World-first program examining eating disorders brings hope for patients and families

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Emma Moore calls anorexia nervosa “the terrorist”.

It arrived silently and unannounced almost seven years ago, robbing her funny, kind and intelligent daughter, Lexie, who was then 14, of her teenage years, and upending her family’s world.

Emma Moore has cared for her daughter, Lexie, who has had anorexia for seven years.Credit: Eddie Jim

“The absolute horror this disease unleashes leaves you desperately searching for an answer or something to put a pause on your child’s trajectory towards death,” Moore said.

“But what really struck me was, here was this colossally dangerous and devastating illness, yet everything we were finding out about research and treatment seemed so out of date.”

More than 1 million Australians are estimated to be living with an eating disorder. In the past three years, the number of children and young people diagnosed with an eating disorder has soared.

Anorexia nervosa has the highest mortality rate of any psychiatric illness. Ten to 20 per cent of people with anorexia die.

But there is new hope for people suffering from severe treatment-resistant anorexia nervosa, as a pioneering eating disorder research program is opening at Monash University’s HER Centre Australia, in Melbourne.

The centre’s director, psychiatrist Professor Jayashri Kulkarni, said the program would be a world-first combining neurological clinical trials – such as brain stimulation, hormone therapy and new treatments – alongside research targeting the biological causes that underpin eating disorders.

“Over the past 60 years, there has not been any real change in treatments for eating disorders,” Kulkarni said. “The field has to move forward. Treatment innovations are desperately needed.”

In Victoria, children as young as eight are diagnosed with eating disorders, amid higher levels of emotional distress that rose during the pandemic. Families of gravely ill children say they are being failed by inadequate treatment and support and turned away from hospitals until it is too late.

The first signs of Lexie’s disordered eating were subtle. Without announcing it, Lexie reduced her sugar and carb intake, increased her exercise, stopped eating at school and ate meals and dinner at home with her family. Then one night, she refused to eat.

“There was a multiplicity of things that led to that horrendous moment,” Moore said. “By then, it was already out of control.”

Over the next few years, Lexie was admitted to hospital almost a dozen times as her heart and organs started failing.

Moore said her daughter was often left traumatised by her experiences in health services, which included being chased and held down by security guards so nasal-gastric feeding tubes could be pushed into her nose.

“During that time Lexie went from being someone that I think we could have helped to someone that was almost unreachable,” Moore said.

Kulkarni said her centre’s first trial would use transcranial magnetic stimulation treatment for people with severe anorexia.

The treatment has long been used for major depression and there are early signs it may be able to alter neurocircuitry in anorexia nervosa patients, by alleviating disorder-specific behaviours when focused on the part brain associated with the psychiatric disorder.

The trial will be led by Monash University’s Dr Leo Chen, who is writing a new paradigm for anorexia nervosa treatment with researchers at Harvard University.

“Something has changed in the brain that has led an individual with anorexia nervosa to be able to override what is an essential and fundamental human drive needed to exist and to survive,” Kulkarni said. “This is pretty powerful stuff. We are really trying to understand how we can reverse it.”

Professor Jayashri Kulkarni is the director of Monash University’s HER Centre Australia.Credit: Justin McManus

There are also plans for a treatment trial using estrogen for anorexia patients, targeting physical symptoms such as bone density loss, and brain functioning.

Kulkarni said treatment for complex eating disorders had too long focused on talking therapies such as psychotherapy, which while important in treatment, had stalled advancements in understanding the biology of the illnesses.

“This program won’t be a silver bullet for eating disorders, which are notoriously difficult to treat,” Kulkarni said.

“What I’m concerned about is that at the moment it [psychotherapy] is the main and pretty much only option. We want to combine biology with the psychology for a holistic model of care.”

Lexie spent more than a year in Stockholm under 24/7 in-patient specialist care. Last year, after hitting rock bottom, she spent five months at Wandi Nerida treatment facility, run by the Butterfly Foundation, on Queensland’s Sunshine Coast, where she received 24-hour, holistic, integrated intensive therapeutic and psychiatric care.

Lexie is now 21 and starting recovery. She and her family hope that research into understanding the biological causes underpinning eating disorders could eventually prevent other young people from going through what she did.

Moore said despite the high mortality and a national spike in eating disorders, there remained no nationwide community health prevention campaign like there was for other deadly conditions such as skin cancer.

‘We should be doing everything in terms of prevention, treatment and research we can so no one else has to go through this absolute hell.’

“Where the system is so utterly failing now is that people who are suffering are sometimes given outdated treatment options with appalling outcomes for eating disorders because we haven’t invested in the right research or treatments,” Moore said.

“We desperately need to develop better models of care and intervention. We’re talking about children’s lives here and ripple effects on their families and others is devastating.

“We should be doing everything in terms of prevention, treatment and research we can so no one else has to go through this absolute hell.”

Psychologist Chris Fowler from the Butterfly Foundation, a national charity supporting people with eating disorders, said when treatment was delivered by skilled health professionals, about 72 per cent of people fully recovered.

“The current evidence-based treatments may not be suitable for every individual experiencing an eating disorder,” said Fowler, the clinical lead of the charity’s national helpline.

He said the foundation welcomed research into innovative treatment options conducted in an ethical and safe way, but added there had to be adequate funding for existing treatment options including increasing co-ordination between mental and physical healthcare and nutritional support.

The Li Transformative Hub for Research in Eating Disorders will open at the HER Centre, next door to The Alfred hospital, on Sunday.

Crisis support is available from Lifeline on 13 11 14.

For support with an eating disorder call Butterfly’s National Helpline on 1800 ED HOPE (1800 33 4673). To chat online or for email [email protected] | Confidential and free support is available 7 days a week, 8am-midnight (AEST).

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