One in 10 people who've suffered serious sickness after becoming infected with Covid-19 will develop persistent symptoms such as struggling to breathe and extreme tiredness.
That's according to Physiotherapy New Zealand (PNZ) and backed up by another researcher spoken to by Herald.
Long Covid is commonly used to describe lingering and often serious symptoms that continue after a patient contracts the virus, which can have a significant impact on their daily lives.
Long Covid patient and advocate for other sufferers Jenene Crossan said she received regular calls and texts from long Covid patients in hospital saying their symptoms weren't believed and they felt powerless.
"They are beside themselves, and I've been there so I know what it's like, it's an awful and completely disempowering position to find yourself in," Crossan said.
The Herald understands Waitematā DHB is developing a medical clinic dedicated solely to caring for people with long Covid, with the hope other DHBs could model off it.
The DHB did not want to comment when approached by the Weekend Herald.
PNZ is calling on the Government to put more resource into caring for people suffering long-term effects of Covid-19.
PNZ's cardio-respiratory special interest group secretary Sarah Rhodes said the focus to date had rightly been on the pandemic and vaccinations, but now it was time to turn attention to long-term health issues linked to the virus.
"Many will develop symptoms common with other post-viral conditions like chronic fatigue syndrome [CFS]."
Patients commonly report being unable to manage simple daily tasks such as showering without being wiped out for the remainder of the day, she said.
"Those living with long Covid spend a large proportion of their time lying down, which leads to further deconditioning and weakness."
Rhodes said given the continued rise in serious Covid cases, and the expected increased number of people living with long Covid, new treatment and funding pathway were urgently needed.
"New Zealand has the opportunity to act decisively now to fund and introduce clear pathways of treatment like long Covid clinics," Rhodes said.
Auckland GP Jodie O'Sullivan, who has treated four long Covid patients, said they needed significant support.
"Like a health psychologist because their anxiety has increased because so many things have gone wrong with them since becoming infected with Covid that they start to overthink things ... because you don't trust your body anymore," O'Sullivan said.
Her long Covid patients' symptoms varied from issues with their gut, heart, fatigue, weakness and headaches.
"One of my patients was from India, got Covid and then developed insulin-dependent diabetes which was almost definitely related to the stress of Covid on his body."
Victoria University epidemiologist Mona Jeffreys said in the past a lot of doctors assumed it was a mental or emotional response to Covid and didn't believe it was real.
"I remember when Ashley Bloomfield came out saying, 'yes it's real' and that felt like a real breakthrough for lots of people."
She had suffered chronic fatigue and her personal experience was physiotherapists telling her to push, but she said research showed that was not the right approach.
"We don't know how long long Covid is going to last. If it's like ME [myalgic encephalomyelitis, also known as chronic fatigue syndrome] it could be forever."
In a statement, Health Minister Andrew Little said new evidence around long Covid continued to emerge and the Ministry of Health was monitoring global developments closely.
"The ministry is also establishing an expert advisory group around long Covid and what it might mean in the New Zealand context.
"Patients can have a range of symptoms and effects and how these are managed are clinical decisions. Ultimately, patients who are worried about the care they are receiving should raise this with their clinician, and if they're not happy then they can complain to the Health and Disability Commission."
Tristan's battle
Two years after becoming infected with Covid-19, Tristan Mercer still struggles with debilitating chronic fatigue, a racing heart and stomach pain.
He never expected this would be his fate.
At 23, he had already gone travelling, landed a dream sound engineer job in London and was set to represent New Zealand in the Ultimate Frisbee world championships.
Then, Covid-19 swept through the city in March 2020.
Mercer was struck down but told by health teams they had no room for him in hospital - he was young and fit and had to tough it out at home.
He recovered briefly, but nine months later still struggled to get out of bed.
Mercer said he tried to seek medical assistance but his GP didn't believe he had Covid.
"I think there are a lot of doctors that try to help but in general there is a real lack of understanding."
Now, two years on from when he was first infected with the virus, he's back home with his parents, unable to work and living on $280 per week disability allowance.
"The reason there is disbelief around it is because there is disbelief around chronic illness in and of itself. We need to change that," he said.
"It would be great if we had access to breathing therapies and medicine which isn't just prescribed painkillers, and for doctors to be open-minded and curious about the condition."