Interim results from New Zealand's Long Covid Registry show support measures are lacking and people are going to work while unwell.
The study, conducted in collaboration with Long Covid Support Aotearoa and the University of Auckland, with funding from the Ministry of Health, is the first quantitative research of New Zealanders with Long Covid.
Research lead Dr Paula Lorgelly said one of the advantages of this study was that it looked at cases of Long Covid from more recent Covid variants.
The study looked at a range of health and wellbeing factors experienced by Long Covid sufferers.
Quality of life was measured using the globally renowned EQ-5D questionnaire. Lorgelly said the mean score for participants before Covid was 0.88, fairly standard for New Zealanders.
"Now with Long Covid, they're reporting a mean score of 0.529. And that is similar to people who have severe cancer and severe MS," she said.
The study also surveyed the symptoms that those with Long Covid were experiencing.
"Individuals are reporting mostly experiencing fatigue, quite a lot of fatigue in the population, a lot of brain fog, loss of concentration, and a fair amount of kind of sleep disturbance and sleep issues."
About 45 percent of the sample said they had experienced a decline in their income and many were no longer able to manage a 40-hour working week. And 34 percent reported they had used up their sick leave, whereas 65 percent have had to take time off work and 50 percent reduce their work hours.
Seventy-two percent were going to work despite being unwell.
Lorgelly said the study showed it was a debilitating condition, and the results were fairly similar to studies overseas.
She said it had results from 868 individuals so far, but not all participants had completed all modules.
She said the study had been designed in modules so participants who were experiencing symptoms such as fatigue and brain fog could fill it in when they were able.
Wide-ranging implications to MSD, ACC
Lorgelly hoped the Ministry of Health would acknowledge that even with less severe waves of infection and a highly vaccinated population, it was a chronic condition and warranted the delivery of health services.
But it was not just the Ministry of Health she thought should take notice.
"[The Ministry of Business, Innovation and Employment] should be interested because it's going to have a huge productivity effect. [The Ministry of Social Development] should be interested because of the impact on benefits, etc."
Long Covid advocate Jenene Crossan said it could help transform policies for schemes such as Work and Income and ACC.
"There's no consistency in how that's working at the moment."
Crossan said it also prompted conversation on what strategies were needed to ensure the individual as well as those such as family or employers were supported.
She was worried that a new government would treat Long Covid like a political football and people would not get the support they needed.
"I'd want to hear pretty quickly from whoever the new Minister of Health is that they are acknowledging that it exists, acknowledging that it's something that needs to be considered and interested in looking at the research.
"The reality is, if this is the trajectory that we're on, which it feels like we are, we're going to end up with an enormous percentage of our population at some degree of suffering from Long Covid at any one time."