Coronavirus: Long COVID-19 sufferers call for more support as research project kicks off

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Research on COVID-19 antibodies and the effects of Long COVID is to be carried out by the Christchurch Heart Institute.

The team from Otago University's Christchurch campus will look at 3,000 New Zealanders to see if they have been exposed to COVID and have developed antibodies - and to what level. The aim is to find out how effective vaccines are at building those antibodies in our bodies, and to help us understand if COVID antibodies help protect - or damage - our hearts.

That's great but more research is needed, specifically on Long COVID, according to those suffering from the little-understood tail end of the virus.

About 250 of those sufferers are launching fundraising efforts to do their own research in conjunction with  University of Auckland immunologist Dr Anna Brooks.

Their front-woman, Jenene Crossan, says there's an urgency to do the work before everyone is fully vaccinated, to find out how much broader the problem is.

"If we're going to be ... getting people to the point where we can open the borders again, COVID's going to be coming in to our community, and if it comes into our community we will have break-through infections that lead to hospitalisations. And we will also have people who still get Long COVID.

"So we need to understand the implications of it, not just at an individual level but at a public health level. What's the burden that it's going to have on our system that's already under pressure? And further from there, what's the impact on a socio-economic basis? What's the impact on whānau? The vast majority of my people don't work anymore."

Crossan says she's a grand supporter of the way this government has handled the pandemic, but after 17-18 months of asking and pleading for help for the condition she's frustrated.

Sufferers "can't get ACC, they're not getting any kind of public health response, they're being ignored in the public health system, they're being pushed back saying 'we have no place for you, we don't know what to do with you', being gaslit. "We don't believe in Long COVID' - they're hearing that from GPs still.

"There's no pathway, there's no protocols, there's no official information about whether we should be getting the vaccines or not. There's a lot of 'yes we plan on... ' but not a lot of 'yes we're doing'."

Crossan talks to The Detail today about how the group is going out to help themselves.

Also on the podcast today, University of Auckland researcher Dr Victor Dieriks talks about the connections between Long COVID and his special area of interest, Parkinson's Disease.