Long Covid sufferers and researchers are calling for urgent support and warning employers to start planning for the possibility that the virus could impact their workforce in ways they have not prepared for.
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'You just give up telling people because no one knows'
Evidence is mounting that some people suffer debilitating symptoms long after they've contracted Covid-19.
While one study here has received funding from the government, others have resorted to crowdfunding to fast-track answers patients desperately need.
And financial support is lacking for those unable to work their usual hours.
Daniel Lavender first got Covid-19 in 2020 while working overseas in Shanghai. He found out in an abrupt way through "a midnight phone call, with people banging on the door in hazmat suits, not speaking English and holding a translator up to me telling me that I had Covid, and I basically needed to get out of the country."
After returning to New Zealand he was made redundant, leaving him looking for work while battling symptoms of Long Covid.
"Just being incredibly tired, incredibly stressed. I'd have four instant coffees before I even feel partially alive in the morning..."
His applications for ACC and the unemployment benefit were unsuccessful. Making things more complicated was the lack of a test for Long Covid, making it difficult for patients to be heard.
"I tell them something and they just look at me starry-eyed and wait for me to finish what I'm saying. Whereas I'm telling them something and waiting for them to jump in and come up with a solution. You just give up telling people because no one knows."
Dr Anna Brooks is part of a team of international researchers investigating Long Covid and says it's real.
"We're calling on all health professionals and all employers to be understanding of this inability to have the magic blood test to tell you that you're experiencing this.
"These symptoms are very real. It's not something a good night's sleep is going to cure. You can't wish those symptoms away."
She says a scheme similar to the wage subsidy or isolation payment needs to be rolled out for Long Covid sufferers, or employers where full-time work may not be possible.
"There's going to be huge demand for this. There's going to be a huge demand for employees to return to their job.
"This does come back to a pandemic responsibility. How can we facilitate people getting back to work, and back to work safely?"
The Ministry of Social Development says someone who has Long Covid may be able to apply for Jobseeker Support or Supported Living Payment but there are criteria to be eligible.
ACC says to accept a work-related claim for Covid-19, it needs to be satisfied it came from workplace exposure and not community transmission.
But Dr Brooks says proving you got Covid from your workplace could be near impossible, and many patients are facing pushback at the doctor's office to even get the ball rolling when it comes to support.
"Being told that there's nothing wrong with you and there's nothing you can do... That's really distressing, because it perpetuates the ongoing problems by not being believed."
But business is equally stumped when it comes to Long Covid. With workplaces to returning to more regular operations when the orange traffic light turns on, chief executive of Business NZ Kirk Hope says the employers will do what they can but there is a lack of guidance.
"There isn't guidance around about Long Covid at the moment, but it's going to be something some employees and employers probably need to be mindful of. Particularly if you see people's sick leave balances dwindle as we get through Covid and when other forms of payment are removed.
Covid-19 Response Minister Chris Hipkins says they're still looking at the evidence.
"We obviously keep all of that under review. There is some support available already, but the evidence there is still emerging."
Marama Davidson Photo: RNZ / Samuel Rillstone
But Green Party co-leader Marama Davidson wants to see more done.
"We don't think it's fair that their lives should be made even worse because of something that is outside of their control.
"We've been really clear we want to see more support for workers, absolutely, and things like having to use up their own sick leave first and their own holiday leave for Long Covid leave, we don't think is going to lead to long-term good outcomes for anybody."
The Ministry of Health says they're establishing an advisory group on Long Covid, monitoring treatments and research gaps and updating evidence.
But there is no indication on when there will be answers.
In the meantime researchers like Dr Brooks are working as hard as they can with the funding they have.
"We're used to applying for grants but it just takes too long in the context of urgency when so many people are needing answers now.
"That's why we went crowdfunding because we're channelling the urgency of the patient voice.
"However we do know that we've got strong leads on being able to develop diagnostic testing so that's an area that could get urgent funding."