Covid "long haulers" suffer debilitating health problems months after catching the virus. But there is no test for long Covid, no definitive treatment and little financial help. With Omicron threatening to run loose in New Zealand, sufferers and researchers say more support is urgently needed.
Tristan Mercer feels like a "ghost" of his former self.
Two years ago - at age 23 - his life had been on a fast track.
Fresh out of university, he'd 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 the city in March 2020.
Mercer was struck down but told by health teams they had no room in hospital - he was young and fit and had to tough it out at home.
He recovered briefly, but nine months later was in the worst shape of his life.
Struggling with debilitating chronic fatigue, a racing heart, aches and stomach pains, he returned to New Zealand in March 2021.
Now home with his parents almost two years after his infection, he's unable to work and living on a $280 per week disability allowance.
Yet despite his experiences, his local GP needed more convincing.
"He looked me in the eye and said: 'I don't think you have had Covid'," Mercer said of his initial consultation.
It's a familiar story experienced by other Covid "long haulers" and highlights the battle they face finding the right medical and financial help.
Part of the problem is that long Covid is new and rare in a country that has so far escaped the worst of the pandemic.
There is also no test for long Covid, no definitive treatment and very little financial support.
Researchers aren't even sure how many people have it.
Yet long Covid can be debilitating to those suffering it.
"To be clear, long Covid is real," director general of health Dr Ashley Bloomfield said in a press conference late last year.
While most people recover completely from the virus, some report symptoms that can last for weeks, months and likely years.
Bloomfield cited a study, by the University of Oxford and Britain's National Institute for Health Research, that included more than 270,000 people and found 37 per cent of patients had at least one long-Covid symptom, diagnosed three to six months after infection.
They commonly include fatigue, shortness of breath, headaches, "brain fog" and anxiety.
The condition isn't restricted to the old, vulnerable or those badly sick during their initial infection.
Some with only mild or no initial symptoms are also reporting getting long Covid.
And with the highly contagious Omicron variant producing record daily infections overseas and now potentially in the New Zealand community, many more Kiwis could be at risk.
University of Auckland cellular immunologist Dr Anna Brooks said new research, treatments and financial support are urgently needed.
"This virus causes damage," said Brooks, who is studying the immune dysfunction experienced by Kiwi "long-haulers".
"Omicron spreads so far and wide that so many people get it; it's undoubtedly going to cause long Covid as well."
Mercer called it a form of Russian roulette.
"It is rare, but it is also important for people to know that it is a lottery – you don't know who it is going to happen to," he said.
"I was 23, had represented New Zealand in sport and was very fit."
'Like a zombie' – young and fit and battling long Covid
Mercer's flu symptoms started in London in March 2020 before worsening over the next eight days until he grew increasingly "hungry for air".
Feeling dreadful, he phoned British health teams.
"I called three or four times in the weekend and said, 'I honestly feel like I am going to die'".
But judging him lower risk, they simply told him "there is nothing we can do for you".
Mercer felt "awful" for the next three months, before briefly recovering and then deteriorating again and coming home to New Zealand.
He has experienced heart palpitations that keep him up all night and a brain fog that leaves him mentally drained.
Yet battling the debilitating fatigue has been hardest.
Stripped of the energy others takes for granted, life has been reduced to a kind of black and white and inability to feel pleasure, he said.
"You feel like a ghost, like a zombie," he said.
He's been on and off different drugs. One of the most effective has been one supposed to calm his body's immune response.
Other help has come from long Covid and ME/chronic fatigue syndrome support groups that have taught him to learn to pace his energy and not to exert too much so as to avoid being left bedridden afterwards.
And he's not alone in his experience.
Globe-trotting nanny Helena Power and then 31-year-old expat Luke MacLean-McMahon have both previously talked to the Herald about catching Covid in London and later battling long Covid.
Power had been nanny to a billionaire family in London but was forced to return home to New Zealand after feeling constantly fatigued.
She was later taken back to hospital in Auckland "gasping for air" five months after her initial infection.
MacLean-McMahon told how his heart was damaged by Covid and that nearly two years after catching the virus he still battles blackouts. One game of basketball with mates last year left him bedridden for four days afterwards.
Other cases are also starting to emerge among young Kiwis who caught the virus in New Zealand.
One 22-year-old, who didn't want to be named, caught the Delta variant in August last year by simply seemingly "walking past the wrong person" in Auckland's WestCity shopping centre.
