How does the Encephalitis Society support research?

Throughout Encephalitis Research Month, we will be talking about all things encephalitis research: why is research important, what the Encephalitis Society does to help research, as well as highlighting some of the key research figures and projects.

We fund the gaps in research into encephalitis and its consequences

We focused where there were gaps in research. Our funded projects have explored the range of neuropsychological outcomes and predictors of cognitive recovery after encephalitis. This is very important as detailed reports on specific neuropsychological outcomes and their characteristics over time are lacking. We know little about the impact of these outcomes on quality of life and what the most effective interventions in maximising people’s recovery are.

Some examples include:

The After-effects and Social Consequences of Encephalitis (2006-2008)

A study conducted with the University of York found that many people experience long-term consequences following encephalitis. The study included the SF-36 in the postal survey, which is a questionnaire asking about quality of life. The normal score in the healthy UK population is 50. For the SF-36 Physical Component Score, which looks at physical functioning to do with quality of life, respondents scored an average of 35. For the SF-36 Mental Component Score, which looks at emotional well-being, respondents scored an average of 40. Therefore, post-encephalitic respondents’ scores were much lower than 50, indicating that their quality of life was poorer than for the rest of the UK population. These results were also worse than some studies into other forms of acquired brain injury.

Atkin K, Stapley S, Easton A. No one listens to me, nobody believes me: self management and the experience of living with encephalitis. Soc Sci Med. 2010 Jul;71(2):386-393

Neuropsychological outcomes in herpes simplex encephalitis (HSE)

Cory Hooper, PhD student 2016-2023 / Jointly funded with the University of Liverpool

Herpes simplex virus encephalitis (HSE) is the most common cause of encephalitis in the western world with a mortality rate exceeding 70% without antiviral medication (acyclovir). Despite significant improvements in mortality rates, patients often have an acquired brain injury (ABI) which can result in severe neuropsychological deficits long after the acute phase of the illness. The project aims to present a comprehensive neuropsychological profile of patients with HSE, analyse the possible cognitive deficits, explore the relationship between neuropsychological outcomes and health-related quality of life and investigate neuroimaging and clinical correlates of long-term cognitive outcome.

*At the time of writing this report, the PhD is in its final stages and Cory is writing up the findings of the project.

Predictors of cognitive recovery in paediatric immune-mediated encephalitis

Charly Billaud, PhD student 2019-2023 / Joint funding with Aston University

Children with autoimmune encephalitis (AE) have specific clinical profiles. It was suggested that early brain lesions may alter long term development, which is a phenomenon reported in general paediatric brain injuries. Recent research has shown that after acute medical recovery, residual cognitive and behavioural deficits persisted in a substantial proportion of paediatric patients. Given the predominant findings linking AE to abnormal brain function activities this project aims at investigating predictors of long term deficits using magnetoencephalography, a sophisticated method which can localise functional brain activations with high temporal precision.

*At the time of writing this report Charly is in his final year.

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June is Encephalitis Research Month.

And to celebrate, The Big Give is offering to DOUBLE every donation we receive this month - so for every £1 that is donated, we will receive another £1 on top.

Any money raised will go towards our Encephalitis Research Month appeal and projects which support researchers around the world.

If you would like to double your donation to the Encephalitis Society, visit the Big Give website.

Double your Donation