This document discusses severe and enduring eating disorders (SEED). SEED is defined as a chronic eating disorder lasting over 10 years with at least one unsuccessful evidence-based treatment attempt and significant impairment. Prevalence is estimated at 40 per million. Case examples are provided of individuals with SEED demonstrating chronicity, multiple treatment attempts, medical complications, and comorbidities like depression. Theories for why people do not recover include biological predispositions, psychological factors like trauma, and abnormal reward processing in the brain related to starvation. Treatment aims to improve quality of life through harm minimization and engagement rather than weight gain. A randomized trial found specialist supportive clinical management improved outcomes over CBT. Future directions include managing comorbidities, family support

1. Severe and Enduring Eating
Disorder - SEED
Dr Jaap Hamelijnck
Consultant Psychiatrist
Anne Clement
Support Worker

2. Introduction
What is SEED
How common is it
Some examples from our service
Complications
Hypothesis
Discussion

3. Definition
1. Chronic eating disorder, consisting on AN,
restricting or binging/purging type, EDNOS
2. Being consistently ill for more than 10 years
(7years)
3. Undergoing at least one unsuccessful evidence-
based treatment
4. having severe impairment across a number of life
domains
5. having a strong motivation to hold onto AN, and
thus a reluctance to continue active treatment.

4. Prevalence
• “perhaps 40 per million population”
• Our team has 5 (out of caseload of 20)

5. Case 1,
Late fifties with AN all her adult life, lives with her
husband, no children due to AN and not been able
to work for last 15 years
Multiple admissions, not able to maintain her weight
in community over longer period of time, BMI 13
Multiple psychotherapy attempts, different
modalities
Current care plan; short term, planned admissions
for limited weight restoration

6. Case 2,
Currently inpatient at general hospital, BMI 13
20 year history of AN, chronic relapsing course
Discharged herself last year from specialist in-
patient unit because worried she puts on too much
weight
Living at home with parents
Recurrent severe depression

7. Case 3,
Age 32, 10 year history of AN with binging purging
type, currently at home BMI about 15
Severe osteoporosis
Recurrent admissions to general hospital following
collapse due to dehydration and electrolyte
disturbances
Several years of therapy, including CAT and NLP
Bipolar affective disorder

8. Case 4,
>10 year history of AN with severe OCD
Several admissions, most recent under section 3
after severe malnutrition in community
2 children supportive family
Sugar rich diet
Exercise and restriction to control weight

9. Hypothesis; why do people not
get better?
Biological/genetic
• Predisposition to a particular cognitive style or
personality characteristics (narcissism)
• Many mental disorders are chronic/episodic (i.e. OCD)
• Co-morbidities make it more likely that the eating
disorder becomes chronic (personality disorders,
depression/bipolar, OCD)
• Reward / addictive behaviours (repeated cycles of
starvation / binging may impact on reward system)

10. Hypothesis; why do people not
get better?
Psychological/social
• Trauma and attachment disorders (trust)
• Primary/secondary gain (conflict theory,
dependence)
• Family (role of illness in family conflicts)
• Financial/economical
• Fear of becoming an adult (intimacy,
responsibility)
• Inability for change (ASD)

11. Narcissism
Over confidence
Heightened sense of entitlement,
Special
Inflated self-importance
Dysempathy for others
Hypersensitivity to criticism
Proneness to deflation of self esteem
Protect a vulnerable ego
Create a deceptive allure of self-assurance, self-sufficiency or
grandiosity
Envious of others or think others are envious of him/her

12. Impact on engagement
Nothing is good enough
Elevating people followed by rubbishing them
Not taking risks, maintaining status quo (protecting self, avoiding
failure)
Perfectionist
Need of mastery (I will do it only if I am the best or perfect)
Over controlling obsessive stance
Attention seeking
Unable to tolerate negative cognitions
Avoiding loss or separation (I will leave you before you leave me)
Narcissistic hurt (feeling let down by the slightest criticism)
Eating disorder patients increased trait narcissism
A controlled study of trait narcissism in anorexia and bulimia nervosa. Steiger et al.
International journal of eating disorders; 1997.

