A type of encephalitis which was highlighted in the film and best-selling memoir Brain on Fire might now be diagnosed and treated much earlier, thanks to a breakthrough research study which has the potential to save lives.

The Oxford Autoimmune Neurology Group at the University of Oxford has identified key differences in the symptoms of patients with NMDAR-antibody encephalitis and those who have other mental health issues. 

It means clinicians, especially psychiatrists, will now be able to more quickly and accurately diagnose and treat patients who have this type of encephalitis.

Their research was published in the Lancet Psychiatry.

The devastating impact that NMDAR-antibody encephalitis can have was brought to life by Susannah Cahalan in her book, Brain on Fire, and the film of the same name, starring Chloe Grace Moretz. 

Susannah writes about how her behaviour became unusually erratic when she fell ill. She suffered seizures with doctors later prescribing anti-psychotic medications and suggesting she was possibly suffering from schizophrenia – until she was correctly diagnosed.

Dr Ava Easton, Chief Executive of the Encephalitis Society, said:

“This research study will mean the world to many of our members and their families who know first-hand the devastation that a diagnosis of NMDAR-antibody encephalitis can have.

“Patients can now have a quicker diagnosis, quicker treatment and therefore the potential for a better outcome. It truly is ground-breaking research which has the potential to save lives and reduce disability.”

The research team – led by Associate Professor Sarosh Irani, a member of our Scientific Advisory Panel – looked at 464 patients during their study.

He said: “Patients who fall ill with NMDAR-antibody encephalitis typically present with psychiatric features, often before any neurological features appear.

“This means that sometimes patients can enter and continue down traditional psychiatric pathways in mental health settings.

“These settings are obviously less suitable for the care of patients with encephalitis and it also means a lower chance of a lumbar puncture being performed, which is an essential part of the diagnosis of any encephalitis.”

“This can mean that patients do not receive the treatment they need sufficiently promptly: immunotherapies (steroids, IVIg, PLEX, and 2nd line therapies such as Rituximab and Cyclophosphamide).”

He added: “We found that unlike traditional psychiatric presentations which typically manifest with a single set of features [i.e. mood disorder or psychosis], patients with NMDAR-antibody encephalitis presented with a complex co-existing combination of diagnoses, most commonly a mix of mood, psychosis, behavioural, sleep and catatonia. Therefore, their psychiatric profile appears different to most primary psychiatric illnesses.”

“In addition, the clinical presentation of these patients is important: NMDAR-antibody encephalitis often develops over days to weeks, rather than months and years in other serious mental-health illnesses. Seizures, movement disorders and reduced consciousness may occur, however, typically these are observed later on in the disease pathway.”

Some Keypoints of the study from our perspective: 

• Psychiatrists could more quickly and accurately identify NMDAR-antibody encephalitis patients among their existing psychiatric populations.
• Only clinically-selected patients should receive CSF and serum testing. This aims to avoid conducting often-invasive unnecessary tests in large psychiatric patient groups.
• NMDAR-antibody encephalitis patients will receive quicker diagnosis and treatment, to reduce death rates among NMDAR-antibody encephalitis patients as well as lessen the likelihood of lasting disability such as injury to the brain.
• NMDAR-antibody encephalitis patients will avoid the potential to be given unnecessary psychotropic medication and other interventions [i.e. ECT] which in themselves may have harmful consequences [e.g. neuroleptic malignant syndrome].
• Clinical mismanagement relating to inappropriate treatments and unsuitable care-settings, can be reduced.
• Urgent conversations must be had between neurological and psychiatric communities in order to identify the best way to select and test these NMDAR-antibody encephalitis patients.

Read the blog from the Oxford Autoimmune Neurology Group