1.2 million Australians living with eating disorders, a leading psychiatric cause of death

28 October, 2022

New national research centre to transform diagnosis and treatment, starting with perfectionism, genetics, trauma links, magic mushrooms and more

Launch: 9.15am Friday, 28 October 2022
At the Charles Perkins Centre, The University of Sydney, with patient advocates

The Australian Eating Disorders Research and Translation Centre to be officially opened by the Federal Government today in Sydney with $13 million grant
More than 1.2 million Australians are living with an eating disorder.
Eating disorders are serious, complex mental illnesses with significant physical and mental health impacts, high mortality rates and low rates of detection.
The new Centre aims to transform how we support, treat, and even cure people with eating disorders
Nine IgnitED research start-up grants to be announced by NSW government. More below.

More than 1.2 million Australians are living with an eating disorder but less than a quarter receive evidence-based treatment. Eating disorders are a leading psychiatric cause of death, and have a profound impact on families and communities, but early signs are often missed.

“Eating disorders not only have one of the highest mortality rate among the mental illnesses, they also have low rates of early detection,” said Australian Eating Disorders Research and Translation Centre Director Associate Professor Sarah Maguire. “And as a result of very low levels of investment in research there hasn’t been a major therapeutic breakthrough in treatment for nearly 30 years. We need to change that.”

“The Australian government is investing $13 million in the Centre which aims to transform how we support, treat, and even cure people with eating disorders,” said Associate Professor Maguire.

“Eating disorders are complex and the Albanese Government is determined to change the way we approach them, so we can make sure all Australians have the care and support they need,” said Assistant Minister for Mental Health and Suicide Prevention, Emma McBride.

“The Australian Eating Disorders Research and Translation Centre will prioritise lived and living experience and translate research into action.”

The Centre will be led by Inside Out Institute for Eating Disorders, an initiative of The University of Sydney and the NSW government’s Sydney Local Health District, in partnership with a national consortium including lead partner Orygen.

“Our initial research priorities will include exploring risk and protective factors, opportunities for very early detection and intervention and innovative approaches to individualised medicine,” said Associate Professor Maguire.

Nine $25,000 start-up grants were announced at the official opening by NSW Minister for Women, Regional Health, and Mental Health Bronnie Taylor, supported by funding from the NSW government.

“IgnitED research grants, with the support of the national centre, will enable the next generation of eating disorder researchers to work in a co-design process with lived experience experts to bring their idea to life and to translate research to good practice,” said NSW Minister for Mental Health Bronnie Taylor.

The nine projects include:

Could psilocybin help free people from the destructive and rigid thoughts they have about their body, which are central to eating disorders, led by Melbourne clinical psychologist Claire Finkelstein
Rethinking perfectionism, a parent-led cognitive behavioural therapy program to support their children living with eating disorders, led by Curtin University researcher Jamie Neal, in Perth
Screening for eating disorders before and after pregnancy, led by Honorary Associate Professor Grace Branjerdporn at Queensland Health
The role of genetics in extreme and potentially life-threatening picky eating (ARFID) led by Dr Morgan Sidari from QIMR Berghofer in Brisbane
Treating the trauma that underpins many eating disorders, led by Dr Phil Aouad from InsideOut and the University of Sydney
And projects at UWA, Queensland Health, The University of Melbourne, LaTrobe University, and the Royal Brisbane and Women’s Hospital. Full details online.

The Centre’s focus on inclusivity will ensure lived experience expertise is embedded into research and the translation of that research into treatment.

“As a contributor and consortium member to The Australian Eating Disorders Research and Translation Centre; I have also lived with and survived a severe and enduring eating disorder”, said Shannon Calvert from Perth, the Centre’s Lived Experience Co-Production, Co-Lead.

“People with lived and living experience need to be included and involved throughout the research process; these collaborations can significantly change how research outcomes impact all those involved and the broader community.”

Australia’s first Aboriginal and Torres Strait Islander Eating Disorder Research Strategy will also be created in co-design with community.

“There is an urgent need for research into the experience of eating disorders among Aboriginal and Torres Strait Islander peoples,” said mental health advocate Leilani Darwin, a Quandamooka woman who will co-lead the Aboriginal and Torres Strait Islander Co-Production of the national centre. “The studies we do have, show that First Nations Peoples are at greater risk than other Australians, but the causes and issues need to be explored with community,” she said.

The Centre is the culmination of years of advocacy from InsideOut Institute who is leading with partners Orygen and The University of Sydney’s Brain and Mind Centre, and a national consortium including First Nations Co, ANU, La Trobe University, Deakin University, Monash University, the Turner Institute, University of WA, QIMR Berghofer, and the University of Queensland Institute for Molecular Bioscience.

