Long-term eating disorders (EDs) are increasingly recognised as complex, enduring conditions that evolve over many years. The term SEED - “Severe and Enduring Eating Disorders”- is often used to describe such experiences, but the term itself raises important questions about definition, identity, and care. This summary explores what is known about long-term eating disorders, considering both research and lived experience perspectives, and reflects on how the field might move forward to support sustained recovery and quality of life.
By Renee Botham
SEED stands for ‘Severe and Enduring Eating Disorders’. It’s a term that can be used to describe eating disorders that last for many years. However, there’s no clear agreement about how “severe” or “enduring” should be defined. For example, is ‘enduring’ 4 years, or 7 or 10 years?
Steinhausen (2002) defined SEED as lasting ten years, whilst Robinson (2009) described SEED broadly, suggesting a similar timeframe but focusing on whether the illness “interferes substantially with quality of life” (p8).
These definitions acknowledge that eating disorders can be present for a long time, and recovery, whilst always possible, is often not a straightforward journey. People’s experiences of SEED often vary substantially; some may need continued medical intervention because of chronic complications, whilst others may be more stable but still find that the eating disorder is present in their life.
Research has considered how long-term eating disorders can be described as SEED and what this might mean for treatment and recovery. It also explores the best way people can get help, including finding the right care and support in the community, especially for those who have needed repeated hospital admissions. Research also considers how relationships, social life, work, and ongoing support can help people build trust and connection during treatment.
Recent work (e.g., Hay, Dann & Touyz, 2025) has examined new and emerging approaches in the treatment of longstanding EDs, including therapies such as repetitive transcranial magnetic stimulation (rTMS), deep brain stimulation (DBS), and newer talking therapies. These changes reflect a growing understanding that recovery from long-term EDs requires flexible, ongoing, and multidisciplinary care i.e., support from a range of professionals, working together to meet the needs of the whole person. This is supported by Robinson (2009) who similarly highlighted that a range of services are required for continuous, specialist care.
One difficulty nevertheless in relation to researching long-term outcomes in EDs and identifying those with a persistent illness, is that it is hard to keep in contact with individuals over many years, as services may discharge the person, people may move on, or become difficult to reach due to barriers that affect the whole NHS system. Only a handful of studies have managed to do this, and they share similar insights that whilst advances in our understanding of long-term eating disorders, more research, particularly with lived experience input, is needed to test new models of care and better support this group of people (Hay et al., 2025).
From a lived experience point of view, qualitative research explores what it feels like to live with long-term EDs- and how the language used by professionals can shape that experience. An example of this is how useful or perhaps how unhelpful/limiting the term ‘SEED’ can feel. Lubieniecki et al (2025) argued that the term SEED “can function as a barrier or facilitator to care, shaping clinician attitudes and patient expectations”. Their preference was of the word ‘longstanding’, considering this to be more open-ended and less pathologising.
Similarly, Downs’ (2025) study found that while some participants perceived the term SEED as helpful, others saw it as limiting because of assumptions about what constitutes recovery.
“For me, applying a label to people with longstanding eating disorders is helpful only if it facilitates access to more supportive and effective care. If the research to establish a universal definition for SEED helps services gain a better understanding of the volume of people affected and lobby for further funding, then that would definitely be a win” [Person with lived experience]
Research and lived experiences both suggest that people affected by eating disorders do not progress through predictable stages of recovery, and can be further impacted by neurodiversity. As such, it is important to recognise the life stages of the person across the years and the patterns in their relationships and emotions that they might feel internally but aren’t always visible to others.
Over time, people may maintain outward stability. Whilst someone’s weight may appear stable, someone’s binge eating or purging may appear to have reduced, or someone may be experimenting with a greater variety of foods, the ED thoughts may continue to be loud and difficult to navigate.
Important to note is that responsibility for recovery does not rest solely with the person with an eating disorder and their families (Jamieson et al. 2024). Long-term outcomes are shaped by a web of influences:
Encouragingly, research demonstrates that full recovery is possible even after 10–20 years (Noordenbos et al., 2002). In fact, 75–80% of people do recover, though the journey may span 5–35 years (Eddy et al., 2016).
“So I hid it and just went on” [Lived experience quote]
Bromberg (2001) in his essay ‘Treating Patients with Symptoms and Symptoms with Patience’ described how people with long-term EDs can struggle to form close connections with others and understand their sense of ‘self’. He observed that recovery involves rediscovering a desire for life through genuine connection with others, which helps replace emptiness with emotional support and care.
Building on this, Botham’s research (2020) explored the narratives of people beyond their symptoms, highlighting how recovery also involves healing inner conflicts, finding one’s own voice, and re-shaping identity after years of rigid, ‘all or nothing’ patterns. Participants described consistent, steady, and compassionate relationships (with loved ones and a range of professionals) are crucial for providing stability and hope, helping them move toward a more fitting sense of self away from the eating disorder.
