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Long Covid sufferers receive support from the ME Community

Fuseworks Media
Fuseworks Media

Thursday 12th May, marks International ME Awareness or World ME Day with the theme #LearnFromME. It aims to highlight how people with Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome (ME/CFS) and experts have a huge wealth of knowledge that could help to improve the management of this disease across the world and provide insights into supporting those with Long Covid.

The effects of ME/CFS and recovery from ME/CFS have many similarities to that of Long Covid. 

Up to 80% of people with ME/CFS report an infectious trigger to their disease, and COVID-19 continues to cause a wave of new ME/CFS diagnoses, via Long Covid.

To recognise World ME Day, ME Auckland are conducting a series of #LearnFromME interviews highlighting the journeys of people with ME/CFS and Long Covid.

These video interviews will be launched on their website on 12th May.

The impact of COVID-19

It is estimated that 10% to 30% of individuals infected with Covid will experience Long Covid symptoms 2-3 months after infection. Even at 10% of the current total number of covid cases in

NZ this means that a massive 100,000 people here could suffer from Long Covid. If that percentage is up to 20 -30% the numbers are even more worrying.

Up to 30% of people with long covid may not be able to work and this places a huge economic burden on the country. We need to provide support that help people with Long Covid manage and improve their symptoms to enable their recovery and ME Auckland have the expertise for this.

Emeritus Professor Warren Tate says "The fact that ME/CFS is so functionally debilitating, and is life-long in most cases, puts huge social and financial burdens on those affected, their families and their communities, and blunts the potential of highly productive people to contribute value to our society"

LearnFromME Video Interviews ME Auckland’s video interviews highlight the lived experience of people with ME/CFS and Long Covid; and the normal lives these people give up, that others may take for granted. They offer insights into symptom management options, talk about the services that ME Auckland deliver and provide messages of hope.

Their aim is to raise awareness of the debilitating nature of these conditions and provide insights and personal experiences to those also battling these illnesses.

One of these videos is a personal interview with Jewel who has Long Covid and Alexandra who has ME/CFS.

Jewel picked up Covid in January 2020, when she travelled from NZ to the US for work. She travelled back to NZ and realised that she was not recovering from her symptoms, experiencing intense fatigue that didn’t improve with sleep and worsened after any activity, changing body pain, migraines and neurological issues. She likens it to her brain being like a desk top computer where suddenly a specific folder isn’t available, but may show up at another time. Jewel reached out to

ME Auckland for support due to the similarities in symptoms with ME/CFS. She says "ME has been around for a very long time and I look at Long Covid is just a subset of ME, because Long Covid is post viral fatigue. We just happen to know where our condition started"

Alexandra has had ME for over 15 years (although only diagnosed 2 years ago) which started after a combination of stressful experiences including losing her father, work and study burnouts, and bad viral infections. Over this time, as her ME worsened, she has had to give up the dreams she once had, a teaching career, and even part-time employment. She is now self-employed as a nail technician and works a tiny 6 hours a week from home, which allows her to connect with others and express her creativity. On a daily basis, Alexandra has to pace and plan her activities very carefully to not run out of energy - it’s like having a low battery all the time that doesn’t recharge. She experiences neurological problems - memory and concentration challenges known as ‘brain fog’, headaches, body pain, and food sensitivities. She is grateful for the advocacy support ME Auckland has provided when engaging with medical professionals, accessing help, and their online Facebook Support Group which allows connection and conversation with others with ME/CFS.

Getting the right information is crucial to effectively managing ME/CFS and Long Covid and there is a lot of misinformation out there! There is hope for people with Long Covid, the key to this is symptom management and ME Auckland’s expertise lie in this area, along with providing essential emotional support and connection. Currently no other charity in Auckland is providing support to people with Long-COVID. Given ME Auckland’s experience helping people manage symptoms and improve their quality of life, the charity is well placed to help.

For support reach out via

Emeritus Professor Warren Tate says "There is a history of much variety in the knowledge and understanding of ME/CFS among health practitioners that has impacted - often negatively - on patients’ care and support. There is a need for education in the medical schools to ensure all graduating doctors have a clear understanding of the illnesses and the physiological dysfunctions for both ME/CFS and Long COVID. Consistent evidence-based management of these conditions will ultimately benefit patients and make their lives better supported."

"I hope the greater international focus on long COVID means there will be more understanding given to New Zealand patients with long COVID, and that this will also extend to ME/CFS patients." 1

For anyone who would like to support the work of ME Auckland, donations can be made at"


Similarities between Long Covid and ME/CFS

Long Covid patients have similar symptoms to those of ME/CFS. These include:

fatigue that is not refreshed through sleep and rest  neurological challenges such as ‘brain fog’, poor memory and cognition problems dysautonomia, Orthostatic Intolerance or postural orthostatic tachycardia syndrome (POTS) headaches body pain ‘post exertional malaise’ - where fatigue and other symptoms worsen after any physical, emotional or mental exertion

Many people with Long Covid fit the diagnostic criteria for ME/CFS and in some cases patients have been diagnosed with both. Long Covid sufferers have also turned to the ME community for help due to the nature of the symptoms and the expertise this community has in managing these symptoms.

Angelique is 39 year old who had Covid-19 in the initial wave of Covid infections in the UK. Since then she has experienced debilitating Long Covid/ME like symptoms and while a doctor in the UK diagnosed her with Long-Covid, seeking support when she came back to New Zealand was a challenge and she turned to the ME/CFS community. She was referred to a specialist GP and then diagnosed with ME.

Emeritus Professor Warren Tate says "Long Covid and ME/CFS have very similar molecular signatures for proteins connected to  immune dysregulation, inflammation and energy production"

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