A fit and healthy mum who caught COVID-19 back in March is now unable to walk.
Stacey King, 40, thought at first she had the usual cough, aches and pains, but then she woke up during her isolation period and everything had changed.
"On day five I woke up unable to walk."
The long COVID sufferer said catching the virus has flipped her life upside down and she is not active as she used to be.
"It's like walking through mud up to my knees. It takes me seven minutes to get up a flight of stairs."
Twelve weeks later, King's had to buy her own wheelchair to get around and was told she'd have to wait four months for a neurologist appointment.
After a four-day stint in hospital, she was diagnosed with functional neurological disorder (FND) but was told it was caused by stress and not related to COVID-19.
"I was absolutely floored. There seems to be trivialisation and a determination to disconnect from the virus as much as possible," King said.
A University of Otago Long COVID symposium was held on Wednesday. Convenor Dr Rob Griffiths said it's a real condition and important that people are believed.
"I think that people feel they're not being adequately believed, even gaslighted in some cases, and what we're hoping to do is to provide some explanation on what we believe is the nature of Long COVID."
The Ministry of Health's website lists neurological symptoms, including mobility impairment, as commonly reported symptoms of Long COVID.
Dr Anna Brooks, a Long COVID researcher at the University of Auckland, said it can affect someone's cardiovascular system.
"It basically affects our whole circulatory system, so our blood flow, and it's also inflaming or having some impact on our nervous system."
Dr Brooks is trying to develop a test that identifies those with Long COVID and said the answer is in the blood.
In the interim, she said patients need support. The Ministry of Health is still developing a plan.
Ministry of Health's Martin Chadwick told Newshub they are developing a Long COVID toolkit.
"Our first bit of work is that we're aiming to have it done around about August this year, so that's what we're working towards to make sure that we've got the toolkit developed so that we've got."
King just hopes she and others get the help they need to get back to normal life.