Eating Disorder Genetic Initiative: Push to identify genes making people susceptible to anorexia, bulimia

An exciting new program could help scientists predict exactly who may develop eating disorders and save more than 150,000 Australians.

For diseases involving mental health, psychiatrists and scientists agree that the genes may be the gun but it’s the environment that pulls the trigger.

The relationship between genes and environment is massive when it comes to eating disorders – something a groundbreaking new initiative hopes to finally solve.

The Eating Disorders Genetics Initiative (EDGI), which launches today, aims to identify hundreds of genes that influence a person’s risk of developing anorexia nervosa, bulimia nervosa and binge-eating disorder.

Anyone from the age of 13 — a worrying insight into how early eating disorders develop in some people — with lived experience, is encouraged to apply.

A study of 17,000 people five years ago uncovered eight of those genes, however it’s hoped this initiative will not only uncover more linked genes but will improve the treatment of eating disorders and ultimately save lives.

The leader of the initiative is Professor Nick Martin, from the QIMR Berghofer Medical Research Institute.

An expert in genetic epidemiology research, Prof Martin said the 15 minutes it would take to complete the questionnaire and send in a saliva sample was a “small price to pay” for asking people to “take part in solving their own medical problem”.

Professor Nick Martin is hoping thousands of Australians will send in their saliva for the study. Picture: Liam Kidston

While the initiative’s target is 3500 people, it’s estimated there are 150,000 Australians who have lived or are living with an eating disorder.

“The only way we medically treat eating disorders right now are with generic antidepressants — which are often not helpful,” Prof Martin said.

“The primary aim of the study is to find new genes that will hopefully lead to the neurochemical pathways behind eating disorders that will then suggest new drugs for big pharma to design to target these.”

But the timeline to develop a new drug – usually about 10 years – is something EDGI is hoping to speed up.

“Once we know these genes, we can calculate genetic risk of these conditions and you can imagine a time in the future if people want to know their risk, we can provide a risk score,” Prof Martin said.

“For anorexia and young women in particular, you could then have parents maybe wanting to monitor them, knowing they’re high risk and monitor if any behaviour is developing.”

Prof Martin knows something like that raises debates about civil liberty and over-parenting.

“But it’s a scientist’s job to provide the tools and then it’s up to society to figure out how it wants to use them,” he said.

Prof Martin said this science and people’s ability to find out if they’re genetically disposed to develop a disease was already on its way into the mainstream.

“If you want to know, then you could know. One has to remember that it’s all voluntary; no one would want to see this in any circumstance that isn’t voluntary,” he said.

“And we have to do so with education and informed consent. A lot of people want to know about everything except their risk of Alzheimer’s but others say, ‘No I’d rather know everything’ – but it all has to be voluntary risk.”

EDGI could also help researchers with drug repositioning – taking a drug that’s already been developed for another disease, finding a pathway in common and using it on a different disease. Drug repositioning is already proving successful with arthritis and asthma.

“Obviously that’s a hope for us because it’s much quicker than developing a new drug,” Prof Martin said.

But there’s another incredible by-product of finding the genes that make people more susceptible to eating disorders.

“So many people have come forward and said it really alleviates their sense of guilt. There’s often a great sense of blame for parents: ‘Where did we go wrong? What did we do?’ So it’s a relief for them to hear this has a strong genetic component,” he said.

“In many ways it’s sort of liberating and quite surprising how many people have said that, the mere fact of carrying out this study, we’re taking away the guilty and the secrecy and showing people that this is a complex genetic condition, just like diabetes or epilepsy or arthritis.

“It’s got biological roots and it’s not a question of blaming yourself or blaming your parents or society; it’s just something that’s been dished out as if you had diabetes or something. So we just need to be more matter of fact and see what we can do about it.”

Prof Martin said the conversation had changed for the better around how important genetic information is to behaviour.

“I’m in no way denying the ability of counsellors who rate and improve these conditions, all we’re saying is these conditions don’t occur at random in society. They’re occurring in people who are genetically vulnerable,” he said.

“There are so many people out there who experience the same triggers but because they’re not genetically vulnerable they don’t experience disease – but you’re obviously not hearing about those people.”

