The study, published in the International Journal of Eating Disorders, is the first large-scale investigation of under-recognised weight loss behaviours in individuals with eating disorders. It identifies a range of behaviours not captured by existing eating disorder assessment tools. The findings highlight a range of strategies used to control weight, from more common dietary methods to less common, more extreme practices not typically captured by standard assessments.
Researchers at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London (KCL) analysed data from 1,675 Mental Health BioResource participants with anorexia nervosa, bulimia nervosa or binge-eating disorder in the Eating Disorders Genetics Initiative (EDGI UK) and Genetic Links to Anxiety and Depression (GLAD) studies.
The researchers identified weight loss behaviours through text mining over 3,000 words and phrases derived from free-text responses to a questionnaire item. Researchers suggest this gap in diagnostic criteria may lead to missed or incorrect diagnoses, as patients may not disclose certain behaviours unless specifically prompted. They may not disclose behaviours in clinical interviews due to shame or stigma. They emphasise the need for better questionnaire-based eating disorder assessments to inform detection of eating disorders, accurate diagnoses and appropriate personalised treatment plans.
Saakshi Kakar, PhD student at the IoPPN at KCL and first author of the study, said:
"As with all areas of human behaviour, weight loss behaviours utilised by those living with eating disorders evolve over time.
"Individuals may adopt new practices, sometimes driven by trends, accessibility or misconceptions about health.
"Our findings show that we must move from focusing on commonly known behaviours to a more inclusive assessment process that expects and accommodates a wider range of behaviours.
"Working with people with lived experience will help ensure that these evolving behaviours are recognised and incorporated effectively into clinical practice and research."
Dr Karina Allen, Consultant Clinical Psychologist at South London and Maudsley NHS Foundation Trust and Adjunct Reader at the IoPPN, said:
"Clinicians know that not everyone with an eating disorder is the same – eating disorder behaviours can look very different across different individuals.
"This study highlights the wide range of behaviours that people may use to try and control their weight, and which may be missed by traditional assessment measures."
Dr Moritz Herle, Lecturer at the IoPPN and joint senior author of the study, said:
"Our results highlight that not every person with an eating disorder fits the standard presentation outlined in diagnostic systems and questionnaires.
"Hence, we need to extend our ideas around weight loss behaviours to ensure that we are inclusive and develop support system to meet everyone’s needs."
Dr Christopher Hübel, Child and Adolescent Psychiatry Resident at DRK Clinics Westend Berlin and Researcher at Aarhus University and joint senior author of the study, said:
"Our study suggests that some people with binge-eating disorder may be overlooked by current diagnostic guidelines, especially if they also try to lose weight.
"We heard from 81 participants who shared in their own words that they engage in weight loss behaviours – something not currently reflected in the standard criteria.
"This points to the need for a more flexible, dimensional approach to understanding eating disorders, rather than relying solely on strict categories."
Suzanne Baker, Carer Representative F.E.A.S.T says:
"As carers and supporters of loved ones affected by Eating Disorders, we welcome this paper’s call for broader diagnostic approaches.
"We value the inclusion of lived experience in developing assessment tools that reflect the diverse behaviours we witness.
"Eating Disorders are not one-size-fits-all illnesses, and recognising this is key to creating personalised, timely, and effective treatments.
"It’s encouraging to see research that meets patients where they are, rather than forcing them into narrow definitions."
Mental Health BioResource
The NIHR Mental Health BioResource focuses on recruiting participants experiencing mental health conditions, as well as healthy controls. The two largest studies within the Mental Health BioResource are the Genetic Links to Anxiety and Depression (GLAD) Study and the Eating Disorders Genetics Initiative UK (EDGI UK), both led by researchers at King’s College London and supported by the NIHR Maudsley Biomedical Research Centre (BRC).
Launched in September 2018, the GLAD Study set out to recruit 40,000 individuals with experience of depression and/or anxiety, making it the largest study of its kind globally. Its aim is to better understand the genetic and environmental factors that contribute to these conditions, ultimately improving treatment and prevention strategies.
Building on this model, EDGI UK was launched in February 2020 to investigate the genetic and environmental underpinnings of eating disorders. In collaboration with Beat, the UK’s eating disorder charity, EDGI UK aims to recruit 10,000 participants with a lifetime experience of any eating disorder, including anorexia nervosa, bulimia nervosa, binge-eating disorder, and other specified or unspecified eating disorders. The study is part of an international effort to accelerate eating disorder research and improve outcomes for those affected.
Both studies have already made significant contributions to mental health research, with tens of thousands of participants providing questionnaire data, saliva samples for genetic analysis, and consent for medical record linkage and future recontact. However, the research teams acknowledge the need for greater diversity among participants and are actively working to improve representation across gender, ethnicity, and other demographics.
Researchers involved in this study publication acknowledge that almost 95 per cent of participants were female and 94 per cent were of White ethnicity. EDGI UK and GLAD are taking steps to improve representation.
How can you get involved?
If you’ve experienced an eating disorder, depression, or anxiety, your story matters. By joining EDGI UK or the GLAD Study, you can contribute to world-leading research that’s shaping the future of mental health care. Participation is simple, secure, and can be done entirely online. Every sample, survey, and shared experience helps researchers uncover the complex causes of these conditions and improve treatment for others. Find out about the eligibility criteria and how to join EDGI UK and join GLAD.
Whether or not you've experienced a mental health condition, your contribution matters. Last year, the GLAD Study kicked off a recruitment drive for individuals without a history of anxiety and depression, as health researchers across not just mental health, but all research themes, require what is also known as 'healthy controls', in other words, participants without the condition they are researching, as a measure for comparison.
If you are a researcher interested in working with the NIHR BioResource to support your study, please get in touch today.
You can keep up to date with NIHR BioResource on X and LinkedIn.
Publication details: “Beyond the Diagnostic Checklist: A large-scale analysis of under-recognised weight loss behaviours in individuals with eating disorders” (Saakshi Kakar, Una Foye, Helena L. Davies, Elisavet Palaiologou, Chelsea M. Malouf, Laura Meldrum, Iona Smith, Gursharan Kalsi, Karina L. Allen, Gerome Breen, Moritz Herle, Christopher Hübel) was published in the International Journal of Eating Disorders. DOI: 10.1002/eat.24477
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