Holding Hope: Rethinking Care for Longstanding Eating Disorders

People living with eating disorders that have persisted for many years are frequently described in clinical settings as ‘treatment-resistant’, a label that quietly reshapes the care they receive. A new commentary published in the Journal of Eating Disorders argues that this framing is not only inaccurate but potentially harmful, because it can push clinicians away from recovery-oriented treatment and toward approaches that, for many patients, do not foster recovery at all. The paper, written by Alykhan Asaria, an independent lived experience researcher based in London, proposes an alternative framework called recovery-fostering care (RFC), built on five guiding principles designed to keep hope alive without demanding recovery as a condition of receiving compassionate care.

The commentary is the culmination of a series of articles that began unexpectedly, when a private letter to a clinician-researcher was encouraged into a peer-reviewed publication. Asaria writes from a position rarely represented in academic literature: that of someone with longstanding illness who has been labelled ‘treatment-resistant’ and has experienced the fear generated by newer terminology such as ‘terminal anorexia nervosa’. Notably, the lead author of the 2022 proposal that introduced the concept of ‘terminal anorexia nervosa’ has since expressly disavowed the phrase, a development Asaria highlights as evidence that the conceptual spectrum running from ‘treatment resistance’ to ‘terminality’ deserves urgent scrutiny.

At the heart of the argument is a challenge to the assumption embedded in the term ‘treatment resistance’: that non-response to therapy reflects a limitation within the patient rather than limitations in the care provided. Asaria asks a series of pointed questions. Should someone be called treatment-resistant if the treatment they received addressed physical risk only, without appropriate psychological care? What if the treatment was poorly delivered, of insufficient duration, or mismatched to their needs? Should expressions of pain, trauma, or iatrogenic harm be recast as ‘resistance’? The answer offered to each question is an emphatic no. A related critique targets the term ‘ego-syntonic’, which implies that an eating disorder is experienced as harmonious with the person’s entire personality and that their resistance to treatment is therefore voluntary. Asaria argues this functions as a form of volitional stigma, denying the tangled internal identity conflicts that many people experience and that are extremely difficult to articulate, particularly during acute phases of illness when thinking is clouded and alexithymia, the difficulty identifying and expressing emotions, may be pronounced.

The terminology debate matters because it shapes real clinical pathways. When patients are perceived as wilfully resistant, clinicians face what bioethicists have framed as a dilemma: whether to persist with recovery-focused treatment or shift to harm reduction and palliative care approaches. Asaria’s concern is that this creates a perceived binary choice between recovery-focused and non-recovery-focused pathways, especially within under-resourced health systems where highly tailored care may not be realistic. In an open letter to the Chief Executive of NHS England, Asaria argued that recovery and harm reduction are not mutually exclusive, and that a recovery pathway should unconditionally involve harm-reduction strategies when necessary, alongside professionals who hold hope for their patients even when patients struggle to carry it themselves.

The commentary raises specific technical concerns about applying harm reduction, originally developed for substance use disorders, to eating disorders. There are no consensus guidelines governing its use in this context, and the two categories of illness remain distinct in both the DSM-5 and ICD-11 classification systems. The physiological risks of nutritional compromise are substantial and unevenly distributed: a calorie intake and body mass index tolerable for one person whose body has adapted to prolonged starvation may be imminently life-threatening for another. Neuroimaging evidence sharpens the stakes. The ENIGMA Eating Disorders Working Group identified grey matter deficits in underweight and partially weight-restored individuals with anorexia nervosa, including cortical thinning exceeding that seen in any other psychiatric disorder studied, and a meta-analysis found a persistent 1.98% reduction in grey matter volume even among people recovered for more than 18 months. Bone health is similarly vulnerable, with osteoporosis that may be reversible in adolescence becoming extremely difficult to reverse after skeletal development stops. Asaria also warns that harm reduction, without professional oversight and clear boundaries, can drift into an ambiguous middle ground between pro-recovery and pro-illness positions, a concern reinforced by research on TikTok recovery content containing mixed signals.

