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Long Covid remains a mystery and a challenging daily reality for hundreds of thousands of people. A seven-month inquiry has found few answers, but vaccination remains one of them. By Mike Seccombe.

The government’s take on long Covid

Dr Kiran Thapaliya conducts an MRI on a patient for a Griffith University study on long Covid.

Credit: Griffith University

Seven months after it began its inquiry into the medical mystery that is long Covid, the house of representatives standing committee on health, aged care and sport could offer only one sure answer.

“Evidence received throughout the inquiry highlighted that currently the only way to certainly prevent long COVID is to avoid any COVID-19 infection,” it said, on page 1 of its report, released on Monday, April 24.

Some 171 pages later, having winnowed through and extensively quoted from 600 submissions and evidence from a vast array of clinical experts and sufferers, it ended up pretty much where it started out.

“It is unknown why some people develop long COVID and not others, how to diagnose it accurately and efficiently, how to treat it, and how to best manage the symptoms,” said the report, which is titled “Sick and tired: Casting a long shadow”.

Furthermore, it noted, three years after the term long Covid was first coined, we have no firm idea of how many people have been affected by it, how many more could be, or even an agreed definition of what constitutes long Covid. There is no clear picture of the long-term health consequences or personal and economic costs.

It is hard to recall any parliamentary inquiry that has posed so many questions and heard so many vague and contradictory answers. Indeed, says committee chair Dr Mike Freelander, detailing just how little is known was “the point of the exercise”. It was to illustrate the need to start taking the issue more seriously, to provide for more research, more data, more support for those afflicted.

There were some signs the government is taking the problem more seriously.

The day the report was released, the federal Health minister, Mark Butler, announced the commitment of $50 million from the Medical Research Future Fund for research into “post-acute sequelae of COVID-19 (PASC) – commonly known as Long COVID”.

Notwithstanding the fact that Butler said the money was just “an initial response to the inquiry”, it was a paltry sum in relative terms. As the report made clear, and as Freelander stressed to The Saturday Paper, part of the problem is that people – not just in government but among the medical profession and in the public generally – have not taken seriously enough long Covid and the related problem of repeated infection.

That was made abundantly clear in the section of the report relating to the experience of long Covid sufferers. The committee heard many instances of people “not being believed by peers, family and work colleagues about the impact of their long COVID symptoms and concerned that their experience may be considered ‘malingering’ by health professionals and/or others – a concept known as testimonial injustice”.

As a result, many were reluctant to seek help. Others were simply so debilitated by the disease that they were unable “navigate the system” to get assistance or “make sense of their symptoms alone”.

But, stresses Freelander, “this is a real, real problem. It is real, it’s not a manufactured illness.”

The fundamental difficulty is that the effects of Covid are so varied and unpredictable. Some people catch it and recover without ever being symptomatic. Others get quite sick but recover quickly. Some suffer ongoing health problems.

How many? That, Freelander says, is one of the many unknowns. “We had some people saying up to 30 per cent of people who have Covid infections will end up with prolonged symptoms lasting many months. Some people say, no, it’s less than 5 per cent.”

Evidence to the committee was that about two-thirds of Australian adults had been infected with Covid by the end of August last year, and probably many more since, which implies many hundreds of thousands of long Covid sufferers, even on the basis of the low estimates.

Professor Raina MacIntyre, head of the biosecurity program at the Kirby Institute, estimates that by December this year the total number of long Covid cases would be 1,323,482, including 43,910 children under four years old.

One slight bright spot is that it seems the rate of long Covid is lower for the Omicron variant, which is the dominant strain in Australia, compared with earlier variants. Less encouragingly, the likelihood of long Covid appears to be higher for people who are reinfected.

There are no hard figures, however, because there is a dearth of real-world data. The first recommendation of the committee was that the federal government establish a single Covid-19 database to be administered by the soon-to-be-developed Centre for Disease Control, to capture data on the number of Covid infections, complications, hospitalisations, and deaths, as well as recurrent Covid infections and long Covid cases.

It’s a big ask, in large part because long Covid, even more than acute Covid, manifests in so many ways. As the report says: “Long COVID has up to 200 diverse and non-specific symptoms, making recognition and diagnosis challenging. Each experience of long COVID is unique and symptoms can present differently in different people, ranging from mild to severe and persisting for varying periods of time.”

