Health researchers are shining crucial new light on Long Covid's growing toll in New Zealand, where thousands of Kiwis are already struggling with lingering problems.
Long Covid, a constellation of persisting symptoms thought to accompany 10 to 20 per cent of infections, can affect nearly every organ system in our bodies – yet there remains no established treatment or cure.
Experts have warned it could cast a decades-long shadow beyond the Covid-19 pandemic, with one likening the country's potential healthcare needs to a "flood of Noah-like proportions".
One, led by the University of Auckland's Professor Paula Lorgelly, aims to build a national registry of people suffering ongoing symptoms to help inform the health system's response.
While there was ongoing research in the US and the UK, our own pandemic experience had been different.
"Understanding the impact of Long Covid in the New Zealand context is important," said Lorgelly, who has developed the project with long-hauler and high-profile advocate Jenene Crossan.
A Victoria University-led study has already shown some concerning trends among Kiwi adults infected before Omicron washed over the population.
Early findings, shared at a May symposium, showed fatigue, pain and depression and anxiety were common symptoms.
Nearly half of all respondents reported either moderate, severe or extreme impacts on usual activity like work, socialising and family responsibilities – and about one in 10 reported impacts on their mobility.
Around three-quarters felt they didn't know when their symptoms would end, and, concerningly, around half said they didn't feel understood, listened to, or have wrap-around support provided or recommended to them.
"Internationally, we know from cohort studies that symptoms are variable for sufferers ranging from fatigue and brain fog to muscle and joint pain," Lorgelly said.
"These can flare up and, for some, they are long-lasting," she said, adding that some symptoms could persist for more than a year.
Earlier this year, the University of Otago's Dr Rob Griffiths said if the acute phase of Covid-19 can be compared to a tsunami of healthcare need, then "Long Covid will be a subsequent flood of Noah-like proportions".
As well as being a major health burden, Long Covid posed an economic one: US research suggested lost wages from millions of people left out of work from long Covid may annually amount to some $170b.
Importantly, the effort would have a specific focus on Māori and Pacific people - who've been disproportionately affected by Covid-19, but also under-represented in a vaccine rollout widely criticised as inequitable – as well as those with disabilities.
"It's well evidenced that Covid-19 and the economic response exacerbated the inequalities of disadvantaged populations."
The registry would be based on questionnaires, in which people would detail their initial infection, symptoms, what care they'd sought or received, and personal impacts on work, education or family.
The evidence Lorgelly's team gathered might be used by commissioners to assess different care pathways, or give service providers a clearer picture of clinical needs – especially when it came to health inequities.
Beyond the health sector, she said, it could inform new workplace policies, or even targeted social support through benefit providers.
Meanwhile, a separate study is examining Long Covid's toll on our children – something researchers also have many big unanswered questions about.
"Globally, there's very limited robust evidence about the prevalence of long-term conditions in children, particularly those associated with Omicron infection," said the study's leader, Dr Julie Bennett of Otago University.
Long Covid prevalence estimates among children and young people vary from one to more than 50 per cent – while one major UK study indicated up to 14 per cent suffer ongoing symptoms.
"Accurate measurement of the risk of Long Covid is crucial in the debate about the risks and benefits of vaccination in children, as one of the key benefits of vaccination might be protection from long Covid."
Bennett's team aim to survey 5000 children, gathering detailed data on vaccination status, reported infections, and any enduring problems.
After dividing the cohort between children who've had Covid-19 and those who haven't, the team will draw on vaccination data to look for any differences.
She pointed out vaccination coverage among children remained low: only about a quarter of Kiwi 5- to 11-year-olds have so far received their primary courses.
"A recent review reported that people with Covid-19 who were fully vaccinated were about half as likely as people who were unvaccinated or partially vaccinated to develop Long Covid symptoms," she said.
"If Long Covid occurs at even low-levels in [the studied] population then that knowledge should help to change risk communication and perception."
Over time, there was potential to track the young cohort to gain more important insights.
Right now, University of Auckland immunologist Dr Anna Brooks said it wasn't clear just how many Kiwis were already suffering Long Covid – but nor did we fully understand the biological mechanisms at play.
"It's encouraging to see that there's been some investment in trying to understand long Covid in the New Zealand environment," she said.
"However, given the urgency for developing a diagnostic test, it's disappointing that there's been no investment into the domain of understanding the biomedical causes of this illness."
'Utter exhaustion' - author's ongoing fight with the virus
While many of us might like to think life is back to normal in New Zealand, Tania Roxborogh gets a sharp reminder each day that Covid-19 hasn't gone anywhere.
Months after a nasty bout with the virus, the award-winning author still suffers insomnia and sudden spells of intense fatigue.
"I get sudden onsets of utter exhaustion," said Roxborogh, a Canterbury-based teacher and author of more than 30 books, who last year received New Zealand's top award for fiction.
"I've got so much to do, but this just takes hours and days out of my life."
She burned through all of her sick leave long ago, and, to add to troubles, she wasn't the only person in her household with ongoing symptoms.
"It's meant that I'm not able to plan things, and on really bad days, it affects my mental health, and leaves me frustrated and thinking, have I brought this on myself?"
Roxborogh – who last month personally appealed to Prime Minister Jacinda Ardern not to scrap health measures – has been closely tracking global research on Long Covid, and welcomed the new studies.
"Knowledge is power, and hopefully this information can inform policy, especially around sick leave."
With warnings that another Covid-19 wave could begin here before the year is out, she urged Kiwis against complacency.
"We all want it to be over, don't we. But people are still dying, and people are still getting sick."