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Severe and Enduring Eating Disorders

By Anthea Fursland, PhD FAED

This is an important and serious topic – for patients, families, clinicians and researchers. I think it is so critical because of the following:

  • Eating disorders (EDs) are debilitating illnesses, robbing people of a full life, and affecting their families and loved ones.
  • Having a chronic ED is more likely if the person was not diagnosed or treated early enough, or not treated appropriately.
  • It’s too easy to lose hope and give up on people whose cognitions are so entrenched after years of having both a starved brain and a complex mental disorder. Caring for them and treating them takes endurance!
  • Most people with chronic EDs will likely not recover with time-limited evidence-based treatment alone, and we need to be creative and responsive.

However important, this topic is fraught with disagreements and confusion. I will highlight some of the complexities, but I would like to reiterate that all clinicians working in the field of longstanding EDs, whatever their views, are working towards the same end: to help people and their families live lives that are less affected by the ED.

In the following discussion I will focus mainly on severe and enduring anorexia nervosa (SEAN) because most research and writing covering this topic is on AN. However, I recognise that all EDs, if not recognised and treated appropriately, can become longstanding. I will use this term, “severe and enduring”, although there are several other labels that are used, such as chronic, longstanding, enduring, severe.

How do we define “SEAN”? Hay and Touyz (2018) identified three components:

  • A persistent state of dietary restriction, underweight, and overvaluation of weight/shape with functional impairment.
  • Duration of >3 years of AN.
  • Exposure to at least two evidence-based treatments appropriately delivered together with a diagnostic assessment and formulation that incorporates an assessment of the person’s eating disorder health literacy and stage of change.

But what about a 17 year-old with a 4 year history of AN, who has received well-delivered FBT and CBT-E and is still in the throes of her disorder? Do we label her as having “SEAN” and if so, do we give up on the goal of full recovery for her?

When should we label AN as SEAN – or should we at all? Clinicians disagree and various suggestions have been made: at least 3 years, at least 7 years, at least 10 years…or maybe never.

We know that many patients with longstanding EDs appear to be not ready to change. But we also know that chronic malnutrition leads to neuroprogression and reduced neuroplasticity in the brain, which makes new learning and cognitive changes more challenging (Kan & Treasure, 2019). This is why clinicians need to get creative. The rationale for using the SEAN label is to provide appropriate care for those whose ED has persisted, and to tailor this treatment if appropriate. However, “One of the challenges in tailoring treatment for individuals with SE-AN is that treatments that focus on both physical and psychological recovery run the risk of misalignment with patient aims and readiness for recovery, resulting in high drop-out” (Wonderlich et al., 2012).

Preventing SEAN

Unfortunately, there is no evidence for early identification of those who go on to develop SEAN. All we know is that common features in SEAN are: driven exercise; lower BMI, maturity fears, older age at hospital admission; failure to respond to early tx; adverse early life. (Kaplan & Strober, 2018)

Recovering from SEAN

Recent qualitative research involving people recovered from AN suggests that recovery from SEAN involves four phases: a) Being unable/unready to change; b) Experiencing a tipping point where motivation increases and changes; c) Active pursuit of recovery; d) Reflection & rehabilitation (Dawson, Rhodes & Touyz, 2014)

The one randomized control study on SEAN (Touyz et al., 2013) show that people can make substantial improvements in quality of life when weight regain is not the main goal. But is this what we should be aiming for?

Now for the good news!

  • Wentz et al. (2007) followed up those with teenage onset, 18 years later and found that 88% had fully recovered although many had psychiatric co-morbidities.
  • Patients with or without SE-AN did not differ significantly on treatment outcomes following inpatient CBT-E. (Calugi et al, 2017).
  • The Massachusetts General Hospital followed up women with AN and bulimia nervosa (BN) over 25 years. After 10 years, 68% of those with BN had recovered, compared with only 31% of those with AN. However, after 25 years, the recovery rate for BN had remained the same, whereas the recovery rate for those with AN was now 63%. So recovery after 10 years is indeed possible. The authors conclude: “the majority will recover from AN and BN over time. Yet 2 decades of illness represents considerably meaningful life lost, and our findings emphasize the importance of developing interventions to reduce the duration of illness. Our findings that recovery remains possible even after long-term illness argue for active treatment rather than palliative care for most patients.” (Eddy et al., 2017).
  • At CCI in Australia, we looked at all patients who had been referred for AN and treated with CBT-E. We found only two associations between AN duration/severity and outcome, both at odds with assumptions about SEAN:
  • Lower pre-treatment BMI was associated with greater improvement in BMI.
  • Those who had their disorder shortest or longest were more likely to remain in treatment.

