Treating Severe and Enduring Anorexia Nervosa–Finally, a bit of hope?

In March, I attended the London International Eating Disorders Conference. This past weekend, I finally organized the last of my papers from the conference (After the conference, I was on vacation and then at a journalism fellowship, so I wasn’t home to do any organizing, hence the long delay) and found some notes I took from a session on a new treatment for severe and enduring anorexia nervosa. I had just started to write-up this post when I saw that the clinical trial results had just been published in Psychological Medicine (Touyz et al., 2013).

So, hot off the presses, here is the lowdown on the study.

What is severe and enduring anorexia nervosa?

For the purposes of this trial, SE-AN (as it is abbreviated) was defined as meeting the DSM-IV criteria for AN (minus the amenorrhea criteria) for at least seven years. It is unclear whether they might have not met DSM-IV criteria for short periods during hospitalizations, etc. Although that seems to me to be an arbitrarily low cut-off point for SE-AN, the researchers explained that most other treatment trials for AN have not attempted to treat patients who have been ill for longer than seven years.

The authors explained that

Such individuals merit research attention as they have the highest mortality rate of any mental illness, and they suffer significant medical co-morbidity. Patients with SE-AN also have high levels of disability, often being under- or unemployed, supported by health benefit plans, and they can become a significant burden to parents, carers and health-care funders.

The researchers compared two treatments: CBT for AN and Specialist Supportive Clinical Management (CBT-AN and SSCM, respectively). Some differences between the two treatments in the table below:

 Comparison of cognitive behavioral therapy (CBT-AN) and specialist supportive clinical management (SSCM) as modified in this study for treatment of severe and enduring anorexia nervosa (SE-AN). Adapted from Touyz et al., 2013. DOI: 10.1017/S0033291713000949
CBT-AN SSCM
Patients receive motivational enhancement therapy strategies to improve motivation/readiness for change Psychoeducational material is given and discussed to increase patient motivation
Treatment and sessions are highly structured and largely therapist directed Treatment and sessions are less structured and are based on what the patient brings to the session
Eating behaviors are directly challenged through use of behavioral experiments and cognitive strategies Changes to eating behaviors are encouraged using advice and education around nutrition rather than specific strategies
Patients are given homework in each session which relates to session content and is always followed up in the next session No homework is ever given. Patients may be sent away with educational material, but it is not necessarily raised in the next session

 

Important for this trial: weight restoration was specifically NOT emphasized. Glenn Waller piped up and noted that CBT-AN without weight gain is like a pineapple upside-down cake without pineapple. But weight gain was not the primary end goal of the trial. At the outset, the researchers didn’t even know if you could do a trial of treatment for SE-AN, given high levels of dropout, the chronicity of the disorder, and the general idea that this population was highly resistant to treatment.

The primary goals of the study were improving quality of life, mood symptoms, and social adjustment. Secondary goals were improvements in ED psychopathology, BMI, motivation for change, and healthcare burden.

Treatment sites in London and Sydney randomized 63 females with SE-AN into either CBT-AN and SSCM. The patients had to be medically stable and monitored by a physician. The researchers tried to randomize equally based on AN subtype and whether they were using psychiatric medication. Participants received 30 treatment sessions over 8 months. The average participant was 33 years old and had been ill for over 16 years. Roughly 60% had never married, 28% had children, and 28% were employed full-time. Although the paper itself didn’t present this information, my notes from the London session indicate that 61% were unemployed and 51% reported no social relationship. During the study, seven people were hospitalized and one of these refused further treatment and died. There was no information on previous treatment, number of hospitalizations, or highest/lowest illness and pre-morbid BMIs.

These were people whose lives had been blighted by AN, no doubt.

Surprisingly, 85% completed treatment and 80% participated in 6- and 12-month follow-up studies. For a treatment trial of AN, this is huge. Given that dropout rates frequently exceed 50% in trials of individual treatment of adult AN, this level of completion alone is significant. Granted, they weren’t making patients change what they feared most (eating and gaining weight), which generally causes people to bolt, but even so.

At the one-year follow-up, there were modest increases in BMI- about 0.5 or so. The patients were still significantly underweight even with the increase. Interestingly, they showed significant improvements in readiness to change, quality of life, depression symptoms, and social adjustment.

The authors conclude:

The findings of the current study suggest that CBT-AN was superior in reducing core ED symptoms at follow-up, but that both CBT-AN and SSCM contributed to improvements over time in health-related quality of life, body weight, depression and motivation to change. The magnitude of these changes ranged from moderate to large. The findings of this study should provide hope for those suffering from severe and enduring AN and also stimulate interest in the development of new psychosocial treatment approaches.