For pictures and more information on embargo, visit scienceinpublic.com.au
For interviews, Niall Byrne, 0417-131-977, niall@scienceinpublic.com.au

We encourage reporting about lived experience of an eating disorder, but please be mindful in how it is portrayed. Be careful not to: Mention specific weights, measurements, weight loss, quantities.Detail specific behavioursPost images of people with extreme body weights or before/after picturesGlamourise eating disorders.Use the terms sufferer, patient, anorexic or bulimic to describe someone with an eating disorder, instead use “person with an eating disorder”. More information about reporting and portrayal of eating disorders here: https://insideoutinstitute.org.au/assets/nedc-mindframe-reporting-guidelines.pdf

Support available:
If you are experiencing distress and need support, you can contact:
The Butterfly National Helpline 1800 ED HOPE (1800 33 4673)

Lifeline 13 11 14

Beyond Blue:1300 22 46 36.
Suicide Callback Service: 1300 659 467
MensLine Australia: 1300 789 978
Kids Helpline: 1800 551 800
Headspace: 1800 650 890
ReachOut: au.reachout.com

Background

The aims of the Australian Eating Disorders Research and Translation Centre

The Australian Eating Disorders Research and Translation Centre will coordinate a national approach to eating disorder research and translate findings into practice, with the goal of reducing the burden on Australians living with an eating disorder and their loved ones.

The Centre aims to:

Establish a robust, well governed, co-produced, inclusive, and sustainable national research and translation leadership for the field of eating disorders
Improve access to high-quality mental health care for people with eating disorders and their families
Implement the Australian Eating Disorders Research and Translation Strategy (2021–2031)
Conduct and coordinate high-quality research and translation that impacts outcomes and addresses Australia’s Top 10 eating disorder research and translation priorities
Produce research and translation outcomes grounded in real world settings that inform policy and lead to practice change
Set the national standard for co-production with experts by lived experience, Aboriginal and Torres Strait Islander people, people from diverse backgrounds and clinicians as part of routine practice in research and its translation
Support and generate an inclusive and sustainable culture of research excellence.

Our partners include:

InsideOut Institute – Lead Agency
Orygen – Key Partner
Brain and Mind Institute – Key Partner
Australian National University
Deakin University
Latrobe University
Monash University – Turner Institute & Biomedicine Discovery Institute
QIMR Berghofer Medical Research Institute
University of Queensland Institute for Molecular Bioscience
University of Western Australia

The Centre is supported by funding from the Australian Government under the National Leadership in Mental Health program.

The IgnitED Fund

One of the first activities of the Centre is to award $25,000 grants to nine early career researchers, working in co-design teams, to develop up bright new ideas aimed at helping to solve the problem of eating disorders. The Ignited Fund is jointly sponsored by the Australian Eating Disorders Research and Translation Centre (which is funded by the Australian Government, Department of Health) and NSW Government.

The grants to researchers around Australia are just the beginning for the Centre’s national plan to conduct and coordinate eating disorder research and translate the findings into practice, with the aim of easing the burden on not only Australians living with an eating disorder and but also their loved ones.

The first 9 successful IgnitED recipients and their projects are:

Body dissatisfaction, stigma and discrimination put trans community at risk

Dr Bonnie Furzer, accredited exercise physiologist, University of Western Australia researcher, Perth

Trans and gender diverse people are especially vulnerable to disordered eating and exercise behaviours, which are the greatest risk factors for developing an eating disorder.

Exercise physiologist Dr Bonnie Furzer says, “The reasons are unique to trans people and poorly understood, but they range from body dissatisfaction to stigma and discrimination.”

She will work with the trans community to research early warning signs of eating disorders among this at-risk group and develop gender-affirming strategies to support healthy eating and exercise behaviours.

The role of genetics in extreme and life-threatening food avoidance and restriction

Dr Morgan Sidari, QIMR Berghofer Medical Research postdoctoral researcher, Queensland Eating Disorder Service honorary research fellow, Brisbane

Almost half of us grow up as picky eaters, but some experience a potentially life-threatening condition: ARFID or Avoidant Restrictive Food Intake Disorder.

“ARFID is an eating disorder that causes people to be fearful of, or otherwise uninterested in, eating most foods. This fear is completely unrelated to their weight or shape,” says post-doctoral researcher Dr Morgan Sidari.

Genes associated with Anorexia Nervosa were found recently. Now Morgan will collect saliva samples to find the genes, which along with environmental factors, are connected to ARFID.

Screening for eating disorders before and after pregnancy

Honorary Associate Professor Grace Branjerdporn, Queensland Health researcher in mental health, Brisbane

Eating disorders in new and expectant mums can cause miscarriages, premature births, and changes in birth weight, says researcher Grace Branjerdporn.

Not only are eating disorders more likely to develop around pregnancy; they are also less likely to be diagnosed if they’re mistaken for morning sickness or pregnancy cravings.

Grace and her team are researching how midwives and child health nurses can better screen for eating disorders before and after pregnancy: “Many eating disorder related behaviours can be rationalised in pregnancy, making them difficult to identify.”

