Long COVID: Researchers hope a quest for answers will unlock a cure for another untreatable illness

Omicron leaking into each state and territory - bar WA - is not blowing chief medical officer Paul Kelly off course.

Daily press conferences have disappeared, last-minute holiday cancellations could eventually be a thing of the past, masks in cafes may seem a quirk of memory.

But a new frontier is already emerging, set to last long after anxiety over daily case numbers subsides.

Experts warn that for many, "living with COVID" will come with chronic fatigue symptoms, brain fog, and pain in their muscles and joints.

There is much to learn about long COVID, a debilitating post-viral condition lingering months after an initial infection, but those afflicted agree it seeps into everyday life.

It also bears all the hallmarks of another little-understood condition, leading researchers to suspect a link.

They hope the search for answers on long COVID will unlock a decades-long medical mystery.

Basic tasks can leave Louise DePino, 32, unable to leave her house for weeks. It's been a fact of life ever since she contracted a flu-like illness aged 12.

With significant support from those around her, DePino completed a degree in social work but was forced to quit the profession as her symptoms overwhelmed her.

While her condition fluctuates - she is at times bed-ridden or confined to her house - at its peak, minimal exertion can trigger days or weeks of debilitating fatigue.

"It can be something just as simple as brushing your teeth or trying to write a text message," she says.

Not much is understood about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, but around a quarter of the 250,000 Australians afflicted by the condition are rendered bedbound.

Patients report extreme exhaustion, brain fog, dizziness, along with joint and muscle pain.

But as with long COVID, post-exertional malaise - causing symptoms to rapidly deteriorate after minimal activity - is a particularly crippling effect.

There is no treatment and symptom management remains the only option.

A major obstacle facing ME/CFS patients is simply being believed, whether by family members or doctors. As a little girl suffering opaque symptoms, GPs "dismissed" DePino and urged her to exercise, advice which entrenches the condition.

She hopes long COVID patients do not suffer the same fate.

"It's highly likely that if long COVID patients are being told that they just need to start exercising more, [or] they just need to start seeing a psychologist and being more positive, they will try," she says.

"People want to be better, we don't want to be unwell. So they will try, and they will push themselves to a point where it's a high likelihood they will have ME/CFS long-term."

DePino says her condition makes maintaining a social life almost impossible. "It means being very restrictive on time, or that I will need to go nap while I've got a friend here," she says.

The abrupt shift to work-from-home models has created a world more tailored to ME/CFS sufferers, giving her "the opportunity to essentially experience the outside world".

"All of a sudden we could have access through Zoom and the Internet, there were more home-based job options," she says.

"If all those things could remain, that would be fantastic."

But for now, DePino survives below the poverty line on the disability pension, and through support from Emerge Australia, an organisation set-up for sufferers of the condition.

"People with long COVID, if they need support [or] if they're feeling a bit lost right now ... the best thing is to reach out," she says.

"A lot of us in the ME/CFS community have found really effective support and ways to advocate for ourselves through the resources that Emerge has."

Macquarie University clinical lecturer Dr Richard Schloeffel OAM says long COVID has strong parallels to ME/CFS, and suspects conditions are linked. Finding a solution to one could be a fix for the other.

"If you understand the mechanism, then you can reverse it and actually start looking at what you can do to treat this," he says.

Schloeffel, who has spent 25 years working with ME/CFS patients, believes long COVID may come with a silver lining: the spotlight shone on "hidden" ME/CFS patients suffering without political clout.

"They definitely aren't seen in the community, they don't die like cancer patients, and they're not treatable like autoimmune patients," he says.

"So there's no clever drug or pharmaceutical company guiding us [and] paying for research."

But Schloeffel is optimistic a scramble to understand long COVID will provide answers those "working at the coalface" of ME/CFS have been seeking for decades.

"It's a great opportunity ... We'll find huge commonality, and it may lead us to answers for both conditions," he says.

"We've had limited research and not a deep understanding by the medical profession [about] what we're dealing with ... [we] still haven't progressed much in 20 years."

The arrival of Omicron has been welcomed by some experts, who argue what appears to be a more mild variant becoming the dominant COVID strain will bolster immunity.

The new strain is on the march in NSW. The state's Health Minister Brad Hazzard has predicted 25,000 daily cases by January, but insists the government will plough ahead with its reopening plan.

But infectious diseases expert Adrian Esterman says long COVID, which we "don't know a huge amount about", should loom large in the minds of politicians.

"There's a joker in the pack there ... We're still researching it, so we don't really want to see thousands and thousands of people being infected," he says.

"If people had a good understanding of infection and their chances getting long COVID, they really wouldn't want to get infected."

A study published by the Lancet, looking at patients whose symptoms lasted longer than 28 days, found the vast majority (91 per cent) took nine months to recover.

Patients most commonly reported fatigue, brain fog and memory issues, and post-exertional malaise.

There are signs suggesting a severe initial infection makes developing long COVID more likely, with a patient admitted to intensive care at greater risk from the condition than one who went to hospital.

And with vaccines seemingly reducing severe symptoms from, though not transmission of, Omicron, Esterman says the boosters remain vital.

COVID-19 goes beyond the lungs, attacking organs across the body and triggering an array of pre-existing conditions.

Murdoch University pro-vice chancellor for health sciences Jeremy Nicholson is frustrated by comparisons to the flu, which rarely leads to long-term effects faced by many COVID-19 patients.

"When you recover from the main symptoms of the early disease, your recovery position is not quite healthy. Even the best people are still not completely back to normal," he says.

Nicholson believes the catch-all term "long COVID", while useful, does not fully reflect the "incredible spectrum" of ongoing ailments the virus produces.

Severe symptoms during the initial infection can scar the lungs and make long COVID more likely, a risk significantly minimised by vaccination.

But in others, Nicholson warns the virus can exacerbate dormant conditions through a process not yet understood by doctors.

"Anything you've got already, COVID makes it worse. If you've got pre-diabetes, it can flip you into diabetes," he says.

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While vaccination is "always" better than the alternative, Nicholson warns we "cannot be assured" of their effectiveness against these long-term complications.

The emergence of Omicron muddies that even further, with the "immense knowledge" we now have on COVID-19 primarily centred on the Wuhan strain.

While emerging data suggests the new variant could be milder, a huge amount of mutations on its spike proteins - 32 compared with nine to 13 with Delta - have sparked alarm in the medical community.

"It doesn't take too many more mutations before we would have to call it SARS-Cov-3. It would be a new type of virus," Nicholson says.

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