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 says one of the advantages of this study is 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 says 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."

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 per cent 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 per cent reported they had used up their sick leave, whereas 65 percent have had to take time off work and 50 per cent reduce their work hours.

Seventy-two pe rcent were going to work despite being unwell.

Lorgelly says the study showed it's a debilitating condition, and the results were fairly similar to studies overseas.

She says it has results from 868 individuals so far, but not all participants have completed all modules.

She says the study has been designed in modules so participants who are experiencing symptoms such as fatigue and brain fog can fill it in when they were able.

Wide-ranging implications to MSD, ACC

Lorgelly hopes the Ministry of Health will 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's not just the Ministry of Health she thinks 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 says it can 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 says it also prompts conversation on what strategies are needed to ensure the individual, as well as those such as family or employers, are supported.

She was worried that a new government would treat Long Covid like a political football and people would not get the support they need.

"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."

-Krystal Gibbens/RNZ.