We concluded that there is no meaningful cluster of symptoms that constitutes SEAN. Therefore the treatment approach should be the same, regardless of illness duration or severity: we shouldn’t be removing critical components of evidence-based treatments (e.g., focus on renourishment, self-monitoring etc.). People with an eating disorder of >10 years did just as well in treatment (where weight normalization was a central goal) as those with a shorter duration. These findings offer hope for individuals affected by AN and are a timely reminder to clinicians to administer evidence-supported treatments such as CBT-E, regardless of duration or severity of illness.” (Raykos et al., 2018)

We must not give up hope. While some EDs remit quickly, others may take years to remit. Families have every right to demand evidence-based treatments for their loved ones, whatever the length and severity of their disorder. Meanwhile clinicians and researchers, together with those affected by EDs (clients and families) need to continue searching for better treatments (e.g., Murray et al., 2019; Kan & Treasure, 2019).

References

Calugi, S., El Ghoch, M., & Dalle Grave, R. (2017). Intensive enhanced cog-

nitive behavioural therapy for severe and enduring anorexia nervosa: A longitudinal outcome study. Behaviour Research and Therapy, 89, 41–48. https://doi.org/10.1016/j.brat.2016.11.006

Dawson L., Rhodes P. & Touyz, S. (2014) “Doing the Impossible”: The Process of Recovery From Chronic Anorexia Nervosa. Qualitative Health Research, Vol. 24(4) 494–505

Eddy, K. T., Tabri, N., Thomas, J. J., Murray, H. B., Keshaviah, A., Hastings, E., … 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. https://doi.org/10.4088/JCP.15m10393

https://doi.org/10.1002/eat.22736

Hay, P., Touyz, S., & Sud, R. (2012). Treatment for severe and enduring anorexia nervosa: A review. The Australian and New Zealand Journal of Psychiatry, 46(12), 1136–1144. https://doi.org/10.1177/0004867412450469

Hay, P., & Touyz, S. (2018). Classification challenges in the field of eating disorders: Can severe and enduring anorexia nervosa be better defined? Journal of Eating Disorders, 6, 41. https://doi.org/10.1186/ s40337-018-0229-8

Kan C. & Treasure, J. (2019) Recent Research and Personalized Treatment of Anorexia Nervosa. Psychiatr Clin North Am Mar;42(1):11-19. doi: 10.1016/j.psc.2018.10.010

Kaplan, A. S. & Strober, M., 2018 Severe and enduring anorexia nervosa: Can risk of persisting illness be identified, and prevented, in young patients? International Journal of Eating Disorders,  DOI: 10.1002/eat.23019

Murray S.B., Quintana D.S., Loeb K.L., Griffiths S., Le Grange D. (2019) Treatment outcomes for anorexia nervosa: a systematic review and meta-analysis of randomized controlled trials. Psychol Med. 2019 Mar; 49(4):701-704. doi: 10.1017/S0033291718003185.

Raykos, B. C., Erceg-Hurn, D. M., McEvoy, P. M., Fursland, A., & Waller, G. (2018). Severe and enduring anorexia nervosa? Illness severity and duration are unrelated to outcomes from cognitive behaviour therapy. Journal of Consulting and Clinical Psychology, 86(8), 702–709. https:// doi.org/10.1037/ccp0000319

Touyz, S., Le Grange, D., Lacey, H., Hay, P., Smith, R., Maguire, S., … Crosby, R. D. (2013). Treating severe and enduring anorexia nervosa: A randomized controlled trial. Psychological Medicine, 43(12), 2501–2511. https://doi.org/10.1017/s0033291713000949

Wentz E, Mellström D, Gillberg IC, et al. (2007) Brief report: Decreased bone mineral density as a long-term complication of teenage-onset anorexia nervosa. European Eating Disorders Review 15: 290–295.

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10 Comments

  1. Susan

    My daughter has SUFFERED for 20 years, plus from 11 years some Ed problems, increasing with time.
    How do I understand/ treat my loved one / what is her future health prediction I need to know, all I try to do is be patient & kind, I fail, workshops to teach me are a comfort but do not help my daughter, or me really, I. Can’t remember the advise in the heat of the moment,
    She had a fit at Christmas, I need to know what this signifies, thank you

  2. Lois Zagrodzki

    I understand your frustration as my daughter continues to suffer after 13plus years. Basically, all we can do is continue to support them and love them. My daughter has been suggesting I get therapy in hopes of being a better support for her. I feel selfish doing that with all that’s happening today but have reached out to a therapist. We’re only human…

  3. Jennifer Aviles

    To Lois and Susan – i understand your frustration. I connected with an excellent therapist who has helped me establish boundaries to make sure I am taking care of my self,to learn how to effectively step in when needed, and how to put imaginary duct tape over my mouth when it is best to remain silent. I think it is very important to be sure that a comprehensive evaluation is done by a psychiatrist to rule out any co-existing diagnoses like eg anxiety disorder, depression, Fluctuating mood disorders and to make sure your young or older adults are receiving treatment or medicine for those as well. Substance use can be a debilitating factor for those who have looked for relief when none can be found. That needs to be addressed too. For those whose family members are considerably older (mine is 47 and was diagnosed at 15) and who absolutely refuse any further treatment, may I suggest that you explore wrap around treatment services for your loved one – social worker, therapist, nurse practitioner/PCP, psychiatrist, and possibly occupational Therapist. A similar team is often set up for those seeking palliative care as explained by Dr. Jennifer Gaudiani in her book Sick Enough pp 232-242.

