Researcher shines light on neurological disorder with a dark history

University of Auckland PhD student Ben Scrivener is studying a potential breakthrough treatment for functional neurological disorder.

This month, Scrivener won a $260,000 Clinical Research Training Fellowship from the Health Research Council to shine a light on functional neurological disorder (FND) in Aotearoa.

Scrivener, from the Faculty of Medical and Health Sciences at Waipapa Taumata Rau, University of Auckland, says three people with FND have made extraordinary recoveries after being treated with a new combination of transcranial magnetic stimulation and specialised physiotherapy.

Transcranial magnetic stimulation is a non-invasive way to deliver a safe and painless magnetic pulse to the brain. This appears to offer a signal boost to the brain regions responsible for movement, and is followed up with education and specialist physiotherapy.

It is early days, but Scrivener hopes this small number of success stories might grow after he launches into his PhD research project in February next year.

“We’ve had three dramatic cases recently, where people have made rapid and sustained improvements from quite severe levels of disability.

“They have gone from being stuck in a wheelchair and unable to stand to getting up and walking within hours of the treatment and physiotherapy session.

“It needs a lot more research, so we don’t want to raise people’s hopes prematurely,” he says.

FND is a condition with a dark history - and many patients are still unable to access the care they need, Scrivener says.

People with FND present with problems such as loss of feeling, vision problems, the inability to move their arms or legs, and dissociative symptoms like seizures.

The causes of FND remain invisible on medical tests for neurological conditions – there is no damage or disease in the nervous system. However, it appears in people with FND, communication does not occur in the normal way between different regions of the brain.

“It was called hysteria by Hippocrates, which means an aberrant uterus and it was seen as a disorder of women… so it has roots in quite misogynistic ideas.

“More recently, FND has been called conversion disorder and psychogenic symptoms.

“People don’t understand it, because brain scans and imaging look clear. They can’t find a cause physically, so they misattribute it to psychological causes, whereas contemporary thinking is it’s a problem of brain network dysfunction,” he says.

Extremely little research has been carried out on the disorder in New Zealand, but internationally the prevalence is estimated at about 50 to 100 cases per 100,000 people. It can affect anyone of any age, but among younger people, women have a higher incidence.

“People with FND are a very vulnerable population, who have been very under-served throughout recent times.

“Many get no care and some report getting terrible care,” he says.

Without treatment, only about half of FND sufferers will recover. Scrivener says it’s tragic that people with FND sometimes suffer severe disabilities without getting treatment within the community, or through hospital or specialist care.

“The thing that excites me about working with people with FND is that of any neurological condition, this population has the most potential for recovery.

“They’ve got healthy brain hardware, they’ve just got an issue with their software, so we try to figure out how to reset their software.”

Scrivener’s research over the next three years will involve four elements. He will start with an epidemiological study of who is getting FND, when they were diagnosed, which parts of Aotearoa they live in, and what types of care they can access. He hopes to track trends over time using large datasets.

The second study will explore patients’ experiences of care for FND in New Zealand. He hopes to get at least 100 people with the disorder to complete a survey and at least 20 to discuss their experiences in interviews.

Thirdly, Scrivener will look at what clinicians are being taught about FND within tertiary institutions in New Zealand, and whether the curriculum content is equitable compared with other neurological conditions.

Finally, his research will focus on intervention for FND, using transcranial magnetic stimulation and integration, as a primer for physiotherapy.

Scrivener graduated as a physiotherapist in 2008 and has worked primarily in neurological rehabilitation. He completed a Master of Health Leadership at the University of Auckland in 2020 and has been involved in research on rehabilitation after stroke for the past six years. The 38-year-old has been a professional teaching fellow on the postgraduate stroke care programme for the past two years.

While working primarily with stroke patients, his research team, led by Professor Cathy Stinear, developed an approach that incorporates transcranial magnetic stimulation as a tool for FND diagnosis and treatment.

Scrivener is fired up by what he has seen so far – and he wants to inspire others to research FND and potential treatments.

“One of my goals is to build excitement about FND among clinicians and researchers. More people need to be excited about this disorder, so things get better,” he says.