Severe and Enduring Eating Disorders: Clarifying the Facts About SEED, SE-AN, and Terminal Anorexia

The term severe and enduring eating disorder has started to appear in more places — clinical notes, research papers, even news stories. You might have heard it from a doctor, read it in an article, or seen it used to explain why certain treatments are no longer being offered. But what does it actually mean?

Although it sounds definitive, it is not a formal diagnosis. The label was originally introduced by researchers studying people who had lived with eating disorders for many years and had not responded to treatment. Since then, its use has expanded—  sometimes in ways that carry serious consequences.

If you’ve come across this term in relation to yourself or someone you care about, it’s worth looking closely at where it came from, how it’s being used, and what the evidence really says about treatment and recovery.

What is the Definition of Severe and Enduring Eating Disorder (SEED)?

The terms severe and enduring anorexia (SE-AN) and severe and enduring eating disorder (SEED) are often used to describe people who have been seriously unwell for many years and haven’t yet recovered with treatment. Most researchers agree on three general features: long illness duration, clinical severity, and limited treatment response. But beyond definitions vary. Some studies use a three-year cutoff to define “enduring.” Others say ten. Some require a history of evidence-based treatment; others don’t.

Because there’s no consensus definition, it’s hard to say whether SEED and SE-AN describe a distinct population, a stage of illness, or just the longer course of illness that many people with eating disorders experience. Neither term is recognized in formal diagnostic manuals like the DSM or ICD, yet both are widely used in clinical practice. Sometimes they’re used to explain changes in the focus of treatment — shifting efforts away from weight restoration to quality of life, or even toward palliative care. Unfortunately, in some cases, the label comes with an implicit suggestion: that recovery is unlikely, or that treatment aimed at full recovery is no longer worth pursuing. 

Recovery from Severe and Enduring Eating Disorders: What We Know

It is often assumed that people who remain ill for many years are unlikely to recover. But research suggests otherwise. In one 22-year follow-up study, more than half of those who had not recovered by year nine eventually did. Duration of illness is not a reliable predictor of outcome, and we currently have no way to know who will recover and who will not.

People with longstanding eating disorders often face more complex challenges. Many have experienced repeated hospitalizations, involuntary treatment, and have lost trust in services. Medical complications can be severe and may be compounded by social isolation, unemployment, or untreated comorbidities. But none of this implies futility. Rather, it underscores the need for active and sustained treatment, more coordination across services, and novel approaches to care that help people rebuild a life worth recovering for.

From Severe and Enduring Anorexia to Terminal Anorexia

The terms SEED and SE-AN were developed to help researchers understand and develop treatment approaches to support people with longstanding illness. But in recent years, their use has extended beyond that remit. In 2022, a controversial paper proposed a new clinical category —“terminal anorexia” — and argued that a subset of individuals with SE-AN should be considered terminally ill and eligible for assisted death. The paper cited recognition that “further treatment would be futile” as justification for viewing anorexia as a terminal condition.

Following its publication, we conducted a systematic review of assisted death among people with eating disorders across jurisdictions where the practice is legal. Our aim was to understand how many such cases had occurred and the medical reasoning that was used to determine eligibility. In nearly half of the cases we reviewed, terms such as SEED, SE-AN, or “terminal anorexia” were cited to suggest individuals were unlikely to recover and that assisted death was therefore warranted.

Many of these individuals had experienced long illness histories. But others were strikingly young — a third were in their teens and twenties — and most were living with co-occurring mental health difficulties. Over half were described as chronically suicidal; nearly 90% were depressed. In some cases, the language of SE-AN appeared to shape decisions to discontinue treatment, even when there were options that had not yet been tried.

Can People with Severe and Enduring Eating Disorders Recover?

There is a widespread perception that people labelled with SE-AN are unlikely to recover, and in under-resourced healthcare systems, there may be perverse incentives to focus treatment on those thought more likely to benefit. But this overlooks the gaps in care that often precede the label. And it is not supported by evidence. Longitudinal research shows that recovery takes time and remains possible even after many years. Crucially, we have no reliable way to predict who will recover and who won’t.

What the evidence shows is this: recovery is possible, even after many years. When people die of eating disorders, it is most often due to the consequences of long-term, under-treated illness, not because the illness was untreatable. Many of those now described as “severe and enduring” may have remained unwell not because they were untreatable, but because the treatment they needed wasn’t there.

If you or someone you know is struggling with an eating disorder, know that support is available.

At Eat Breathe Thrive, we offer free courses for people in recovery and professional trainings for those supporting them. Find an upcoming course or training here.