inquiry, and the scale of what’s in place doesn’t match the need, so absolutely, more needs to be done,” he said.

RMIT professor and pain management researcher Zhen Zheng is part of a multi-disciplinary team studying long COVID.

She agreed there had been a change in Australia in how long COVID was being viewed and said the government’s long COVID plan and its move to develop clinical guidelines were both positive steps.

“I certainly have seen a shift in GP practice to a better understanding of patients to actually allow earlier treatment and referrals for people with long COVID,” she said.

However, speaking from his home in St Louis, in the United States’ Midwest, professor and clinical epidemiologist Ziyad Al-Aly, who recently testified at a US Senate hearing into long COVID, said Australia’s response was not good enough.

“In Australia, it’s really an undersized solution to a big problem,” he said.

He said there were few new initiatives announced as part of the Australian government’s response to the long COVID inquiry, and what was announced was “cosmetic”.

He said Australia must add to the global understanding of long COVID not only for the patients of today but to protect against future pandemics and new post-viral illnesses.

“We are going to be hit with another pandemic … and pandemics disable people,” he said.

“It would be a historic missed opportunity for Australia and the whole world if we don’t have the will to actually really solve this, unlock the mysteries,” he said.

Dr Al-Aly added he found discussions like the Queensland Chief Health Officer’s suggestion that we should stop calling the illness “long COVID” not helpful.

“I think we should settle this really quickly and move on to more substantive tasks that lie ahead, you know, how do we treat long COVID?” Dr Al-Aly said.

The Australian government has shifted towards referring to the illness as post-acute sequelae of COVID-19 (PASC), but still also uses the term long COVID, which Dr Majumdar said he preferred.

“It was a word that was developed by people affected by the disease. It was coined by the community, and it’s understood broadly by the community,” he said.

While proven treatments remain elusive, many people who are living with long COVID experience improvements in their impairment.

James Mancey’s long COVID was so severe that he was bedridden for five months.

“I was bed-bound/house-bound, sleeping 21 hours a day, but it didn’t help,” the 40-year-old said.

The hydrologist was unable to work during this period towards the end of 2022, but two years on from his initial infection, he has improved considerably and has now returned to work four days a week.

“My body still struggles a lot, but I’m very lucky that I’m better than I was,” he said.

“It’s still very much part of my life, I have to manage it every day.”

He gathered with a group of long COVID sufferers at the Tasman bridge in Hobart on Friday night, one of 29 landmarks around the country that were lit up for long COVID awareness day.

He said he felt it was important for people like him, who now have the capacity, to keep speaking out about the illness and pressing for better government support, including financial support, for those who are seriously sick.

“It needs to happen quick, and it needs to happen now,” he said.