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A host of people are dealing with the post-pandemic syndrome known as Long Covid, but they're often mis-diagnosed, not diagnosed or denied access to help.
When people talk about 'Covid fatigue' they don't mean the symptoms from Long Covid, which include extreme exhaustion.
"They mean, 'I'm so sick of hearing about Covid' because we had these long lockdowns and it was really burdensome," says Newsroom senior political reporter Marc Daalder.
"And it was. But to some extent we've swung too far on the pendulum. And now we find ourselves unable to even acknowledge that things like Long Covid happen; that Covid is still a virus - 1000 people died from Covid last year, three times more than you'd have from the flu in an average year. Three times more than the road toll as well.
"You'd think that this would be a bigger issue, that people would talk about it more, in government and outside, but there's such a cultural kind of wanting to forget power and effect in place, that I think that contributes to just not wanting to acknowledge that it's real."
Today on The Detail, Daalder takes us through a new report on Long Covid, which is one of the few pieces of work being done in New Zealand in this area, and the first attempt to try and create a comprehensive registry of the people here who have not been able to shake off the pandemic.
He spoke to four sufferers - one of whom can't actually speak because she's lost her voice (that interview was done by email) - who are not only dealing with the effects of the pandemic but of a health system that doesn't seem to be able to adequately diagnose or treat them.
One of them, former Palmerston North city councillor Renee, can't walk any more.
"Since Covid, all I can do is sleep," she says. "That's quite hard to wrap my head around. And God knows how long this will last for."
She and many others involved in this research feel abandoned by authorities.
"No one seems to care or wants to know anything about this," she says.
"People are actually still dying from Covid, but no one seems to know about it. There are people who are as sick as I am throughout the country. There's lots of research and things happening overseas, but we don't care. Our government, right now, doesn't seem to care. There is no support available for anyone.
"It's disgusting."
Daalder says lots of us know people who just lost their sense of smell for a while and it took a long time to come back; or people who had some brain fog and fatigue issues after getting Covid, but recovered after a while.
"But there are people who've had a much more debilitating experience which lasts for a lot longer and the severity is a lot greater as well."
Studying it is difficult because the research funding for it has dried up significantly, and it's a complicated endeavour.
"The best we've got at the moment is this Long Covid Registry report," he says.
Getting a grasp on the number of sufferers out there is also a problem because this study was one where people self-enrolled, and would have missed others who did not take part.
"We know there are thousands, at least, of people who've had this much more serious experience, of Long Covid, but the specifics we won't know unless there's a serious effort to go out and find them, which would cost money."
One of the other issues is that women are much more likely to report that they have Long Covid - in the Long Covid Registry about three-quarters of the participants were women - and it's well-documented that women have a harder time getting listened to in the health system.
"Their pain and their issues are more likely to be dismissed by doctors and medical personnel," says Daalder.
"I'm sure that that's part of this whole difficulty in getting Long Covid to be recognised as a problem and as something that needs the attention that something that has this size of impact on this size of the population might otherwise receive.
"There's no treatment for Long Covid, but there are things that can treat people's symptoms," he says. They include physiotherapy for those experiencing pain and mobility issues.
Daalder says not only does that help people with the physical issues, but it also provides a sense of agency and knowledge that the health system has acknowledged the problem and is treating you.
"These are the ways you get people back to work as well," he says. "Ensuring that you are trying to treat what's going on with them rather than just saying, it's too hard, it's not important, there's not a lot of them... throwing up your hands and walking away."
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