When daily 1pm press conferences returned to our television screens a year and a half after the first lockdown, a group of Covid-19 survivors seethed every time Ashley Bloomfield began to rattle off the latest case numbers.
“Our total number of cases in this outbreak is 1719,” Bloomfield said, for example, on October 13 last year. “Of these, 1188 have recovered.”
The members of a Facebook support group knew better. At least some of those Covid-19 cases couldn’t really be said to have recovered. Some still hadn’t. They knew this because they, themselves, were considered “recovered” – even though their lives were irrevocably damaged by a past infection.
“For a long time there, as the daily 1pm pressers were held by the ministry, we would hear that little word used to describe those who were no longer infectious. It became an afront over time, nine little letters causing great upset amongst my peers,” Jenene Crossan, one of the most prominent Long Covid patients and advocates in New Zealand, said at a University of Otago symposium for the condition last week.
“It didn’t make room for what our experience was, it was the beginning of what for many felt like years of gas lighting. It left no room or made no space for those who simply hadn’t done what was being suggested. We had not recovered.”
That support group for Long Covid patients in New Zealand now has around 700 members. But this is just “the tip of the iceberg,” according to Victoria University of Wellington epidemiologist Mona Jeffreys.
In the wake of virtually uncontrolled spread of the virus in March and April, tens of thousands of New Zealanders are thought to have Long Covid. They won’t all be debilitated like the most extreme cases, but they will suffer and struggle for weeks, months, even years after the Ministry of Health deems them recovered. Crossan, for her part, still grapples with brain fog, a lack of smell and other symptoms more than two years after her brush with Covid-19.
This is not just a health crisis, set to induce huge demand for primary health services in a system already stretched to the limits. It will also have long-lasting social and economic ramifications as Long Covid patients find themselves unable to work, unable to afford housing, unable to maintain relationships or even care for their children.
And, of course, Covid-19 isn’t over. Another wave is expected over winter and there’s no reason to think it will go away forever after that. With each new surge in cases, we can expect another tide of disablement, experts warn, alongside the usual metrics of hospitalisations and deaths.
Defining Long Covid
How many people have Long Covid in New Zealand right now?
No one can say for certain. There’s no simple diagnostic test for the condition. It’s also an umbrella term, says University of Auckland immunologist Anna Brooks, covering symptoms common to other post-viral conditions but also a whole set of novel impacts like organ damage and increased cardiac risk.
Long Covid is often compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic illness which saps patients of their energy. Exertion worsens the fatigue. Rest does little to improve it.
“ME/CFS tops the list in lowest quality of life. If you’re in the severe category, you’re barely alive. It’s really, really debilitating,” Brooks said.
“We absolutely know that SARS-CoV-2 is capable of causing that condition. But because there’s so many people being impacted by this virus, we are also hearing of all these other organic damage elements. It’s almost like the worst virus in the sense that- well, I guess that’s the whole point is we just don’t know.”
This is a problem that plagues any discussion of Long Covid – so little is known about it that it’s hard to even determine how many people have it. The most easily quantifiable definitions test for persistent symptoms at various stages after infection – 4 weeks, 6 weeks, 12 weeks and so on. Those might miss increased cardiac risk or organ damage caused by the virus, but they give a rule of thumb.
Brooks said that, based on this metric, perhaps one in 10 Covid-19 cases in New Zealand could expect to get Long Covid.
There is increasing evidence that vaccination reduces the likelihood of developing Long Covid. Studies from earlier in the year indicated vaccinated Covid-19 cases were half as likely to end up with Long Covid than those who were unvaccinated. A more recent study, published in Nature last week, dropped that benefit down to 15 percent but still highlighted that vaccinated cases were better protected from Long Covid than unvaccinated ones.
“This is really encouraging given that, particularly among our adult population, [vaccination rates] are pretty good. Among kids, I have a huge worry, because obviously the vaccination rates for under 12 year olds is much lower and for the little ones it’s nothing at all,” Jeffreys said.
A best case scenario for New Zealand might be 2 percent of Covid-19 patients developing Long Covid, if everything goes our way, she said. But that’s still a huge number of Long Covid patients, given 1.1 million people are known to have tested positive and up to half of the country is estimated to have been infected during the Omicron wave.
“If we’re talking about half the population having had Covid already, it’s huge numbers of people. We’re talking several tens of thousands. I am really concerned,” Jeffreys said.
Many tens of thousands more could be added on to that count after Covid-19 again sweeps through the community over winter. And even now, between peaks, thousands of people are testing positive every day, leading to at least 100 new Long Covid patients on a daily basis.
The effects of fatigue
The ramifications of this massive wave of chronic illness are significant.
