Long COVID
Online Support Tool
This support tool is a series of videos with downloadable information for everyone who has, or thinks they might have, Long COVID. It will also be useful for people who have other post viral illnesses like ME/CFS.
If you've already been diagnosed with Long COVID, we'll help you to further understand your illness and provide useful information and tips to help you manage and track your symptoms, work with your health provider and get the support you need to improve your quality of life. If you haven't yet been diagnosed but think you may have Long COVID this kete of videos can also help you review your symptoms and provide tips on how to discuss these with your doctor or health provider.
The downloadable information provides further information on topics and strategies we discuss, as well as symptom lists and tracking sheets to help you and your health provider.
ME Support has been working with people with ME/CFS for 10 years and these videos draw on this experience as well as the experiences of the experts and individuals we interviewed.
You'll hear from both the country's leading post-viral illness experts, as well as real New Zealanders living with Long COVID.
The full individual interviews with our five experts and seven lived experience participants are now available here.
These interviews offer more perspectives and information on research, being a parent of a child with ME/CFS, the impact on people and their whanau, along with tips for people with Long COVID on managing symptoms and the changes this illness causes.
About the Support Tool Videos
Each video's title and description show you what's covered, and time stamps will help you navigate to key topics within the videos. Click the CC button at the bottom of the video to get closed captions so you can read as you watch them. You can also listen like a podcast or download the transcript to read in your own time. We're working on getting each transcript translated into Te Reo Māori and will add these as they become available.
Video 1 - Introduction to the Long COVID Online Support Tool
Video 2 - What is Long COVID? Symptoms and Diagnosis
Video 3 - Related Conditions
Video 4 - POTS - Postural Orthostatic Tachycardia Syndrome
Video 5 - Pacing and the Energy System
Video 6 - Nutritional Management for Wellbeing
Video 7 - The Nervous System, Emotions and Stress
Video 8 - Sleep and Long COVID
Video 9 - Tamariki (Children) with Long COVID
Video 10 - Pain Management
Video 11 - Common Treatments
Video 12 - Working with your Doctor or Health Provider
Video 13 - Accessing Financial and Community Support
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"The reason why I did this interview is to help provide more real experience that people can listen to rather than read through in the early stages as cognitively its hard work whereas lying back resting and listening to a podcast of someone that you can relate to and their experience is hugely comforting you don't feel so alone."
Paula - Lived Experience
"Your health status does not make you immune to getting Long COVID and I think that's one of the things that has really alarmed people."
Dr Anna Brooks - Senior Lecturer and COVID researcher
"It's really to be aware that this isn't just deconditioning, it isn't just because you've been unwell for a couple of weeks."
Victoria Lai - Cardiorespiratory Physio and Lecturer
"Don't try to do it on your own, ask for help. Realising you need help and asking for it is a good thing."
Anna - Lived Experience
"This is not a cold this is not a flu, this is a virus that is really causing damage in a way that we can't see or often feel. You would never potentially think that you could go on to have this debilitating fatigue and brain fog, when you barely even notice that you had a virus."
Dr Anna Brooks - Senior Lecturer and COVID researcher
"We do know that Long COVID has really significant effects on people's ability to have any level of activity or at least the level of activity they were used to so we had lots of stories of people who previously used to be very high exercise or might participate in various sports and most of these people have to stop and that provided a challenge on a change of identity. I used to do this but now I can't."
Mona Jeffreys - Epidemiologist and ME/CFS sufferer
"The best strategy for me and it was a hard one to learn was to stop and rest and to accept that this is where I am right now and to find something in every day that gave me a sense of achievement or joy or connection either to nature or to another human being."
Janie - Lived Experience
"People understand you're tired but don't understand the full impact, as there isn't huge amount of research about it."
Piki - Lived Experience
"If you know someone with LC just a phone call or a call in for a 10 min coffee will make a big difference as it's a lonely experience - when spend days in bed in own brain - sharing thoughts with others makes a difference."
Russell - Lived Experience
This free kete has been created by ME Support, with the help of Te Whatu Ora and a number of Long COVID and ME/CFS experts in Aotearoa New Zealand.
ME Support is a charity whose mahi is to provide free support, advocacy and illness management information to people with ME/CFS and now Long COVID.
We exist to improve lives, and the lives of whanau and carers, by providing free, high-quality community-based support, not otherwise available through the public health system.
These videos wouldn't be possible without the amazing work of Howie, a company who specialise in creating quality marketing content and internal resources for businesses and organisations.
For more information visit:
https://www.youtube.com/channel/UC24U5eeVdw03LIksNcrA
Join ME Support for Free
Click here to become a free member of ME Support and gain access to the exclusive members resource area on our website (coming soon!), current illness management information and access to our online and face to face support groups.
You will also receive access to our online support groups and Auckland members have access to dedicated support through our Client Support Coordinators.