Long Covid can linger for months or years after an infection - even a mild one. Photo: 123RF
Health advocates want employment protections and better medical guidance for people suffering from Long Covid.
At a symposium hosted by the University of Otago, Wellington on Thursday, experts and stakeholders gathered to discuss how to help maximise the opportunities to keep people safe at work, and ensure a safe return to work for employees who have acute Covid-19 or Long Covid.
Hayley Wolters first began to feel sick right as it was announced the country was going into lockdown, back in March 2020. Wolters said when the lockdown came into effect she was alone in her room trying desperately to breathe.
"I felt like my lungs were filled with thousands of crawling ants."
She said every time she laid down she couldn't get enough air, and she feared she would die if she fell asleep.
"I didn't call an ambulance because I knew that there was something really wrong with me, and I was absolutely terrified that if someone came into my house to try to help me that I would pass this thing on to them."
Wolters' Covid-19 symptoms persisted for the next 18 months. She said they included heart palpitations, crushing fatigue, chills and headaches.
Wolters said she was lucky to have a workplace that was supportive of her condition and allowed her to structure her time based on her symptoms.
"I was working at 3am some days, because that is when I was awake."
Wolters said modelling suggested about 400,000 people in New Zealand had Long Covid.
It showed there was a need for policy that protected workers going through debilitating Long Covid symptoms.
Founder of the New Zealand Long Covid Group, Freya Sawbridge, also caught the virus in March 2020.
"From the onset, my illness had a strong neurological impact - fevers, dizziness, raging, brain pulsations, memory decline and a total loss of smell and taste."
Over the next eight months, Sawbridge had many relapses. During the symposium she read an excerpt from that time.
"Four months have passed and I'm on to my fifth relapse. The room is eerily still, yet my mind spins like the stripes of a barber's pole.
"My brain pulsates and every vessel twists. Something is scraping the wrinkles in my brain, as if a mini person is going at it with a rake.
"The diarrhoea begins, followed by my chest tightness and back pain. I dart between shivering and overheating, different parts of my body are sporadically going numb."
Sawbridge said it was "without a doubt the most harrowing time of my life".
It was during this time that she began her advocacy and founded the Long Covid Group.
Freya Sawbridge. Photo: Supplied
Call for ACC revamp
Three years into the pandemic Sawbridge said the totality of the impacts of Long Covid were still not fully understood, but one of the obvious impacts was on the workforce.
"Many people suffering from Long Covid cannot work, but even those who can often need accommodations and flexibility for their disability."
Dr Dawn Duncan from the University of Otago Faculty of Law said the pandemic had highlighted how laws were outdated and not working for workers and employers.
"The gaps in the regime make it a lot harder for Long Covid sufferers, as well as for workers suffering from chronic health problems [triggered by the pandemic]."
Duncan said reforms needed to be made to the ACC scheme.
"We need an ACC scheme designed for the modern realities of work."
She said that included a system with more equitable outcomes and better coverage for people whose work involved mental health risks, burnout risks or exposure to infectious diseases.
But more understanding of the impacts of Long Covid is also needed.
Sawbridge said currently patients are often limited by their doctor's knowledge.
"They're often met with ignorance, as most professionals have never heard of Long Covid, let alone know any of the latest research on the disease. At worst, they're gaslit until their symptoms are caused by anxiety."
Professor Paula Lorgelly from the Faculty of Medical and Health Sciences at the University of Auckland said a register was to be developed for Long Covid patients.
It was expected it would provide a data hub where patients and medical professionals alike could better understand the extent of the condition.