New Zealand COVID-19 long-haulers still suffering long-term effects a year on

Sunday marks one year since our very first COVID-19 case.

But while we count the growing numbers of new cases in the current cluster, there are some still grappling with the long-term effects of the virus a year on.

There is a group of around 200 Kiwis suffering what is known as 'Long COVID' - they call themselves the 'long-haulers'.

Common long-term symptoms include fatigue, breathing difficulties, chest pain, joint pain, heart palpitations, dizziness and brain fog, depression, anxiety, and hair loss.

A year after getting COVID, Freya Sawbridge still has chest pain and heart issues but says the little things are worst.

"You're not able to taste food and it's one of the biggest pleasures we have," she says.

"When you can't distinguish any flavour, you know, a tiramisu just tastes like a sweet sponge instead of all the coffee notes. A Thai soup just tastes like a salted broth instead of getting the lemongrass, the mint and the chilli."

And she says we take our sense of smell for granted.

"No smell, it's really devastating. We don't realise how much we use it, we pick up on people's pheromones and, is the milk off, do I smell today?"

For months she suffered debilitating symptoms.

"The chest pain, the heart palpitations, the dizziness, the tingling, your body's going numb in different parts and no-one can tell you anything, no-one can help you."

Now she describes herself as mostly recovered. She's just finished her bar exams and is managing to work one day a week. But it's been one hell of a year.

Just last week we passed our 2000 case milestone. While many feel better after a few weeks, for some symptoms can last much longer.

"They're now loosely saying either one in 10 or as much as one in three will suffer long-term consequences from having Long COVID," says University of Auckland immunologist Dr Anna Brooks.

A study of Wuhan patients out this week found 76 percent still suffered at least one symptom after six months - and women were more at risk. Age, health and severity of the initial illness are not a factor.

What's not known is why. It's something Dr Brooks wants to find out.

"There's been no trials, there's been no publications to say this is why people suffer long-term," she says.

"Research needs to be done so we can understand what we need to treat."

But first they need to identify all those who've had COVID.

Some early cases will have gone undiagnosed and many returnees coming back to New Zealand will have had it overseas.

And because we have few cases here, she says Long COVID could become a bigger issue than COVID-19 itself.

"Our numbers of Long COVID, and the prevalence may outstrip the official numbers of COVID," says Dr Brooks.

While the world is focused on deaths, case numbers and vaccines, the problem of Long COVID has been put on the backburner.

Long COVID has forced Jenene Crossan to completely change her life. She takes a myriad of supplements and monitors her blood and ketones daily, doing whatever she can to make herself feel better and prevent further relapses.

"The cough, the throat, the migraines, the headaches are horrific, the brain fog - I genuinely thought I had dementia, I couldn't move, I couldn't get anything going in my body, I was just a broken person."

Statistics say she's recovered, but she says she's far from it.

"No, I don't like the word recovered at all, I feel like it undermines so much of how people are experiencing Long COVID."

She says people with it need to be recognised and need help.

"That's going to have an impact on our health system, it's going to have an impact on budgets, it's going to have an impact on livelihoods and people and their mental health."

The cost of Long COVID is unknown but one study put long-term healthcare costs in the US at almost US$2.6 trillion (NZ$3.5 trillion), so research to find treatments is crucial.

University of Otago molecular biologist Emeritus Professor Warren Tate has spent 30 years studying ME and chronic fatigue syndrome and says many of those with Long COVID have similar symptoms.

He wants to see whether they have the same signatures in their blood.

"The theory and the belief is that some of the long haulers for COVID are suffering from a post-viral fatigue syndrome which has the potential to move into ME chronic fatigue syndrome," says Emeritus Prof Tate.

So just how long could Long COVID last?

"My view is that there's a good chance that some will recover," says Emeritus Prof Tate.

"But there's going to be a long journey for most of them I think."

The Ministry of Health is now seeking proposals for research to understand the impacts of Long COVID, but it's yet to say how much funding it'll provide and when it'll be available.

For those going through it, the answers can't come soon enough.