FREE Long COVID Online Support Tool Launches For The Benefit Of All New Zealanders

People with Long COVID have been calling for more support and information for the past 2 years. On Wednesday 5th April not-for-profit organisation ME Support is launching a free Long COVID Online Support Tool. A comprehensive series of videos with supplementary information, featuring New Zealand post-viral experts and people with Long COVID Lived Experience. The tool is for any New Zealander who has, or thinks they might have, Long COVID along with their whanau or friends who want to learn more about the illness.

This is the ONLY comprehensive online tool with all information in one place in New Zealand and was created with funding from Te Whatu Ora - Health New Zealand.

The tool will be launched at mesupport.org.nz/longcovidhelp [KD1] [JP2] and its purpose is to help people to better understand their illness; get a diagnosis; manage their symptoms and energy levels; and access support; to improve their health and well-being.

“Diagnosed cases of Long COVID in New Zealand are growing, as the public and health system gains a better understanding of what Long COVID is,” explains Kate Duder, Manager and Vice President of ME Support. “It is estimated that 10-20% of everyone who had COVID-19 will experience Long COVID symptoms and some are very severe leaving them unable to work or carry out normal daily tasks.”

“The complexity of the illness has generated confusion, so it was important to bring together our 10 years of expertise managing post-viral illnesses, along with experts and New Zealanders with lived experience, to create a free resource of information all in one place, [KD3] [JP4] that anyone can access,” Kate continues. “This support tool will be vital to the health and well-being of tens of thousands of New Zealanders.”

Long COVID, as a post-viral illness, has a similar presentation of symptoms and very similar molecular signatures for immune dysregulation, inflammation, and energy production as Myalgic Encephalomyelitis.

Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (abbreviated to ME/CFS) is a chronic and debilitating illness whereby the key symptom is overwhelming fatigue, often triggered by even minimal exertion. Although post-exertional fatigue is the defining feature of this illness, ME/CFS presents a range of other symptoms, including cognitive impairment, orthostatic intolerance, sleep disturbances, headaches, muscle and joint pain, gastrointestinal upset, and anxiety and depression. ME/CFS, like Long COVID, can affect men, women and children of all ages, and any social and ethnic background. Both illnesses significantly affect a person’s ability to live a normal life, leaving some house or bedbound.

Since 2013, ME Support (formerly ME Auckland) has been providing vital support services for New Zealanders living with ME/CFS, and support for New Zealanders living with Long COVID since 2020. People with Long COVID and ME/CFS have often experienced stigma and misunderstanding that impacts people’s mental health and wellbeing access to services and leads to significant economic impacts.

ME Support will continue to work with others in the Long COVID community to ensure more people with Long COVID have access to the support they need. The full expert and lived experience interviews will be added to the Long COVID Support Tool in coming weeks. These interviews will raise further awareness of the condition and enable people to hear more from those on their journey with Long COVID and those taking on important research in this field.

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