‘We never seem to recover’: the Australians grappling with long Covid

Mirabai Nicholson-McKellar tested positive for Covid-19 the same month the World Health Organization officially declared a global pandemic.

She had just returned to Australia from Berlin, where she had been working as a film-maker and beekeeper. She had nerve pain and headaches, and lost her sense of smell and taste, but felt relieved to have “escaped with what they were saying was a very mild case of Covid”.

But other symptoms developed later: “lightning bolt headaches that would feel like my brain was splitting in two”, sinus pain, nausea, diarrhoea, chest pain, breathing difficulties. “I thought I was going mad,” she says.

Related: ‘Health systems should be prepared’: doctors brace for tsunami of long Covid

Almost two years later, the effects of the virus still linger. “I still experience crippling fatigue. I have issues with sleep and brain cognition and memory,” she says. “I can’t think straight, I can’t remember things.” It has left her unable to work.

“Having Covid has completely changed my life,” says Nicholson-McKellar, who is in her 30s and now lives near Byron Bay. “For the last almost two years I’ve been living in a caravan on my brother’s property because I can’t afford to pay rent.

“I’ve had different doctors that have been great and … supportive, and I’ve had other interactions with people who have listened very sympathetically to all my symptoms, and basically fobbed them off as anxiety,” she says.

She is frustrated by what she sees as a binary characterisation of Covid: perceptions that it is either like “a mild flu, or you end up in hospital and you might die”.

“What about the rest of us that get mild to moderate Covid, we manage to stay at home, but we never seem to recover?”

‘The evidence is clear’

Public health experts have warned that Australia is flying blind when it comes to accurately assessing the scale of long Covid, with some estimating there may be 10,000 cases of the syndrome in the country by the end of the year.

Over the last two years researchers have gained a clearer picture of what causes long Covid and the myriad effects it has on the body. In October the WHO formalised a clinical definition of the condition: it usually begins three months after symptomatic Covid-19 infection, lasts for at least two months and can’t be explained by an alternative diagnosis.

The research community has known for some time that the syndrome, also known as PASC – post-acute sequelae of Covid-19 – can affect nearly every organ system, says Dr Ziyad Al-Aly, director of clinical epidemiology and assistant professor at the School of Medicine at Washington University in St Louis in the US.

One theory for what causes long Covid is that the virus lingers in reservoirs in the body, triggering a chronic inflammatory response. Another is that the virus causes the immune system to misfire and attack the body, with similarities to an autoimmune condition.

More than 200 symptoms of long Covid have been identified to date, including, most commonly, fatigue and brain fog. Symptoms can vary widely: heart palpitations, blurred vision, tinnitus, tremors, sexual dysfunction.

“The idea that viruses can have long-term ramifications isn’t really new. We have decided over the past 100 years not to pay attention to it,” Al-Aly says, citing a lack of funding for research into other post-viral conditions such as ME/CFS – chronic fatigue syndrome, also known as ​​myalgic encephalomyelitis.

In both ME/CFS and long Covid, symptoms are wide-ranging and often subjective, which makes them difficult to understand and can predispose people to scepticism, says Dr Elisha Josev at the Murdoch Children’s Research Institute.

Josev, who has studied ME/CFS in adolescents, says overlapping symptoms include cognitive difficulties, unrelenting fatigue and post-exertional malaise – in which symptoms are severely worsened by even minor activity. “They really do bear a striking resemblance to each other,” she says.

While progress has been made since the beginning of the pandemic, a lack of recognition of long Covid and clinicians telling patients “it’s all in your head” still occurs, Al-Aly says.

New research co-authored by Al-Aly, published this week in Nature Medicine, compared cardiovascular outcomes in 153,760 Americans who have had Covid with more than 11 million people who haven’t.

More than 30 days after infection, people who’d had Covid were at higher risk of conditions including heart attack, stroke, heart failure, myocarditis and pericarditis – even when the initial infection was mild or asymptomatic. “The evidence is absolutely, compellingly clear,” Al-Aly says.

