NZ’s Ground-Breaking Eating Disorder Research “A Great Step Forward”

Words by Seren Ashmore (he/him) 

CW: Disordered Eating, Medical Trauma. 

On 31 March 2023, the world’s largest ever genetic investigation into eating disorders (EDs) concluded the three-year long recruitment phase of their study.

Eating Disorders Genetics Initiative (EDGI) is attempting to pinpoint genetic associations with EDs. The study has the potential to change the way we treat EDs—which at the moment, I think, is lowkey fucking barbaric.

Led by Professor Cynthia Bulik, the EDGI consortium consists of four international sites in North Carolina, Brisbane, Denmark, and Christchurch. The investigation is funded by a large research grant awarded to Professor Bulik (and the EDGI team) by the USA’s National Institute of Mental Health. Dr Michaela Pettie, a VUW PhD grad, is also part of the team.

The EDGI study aims to gain a better understanding of the genetic influences on ED development, how types of EDs and other conditions may overlap, and find new ways of either treating or reducing risk for EDs.

To support this kaupapa, over 3500 patients who have suffered from anorexia nervosa, bulimia nervosa, and/or binge eating disorders at some point in their lives completed online surveys and spat in a tube to send to the Christchurch campus of the University of Otago.

EDGI researcher Professor Martin Kennedy spoke to Salient about the study’s next steps.

“Over the next few months, the vast amount of data we have accrued is being cleaned of errors or anomalies [and will have] DNA extracted,” he said. 

Genetic data will then be shared between international researchers and analysed for recurring patterns—a process Kennedy predicts will take most of this year.

“We hope to begin publishing and releasing findings by the first months of 2024. With such a huge amount of data, it is likely that we will still be making discoveries and releasing findings over the next several years.”

An estimated 100,000 New Zealanders suffer from one or more EDs, and many more have disordered eating. EDs have the highest mortality rate of any psychiatrist illness, and the current state of treatment is grim, especially in Aotearoa. 

In May 2022, Salient wrote that ED services in Aotearoa were “reaching crisis point”, with a wait time of over 9 months for a new patient to access CREDS (Central Region Eating Disorder Services). At time of writing, the wait time to see a specialist dietitian is four to five weeks, six to nine months for individual therapy, and one to three months for a comprehensive assessment. “Specialist eating disorders services, like CREDS, largely provide care for people who have more severe conditions and treatment is often provided on a planned admission basis rather than on an immediate basis,” Explained Mental Health, Addiction & Intellectual Disability Service executive clinical director, Paul Oxnam.

But unfortunately, the problems don’t always stop once you’re in either. Max*, an ED sufferer, told Salient about his experience in publicly-(under)funded treatment. “I had a severe psychotic anorexia, entered treatment on the brink of death, and was given a trainee clinician,” he said.

Therapy methods that are currently the standard practise—the Maudsley Model and Cognitive Behavioural Therapy—are either outdated or not ED-specific. According to New Zealand Eating Disorders Clinic, only 40-50% of patients make a full recovery.

Describing the therapies as “fucking brutal” and “almost cruel”, Max opted to leave treatment before he was ready. “Treatment was almost as traumatic as the ED itself. After a while, you just have to leave and live with whatever level of recovery you're left with.”

However, EDGI is on the frontlines of seeking meaningful alternatives. Kennedy is positive that the “outcomes of the EDGI study should represent a great step forward.”

“We feel a great obligation to make sure this work ultimately leads to improved outcomes and better understanding of eating disorders.”

For updates on EDGI’s research, visit edgi.nz. For support around EDs and disordered eating, contact EDANZ at ed.org.nz.

*names have been changed