Most Long Covid sufferers won’t be debilitated. But close to half may find the condition has a moderate to extreme impact on their daily life.
Jeffreys is one of the leads on the “Impacts of Covid-19 in Aotearoa” study which sought to interview every single Covid-19 case infected prior to December 2021. The survey’s findings are still in their early stages, but she released some of the data relating to Long Covid during the symposium last week.
A third of Long Covid patients who responded to the study said they experienced brain fog. Nearly 40 percent said they were fatigued. Around a quarter listed anxiety or weakness.
Long Covid has taken a toll on the mental health of patients in New Zealand, with around a third saying it had had a moderate to extreme impact on their anxiety or depression. This rate was slightly higher for Māori than for non-Māori.
Just under 30 percent of non-Māori and just over 20 percent of Māori said they experienced moderate to extreme pain as a result of their Long Covid symptoms.
A smaller percentage saw hits to their mobility and their basic ability to care for themselves.
The greatest impact came on the ability to carry out “usual activities”. Nearly half of Māori Long Covid patients and more than 40 percent of non-Māori said the condition has had a moderate to extreme effect on their “usual activities”.
“When we think about usual activities, what is that?” Jeffreys said.
“It’s going to work, it’s socialising, looking after your family. For many people, it’ll be simple things like going shopping, cleaning the house. Even if you can’t work, then being able to do those really basic things that are needed to continue to live some sort of functional life.”
Jeffreys has ME/CFS and knows the toll fatigue can take on a person. She mostly focuses on caring for her family and working when able. Socialising is a thing of the past for her.
“Having said that, I’m not as badly affected as many, many people. Within the ME community, we know what a lot [of effort] childcare is.”
Long Covid could have similar impacts and with so many new patients, at least some may struggle to care for their own families.
“That’s just absolutely horrific, the impact then on children is huge.”
Young people could also be hit hard, Jeffreys warned. She said she was already aware of university students who had had to drop out after coming down with Long Covid.
“We think about that in young people – clearly the impact on education and then subsequent employment, the impact on social life which for young people is huge – it’s just massive. That does really scare me.”
A struggling health system
Long Covid patients who seek care for their bewildering, ongoing symptoms will run into a system that doesn’t have the capacity to examine them or is ill-equipped to do so.
“We know that huge numbers of people can’t afford to see a GP when they need to. We know that to get a diagnosis, just making a comparison with ME/Chronic Fatigue Syndrome, you need many, many, many visits to rule out all these underlying things before a diagnosis will be arrived at,” Jeffreys said.
“So if we have these huge numbers of people who can’t afford to see the GP or who can’t access the GP for other reasons – not just money – and yet are living with these ongoing symptoms, we’re just going to have a huge untreated population.”
“We’ve got a big job ahead of us to reshape and get rid of old myths and all the rest of it so that people are taken seriously.”
Bryan Betty, the medical director of the College of GPs, said Long Covid poses a number of challenges for general practices.
“Most Long Covid will end up being treated in the general practice setting and the issue for me becomes, how is the system going to gear itself to support capacity within the system?” he told Newsroom.
“How do specialty services, which won’t be able to provide the care required for the numbers that are potentially being predicted, how are they going to integrate with community medical services and support services to ensure that those who do need assistance and care through the Long Covid journey get that care? That’s my real core concern here because we do have a system that’s working at capacity at the moment.”
Joe Bourne, a GP who works closely with the Ministry of Health, said that general practices are often under the pump but would find ways to stand up the necessary capacity.
“I’m not hearing – and this is informal but – I’m not hearing of general practices currently being overwhelmed by people coming through and seeking advice and help for Long Covid. It’s not happened yet, doesn’t mean it won’t happen in the future,” he said.
“If you go back over two years, three years, we didn’t have Covid as a condition to deal with and the health system flexed and has been able to provide people with access to the care that they need during this time. It’s not without consequence but over time we will adjust the way the system works to be able to deal with Covid in the way that we need to in the future and the rest of the stuff that we were doing before. I’d be confident that we’ll get there.”
Bourne said most people with symptoms that persist for three months will see their issues resolve without needing to engage with the health system.
Martin Chadwick, the ministry’s Chief Allied Health Professions Officer and the lead on the ministry’s Long Covid work programme, agreed.
“For the vast majority, they’re not necessarily going to be a draw on the health system. It’s one of those of, understanding that there will be an impact regardless, we don’t really have a full understanding of what that quantity will be, but that then means we need to be doing the preparatory work,” he said.
Jeffreys said it was disappointing to see the ministry just starting on this work.
“It feels like it’s coming a year too late. This has been on our horizon as researchers and interacting with patient groups for well over a year. I guess better late than never.”