Palliative care raises parallel difficulties. Unlike cancer, which is widely recognised as capable of becoming incurable, active eating disorder treatments are typically provided with the expectation of recovery within a limited timeframe, making genuine clinical agnosticism about prognosis difficult to achieve. Asaria distinguishes between compassionate end-of-life palliative care, which constitutes an ethical duty owed to anyone dying from malnutrition secondary to any illness, and broader palliative ‘models’ applied across populations of people who are not dying. The practicalities compound the concern: palliative care services globally are severely under-resourced, with the World Health Organization estimating that only 14% of people who need end-of-life palliative care currently receive it. There is also a hazardous conceptual overlap, since harm reduction and palliative care components can be blended, leaving unclear at what point one approach becomes the other.

Against this backdrop, the proposed recovery-fostering care framework offers five principles: holding hope for meaningful recovery and enabling opportunities for it; building therapeutic alliances; formulation-based and epistemically just care; unconditional safeguarding; and supporting caregivers. RFC is explicitly not a scientific model with the specification demanded of academic frameworks. It is a creative, flexible, person-led approach that prioritises lived experience over strict adherence to manuals and values humanity-based care alongside evidence-based care. Recovery within RFC is defined by the individual, may be understood as an evolving, non-linear journey of healing without time limits, and does not require the complete absence of symptoms to be meaningful.

The practical expression of RFC is strikingly concrete. Supported meaningful activities might involve accompanying a patient to cafés, museums, parks, or volunteering organisations; mindful walking that attends to sensory experience; or creative pursuits ranging from painting and photography to poetry and music, many of which cost relatively little compared with other areas of eating disorder expenditure. These activities can carry an exposure-like effect, helping people re-engage with situations long avoided, and they create contexts for relational care that may be more therapeutic than the activity itself. Walking side by side, Asaria notes, can be easier for people who struggle with eye contact than sitting opposite a clinician in an appointment room. The framework’s relational core is distilled into the acronym CHEAP: Compassion, Hope, Empathy, Appreciation, and Patience. These values require no specialist resources or training, only humanity, which Asaria calls the most accessible and affordable resource in eating disorder care, recalling a friend of a person who died with an eating disorder who felt some professionals seemed to ‘hide behind a lack of funding’.

Formulation-based care operationalises epistemic justice: the recognition that diagnostic manuals know less about the patient than the patient knows about themselves. Collaborative case formulations, potentially structured around the ‘Five Ps’ model of presenting, predisposing, precipitating, perpetuating, and protective factors, become a lived experience-based guide prioritised over treatment manuals derived from populations that may not represent the individual patient. Care plans and safety plans are explicitly combined into ‘care/safety plans’ to signal that safeguarding is unconditional, and harm reduction is repositioned as a clinician-supervised safeguarding intervention within a broader recovery-fostering approach rather than an overall model of care. Caregivers, meanwhile, are recognised as people with direct lived experience deserving care in their own right, with dedicated caregiver support plans and tailored resources for sibling and partner caregivers whose contributions are often overlooked.

The commentary closes with cross-cutting standards: nutritional counselling rather than mere education, health monitoring that includes quality of life and social functioning, weighing practices that never make access to care contingent on body mass index, and clinical training that addresses the needs of underserved groups in developmentally appropriate, identity-affirming, neurodiversity-affirming, and trauma-informed ways. Asaria acknowledges the structural obstacles that rigid healthcare systems pose to such flexibility, but argues that inflexibility should be treated as a problem to be solved through creative thinking rather than a permanent barrier. Whether the field embraces recovery-fostering care or continues down pathways that quietly abandon the possibility of recovery may depend on accepting the paper’s central claim: that delivering care with compassion, hope, empathy, appreciation, and patience should never be considered unaffordable.

Subject of Research: Lived experience perspectives on care approaches and recovery-fostering care for people with longstanding eating disorders

Article Title: Care approaches for people with longstanding eating disorders: a lived experience perspective on the need for recovery-fostering care

Article References: Asaria, A. (2026). Care approaches for people with longstanding eating disorders: a lived experience perspective on the need for recovery-fostering care. Journal of Eating Disorders, 14(1), Article 237. https://doi.org/10.1186/s40337-026-01786-5

Image Credits: AI Generated

DOI: 10.1186/s40337-026-01786-5

Keywords: eating disorders, anorexia nervosa, treatment resistance, recovery-fostering care, harm reduction, palliative care, lived experience, therapeutic alliance, epistemic justice, safeguarding, caregivers, mental health