As in the UK and the US, patients were needing to self-advocate, and often educate their doctors, if they were heard at all. Patients continued to experience difficulties accessing informed care, and 'medical gaslighting' (when a health professional dismisses or trivialises a person's health concerns).
"Currently there are no routine diagnostic tests that can be applied to this multi-system, complex chronic condition, which is why research is urgently needed to try and uncover mechanisms or biomarkers to help with long-term care," Dr Brooks said.
Many of New Zealand's "long haulers," or those presenting with long Covid symptoms, were infected at the beginning of the outbreak, and did not have access to the diagnostic Nasal swab/PCR testing, for various reasons. Antibody (serology) tests could detect historical infections, but not everyone would produce or retain detectable antibodies, especially a year or more out from their infection.
No studies had specifically investigated immune responses in non-recovered individuals, and therefore it was not yet known if antibody tests would reliably detect past infection in those probable long Covid cases. The most reliable antibody test was not widely available.
Dr Brooks wanted the government to acknowledge long Covid, report non-recovered cases, support those who had it, and support research to find answers.
"We should be supporting these efforts here in New Zealand, and give back internationally by leading the charge in researching mechanisms and treatment options for those still suffering, and providing all unconfirmed/probable cases a chance to be diagnosed," she said.
"New Zealand may have led the way by adopting a very successful elimination strategy to keep the virus out, but we are trailing far behind in how we are treating those most affected.
"Right now in New Zealand, all we have are online support groups. We have a NZ Long Haulers Facebook group where people can join, which is private, but I can also understand these avenues aren't for everyone. People who just want to stay connected, and have information disseminated when research opportunities or information comes to hand can send an email to LongCovidNZ@gmail.com
"Dr Robyn Whittaker and her team at the National Institute of Health and Innovation, Auckland University, have curated a webpage full of up-to-date resources about long Covid, for patients and GPs and other health professionals. What I would like to see is a page on our Ministry of Health or Unite Against Covid-19 websites, at least acknowledging that long Covid is a very real potential consequence of Covid-19 disease."
What is long Covid?
According to Emeritus Professor Warren Tate, from Otago University's Brain Health Research Centre, 'long Covid refers to the "large" group of people who have been infected with the coronavirus and have not recovered normal health after the expected recovery time. A sizeable proportion would be suffering post-viral fatigue, but others would have ongoing lung pathology, effects on the heart, and post-traumatic syndrome as a result of hospitalisation and emergency treatment.
Post-viral fatigue was a general term used when people did not recover within about two weeks after any viral infection (e.g. flu or glandular fever). It might take several months for 'flu'-type symptoms to resolve, or even longer. In a subset of cases, it could become an ongoing condition.