“These are manageable conditions … but they’re certainly not curable conditions,” he says. “It’s very clear to me now that there are a bunch of long-haulers who will bear the scars of this pandemic for a lifetime.

“Everyone is so obsessed with counting the acute issues … the number of Covid cases, hospitalisations, deaths in the first 30 days,” Al-Aly says. “That’s really the tip of the iceberg.”

Better follow-up needed

Olivia, a Melbourne woman in her early 30s, has been trying to get medical help for her long Covid for 18 months.

She was admitted to hospital at the beginning of 2020 with cardiac and respiratory distress, but fatigue and brain fog are now what trouble her. “I used to do extreme sports multiple times a week, and now it’s once a fortnight or once a month, and then I have to recover [afterwards],” she says.

“Before I had Covid, I ran my own business as well as my full-time job,” she says. Afterwards, it became exhausting to look at screens, and she began to misspell or use incorrect words in emails. “I can’t read or write long bits of text … It’s like I’d developed dyslexia.” She was later made redundant.

Olivia has recently been referred to a brain clinic at a Melbourne hospital and is set to begin rehabilitation soon. “I would have liked to get help earlier,” she says. “I don’t want to be in this position. I could have been getting rehab a year ago.”

Long Covid needs to be taken seriously, says Dr Karen Price, president of the Royal Australian College of General Practitioners.

“GPs are under enormous pressure right now. We are caring for Covid-19 positive patients in the community and managing long Covid as well as the vaccine rollout, on top of our day-to-day care and catchup care from patients who delayed or avoided healthcare during the pandemic,” she says.

“The RACGP has developed guidelines to support GPs caring for patients experiencing long Covid, which include information on the mental health impacts of the acute illness and acknowledging and validating the patient’s experiences.”

The wide variety of long Covid’s effects can make it difficult to manage, with no single drug that can definitively treat the condition. Rehabilitation may require the input of many different health professions, says Scott Willis, national president of the Australian Physiotherapy Association.

Willis has a unique experience of the syndrome, both treating patients with long Covid and having had it himself. He contracted the virus in April 2020 from a hospital in Tasmania.

Prior to infection he swam 3km four times a week and also ran and cycled. “It’s been quite a frustrating 18 months,” he says. Although he has been able to return to physical activity, he has never regained his pre-Covid fitness level.

“I’ve been to exhaustion point with fitness, but Covid exhaustion – it’s completely different,” he says. “It’s like your whole body shuts down, there’s no power in your legs, no power in your arms.”

Willis has been able to identify what triggers his long Covid symptoms and avoid overexerting himself to the point of extreme fatigue. He has taken a similar approach while working with long Covid patients at Coastal Physiotherapy, the practice he co-directs.

“What we try and get them to do is a lot of intermittent activities so that they don’t get to a threshold that takes them into an acute flareup,” he says.

Willis is calling for better follow-up of Covid patients in Australia. “There has got to be some communication between the acute setting in hospitals and primary healthcare,” he says.

Willis says the federal government should introduce dedicated items on the Medicare Benefits Schedule for the treatment of long Covid. “If you go to a GP and you’ve got long Covid, it’s just billed under Medicare as normal. There’s no tracking or tracing of those people.

“They might need some psychology, physiotherapy, occupational therapy, social work. They might need some medical intervention because of a heart condition,” he says. “These types of things need to be more integrated.”

On good days Nicholson-McKellar tries to appreciate the slower pace of her new life, tending to her garden and bees. On bad days, when her symptoms flare up, she grieves the life she once had.

“I keep being told, ‘Oh, you will eventually recover’, but we don’t actually know that,” she says. “An incredibly challenging part of this illness is … not knowing if this is now the way my life will be forever.”

A doctor has prescribed her with medications that have alleviated some of her symptoms and improved her quality of life. “I feel supported,” she says.

“I know that at this point that is a holding pattern, to hope that there are some treatments that come out of new research that will actually help me recover rather than just help me cope.”