Despite having only a sore throat and mild headache initially, he's since been crippled by fatigue.
Yet despite seeking help, he's been waiting weeks for an appointment with an occupational therapist and doesn't know where to turn for further medical or financial support.
Mercer said he understands the challenges the medical profession faces, including his own GP, who is a long-time family friend and who has worked hard ever since to find the right treatment.
"I want to have compassion for my doctor and the medical industry in general in that there is really no known treatment," he said.
"Doctors are very much like, if there is proof we can treat it."
Hunting for long Covid in New Zealand
"We have no real idea how many people have long Covid," epidemiologist Dr Mona Jeffreys says.
However, she hopes to answer that soon.
She and Victoria University of Wellington colleague Dr Lynne Russell (Ngāti Kahungunu, Rangitāne, Te Wainui ā Rua, Kai Tahu) are leading a Ministry of Health study on Covid and long Covid expected to launch at the end of this month.
They plan to survey and interview as many as possible of the about 8700 people aged over 16 who caught Covid in New Zealand before December 1.
The study should not only uncover who has got long Covid, but also map out its symptoms.
Research from overseas has found up to 200 long Covid symptoms, but there are a few prominent ones.
They include the debilitating fatigue that goes far beyond normal tiredness and leaves people exhausted for days.
There is the "brain fog" that often leaves people confused, unable to gather their thoughts and forgetful.
And there are symptoms that often don't get taken seriously, to the frustration of sufferers, such as a racing heart and shortness of breath that may in fact be caused by irregular immune responses.
Jeffreys, who suffers from ME/chronic fatigue syndrome, which is known to be brought on after some viral infections, said overseas estimates are that anything from 3 to 15 per cent of people with Covid end up with long Covid.
"To think those people may be put into a basket of we don't know how to treat you, don't know how to deal with you so therefore we're not going to do anything about it, to me is appalling," she said.
Her study aims to make recommendations to the Government by August about the cost of Covid to individuals, households and the health system.
It will also look at what kind of financial support can be given to those affected by Covid and long Covid and how access to healthcare can be kept affordable for all, especially those in disadvantaged communities.
Opening the purse strings
The Ministry of Health says the "long-term physiological and psychological effects of Covid-19 are not yet known".
With that in mind, it was setting up an expert advisory team to keep a close watch as "new evidence around long Covid continues to evolve around the globe", it said.
Its priority in the meantime was to give people recovering from Covid easy access to rehab services within their communities so they can "remain at home and optimise their independence and functioning".
The Ministry of Social Development's director of client service delivery Graham Allpress, meanwhile, said tens of thousands of Kiwis – including some with long Covid – are receiving support payments because they are prevented from working by a disability, injury or health condition.
The payments include the Jobseeker or Supported Living Payment for those given a medical certificate stating they are unable to work and the Disability Allowance for those with an injury or health condition lasting longer than six months.
The Accident Compensation Corporation has also paid out $128,182 (excluding GST) for 14 claims for work-related Covid-19 exposure – most to healthcare workers.
However, the ACC said it only pays compensation to people who caught Covid from their workplace, not to those who caught it elsewhere in the community.
No money left for research
But researchers and long Covid sufferers say the support doesn't go far enough.
Some hope to see long Covid clinics set up, like those in the UK, which combine a mix of health professionals, including specialists, doctors, occupational therapists and physiotherapists.
But University of Auckland cellular immunologist Brooks believes the most pressing need is money to fund biomedical research.
She has helped a number of long Covid sufferers, such as Mercer, who didn't get Covid tests in the early days of the pandemic prove they had the virus by seeking out leftover antibodies in their systems.
"But people don't simply want to be told, 'yes you've got long Covid'. We need answers, research into why it's happening, so we can treat it," Brooks said.
She has now signed up 160 long Covid sufferers in New Zealand and is looking to take blood samples to study whether they are suffering immune system dysregulation.
She said new research showed how the virus damaged blood cells.
"Blood vessels feed all our organs and so if your blood vessels get damaged then lots of different conditions can emerge," she said.
Yet despite excitement over the research, she's been so far unable to secure Government funding.
Brooks has instead had to rely on crowdfunding from long Covid support groups.
She said Omicron's imminent arrival had hastened the need for the research but also raised a new problem – the use of the word mild in relation to the virus.
"There is no mild form of hospitalisation, no mild form of long Covid," she said.
"It is always going to be a case of doing everything in your power to not get this virus."