By Dr. Ava Easton and Dr. Thomas Pollak
Trigger warning: The following article describes research about suicidal ideation, suicidal attempts, and suicide. Some readers may find this distressing.
You think you are going mad, but in reality you have a life-threatening neurological condition that you and eight out of 10 other people around the world have never heard of. This is the experience for some patients affected by certain types of encephalitis, especially those triggered by autoimmune causes.
I am the Chief Executive of the Encephalitis Society, and Honorary Fellow in the Department of Clinical Infection, Microbiology and Immunology at the University of Liverpool; I have written this blog together with Dr Thomas Pollak, who is Clinical Lecturer and Honorary Consultant Neuropsychiatrist at King’s College London and the South London and Maudsley NHS Foundation Trust. I have specialised in outcomes for people affected by encephalitis and their quality of life for nearly 25 years. Since that time, I have seen much change in the condition, in levels of interest in it, and in our understanding. Yet, despite this, so much more needs to be done. And that is why World Encephalitis Day on the 22nd February each year is important.
Encephalitis and World Encephalitis Day
Since its launch in 2014, World Encephalitis Day has reached over 294 million people worldwide. If you are one of the eight out of 10 who don’t know what encephalitis is: encephalitis is inflammation of the brain caused either by infection (examples include Covid-19, measles, or the cold-sore virus) or by a person’s own immune system going wrong and attacking the brain in error (post-infectious or autoimmune encephalitis). It is an often-devastating neurological condition which can leave survivors with a permanent brain injury.
In many countries the condition has a higher incidence than motor neurone disease (MND/ALS), bacterial meningitis, and multiple sclerosis (MS) — disorders that many more people have heard about. Encephalitis affects one person every minute globally; yet, according to a YouGov Plc survey on behalf of the Encephalitis Society conducted in UK, USA, Germany, India, and Australia, 77% of people do not know what it is. This lack of awareness leads to delays in diagnosis, treatment, and poorer outcomes for patients.
Encephalitis is a thief. In the same way we have watched in recent months COVID-19 (and yes there have been over 1 million cases of encephalitis as a result of SARS-COV-2!) rob people of their lives and loved ones, encephalitis has quietly been at work for thousands of years, robbing families of their loved ones, and even in those families in which the person survives, it robs them of the person they once knew.
Encephalitis steals their capacity to remember as well as their personalities and the types of abilities we all generally take for granted: concentration, attention, thinking, judgement, inhibition. For many there are additional outcomes such as epilepsy and levels of fatigue so great that returning to work or education are mere pipe dreams. This is of course, when the person survives. Many don’t.
New Ground breaking research released…
Now, however, two new ground-breaking research papers, published for World Encephalitis Day, identify that encephalitis patients are also at a high risk of suicide and self-harm.
In one paper, up to 37.5% of survivors of the condition reported they had thought about or attempted suicide (4.4%). In a further paper, 12.5% of patients affected by an autoimmune form of the condition (anti-NMDA receptor encephalitis) had suicidal behaviours during early stages of the illness, with nearly half of the 12.5% of patients (6%) carrying out a suicide attempt.
The World Health Organization lists suicide as one of the top three (among five) causes of death among people aged 5–29, and a 2020 study in Denmark found that suicide rates in patients diagnosed with a neurological disorder were significantly higher (nearly double) that of people not diagnosed with a neurological disorder (44 per 100,000 person-years compared to 20.1 per 100,000 person-years). In encephalitis specifically, they found the suicide rate to be nearly double that of people without the diagnosis of a neurological disorder (39.7 per 100,000 person years).
Mental health issues, self-injurious thoughts, and suicidal behaviours following encephalitis may occur for a number of reasons: the direct biological effects on the brain during the early stages when people are very poorly; as a result of disease-related psychological or physical consequences or disability, leading to impaired self-image, limited social life, reduced financial security, dependency on others, pain, and substance use; or as an adverse effect of treatments given to help with the encephalitis itself or its consequences.
Psychiatric symptoms and syndromes have been far less investigated than neurological deficits and symptoms, particularly in autoimmune encephalitis patients, which means that these symptoms may likely be underdiagnosed in this patient group — but emerging evidence suggests that anxiety, depression, personality change, and post-traumatic stress symptoms are much more common than first thought. Thus, there is a need for more research addressing the breadth, nature, causes, and impacts of psychiatric symptoms in patients who have had encephalitis.
Stigma around talking about mental health can also be a real barrier to speaking up about symptoms too, but it is an important barrier to overcome, and we hope that by talking about mental health and encephalitis this World Encephalitis Day, we are one step closer to breaking down that barrier for patients affected (and their family members who incidentally can also have their mental health impacted).
Making a difference
As a result, this World Encephalitis Day, Wednesday 22nd February, the Encephalitis Society is calling for:
More awareness of the risk of mental health problems during and after encephalitis including suicide and self-harm, and encouraging all treating health professionals to ask about and risk assess for these issues during all stages of encephalitis — early hospitalisation, after discharge, during any relapses and even during so-called ‘recovery’;
Awareness that suicidality can be a common and serious manifestation of encephalitis; that swift diagnosis and treatment, along with careful risk assessment during encephalitis can reduce suicidal thoughts and behaviours in many cases (reducing patient death and disability).
Consideration of the potential in survivors of encephalitis for developing mental health problems later during their recovery and rehabilitation, and the negative effects that this can have on a survivor’s recovery journey.
Anyone affected by encephalitis and any associated mental health problems, including thoughts of suicide and self-harm, to know that symptoms are often highly treatable and help is available from the Encephalitis Society wherever they live in the world.
To help us shine a light on this important global topic, famous landmarks and buildings around the world have agreed to light up in red for World Encephalitis Day. Among many others pledges include Niagara Falls, the Jet D’Eau in Geneva, BBC Television Centre in London, The Optus Stadium in Perth, and the Dancing House in Prague.
Don’t be silent on this — you can get involved too if you like — we are urging people to wear red on the day, post selfies and use #Red4WED and #WorldEncephalitisDay on their social media. You can visit http://www.worldencephalitisday.org to find out more and get involved.
You can listen to Hannah’s story of being initially misdiagnosed here and the often thin line between neurology and psychiatry in conditions like encephalitis.
You can read Steve’s Story of LGI1 encephalitis.
Encephalitis Society is a multi-award-winning charity and the leading global resource providing support and information, raising awareness of the condition, and collaborating in research.