Media release
June 2023
LIFELINE OFFERED FOR LONG COVID SUFFERERS
New Zealanders suffering from Long Covid now have a dedicated support tool with the launch of the Long Covid Support Aotearoa website – www.longcovidsupport.co.nz.
The site provides a single source of vetted global research, first-person accounts of what symptoms are like, and information and guidance about Long Covid.
It also hosts New Zealand’s first ever secure registry quantifying how many Kiwis are living with the condition.
Long Covid is a globally recognised new post-viral condition with more than 200 symptoms affecting every organ system. These include crippling fatigue, cognitive impairment, breathing difficulties, heart complications, muscle weakness, gastrointestinal problems, and neuralgia (nerve pain).
The multifactorial nature of Long Covid means patients are required to seek help from myriad doctors and specialists.
Globally, it is estimated that Long Covid affects around 20% of patients who recover from Covid-19 infections. A recent Harvard University report estimated the economic cost of Long Covid in the US to be over $US3.7 trillion (including lost earnings and medical care spending).
In New Zealand, however, there are no statistics.
Long Covid Support Aotearoa, a not-for-profit organisation led by a large group of patient volunteers, has collaborated with the University of Auckland to create the secure registry.
Aggregated information from this registry will provide New Zealand health providers with vital insights into the extent of the condition in Aotearoa and help establish better support for treating the debilitating illness.
“Covid-19 changed the course of history and while much of the world has moved on from the pandemic, millions of us have not been able to free ourselves from the ravages of this pandemic. Long Covid is a devastating condition. Yet there are no dedicated support services or treatment for the condition in New Zealand,” says the co-founders, Jenene Crossan and Freya Sawbridge of Long Covid Support Aotearoa.
“The Long Covid Support website provides a simple message to people suffering from Long Covid: ‘you are not alone’. It has been created by Long Covid patients for Long Covid patients, their whānau and support teams, and their employers, and provides invaluable information and pathways for patients to consider, treatments to try and advice to best heed.
“We encourage everyone who is suffering in silence to visit the site and add their details to the registry. All information recorded is confidential and private but will be invaluable to improve the way this condition is treated in New Zealand. We will not get dedicated funding or treatment opportunities until the Government has clear information about the number of New Zealanders who are suffering from Long Covid. The Ministry of Health and other agencies are relying on this registry to provide this information,” they say.
Together with the University of Auckland, Long Covid Support Aotearoa hopes to provide a preliminary report on Long Covid statistics towards the end of the year. This is just one of several research projects the group is collaborating on with New Zealand universities in a bid to learn more about Long Covid and improve treatment and health outcomes.
Visit www.longcovidsupport.co.nz.
For more information contact:
Jenene Crossan
Co-founder Long Covid Support Aotearoa
jenene@longcovidsupport.co.nz
Freya Sawbridge
Co-founder Long Covid Support Aotearoa
freya@longcovidsupport.co.nz