A shift or a substitution? On naming, exclusion, and co-production in longstanding eating disorders: matters arising from Lubieniecki et al. (2025)

This Matters Arising piece responds to the article by Lubieniecki et al. (2025), which explores lived experience perspectives on the ‘SEED’ (Severe and Enduring Eating Disorder) classification. Written from the standpoint of someone with lived experience of a longstanding eating disorder and professional involvement in research, policy, and service development, the piece supports Lubieniecki et al.’s analysis of ‘SEED’ as both validating and restrictive. It extends their work by situating the classification within a broader landscape of psychiatric labelling associated with treatment exclusion. The limitations of replacing ‘SEED’ with alternative terminology alone are considered, with emphasis on the need for corresponding reforms to care pathways and their provision. The author highlights how diagnostic language can serve not only descriptive but also administrative and prognostic functions, often reflecting institutional constraints rather than individual need. The importance of co-produced approaches to diagnostic frameworks is also discussed, with emphasis on embedding lived experience throughout classificationand service design. This article responds to a recent study that asked people with long-term eating disorders how they feel about the term ‘SEED’, short for “Severe and Enduring Eating Disorder.” The study found that while some found the label helpful, many felt it was limiting and made assumptions about whether they could get better. Drawing on my own personal experience and professional work in the field, I agree that labels like ‘SEED’ can be both validating and harmful, and argue that we must look at how diagnostic language affects not only identity, but also access to treatment. The article highlights that such terms often reflect pressures within the healthcare system, like staff burnout and lack of resources, more than they reflect patients’ actual needs. The author calls for services to move beyond simple label changes and to develop better, more compassionate pathways for people with long-term eating disorders. This includes involving people with lived experience in designing the language and systems that shape their care. Ultimately, the piece urges a shift towards more ethical, flexible, and inclusive ways of thinking about diagnosis, treatment, and recovery.