Because the ministry doesn’t expect a surge in primary care demand from Long Covid patients, its efforts are targeted at educating GPs about the condition and funding new research.
New codes for Long Covid and other post-Covid symptoms will help the ministry understand how many people are suffering and provide doctors with extra information.
“The more we can get that good information into the hands of our GP colleagues and others, the better,” Chadwick said.
General practices are “a very, very large part of the health system,” Betty said.
“So one of the challenges that is going to be here is to make sure the messages or the information or the education about Long Covid is consistent, that it is effectively put across the sector so that we get a national approach to this and not a postcode lottery approach.”
A new Long Covid collective, bringing together patients, researchers and doctors to work on the issue, is also developing resources for the primary healthcare sector. Jeffreys has been involved in that work.
“We’re taking on some of that [education] role because we feel that the ministry has been a bit slow. We’ll be delighted if it really does happen, the ministry outputs, but everything is really slow when you’re talking about government,” she said.
Jeffreys’ study results show many patients found their doctors unable to help. For Māori sufferers of Long Covid, 18 percent said their doctors thought they might still be infectious due to the ongoing symptoms. Half of non-Māori and a third of Māori said their doctor didn’t recommend or provide wraparound support. Many couldn’t get referrals to a specialist or said their doctors didn’t know what the next steps might be.
This data was gathered for people who were infected last year. But it’s likely still happening, Jeffreys warned.
“What I’m hoping is that what we’re showing is something awful that was happening last year and things are changing. Having said that, if you engage with social media there are endless stories of that still happening. We need to be really clear in our messaging to GPs about what the evidence is showing.”
Brooks said this isn’t surprising, as post-viral conditions have long been dismissed by the medical community.
“Our doctors don’t get taught about post-viral conditions. Some doctors completely gaslight that it’s even an issue. We’ve got a big job ahead of us to reshape and get rid of old myths and all the rest of it so that people are taken seriously,” she said.
The current information vacuum has come about as a result of “large-scale neglect. Because post-viral conditions were wrongly pushed down the road as being psychosomatic and all in your head, it was neglected in research and medically. If you have those two things not aligning with your condition, then you’re in big trouble.”
All involved agreed that the best thing doctors could do was listen to their patients.
Chadwick said that was his biggest takeaway from the symposium last week.
“To acknowledge the impact that it’s having on people. It’s very real for people,” he said.
“The number one thing that people want is to be heard and to be acknowledged,” Jeffreys said.
“These are real symptoms which are leading to extreme levels of anxiety because people have no idea what’s going on, what the trajectory is, what’s going to happen next, what care might be available, whether they’ll ever get back to work again.”
A generation affected
Another key theme that cropped up multiple times during the symposium was the need for financial assistance for sufferers. It’s unclear how many will be unable to return to work or unable to work as much as they did prior to their infection, but the figure could be significant.
As it stands, there are relatively few options available to those with Long Covid. Crossan’s support group is putting together resources for patients to take to their employers. But ACC has declined to cover the condition if it can’t be proven that Covid-19 was caught in the workplace and Long Covid isn’t considered a disability eligible for government support.
“We need to accept ME and Long Covid as a disability as well, rather than a chronic condition,” Jeffreys said, echoing the comments of Disability Rights Commissioner Paula Tesoriero at the symposium. “Because again that’s all related to how GP visits are funded and what sort of WINZ support people can get.”
The Government hasn’t said much on financial assistance, with ministers merely indicating it was under review. Without that help, Long Covid could also further entrench existing health and socioeconomic inequities.
“In our study we’ve included a significant number of Māori and some of the stories are very, very similar to non-Māori but the impacts will be magnified by the preexisting social inequities that we know are pervasive,” Jeffreys said.
“Trying to understand what impact losing your job has when you’ve got no resources, when you’ve got no savings to fall back on, when you’re living in rental accomodation and you don’t pay your rent, then what happens? I think we need to be really serious about what kind of additional financial support we can think of for people who are financially affected.”
We still don’t know how long Long Covid symptoms might last. So far, two and a bit years into the pandemic, some of those infected at the very start are still experiencing disruption as a result of the illness. But even if it does taper off in time, the impacts are still immense.
“Even if it’s only a few years, a few years of someone’s life can make all the difference. If you lose your job, you might well lose your home. Certainly stories of relationship breakups, the impact on children then is massive,” Jeffreys said.
“I’m really, really worried about where this is going. If you make the comparisons with a number of different post-viral conditions, I think we will have a generation of people who are affected. The whole social and economic side, as well as the health side, is just an impact that we’re going to see, I’m afraid, for many, many years. I can’t really see how it can’t be as awful as a huge epidemic of extra chronic disease on top of existing illnesses.”