A Wellington woman who caught Covid-19 says she's struggling to have the virus' ongoing impacts on her body recognised as long Covid.
Stacey King told Breakfast 11 weeks after having the virus she has brain fog, fatigue, is in constant pain and has "ongoing neurological issues" with her hands and legs.
"I am yet to have it officially linked to the virus," she said, "although I woke up day 5 like this, unable to walk, and I haven't improved since."
Long Covid is characterised by a range of symptoms, including low energy, shortness of breath, a lingering cough, brain fog, low mood, joint pain, muscle weakness, a racing pulse, changes to taste and smell and poor sleep.
The condition was given a formal definition by the World Health Organization (WHO) in October last year.
It said then about 10 to 20% of people are affected by long Covid, where symptoms last for three months or more after a Covid-19 infection.
There is currently no test for long Covid, making it difficult for patients to be heard.
The Ministry of Health has announced more practical advice and guidance about a "rehabilitation framework" for long Covid was being developed by an expert advisory group.
After being hospitalised on day 13 of her infection, King said after a host of tests she was eventually left with a diagnosis of functional gait disorder.
She said the hospital attributed its onset to stress, but King insists it is down to having Covid.
"I just couldn't fathom how the two were completely unrelated. When I woke up on day 5 I was quite sick with the virus and they just said that the two were unrelated."
Brooks' research is tapping into the experiences of about 90 participants who are suffering ongoing effects of the virus.
The participants have provided blood samples pre and post-vaccination in an effort to learn more about the cause of long Covid.
Although post-viral conditions aren't new, she said a lack of urgency existed around research into long Covid, describing it as a "massive failing".
Brooks said there is an urgent need for research into the condition, so tests can be developed to validate people's symptoms.
"We don't have the tests to pick up that damage that's gone on within the body."
King said Brooks words ring true, telling Breakfast people like her need to be listened to and taken seriously.
Suffering, in constant pain, she said she feels like she cannot go anywhere and get answers.