A common theme in research about moving forward from long-term eating disorders is that connection and identity are deeply linked. Feeling genuinely accepted, valued, and connected to others can support the rebuilding of emotional regulation, self-esteem, and a sense of belonging. Together, these key factors can foster a “web of hope” - a network of small but significant steps that gradually supports a person in moving beyond the eating disorder and engaging more fully in life.
Whilst understanding of long-term eating disorders grows, significant gaps remain. Research must further explore how people experience recovery and how support can be offered at different life stages to support sustained wellbeing and quality of life. Similarly, the barriers to achieving this need to be better understood.
Language and labels, such as ‘SEED’, need to be carefully considered to avoid extinguishing hope or limiting access to care. Lived experience insight is crucial to keep this area of research moving forwards and help shape services and interventions that address the whole person. This can empower people to build on their well-being, identity, connection, and self-esteem.
Moving forwards requires flexibility, compassion, and understanding that recovery may be gradual, non-linear, and deeply individual, but always possible.
“What does the term SEED mean to you?”
“I have lived with ARFID my whole life and only recently (in the last year or two) was able to name my experience as ARFID. I would not have considered myself to have direct experience with SEED because of the severe and enduring aspect of the acronym; however, I would wholeheartedly agree with describing my experience as longstanding.
Definitions are important, but they can also be fixed and therefore hindering. To prescribe a timeframe to SEED does more harm than good for someone who cannot relate to words such as severe or enduring, because it excludes those who may be coping 'well' but are still impacted daily by an eating disorder like ARFID. This matters to me because so often those with ARFID are excluded from being taken seriously and not dismissed as picky eaters, but also excluded from healthcare and local eating disorder clinics that come under the NHS. Exclusionary wording or practices does little to help us, and a change in this is welcomed.”
Botham, R., (2020), ‘How do women with a history of SEED-AN experience navigating their lives away from and beyond their illness – A narrative inquiry study’, Metanoia Institute/Middlesex University press
Bromberg, P.M., (2001), ‘Treating Patients with Symptoms – and Symptoms with Patience: Reflections on Shame, Dissociation and Eating Disorders’. Psychoanalytic Dialogues, 11:891-912
Downs, J., (2025), ‘A shift or a substitution? On naming, exclusion and co-production in longstanding eating disorders: matters arising from Lubieniecki et al. (2025), Journal of Eating Disorders, 13:196, doi/10.1186/s40337-025-01375-y
Eddy, K. T., Tabri, N., Thomas, J. J., Murray, H. B., Keshaviah, A., Hastings, E., Edkins, K., Krishna, M., Herzog, D. B., Keel, P. K., & Franko, D. L. (2017). Recovery From Anorexia Nervosa and Bulimia Nervosa at 22-Year Follow-Up. The Journal of clinical psychiatry, 78(2), 184–189. doi.org/10.4088/JCP.15m10393
Jamieson, S. K., Tan, J., Piekunka, K., Calvert, S., & Anderson, S. (2024). Navigating the ethical complexities of severe and enduring (longstanding) eating disorders: tools for critically reflective practice and collaborative decision-making. Journal of Eating Disorders, 12(1), 134. doi.org/10.1186/s40337-024-01082-0
Kiely, L., Conti, J., & Hay, P. (2025). Severe and enduring anorexia nervosa and the proposed “Terminal anorexia” category: an expanded meta synthesis. Eating Disorders, 33(4), 460–491. doi.org/10.1080/10640266.2024.2379635
Lubieniecki, G, McGrath, I., & Sharp, G (2025), ‘A lifeline or a label? Lived experience perspectives on the severe and enduring eating disorder (SEED) classification in eating disorder treatment’, Journal of Eating Disorders, 13:136, doi/10.1186/s40337-025-01335-6
Noordenbos, G., Oldenhave, A., Muschter, J., & Terpstra, N. (2002). Characteristics and Treatment of Patients with Chronic Eating Disorders. Eating Disorders, 10(1), 15–29. doi.org/10.1080/106402602753573531
Haya, P., Dannc, K. M., & Touyzc, S. (2025). CURRENT OPINION Longstanding eating disorders: insights and innovations in severe and enduring illness. Curr Opin Psychiatry, 38, 395-401.
Robinson, P., (2009), ‘Severe and Enduring Eating Disorders (SEED), Management of Complex Presentations of Anorexia and Bulimia Nervosa’, John Wiley, Oxford, OX4 2DQ
Steinhausen, H.C., (2002), ‘The Outcome of Anorexia Nervosa in the 20th Century’, American Journal of Psychiatry, 159:1284-1293