Key Points
- Nearly one in every two people with COVID-19 is at risk of developing post-COVID neurological symptoms
- The Australian Long COVID Facebook group has ballooned from 250 members to 3300 in the span of one year
- There is still a lot to learn about 'long COVID'
It has been a year since Victoria resident Ruth Newport first contracted COVID-19.
However, she says she is still unable to participate in her usual day-to-day activities, let alone walk more than 10 metres without assistance or needing to sit down.
“I still have a constant cough, debilitating fatigue and a long list of neurological, cardiovascular and gastroenterological symptoms that continue to significantly impact my daily life,” the mother-of-two tells SBS.
Before COVID, Ms Newport said she lived an active life and was the primary carer of her children, aged four and six years old.
“Now I cannot do any of those things without making my symptoms worse,” Ms Newport said.
Ms Newport has lived with Myalgic Encephalomyelitis (ME/CFS) and Fibromyalgia for over 20 years, but says these were mainly in remission and well managed – until COVID.
“All of my long-term chronic symptoms have gone from mild to severe,” she explains.
Ms Newport says she may have been in a high-risk category- for long COVID, but thousands around the country also suffer its debilitating effects without any prior conditions.
In fact, the Australian Long COVID Facebook group which she co-administers, has ballooned from 250 members to 3300 in the space of a year.
Miquette Abercrombie, from Rowville in Victoria, says her life from pre-COVID to now is “leaps and bounds apart".
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Neurological issues have been particularly difficult for Ms Abercrombie. Credit: Miquette Abercrombie
But now, a walking frame is required to go to the toilet or into the kitchen to make coffee, she says.
“No one could possibly understand nor accurately describe the impact on our lives. I have constant pain, constant memory/brain fog, and, some days, it’s hard just getting up,” she explains.
Ms Abercrombie says her neurological issues have been challenging.
“Every morning, I open my eyes and pray that today is the day that I can talk, walk and be better than the day before,” Ms Abercrombie said.
Senior neurologist and clinician scientist, Professor Tissa Wijeratne, from the University of Melbourne, says although there is still a lot more to learn, long COVID is “definitely real”.
Prof Wijeratne began investigating the long-term impact of COVID-19 in 2021 when he noticed patient groups popping up on social media, where almost 90 per cent of them were claiming lingering symptoms such as fatigue, headache, brain fog, and dizziness, to name just a few.
Noticing that they were “predominantly brain syndrome”, he now calls them post-COVID neurological symptoms (PCNS).
Of more than 665 million cases worldwide, nearly one in every two people with COVID-19 is at risk of developing PCNS, says Professor Wijeratne.
It is almost a pandemic within a pandemicProfessor Tissa Wijeratne (University of Melbourne)
Ms Newport says while people’s awareness of long COVID has grown compared to a year ago, their understanding is still minimal.
“I think amongst the public and even GPs, the understanding is shallow, and the information isn’t always accurate,“ she said.
Ms Abercrombie says her GP is sometimes “...at a loss and close to tears” with the extensive list of complications she now carries.
Although Professor Wijeratne agrees that the government is not doing enough in relation to PCNS, he says this is the “same fate” for all neurological disorders.
“We did not even have a definition of ‘brain health’ by the World Health Organisation until May last year,” he explains.
Professor Tissa Wijeratne says more resources are needed to support people with neurological disorders including post-COVID neurological symptoms (PCNS). Credit: PENNY STEPHENS/PENNY STEPHENS / WESTERN HEALTH
The best way to prevent PCNS is not to get infected with COVID-19 in the first place, he says.
Be up-to-date with your vaccinations, wear a mask when necessary, maintain personal hygiene and practise social distance, explains Professor Wijeratne.
If you get PCNS, don't do things that will worsen your symptoms, he says.
"Eat healthily, do not smoke or drink alcohol, exercise when you can, maintain a good social network, sleep well, and be nice, kind and compassionate to each other. These things promote good brain health," he said.
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