Introductory note from Laura Collins Lyster-Mensh, F.E.A.S.T. Executive Director
In a rapidly developing field like eating disorder treatment, staying up to date on the facts can be a challenge. It has been my personal mission, and a focus of my advocacy work here at F.E.A.S.T, to press for a set of facts and statistics that all leaders and organizations in the field could agree on. Without that common understanding and language, we confuse the public and we encourage a do-it-yourself approach to understanding these dangerous but treatable disorders. Without understanding the facts in common, we render training and treatment incompatible between settings. I believe we cannot expect newer clinicians or non-specialists to trust the field if we ourselves are unable to share basic facts.
That said, we also know that anything we do say about eating disorders is likely to evolve as more data is gathered. The current state of eating disorder research is sadly lacking: we know too little about what these deadly disorders are, what causes or could prevent them, who is affected by them, and how best to treat them.
We cannot let the paucity of data and the inevitability of progress deter us from saying anything now. In fact, that reluctance to agree on any facts is part of the reason we lack the public’s attention and funding to conduct more research. We must also commit to using the data we have if we expect researchers to do more. We must all commit to supporting research, and researchers, and begin to expect that this knowledge will guide treatment of those entrusting their care to our treatment institutions.
There are many flaws, we know, in how data has been collected. Prevalence data depends on diagnosis, which depends on access to care, for example. There are cultural and gender and racial biases baked into our ideas about illness, about food, and about our bodies: all these show up in our research and, especially, in the lack of research.
Despite years of hoping for a collective voice in our field to create a shared document about prevalence and basic statistics, that has been elusive. F.E.A.S.T. recently asked Millie Plotkin, MLS a trusted librarian, or ‘informationist,’ in our field, to allow us to publish a brief start at that common document. Her list is short and focused: representing the best supported data we have. Her list is well-sourced and includes the specific citations.
At F.E.A.S.T. we believe we can start somewhere and let that common knowledge improve and grow over time. We are proud and honored to share this report and grateful to Plotkin for her work organizaing and vetting the research and literature in our field. Her leadership and scholarship have never been more needed, and we appreciate the opportunity to collaborate with her.
“Eating Disorders by the Numbers”
Millie Plotkin, MLS
- Eating disorders affect at least 9% of the population worldwide.1,2
- Almost 1% of us suffer from anorexia nervosa
- Between 2-3% of us have bulimia nervosa
- Binge eating disorder(BED) is experienced by between 2-3% of us
- At least 4% of us experience OSFED
- The prevalence of ARFID is still unknown.
Eating disorders are complex illnesses.
- 28-74% of risk is through genetic heritability
- Eating disorder diagnoses vary in heritability
- AN: 28-74%
- BN: ≈ 60%
- BED: 39-45%
Eating disorders affect all racial and socioeconomic groups.
- Food insecurity plays a role: 17% of people using American food banks have clinically significant eating disorder pathology5
Less than 6% of people with eating disorders are medically diagnosed as “underweight.”6,7
Eating disorders can be deadly.8,9
- 10% of those with eating disorders lose their lives as a result
- Eating disorders are second only to opioid overdose as the deadliest mental illnesses
- About 26% of people with eating disorders attempt suicide
Many people do not seek treatment for their eating disorder?10
- In the U.S., only a third of people with anorexia nervosa seek help
- For bulimia nervosa, almost two thirds
- For binge eating disorder, about one half
 Galmiche, M., Dechelotte, P., Lambert, G., & Tavolacci, M. P. (2019). Prevalence of eating disorders over the 2000-2018 period: a systematic literature review. American Journal of Clinical Nutrition, 109(5), 1402-1413.  Hoek, H. W. (2016). Review of the worldwide epidemiology of eating disorders. Current Opinion in Psychiatry, 29(6), 336–339.  Bulik, C. M., Blake, L., & Austin, J. (2019). Genetics of eating disorders: what the clinician needs to know. Psychiatric Clinics of North America, 42(1), 59-73.
NOTE: These numbers are from twin studies. As research using populations studies continue, we will learn more! Diemer, E. W., Grant, J. D., Munn-Chernoff, M. A., Patterson, D., & Duncan, A. E. (2015). Gender identity, sexual orientation, and eating-related pathology in a national sample of college students. Journal of Adolescent Health, 57(2), 144-149.  Becker, C. B., Middlemass, K., Gomez, F., & Martinez-Abrego, A. (2019). Eating disorder pathology among individuals living with food insecurity: a replication study. Clinical Psychological Science.  Flament, M. F., Henderson, K., Buchholz, A., Obeid, N., Nguyen, H. N. T., Birmingham, M., & Goldfield, G. S. (2015). Weight status and DSM-5 diagnoses of eating disorders in adolescents from the community. Journal of the American Academy of Child and Adolescent Psychiatry, 54(5), 403-411.  Duncan, A. E., Ziobrowski, H. N., & Nicol, G. (2017). The prevalence of past 12-month and lifetime DSM-IV eating disorders by BMI category in US men and women. European Eating Disorders Review, 25(3), 165-171.  Arcelus, J., Mitchell, A. J., Wales, J., & Nielsen, S. (2011). Mortality rates in patients with anorexia nervosa and other eating disorders: a meta-analysis of 36 studies. Archives of General Psychiatry, 68(7), 724-731.
Chesney, E., Goodwin, G. M., & Fazel, S. (2014). Risks of all-cause and suicide mortality in mental disorders: a meta-review. World Psychiatry, 13(2), 153-160. [Again this is from an American study, so could vary greatly by country.]
Udo, T., Bitley, S., & Grilo, C. M. (2019). Suicide attempts in US adults with lifetime DSM-5 eating disorders. BMC Medicine, 17, 120. These numbers are US specific. I’m guessing there will be a big variety around the world, but at least it’s info we can use with NEDA, ProjectHeal, etc.
Coffino, J. A., Udo, T., & Grilo, C. M. (2019). Rates of help-seeking in US adults With lifetime DSM-5 eating disorders: prevalence across diagnoses and differences by sex and ethnicity/race. Mayo Clinic Proceedings. E-pub ahead of print.
Millie Plotkin, MLS, is Informationist for Eating Recovery Center, and creator of the Eating Disorders Information Gateway. After earning her Masters of Library Science from Catholic University in Washington, DC, Millie worked at the National Library of Medicine and the National Institutes of Health Library before joining ERC in 2013. Millie has been volunteering in eating disorders advocacy work since 2001 and is founder of ANAD’s annual National Candlelight Vigil. She currently serves on the board of the Academy for Eating Disorders as Director of Social and Online Media, on the board of the Eating Disorders Coalition as Secretary, and is Vice-President of iaedp’s Baltimore Metro chapter.