Australians are being urged to be encephalitis aware this World Encephalitis Day as the nation remains on high alert and at heightened risk of the devastating neurological condition from ongoing heavy rainfall and flooding.
Latest research, published today, shows survivors of encephalitis, an inflammation of the brain that can lead to permanent brain injury, are at a high risk of suicide and self-harm and have a high mental illness burden that can negatively impact their recovery.1
Two ground-breaking papers 'Mental health outcomes of encephalitis, an international web-based study' released by Encephalitis Society and King's College London, and 'Suicidal thoughts and behaviours in Anti-NMDAR Encephalitis: Psychopathological features and clinical outcomes' published in the Journal of Neuropsychiatry and Clinical Neurosciences, show almost five percent of encephalitis survivors surveyed (4.4 per cent), have attempted to take their life, and almost 40 per cent (37.5 per cent) have had suicidal thoughts.1 In those with autoimmune encephalitis, 12.5 per cent of patients had suicidal behaviours during early stages of the illness with nearly half (5.83 per cent) carrying out a suicide attempt.2
According to Dr Ava Easton, Chief Executive of the international charity, the Encephalitis Society, and one of the study authors, addressing the mental health impact is vital for ensuring encephalitis death rates and burden of disability are decreased.
"These impactful and important research papers raise awareness that suicidal behaviour is not uncommon and is a serious manifestation of encephalitis in the early stages of the illness, during relapses and perhaps later in a person's recovery journey.
"Our study found that psychiatric symptoms following encephalitis are common and highlight a need for increased provision of proactive psychiatric care for these patients and represent a call to action for increased research and mental health outcomes of encephalitis so that this patient group can be better supported," Dr Easton said.
The new research focused on all types of encephalitis including encephalitis following infection from common every-day viruses such as the COVID-19 virus, flu, measles, herpes simplex (cold sore virus), bacterial infection and autoimmune diseases.
Many Australian encephalitis survivors continue to suffer from various types of encephalitis, however, flood-related Japanese Encephalitis Virus (JEV) and Murray Valley Encephalitis (MVE) cases have recently been on the rise with JEV declared as a Communicable Disease Incident of National Significance since March 2022.3
As at January 5, 2023, there have been 45 human cases of JEV notified in Australia (from January 1, 2021), with 35 laboratory confirmed cases across New South Wales (14), Northern Territory (2), Queensland (2), South Australia (6) and Victoria (11), with seven deaths nationally.3
The Australian Capital Territory and Western Australia have not reported any JEV cases to date, however, continue to monitor the situation closely.4,5. The risk of JEV in Tasmania is currently assessed as very low.6
The King's College study involved 445 respondents from 31 countries and also highlighted 53.3 per cent of survivors reported poor access to mental healthcare, 47.2 per cent reported initial misdiagnosis of psychiatric or physical illness (18.2 and 66.0 per cent respectively) and 78.5 per cent reported an ongoing hypersensitivity that further impacted their mental health following encephalitis.
"There is clearly a need for increased provision of mental health care for encephalitis survivors and as we mark World Encephalitis Day today, it's important to not only bring encephalitis but also its associated mental health impact into discussion," Dr Easton said.
"Mental health issues, self-injurious thoughts and suicidal behaviours following encephalitis may occur for a number of reasons, including the direct biological effects on the brain during the early stages of encephalitis, the physical or psychological consequences of resulting disability, impaired self-image, limited social life, reduced financial security, dependency on others, pain, substance use or as an adverse effect of treatment.
"We want anyone affected by encephalitis and mental health problems, including thoughts of suicide and self-harm, to know that symptoms are often highly treatable and help and support are available from the Encephalitis Society wherever they live in the world," said Dr Easton.
"World Encephalitis Day is a focal point for our Australian community who have been affected or impacted by encephalitis. On this very important day we want to project unity, common ground and offer support while we raise awareness."
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). Globally, 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.
In order to shine a light on encephalitis, famous landmarks and buildings around the world will light up in red for World Encephalitis Day. More than 40 buildings will light up in Australia including The National Carillon, Canberra, Sydney Olympic Park Precinct, Sydney, Melbourne Town Hall, Federation Square and Bolte Bridge, Melbourne, Perth Concert Hall, Optus Stadium, Perth Council House, Perth, the Story and Victoria Bridges and Reddacliff Sculptures, Brisbane, and, The Adelaide Oval, Riverbank Footbridge and the Orb Adelaide Entertainment Centre, Adelaide.
A full list of buildings going #Red4WED globally can be found at https://www.encephalitis.info/wed-landmark.