It went on to detail a long list of the most common symptoms, including: breathlessness, coughing, chest tightness or pain, palpitations, loss of concentration or memory, fatigue, fever, pain, reduced activity, headache, sleep disturbance, dizziness, delirium, mobility impairment, visual disturbance, abdominal pain, nausea and vomiting, diarrhoea, weight loss, reduced appetite, joint pain, muscle pain, tinnitus, earache, sore throat, dizziness, loss of taste and/or smell, skin rashes, hair loss, low mood, anxiety, intrusive memories and other psychological symptoms.

The committee advocated that all Australian jurisdictions adopt – at least for now – the World Health Organization’s definition of long Covid, which describes it as “the continuation or development of new symptoms three months after the initial SARS-Cov-2 infection, with these symptoms having lasted at least two months without another explanation”.

The committee recommended the establishment of a limited number of specialist clinics, to cater to “individuals with severe symptoms and/or complex needs”. It noted there was “significant confusion” among GPs about whether they could create “chronic disease” management plans for patients, given uncertainty about whether a patient actually had long Covid. It comes back to the question of how long, or “chronic”, is long Covid.

Some evidence suggested it depends on the strain. The report cited data from the New South Wales Health Department that the median time for recovery from long Covid from Omicron was four months and from Delta was eight months. The evidence varied widely, however: some experts suggested most patients were on the road to recovery and able to return to work after six months; anecdotal evidence suggested a much more protracted illness.

Even then, there were questions about exactly how completely people had recovered. To cite just a couple of the unknowns: the Department of Health in Victoria noted that long Covid could increase the risk of diabetes, heart attacks and strokes, and neuropsychiatric symptoms such as insomnia.

The report also noted a lack of clarity around treatment for the condition: “Possible treatments to assist people with long COVID with their recovery are also still unknown, although research is ongoing.”

The committee heard that antiviral treatments might be an effective tool to prevent long Covid by reducing the severity of acute illness, but to be effective they must be given in the first five days after coronavirus symptoms appear.

The Pharmacy Guild advocated allowing chemists to give antivirals, as happens in the United States, Canada and New Zealand.

The committee recommended further examination of access to antivirals through chemists and under the PBS, which currently does not subsidise antivirals for all long Covid sufferers.

Freelander says it remains an open question as to whether “antivirals really work or not” for long Covid. The same applies to other interventions.

“There are some treatments suggested like graded exercise programs that some of the long Covid clinics have been using,” he says. “And other people are saying, ‘No, they don’t work, it’s a waste of time, [they] can sometimes make it worse.’ So there’s a lot of conflicting information.”

One area of treatment the committee was very firm on was the need for greater support for mental health. As the report said: “Multiple witnesses and submitters reported that long COVID is generally associated with poor mental health, including mental health conditions such as anxiety and depression.”

Well, of course, the uncertainty, isolation and time lost to a protracted, ill-defined and largely untreatable illness would play on your mind.

Which brings us back to where we started, and where the committee started: the best we can do is prevention.

The committee stated that Australia should attempt to reduce cases of Covid-19 by promoting vaccination and improving indoor air quality and ventilation. Poor ventilation, the committee heard, was a major factor in the spread of the coronavirus.

It recommended the establishment of an advisory body including ventilation experts, architects, aerosol scientists, industry, building code regulators and public health experts to develop new national air-quality standards.

As for antivirals, while the evidence of their efficacy in treating long Covid was uncertain, there was strong evidence that they reduced the severity of acute Covid, which in turn reduced the likelihood of people developing long Covid.

But the big one, says Freelander, remains vaccination. Put bluntly, the government has dropped the ball when it comes to promoting its benefits. “We know that immunisation is not 100 per cent preventative of illness,” Freelander says, “but it is 70 per cent or so effective in preventing severe illness. We think for long Covid, that’s also true.”

Data shows a big drop off in vaccination rates. While more than 96 per cent of people nationally had received two doses, among those eligible for four doses, that rate was just over 45 per cent.

Just over 50 per cent of children aged five to 15 had received two doses. Less than 60 per cent had even received one.

Amid all the discussion of the things we don’t know about long Covid, perhaps the most definitive statement is found on page 110 of the report: “Although long COVID is not common, it is real and millions of Australians could potentially be increasing their protection against it simply by receiving additional COVID-19 vaccinations, which are readily available and free.”

This article was first published in the print edition of The Saturday Paper on April 29, 2023 as "The long and unknown road".

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