Treating the trauma that underpins many eating disorders

Dr Phil Aouad, InsideOut Institute, University of Sydney and Sydney Local Health District, postdoctoral fellow, Sydney

“Despite the name, eating disorders aren’t only about eating. For many people, they may be an expression of deeper underlying emotional issues,” says researcher Dr Phil Aouad.

Phil and his team will explore ways to address the trauma experienced by some people with eating disorder that can shape their relationship between self, food and body image, by working with a diverse team of researchers and lived experience researchers.

They will develop the use of eye‐movement desensitisation and reprocessing (EMDR) which has a growing evidence‐base supporting its effectiveness at resolving trauma/trauma‐related symptoms. They hope that EMDR will desensitise the individual to distress associated with negative experiences, thoughts or beliefs and support them to reduce their reliance on maladaptive coping strategies such as eating disorders.

Mind-expanding magic mushrooms open up new treatment possibilities

Claire Finkelstein, Clinical Psychologist and PhD candidate, Swinburne University, Melbourne

The psychedelic molecule found in ‘magic mushrooms’ could help free people from the destructive and rigid thoughts they have about their body, which are central to eating disorders.

Clinical psychologist Claire Finkelstein believes psilocybin with psychotherapy could ease ‘body image disturbance’, the emotional distress that keeps people stuck in eating disorders.

“The treatments we currently have often aren’t enough to free people from their body image disturbance. Our team will develop a new therapy that can be trialled with psilocybin, which has been found to loosen and even reset fixed beliefs.”

Young adults ‘ageing out’ of child health services left waiting for medical help

Sarah Giles, University of Melbourne research assistant and provisional psychologist, Melbourne

Anorexia nervosa often starts in adolescence and persists into early adulthood, which coincides with transition to adult support services.

“After their 15^th or 16^th birthday, young people ‘age out’ of their service. They sit on waitlists for months, and then must navigate unfamiliar adult eating disorder treatments with a new therapist during a very vulnerable time in their recovery. They can lose the benefits of years of treatment, which has huge impacts on them and their family,” says research assistant Sarah Giles.

Working with families and young people with lived-experience, Sarah aims to ease the difficult transition from child to adult care.

Parents help teenagers work through perfectionism

Jamie Neal, Curtin University lived experience research lead, ACAP graduate student, Perth

Parents will help their teens rethink perfectionism in a parent-led cognitive behavioural therapy program to support their children living with eating disorders.

Mental health researcher Jamie Neal says that perfectionism is linked not only to eating disorders but also a lower rate of recovery. “Society tends to celebrate perfectionism as ‘doing things perfectly’ but, more and more, research shows that perfectionism can be harmful and lead to a range of health problems,” Jamie says.

Peer workers support patients still struggling with eating disorders

Rachael Duck, La Trobe University graduate researcher, Eating Disorders Victoria program manager, Melbourne

People who have recovered from an eating disorder are giving hope and understanding to those still struggling to get better.

They’re called peer workers, people who share their own recovery stories to help others, and they’re already working alongside health professionals at Eating Disorders Victoria where Rachael Duck is a peer mentoring program manager.

“The recent royal commission into Victoria’s mental health system highlighted the need for peer workers,’’ says Rachael.
“I’ll be developing online training for eating disorder peer workers to support them in this important work.”

Pandemic puts pressures on outpatient care for eating disorder hospital admissions

Dr Kylie Matthews-Rensch, Royal Brisbane and Women’s Hospital researcher and dietitian, Brisbane

Hospital patients with eating disorders are in danger of slipping away from the health system once discharged to outpatient care.

Royal Brisbane and Women’s Hospital researcher Dr Kylie Matthews-Rensch says urgent admissions of patients with eating disorders have gone up by hundreds during the COVID-19 pandemic. “Unfortunately, due to this high rate, we do not have a lot of care options once they’ve finished their admission.”

And without follow-up, the risk of relapse increases.

Kylie will research a discharge support system that will support patients and avoid further hospital admissions.

Images available for download
For more information, visit scienceinpublic.com.au
For interviews, Niall Byrne at Science in Public, 0417-131-977, niall@scienceinpublic.com.au
Onsite, Juanita Nantes, Inside Out, 0434 890 694, juanita.nantes@sydney.edu.au
Read more about IgnitED at https://www.eatingdisordersresearch.org.au/ignited

We encourage reporting about lived experience of an eating disorder, but please be mindful in how it is portrayed. Be careful not to: Mention specific weights, measurements, weight loss, quantities.Detail specific behavioursPost images of people with extreme body weights or before/after picturesGlamourise eating disorders.Use the terms sufferer, patient, anorexic or bulimic to describe someone with an eating disorder, instead use “person with an eating disorder”. More information about reporting and portrayal of eating disorders here:https://insideoutinstitute.org.au/assets/nedc-mindframe-reporting-guidelines.pdf