My take on the study

Given that SE-AN is generally not regarded with much hope by the treatment community (in many cases, health systems and insurance companies flat-out refuse to treat these patients, saying there’s nothing more that can be done. As this study shows, that’s total bollocks.), that researchers could keep 85% of sufferers in a nearly two-year-long study is a dramatic improvement. I think it also shows that even patients with severe, long-term anorexia frequently desperately want to get well. They avoid treatment because they’re afraid, not because they’re stubborn brats.

In the London presentation, one of the authors noted that the low dropout rates in the study may be attributed to the fact that therapists worked on areas that the patient deemed important. These areas, they noted, could then be potentially leveraged into behavior change. I think that’s important.

Weight gain is (and probably should be) an important goal of AN treatment. But it shouldn’t be the only goal. In an ideal world, the healthcare system and friends and family would all help a patient get to a weight that’s appropriate for him/her based on their previous development, and then help them learn skills to help them stay there. That, like, never happens. Even people who do well in recovery often have a treatment history that is littered with times that treatment has failed them (note: they did NOT fail treatment). Full weight restoration wasn’t emphasized early on. Family was unnecessarily alienated and pushed out of treatment.* Hospitalization came too late and discharge too early. Follow-up care was non-existent. Ditto for other types of social support. These are things that we know can help people and we just don’t do it. That’s the thing that totally, utterly frustrates me.

I have mixed feelings on the fact that weight gain wasn’t emphasized. On the one hand, I find that problematic in that you’re letting people languish in their illness. You can’t recover from AN if you don’t gain weight. On the other hand, given that many of the people in the trial didn’t have much (if anything) in the way of people to support them in their endeavors to get well, asking someone who had been seriously ill with AN for 15+ years to magically gain weight is probably a pipe dream. The medical system isn’t set up to provide the long-term, intensive support that adults with chronic AN need- and that’s just bloody sad.

As well, when I was dealing with the stresses of weight gain and recovery work, it was crucial that I had something to recover for. I needed to have some feeling that this was all going to be worth it. At first, it was really hard. I had a job, yes, but it wasn’t anything I was passionate about. Several of my jobs fed into the AN. Finding something I wanted more than the ED was a really big help. So perhaps helping these particular patients work on improving quality of life first before tackling behavior change is a smart move. It gives them a glimpse of what there is to recover for. It’s reflected in the increased readiness to change that the researchers saw in this study, I think.

The study significantly improved the quality of their lives even though BMI didn’t change. Honestly? That’s worth something, especially in this group of patients. Quality of life matters. I don’t think treatment should stop there- I think we owe it to these sufferers to keep working with them to help them keep chipping away at the ED and make significant behavioral change. I think we should try and bring in friends and family to help them as they try to do the hardest thing they will ever attempt. But even if nothing else changes, this treatment helped improve their quality of life. It’s something we didn’t have before, and it’s important.

*I do realize that not all families can and should be involved in ED treatment. But there are plenty of families who can and should be involved and frequently aren’t, either because they don’t know to be or they’re specifically told not to.

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42 Responses to “Treating Severe and Enduring Anorexia Nervosa–Finally, a bit of hope?”

  1. This is great. Improving the quality of my own life has been a HUGE motivator to recover. Like you said, if patients don’t have anything to recovery for then what is the point? I find it interesting that weight restoration was not a key factor though. Seems to me that would be extremely important, but this definitely gives me a new perspective on treatment options.

    By the way… your job sounds amazing! Traveling, writing, going to ED conferences in London. Sounds like my dream job. I’m available if you ever need a travel buddy. 🙂

  2. Carrie Arnold May 7, 2013 at 10:39 pm

    I do think weight restoration is important, and I don’t think this study discounts that. I think what it does say that in long-term, chronic patients, improvements in quality of life and social functioning need to happen first so that these can be leveraged to help provide motivation to decrease behaviors. There were significant increases in readiness to change, which bodes well, I think, if these women were to seek ongoing treatment.

    In younger, non-chronic patients, we do know that weight restoration first improves outcome. So I don’t think that we should just ignore the weight factor in EDs. But we might need to re-think that approach in SE-AN populations.

    • Well, part of it is simply this: you can “make” a kid comply, if the parents are willing to enforce compliance. Who can “make” an adult comply? Adults stand to lose far more if they lose their main anxiety coping mechanism- their ed- than a kid does. If I’m in constant panic mode, I can’t work, clean my house, pay my bills, take care of my kids. Recovery means extensive panic and extreme personal distress. It’s really not reasonable to assume an adult could or would take that on without first being convinced it was absolutely necessary, and second being given a strong supportive system which includes net personal coping skills an increased ability to form and maintain supportive relationships.