For Millie Thomas, an eating disorder recovery coach on the Sunshine Coast, the initiative is deeply personal.

Ms Thomas battled an eating disorder for 15 years before recovering in 2016 and relocating to the tranquil beachside community in Queensland.

“There is a lot of power in having knowledge … so to understand why you have developed an eating disorder, that knowledge is power and when you feel empowered in recovery it’s a much better place than feeling defeated and like there’s no hope.”

“For people to understand there are biological, chemical processes happening … maybe they’d give their recovery another shot,” she said.

“If we can see what genes predispose these individuals to eating disorders, maybe we can look at different ways of prevention. We know the age of onset is getting younger and younger.”

Ms Thomas was diagnosed with anorexia nervosa at the age of 12 after a “completely normal childhood”.

After leaving a co-ed primary school, Ms Thomas started at an all-girls high school.

“I had all the elements (that can trigger an eating disorder) – type A, high achiever, perfectionist, obsessive compulsive disorder,” she said.

“I felt I didn’t measure up and there was just that inkling of insecurity.

“I had a particular toxic best friend that made me feel insecure and I started to think, ‘If you lose a bit of weight then things will be better,’ and that set me on the track and I got really deep, really quickly.”

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Millie Thomas works as an eating disorder recovery coach on the Sunshine Coast. Picture: Josh Woning

Ms Thomas described her eating disorder as a “beast”.

“It digs its claws in and before you know it you’re literally being eaten from the inside out and you’re literally a shell of you before and you don’t recognise what is happening,” she said.

Ms Thomas dropped out of school and started family-based therapy as doctors worked to get her weight back up but she didn’t receive a lot of psychological treatment.

Admitting to being “very good at putting on a front,” Ms Thomas said inside she was “miserable” and wouldn’t eat out in public.

In 2015, at the age of 27, Ms Thomas had the bones of an 80-year-old, was “always cold” and in constant pain due to the stress fractures throughout her body. She was also living on borrowed time with a failing heart.

“My outpatient team gave up on me. They said they had no hope of me surviving and my case of anorexia was too severe and too enduring. They told my family I wasn’t going to recover and palliative care should be looked at,” Ms Thomas said.

“Now that I help people with eating disorders, I never want people to feel there’s no hope – it doesn’t matter how long you’ve been struggling.

“(The outpatient team) took that hope away from me and it just put me on a further path of destruction.”

Barely surviving on her struggling heart, Ms Thomas’ GP gave her a week to live.

“At that point I really was so beside myself,” Ms Thomas said.

“I was so done with waking up to face reality.

“I had no life; it was an existence. I had made that decision that I didn’t want to fight anymore. It was too hard.”

But in a desperate final effort to save her life, Ms Thomas’ mum took her to her “happy place” – the Sunshine Coast.

She found a neuro-linguistic programming (NLP) therapist and started the long road to recovery.

Describing her NLP therapy as “excruciating”, Ms Thomas said it was similar to forcing someone with arachnophobia to eat spiders.

“I can’t describe the overwhelming terror I felt in those moments,” she said.

“But I was empowered to know I could change my brain, if I really wanted to I could change my neural pathways … it’s hard but it’s possible.

“I look back and think, ‘Gosh it did seem like the only way I was going to get peace was to be up in the clouds looking down on the world.’ But I am thankful I was able to have that one last shot.”

She now serves as the head recovery coach at End ED, a private eating disorder clinic on the Sunshine Coast, and has helped countless others battle their own demons.

While Ms Thomas is fully recovered and living a healthy life, she said she still has some ongoing health problems.

“I have major gut issues which I am still in the process of fixing but it’s only natural that my gut was going to require major healing.

“I had osteoporosis and stress fractures but I have been able to help that through pilates and strength work,” she said.

“It’s not something that’s debilitating to me … but I’m always careful about my bones regardless.

“I was also lucky to get my menstrual cycle back after 15 years.”

Ms Thomas said she has “no doubt” the genetics initiative will save lives and help others understand why they were hit by the complex mental illness.

Australians with lived experience of eating disorders can find more information about volunteering for EDGI at www.edgi.org.au.

If you or anyone you know need help or support for an eating disorder or concerns about body image, please call Butterfly Foundation National Helpline on 1800 334 673 (ED HOPE).