IMAGE DESCRIPTION: A person in theatre scrubs wearing a stethoscope around their neck holds a mobile phone and stylus. Enclosed in one of 2 smaller images is diabetes medication and monitor and the other is an image from The ME Association's Real ME Campaign library of images or people with ME/CFS. The title reads Long COVID research pledge prompts push to consider mystery links to other illness. ME Association logo (bottom right)

Long COVID research pledge prompts push to consider mystery links to other illness

Article extracts

In this article Brad Ryan talks about the possibility of developing long term conditions after being ill with Covid – 19.

He was drinking up to five litres a day, and still constantly feeling thirsty. An aspiring Olympian, the then 19-year-old put it down to the increased training he was doing in his sport of choice – judo.

Byron McIntosh first began to wonder if something was wrong with him when no amount of water would quench his insatiable thirst.

But then his body began to rebel in other ways.

One day, his father saw him behaving strangely, staring blankly at a wall in a “zoned out” state.”It was just like my head wasn't working,” Byron said.His father raced him to a GP and, after a urine test, the GP told them to head straight to the emergency department.”I was feeling pain in my kidneys,” Byron said. “I was not aware of my surroundings completely. I was told at the time, as I was conversing with someone, I was just looking beyond them.”

Tests revealed his blood sugar levels were dangerously elevated. “A doctor [said] my blood was essentially syrup.”

The diagnosis was clear — Byron had type 1 diabetes.

Inquiry evidence becomes personal

When Byron got ill, life and work began to intersect for his mother, Melissa McIntosh.

She's the Liberal MP for the Sydney seat of Lindsay, and the deputy chair of the parliamentary committee that's been investigating long COVID.

Ms McIntosh had pushed for the inquiry to be established after her own experience with lingering COVID-19 symptoms and the lack of quality information she could find.

However, after her son's diagnosis last year, the inquiry became even more personal. And the parliamentary probe began hearing more evidence of recovered COVID patients developing other conditions.

Committee calls for specific chronic fatigue research

There are hopes the inquiry – and the promised subsequent research – will also lead to a better understanding of illnesses like chronic fatigue syndrome.

Australian National University virologist Brett Lidbury, who researches post-viral fatigue syndromes, was pleased to see the condition referenced in the committee's recommendations.

Despite falling outside the inquiry's terms of reference, the committee specifically called for research funding to be spent investigating chronic fatigue syndrome.

Dr Lidbury said many patients were neglected by the health system.

“The patient experience more or less says that in general they're ignored or disbelieved,” Dr Lidbury said. “There were guidelines for medical practitioners published in 2002, so you can imagine – they're over 20 years out of date now.”

Also known as myalgic encephalomyelitis or ME/CFS, the condition shares many similarities with long COVID.

Some experts, including Dr Lidbury, believe long COVID is the post-viral form of ME/CFS.

He said that means 30 years of dedicated post-viral fatigue research could give scientists “a massive head-start” in understanding long COVID.

The Department of Health and Aged Care has now been tasked with putting together a national plan to respond to the committee's findings.

Research grants are expected to become available from August.

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