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

Published: 16 March 2024

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.

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.

“My life now consists of my bed, my four walls, I’m in a wheelchair … I feel like I’m just a shell,” she said.

“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.”

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.

“We want to try and prevent them from being ignored the way that we have and hopefully have access to better health care.”

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.”

Several people laying on the steps of Parliament on top of pillowcases with the stories of sufferers from the illness.

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.

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