13. Final Conclusion (Janet Treasure
lecture on ASD and AN 2011)
AN & ASD share weak coherence and this may be
a risk factor possibly associated with OCPD traits.
Starvation increases rigidity & OCPD traits.
Starvation decreases social cognition.
Starvation decreases emotional regulation.
Starvation shifts reward from people onto food
alone.
People with acute AN resemble ASD
People with ASD are at risk of eating disorders

14. Abnormal Reward processing
in anorexia nervosa
Patients with AN have an impaired ability to experience pleasure
or reward (anhedonia)
Patients’ engagement in illness behaviour is proposed to alleviate
and anhedonic or dysphonic mood state
Taste-reward tasks; split into “liking” and “wanting”
Wanting is “incentive salience” quality of a stimulus that makes it a
desirable and attractive goal, transforming it from a mere sensory
experience into something that commands attention, induces
approach, and causes it to be sought out.
"liking" is a pleasure immediately gained from consumption
AN patients prefer sweet stimuli, HC preference for high fat stimuli
AN patients “like” a food but do not “want it”, do not enjoy
pleasurably stimuli in the same way as HC (partial reward)

15. Abnormal Reward processing
in AN
Aversion toward high fat or sweet foods in consistent with a fear of
weight gain
Any process of behavioural reinforcement is an example of
conditioning (linked with dopamine)
AN is an illness characterised by behaviours that have become
reinforced in a manner that has become pathological.
Development of reward linked behaviours (involving conditioning
and reinforcement) for example patients find emaciated body
images and self-starvation reinforcing and rewarding.
patients engage in starvation to relieve anhedonia and thus
develop dependence on this mechanism. (reward dysfunction,
become “addicted” to starvation)
Eating rituals reduce anxiety/fear (negative reinforcement or
reduced bad feelings, like OCD)
Reward processing in anorexia nervosa;
Neuropsychologia, 50(2012), 567-575

16. Treatment aims
Focus on keeping people in services
Improved quality of life
Harm minimisation
Avoidance of further failure experiences
Increasing motivation levels
Manage neuro-cognitive complications
improving self-view and lifestyle that has been
dominated by illness
Improve physical well being
treating severe and enduring anorexia nervosa: a randomized controlled
trial. Touyz et al, Psychological Medicine (2013), 43, 2501-2511

17. RCT Touyz et al.
Severe and enduring anorexia nervosa >7years
30 individual treatment sessions provided over 8 months in
outpatient setting
2 treatment arms; CBT-AN and SSCM
CBT-AN protocol by Pike (2003), focus on the cognitive and
behavioural disturbances linked to the core features on AN and
more global including motivational and schema work, weight gain
and recovery were not treatment priorities
SSCM (specialist supportive clinical management) includes
education, care and support, fostering therapeutic relationship that
promotes adherence to treatment. Praise, reassurance and
advice. Weight gain not a priority, patients encouraged to improve
their quality of life and physical well being.
treating severe and enduring anorexia nervosa: a randomized controlled
trial. Touyz et al, Psychological Medicine (2013), 43, 2501-2511

18. Results of RCT
No difference in increase of BMI (minimal)
Improvement in health related quality of life,
depression and social adjustment larger for SSCM
ED symptoms and readiness for change larger for
CBT-AN
Both treatment groups demonstrated significant
improvements
treating severe and enduring anorexia nervosa: a randomized controlled
trial. Touyz et al, Psychological Medicine (2013), 43, 2501-2511

19. Future directions
• Minimal weight restoration
• Least harmful principle (binging/purging less
harmful than starvation)
• Engagement most important (whole team
engagement)
• Managing co-morbidity
• Family/carer support
• Encourage enjoyment, relieve boredom
• “Coaching”

20. “Coaching” in eating disorders
Help you achieve specific goals
Help individual reach their fullest potential in life
Coaching seeks to address the daily challenges of living with ED
A coach helps people with ED carry out the practical activities of
daily life in an organized, goal-oriented, and timely fashion
Through a close partnership, an ED coach helps the client learn
practical skills and initiate change in his or her daily life
A coach may help an adult with ED:
• Maintain focus to achieve identified goals
• Translate abstract goals into concrete actions
• Build motivation and learn to use rewards effectively

21. Coaching in ED (continued)
Through regular interactions, coaches learn how the symptoms of
ED play out in the daily lives of their clients and then provide
encouragement, recommendations, feedback, and practical
techniques to address specific challenges
Coaches ask questions to help the client come up with strategies
and act on them. Examples of such questions are:
• What can you do about it?
• How can you motivate yourself to take action towards this goal?
• When must this action be completed?
• What steps have you taken already, and when will you take the
remaining steps?
Coaching is not “therapy” but dealing with problems in everyday
living