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I remember staring at a document at my first office job about five years ago when the letters began to skate and slide into each other. My vision and focus couldn’t latch on to one particular thing; it was like my consciousness had lost its grip.
In the weeks that followed, fatigue struck and muscle tremors racked my hands, legs and face. One day, I dashed out of a uni lecture after my bicep began to quake so violently it looked like a tiny, furious demon was trying to possess my left arm.
After two years of MRIs, blood tests and an appointment with a neurologist who zapped my arms and legs with electric pulses, doctors could identify only one thing out of order: antibodies for Epstein-Barr virus, the pathogen that causes glandular fever, in my blood.
After reading countless testimonies from people with long COVID, I know now that I was lucky the post-viral fatigue didn’t derail my life.
Melbourne woman Alicia Newnham, who contracted long COVID last year and spoke about her experiences for our series on the illness, wasn’t so lucky.
“I’m the person who normally just keeps going, but I just woke up one morning and thought, ‘What’s wrong with me?’” she said. “I sat on the edge of my bed and just couldn’t move. Everything in my body was hurting and screaming at me.”
Another sufferer made a submission to the government’s inquiry into long COVID, writing: “I dream of being able to drive a car, or walk in the park two blocks from my home. I miss being in the sunlight.”
Now researchers hope the parliamentary report into long COVID released on Monday – which found that the condition affects between 2 and 20 per cent of people infected with COVID-19 and costs the Australian economy at least $5.7 billion a year – will mark a turning point in how post-viral conditions and other chronic diseases are studied.
Why long COVID research isn’t starting from scratch
Australian National University virologist Brett Lidbury has researched myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for more than a decade. He believes long COVID is a post-viral version of ME/CFS.
“My big concern is that there was some commentary out and about that long COVID is brand new, and that we haven’t seen it before. Which is just not true,” says Lidbury.
He urged the inquiry to consider three decades of studies into ME/CFS, arguing the research provided a crucial head start for understanding long COVID, a condition that can manifest in 200 different symptoms.
Lidbury is on the hunt for biomarkers that could help identify ME/CFS in a blood test – and also help diagnose long COVID.
“There probably won’t be a magic bullet [for long COVID diagnosis] where you just have one particular protein or one cell that goes up or down due to illness,” he says. “But what has been promising is the study of unique patterns in lots of data collected from people with ME/CFS or post-viral fatigue, and people without it.”
That’s where a national long COVID database – one of the headline recommendations from the inquiry – comes in.
How would a national dataset influence treatment of individuals?
“Australia is at the forefront of these large population-level data linkages,” says Dr Mark Falster, a health data expert and senior research fellow at the School of Population Health at UNSW.
“It gives us a fantastic opportunity to leverage this data for research and for understanding of conditions like long COVID.”
Bringing together federal health data, hospital admissions and information from GP clinics has previously allowed researchers to identify urgent gaps in treatment for conditions ranging from cancer to cardiovascular disease.
“We used this type of [national] data to look at all people hospitalised for a heart attack,” Falster says. “We found about half those people didn’t fill a prescription for best practice medicines once they left hospital. So, you can identify huge gaps in the patient journey.”
For long COVID, a national database could generate evidence for effective methods of treating and managing the disease and eventually inform clinical decisions.
Many proposed treatments for long COVID are drawn from treatments designed for CFS/ME, including pain medication, boosting sleep hygiene, increasing salt intake to manage heart palpitations and graded exercise, which is controversial because exercising too much can exacerbate symptoms.
Clinical trials investigating long COVID treatments are fairly rare, so anything that could provide extra evidence about the efficacy of treatment options – such as data analysis on the national scale – would be extremely valuable.
An Australian long COVID treatment trial
Dr Craig Anderson, director of Brain Health at The George Institute for Global Health, is running a randomised control trial to scrutinise the potential of atorvastatin – a medicine usually prescribed to lower cholesterol – to treat long COVID.
“In addition to lowering cholesterol, the statins can damp down inflammation,” Anderson says.
“So given that COVID is an inflammatory condition related to the virus infiltrating the body, we just thought that maybe atorvastatin, which is pretty safe to give, may reduce the inflammation in the body, particularly around the blood vessels, and that could improve recovery.”
Anderson says the challenges of studying long COVID and recruiting patients for the trials are unique.
“I’ve been doing research for 20 to 30 years, and it’s normally pretty straightforward to recruit a patient into a clinical trial after a half-an-hour discussion,” he says.
“But for long COVID patients, it takes us about three hours. There’s a lot for them to offload. They’re worried about what’s happening in their brain. I’ve got to spend a lot of time talking to them about their illness – they haven’t had it sorted out because no one knows what to do.“
Anderson, who expects results in 2025, is testing patients on measures including quality of life, mood and physical functions alongside blood tests and brain scans.
“There’s not too many clinical trials going on in long COVID, but hopefully, it will shed some light on the condition and potentially a treatment strategy.”
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