Australians living with encephalitis, an inflammation of the brain that can lead to permanent brain injury, are offering hope to the rest of the nation as the long-term effects of the pandemic, including poor brain health, anxiety and other symptoms of long COVID, take hold.
Survivors of the often fatal 'code red' condition are putting out their own stories of resilience, kindness, and coping, as new research shows more than half of people who have had COVID-19 may be living with symptoms similar to brain injury, in the weeks or months following their infection.
According to Dr Ava Easton, Chief Executive of the international Encephalitis Society, at least 1.5 million Australians may be experiencing signs similar to those of brain injury in the weeks following COVID with around 150,00 experiencing ongoing or long COVID symptoms.
"Consumer research from the UK has found more than half of people post-pandemic have reported issues such as brain fog, fatigue, general malaise and apathy, all of which are classic signs of a brain injury.
"Survivors of encephalitis know these symptoms only too well. Cognitive problems, memory issues, changes in one's sense of self and challenges in returning to work and education, are some of the daily trials our members face," Dr Easton said.
"They also experience anxiety, hopelessness and sadness, which are becoming increasingly common as the broader community confronts the implications of an unanticipated, long and sustained pandemic."
While the recent figures are based on UK data, Australian Professor Tissa Wijeratne, Director of Neurology, The University of Melbourne, says Australian data is shaping up to tell the exact same story.
"We have as yet unpublished data which we'll be presenting at the upcoming International Congress of Neurological Epidemiology this March, that shows up to 90 per cent of Melburnians and between 40 to 50 per cent of Victorian healthcare workers may be living with at least one sign typically associated with brain injury.
"Brain fog is the most commonly reported long COVID or Post COVID-19 Neurological Syndrome (PCNS) symptom, along with fatigue, headaches, dizziness and anxiety," said Prof Wijeratne.
"As we mark World Encephalitis Day today, it's important to bring disorders of the brain into discussion.
"Our brain is the central processing unit of who we are. It decides and controls how we feel, how we perform and how we get on with our day-to-day lives. Any disorders of the brain, no matter how mild, can have a significant impact on our lives and we're seeing this more and more with long COVID."
Renowned Australia Sports Broadcaster and Encephalitis Society Australian Ambassador, Karen Tighe, who was diagnosed with herpes simplex encephalitis in March 2020, says encephalitis survivors are sharing some of their experiences to help support other Australians with the simple and profound human gift of hope.
"Those of us affected by encephalitis are doing things a little differently this year. Along with wanting to raise awareness of encephalitis, we're marking our own one-in-one-hundred year event – World Encephalitis Day for the first time serendipitously falls on 22 2 22 – by offering the broader community 22 tips on how to cope with associated symptoms resulting from long-COVID.
"After not being able to work at all following my encephalitis diagnosis, and having to face memory loss, persistent fatigue and the fear of not knowing if I was every going to be the same again, I've now been back in my role on the ABC's National Grandstand since last October," Karen said.
"However, this would not have been possible without the support, help and coping strategies that I received from other encephalitis survivors along the way."
With the pandemic having changed millions of lives, Dr Easton hopes Encephalitis Society's knowledge, research and resources can be drawn upon by all Australians with brain health concerns, their family members and their carers.
"The encephalitis community knows a thing or two about global pandemics having experienced encephalitis lethargica which spread around the world between 1915 and 1926," said Dr Easton.
"Many of those who survived back then endured an existence quite unimaginable to most people.
"In this day and age access to knowledge is quite different and we're very proud of our members who are making this World Encephalitis Day about the rest of their community," Dr Easton said.
Australian encephalitis survivors' 22 tips for brain health will be circulated via social media and are available at encephalitis.info/wed-22-tips.
Around 500,000 people globally are affected by encephalitis annually, equating to one person every minute. The illness leads to cognitive, physical or emotional difficulties including impaired memory, language problems, changes in decision making, planning and organisation, personality changes, anxiety, depression, mood swings, fatigue, weakness and epilepsy among others.
Encephalitis can be life-threatening, killing up to 30 per cent of those affected (mortality varies depending on cause) and leaving survivors with a legacy of difficulties. Typically caused by common viruses including the new coronavirus, flu, measles and herpes simplex (cold sore virus), bacterial infection and autoimmune diseases, encephalitis is a leading brain health concern, with a higher incidence than multiple sclerosis, motor neurone disease, bacterial meningitis and cerebral palsy in many countries.
While the severity and symptoms of encephalitis can vary, they include flu-like illness, headache, drowsiness, uncharacteristic behaviour, inability to speak or control movement and seizures.