  4. LINDA

    Thank you so very much for writing about the topic of Severe & Enduring Eating Disorders. Thankfully experts are starting to look seriously at this group of suffering individuals and their families. My daughter most likely had early onset (age 9) AN-BP but wasn’t diagnosed until age 15. Despite 10+ years of constant treatment she still has many struggles. Co-occurring disorders can make the situation even more complicated. It is very hard for the family and the person suffering from ED to hear “she isn’t better by now?” Why not? Must be you need a new doctor, therapist etc.! Or…”they have to want to get better”. (Ugh). Thankfully researchers are also taking a closer look at enduring ED because people do recover from eating disorders….sometimes many years later. It is never too late to keep on keeping on….with research and definitely individualized therapies. Sometimes the recovery is not linear and not obvious but may still be there ever so slowly. Therapy for the supporting loved ones is essential because the long haul takes a toll. I am looking forward to any new research on this topic.

  5. determined

    Thanks for sharing this article . While there was some encouraging data to say that long haulers can improve even after yrs. my frustration with finding trx. hasn’t ..I’m not sure how most families can afford to pay for all the disciplines involved in trx.that is needed ie The psych, the counselor and the dietician for the long term ,when most,specialty ED trained ones refuse insurance … at least that’s what’s it’s like here in South East Florida, I don’t know how others who are not even near cities can manage to find help if we cannot find ANYONE with ed training who accepts insurance here. . When your talking about a long term sufferer who has not been able to function or work and you are supporting them , have exhausted your retirement savings and now with covid demand, even basic generalized therapists are not available ? Then on top of those issues when they have poor insight, the fear about gaining weight and thee comorbid anxiety prevents them from taking anti anxiety
    /ssris meds are all fighting against you. What is a mother to do ? As a RN I have prob. read and studied researched everything I could get my hands on , almost every evidenced based science journal re EDs , Anxiety disorders BDD, OCD and 15 yrs later I still can’t find adequate affordable help or answers …
    Sorry for the rant just need to vent to people who know what I’m talking about . My 31 yr old daughter texted me last night as she has on several days in the last several months and told me she “just wants to die” bc she “can’t stand the thought of gaining weight that will happen if agrees to get treatment for her severe flaring anxiety and depression as she watches herself get older she “hates herself” more says she’s a complete failure her boyfriend is fed up,He has tuned out ( understandable) but ,he is generally unsupportive,She wants to leave as she feels so unwanted but has no where to go,no money,no purpose … she is so lonely she tells me , her friends have moved away or are all having babies and lives of their own . Covid doesn’t help that even if she wanted to she couldn’t join a support group in person . I am the only one she has to confide in, no siblings all our extended family lives in Canada and she says she’s done and just wants out …😥

    • Vicky Reszetnik

      Hello Determined

      Oh I hear, feel and live your pain…it is just barely tolerable for both your daughter and you, as her mom. We live in Toronto so when I saw you have family in Canada I felt my heart leap. I am sincerely so sorry for this ongoing suffering. We too have lived with the challenges of our daughter fighting for her life since she was 11yo (now 26); she’s tried to end her life twice; I know she doesn’t want to die but she’s terrified of living on like this. As a family. we have tried every treatment option – residential, hospital; CBT, EFFT; Maudsley, across North America. Compassion has been my motto but I am running out of options. Please know you can call me; we can NOT do this alone!!

      • Doreen

        Hi Vicky. I am from Cambridge. I would LOVE to hear from you. I have been fighting this with my daughter for over 23 years now and she is so close to either going insane or dying.

    • Doreen

      I am from Canad and honest to God understand where you are coming from. My daughter is 37 and has an ed since she’s been 14 years. Was only 200 hours away from receiving her Bachelor of Science in Nursing when she gave it all up. Went on disability and lives like a hermit. I am the only one she talks to other then her Dr. once a week. Thank God I have more patience lately b/c of how severe she has become. I don’t know if I am coming or going most of the time.
      My heart goes out to you.
      God Bless from Ontario Canada

  6. Eva Musby

    Wow! “Therefore the treatment approach should be the same, regardless of illness duration or severity: we shouldn’t be removing critical components of evidence-based treatments”
    That is really important information.

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