Eating disorders affect millions of people worldwide, and they come in many different forms. Among them, Avoidant Restrictive Food Intake Disorder (ARFID) is particularly complex and misunderstood. That's why I’m incredibly excited to share that I’ve received major funding from the Wellcome Trust to establish a research team at Cardiff University that will study ARFID in detail over the next 8 years.
What Is ARFID?
ARFID is a severe feeding and eating disorder, officially recognised as a diagnosis only in 2013. Unlike other eating disorders, ARFID isn’t typically tied to concerns about body image. Instead, it’s characterised by extreme restriction and avoidance of food intake. This can lead to consequences such as malnutrition, or reliance on nutritional supplements. The disorder can also cause significant psychological distress, deeply impacting the quality of life of those who live with it. Some initial population estimates indicate ARFID may have a prevalence of 1-2%, similar to autism and ADHD, yet awareness and support for ARFID is very much lacking.
Further information on ARFID can be found on the Beat website[SC1] .
What makes ARFID especially challenging is how differently it can manifest from person to person. Some individuals may have a lack of appetite, while others might have strong sensory aversions to certain textures, colours, or smells of food. Others may experience an intense fear of the potential consequences of eating, such as choking or vomiting. This wide range of symptoms means that ARFID can be difficult to diagnose and treat effectively, as each person’s experience with the disorder can be very different.
Why ARFID Research Is So Important
Despite being recognised as a serious condition, research into ARFID has been limited. This lack of understanding has left many individuals and their families without the resources and support they need. Clinicians, too, face challenges in diagnosing and treating ARFID because we simply don’t know enough about the disorder’s different manifestations or its underlying causes. That’s where my new research comes in.
My goal is to address these critical gaps in our knowledge about ARFID. Using large-scale population datasets, I plan to characterise the range of clinical features associated with ARFID, understand who in society is at greatest risk of developing ARFID, and identify distinct subtypes of ARFID symptoms. Different subtypes may have causes, which would mean that they may require different approaches to treatment and support. By understanding more about the nature of ARFID, we can pave the way for better clinical practices and outcomes for those affected.
A Collaborative Effort
One of the aspects of this research that I’m particularly proud of is its collaborative nature. Developing the grant proposal was a team effort that involved input from individuals living with ARFID, healthcare professionals, and the eating disorder charity Beat. Their insights were invaluable, and meant I could share directly with the Wellcome panel the impact ARFID has on individuals living with the condition. I want to take this opportunity to thank Beat and the individuals with lived experience who helped develop the research proposal, shared quotes, and will continue to support the project over the next eight years. Their involvement is crucial, and I’m incredibly grateful for their contributions.
This collaboration will continue throughout the eight-year project. I’ll be working closely with individuals with lived experience, clinicians, and Beat to co-develop research priorities, information resources, and service development initiatives. This partnership is crucial because it ensures that the findings of the research are directly applicable to clinical practice and that they contribute to the improvement of support services for individuals with ARFID.
If you would like to follow updates on the research and be contacted about potential opportunities – please sign up via the Cardiff University National Centre for Mental Health website[SC2] .
The Role of Wellcome’s Support
The Wellcome Trust is known for supporting science that tackles urgent health challenges, and I’m grateful that they have recognised the importance of ARFID research. Their support will allow me to access large-scale datasets and collaborate with an international network of researchers, greatly enhancing the scope and impact of the research.
Looking Forward: The Impact of the Research
I’m truly excited about what this research could mean for the future of ARFID diagnosis and treatment. By identifying distinct symptom subtypes and their causes, we could develop more personalised and effective treatment plans. This could be a game-changer for those living with ARFID, providing individuals with the targeted support they need to manage the condition more effectively.
The collaboration with Beat, NHS ARFID services, and planned work with policymakers is key to ensuring that the outcomes of the research are directly translated into resources and services that benefit those affected.
A Bright Future for ARFID Research
As the project progresses, I’m hopeful that the findings will change the way ARFID is understood and treated. I’m excited about the possibilities this project holds and am committed to making a lasting difference in the diagnosis, treatment, and support of those living with ARFID. With the continued support of Wellcome, Cardiff University, Beat, and the broader research community, I believe that together we can achieve these goals and improve the lives of many individuals and their families.
You may also be interested in a reading a literature review [SC3] myself and colleagues at the University of Aberdeen and University of Edinburgh wrote for Eating Disorder Awareness Week 2024.
[SC1]https://www.beateatingdisorders.org.uk/get-information-and-support/about-eating-disorders/types/arfid/
[SC2]https://www.ncmh.info/arfid-signup
[SC3]https://edaw.beateatingdisorders.org.uk/edaw2024/we-are-not-being-fussy/
Contributed by Dr Sam Chawner
Sam Chawner is a Wellcome Trust Senior Research Fellow at Cardiff University where he studies the development of mental health conditions in children and young people, including ARFID. He collaborates with individuals with lived experience, charities, clinicians, and policymakers to ensure that his research findings change policy and practice. He is committed to diversity and inclusion in his research, and this has been recognised by a Health Care Research Wales Rising Star award. He was also named on Cambridge University's Q100 list of trailblazing LGBT+ alumni.
For further ARFID support for yourself or a loved one, check out our webpages below: