Warning: This article contains information that may be triggering to some readers.
A team of scientists, genetic researchers and psychologists are one year into their groundbreaking world-first study hoping to revolutionise the treatment of eating disorders.
Newshub sat down with two members of the Eating Disorders Genetic Initiative (EDGI) - Professor Martin Kennedy and Dr Jennifer Jordan - to discuss their accomplishments in a year of lockdowns and roadblocks.
"We're the really crazy people who decided to launch a study almost the same week as the pandemic was approaching our shores," says Prof Kennedy, a genetics researcher and co-leader of the initiative.
Their first step was putting a call out across New Zealand, Australia, the United States and Denmark to find people who'd suffered from an eating disorder and were willing to participate in a study involving the testing of their saliva.
The EDGI team had already collaborated on a similar study, the Anorexia Nervosa Genetics Initiative (ANGI). This research, which involved bloodwork and interviews with patients diagnosed with anorexia, had given them greater understanding of what drives the disorder.
One of the key findings was that anorexia - which is responsible for more than 10,000 deaths every year - has a genetic component.
"There are these genetic links that show us anorexia nervosa is not just a psychological disorder, but also driven by metabolic factors as well. It really gave us some insights into the biology," Prof Kennedy says.
He says genes are only "part of the story", and explains the team will also be looking at environmental factors - including how much exercise someone does, their diet, and if they smoke.
"What we are trying to do is break down the black box of a disorder; understand the biology, then start thinking about how the environment is impacting on the biology and leading to the disorder."
Dr Jordan, who interviewed ANGI's participants, says there were a lot of people who wanted to tell their stories.
"They really wanted to be a part of trying to improve outcomes and help other people in the future."
The ultimate goal
The idea behind the EDGI research was to expand on the work of the ANGI study to include other eating disorders, like bulimia nervosa and binge-eating, Prof Kennedy says.
Bulimia nervosa is characterised by uncontrolled episodes of overeating, more commonly referred to as binging, followed by 'purging' using self-induced vomiting or laxatives.
Binge-eating disorder is similar in that a person experiences uncontrolled eating, but isn't followed by purging.
Although EDGI faced delays thanks to COVID-19, with the global team forced to work remotely, they remain united around a vision of what the study could achieve in the long-term.
Prof Kennedy says the ultimate goal of the study is to find better treatments for eating disorders and the comorbidities that often exist with them. He admits treatment at the moment is currently full of "educated guesswork".
"The first is finding the genes that key us into some biochemical pathways either in the brain or in the wider body. In terms of anorexia, metabolic processes that might be operating in the gut or other parts of the body are important," he says.
Identifying these gene pathways could allow the team to "repurpose" a drug, which would involve finding a drug that is already on the market.
"Pharmaceutical companies might be able to consider developing drugs that target those pathways specifically as well," he says.
'It's not a choice'
Dr Jordan says there was a "huge sense of relief" among those interviewed for the original ANGI study when they heard there was a genetic element to their disorder.
"It was quite validating," she said.
"[They realised] they had been primed before birth to develop this... There was something about their metabolism that put them down that route and made it such a struggle for them to get better."
Dr Jordan points out that those who struggle with an eating disorder are not struggling by choice. She gives the example of people who diet; some are able to lose a certain amount of weight and are satisfied with that goal, whereas others can head down a dangerous road of never-ending weight loss.
"There's something different about people with that biology which means they fall down that trap, whereas other people's biology pulls themselves back to a normal weight."
'We can't be the ambulance at the bottom of the cliff'
Right now, the team is working on broadening their research pool, which involves the brave individuals who are willing to share their story. Enter mental health advocate Genevieve Mora.
Mora says when she first heard about EDGI, she had to be a part of it.
"I think any research and anything that's going to help with better treatment options is something I'm really keen to be involved in," she says.
Mora battled with obsessive-compulsive disorder and anorexia nervosa from a very young age, resulting in multiple hospital admissions and years of private treatment.
"I'm in a very lucky position where my parents could afford to get me private care," she explains.
"When I was discharged from hospital, I started seeing a psychologist and a dietician quite intensely in the private system, which I know is a luxury for me."
Mora is the co-founder of charity Voices of Hope, where she works to support those dealing with a number of mental health issues, including eating disorders.
She says it's "heartbreaking" that people with eating disorders can't always access treatment services easily due to a lack of training, resources and funding.
"I think it's a big step to ask for help. And when you're turned away from that, it does affect you," she says.
"What I hope will be achieved in the study is that by finding out what genes are involved in eating disorders, better care options and treatment options will be available."
Mora hopes the identification of genes will help with early intervention and prevention efforts.
"I think that's a really, really important thing - not being the ambulance at the bottom of the cliff, but getting in there early."
If you, a family member or friend would like to be involved in the EDGI study, visit their website to find out more.