  3. I don’t know what works for everyone, but for me, I could never have jumped into weight gain at the start. I went into therapy for other issues and expected to be in and out and on w/the rest of my life. My therapist took a ton of time and energy w/me to do 2 things: 1) Establish strong trust and attachment w/me, and 2) Convince me that I had an ed.

    She didn’t even approach weight gain until the trust and attachment were established (what would have been the point? I would have instantly bolted.), and she didn’t get pushy about MORE weight gain until I had, at least here and there, at least a little, begun to understand I have a problem and wish I didn’t.

    She didn’t wait till I was “ready” mind you- who is ever ready??? Or even wait for me to be willing. But there is definitely something to be said for psychoeducational and for therapeutic alliance. And therapy in the meantime focused heavily on quality of life, emotional tools, and relational health- which was HUGELY significant- b/c then when she started pushing me hard, I had the emotional tools to cope w/the changes- and the relational tools to reach out and get the support I need.

    I think w/children and adolescents, weight gain as the focus FIRST is vital. Kids already have an “alliance” of sorts w/their parents. But for someone like me, 20+ years of AN on and off, ednos all the while in between, weight gain first would never have been an option. I would have responded with (and had responded w/to multiple therapists in the past) a “who the fuck are you?” and a “why the hell should I care what you think or do what you say?” And I would have left. I went to therapy to dump off whatever I wanted to do off- not to be told what to do.

  4. “The study significantly improved the quality of their lives even though BMI didn’t change. Honestly? That’s worth something”

    I am honestly fish tailing through this topic on an almost hourly basis so thank you so much for this post.

    Patients diagnosed with SEED (severe and enduring eating disorder – or in this case SE-AN), sometimes express frustration to me that the system has shuffled them off to the “Yeah, good luck with that”-pile. Given that a full remission can spontaneously occur after decades of an active eating disorder, I do understand their frustration — they want treatment and they are given only symptom alleviation options. And SEED is a diagnosable condition at the grand old age 25.

    Conversely, patients who do not want to pursue remission but do want (and deserve) basic symptom alleviation and adequate medical support to buoy up quality of life end up equally overruled by the system. Many are so fearful of “being sectioned” (UK term) or being involuntarily admitted to a psychiatric facility that their health deteriorates in needless ways because they refuse to even go to a clinic.

    In an ER, if a patient is experiencing a diabetic crisis, or is mildly hypoxic due to an asthma attack and is, rather predictably, refusing care and insisting he or she is fine, the staff tries to soothe the patient all while ignoring his or her refusal of treatment. Because they know something the patient does not: the patient needs immediate life-saving treatment.

    A starved brain functions similarly to a brain without adequate oxygen — it is sure it is absolutely fine. And yet, because asthma is no longer classified as a mental illness, but an eating disorder is, the refusal of treatment is handled very differently.

    I have no idea whether that distinction is a good thing or a bad thing. But I do know that it is so, so tough to figure out what constitutes an improved quality of life when the very mind that dictates the measurement is impaired (starved).

    But then I fish-tail right back and I think it is that undertow of “doctor knows best” that has resulted in those who want treatment being overlooked and those who want light support hiding well away from over zealous and unwanted treatment.

    You are right — quality of life is worth something. It’s actually worth everything. It is just so maddeningly elusive to classify when it comes to eating disorders (at least to me).

    • Carrie Arnold May 8, 2013 at 1:00 pm

      Thank you for nailing down so many of my conflicting thoughts about this.

      I do generally think that nutritional rehabilitation should be a non-negotiable part of ED treatment. I don’t think you can treat an ED without dealing with the food piece (I mean, they are called eating disorders and not toenail disorders or something).

      On the other hand, our medical system is just not set up to provide the long-term, intensive support that nutritional rehab takes for people who have been ill for a long time. We depend (to the harm of more than a few patients) on the ill person to want recovery in order to receive treatment. But what happens when one of the symptoms of an illness is a problem processing how ill you are and/or a very real fear of treatment?

      I think that this type of treatment (improving quality of life and other psychosocial functioning) is a good first step, but I hope that researchers don’t stop there when it comes to helping people with SEEDs.

  5. “I needed to have some feeling that this was all going to be worth it. At first, it was really hard. I had a job, yes, but it wasn’t anything I was passionate about. Several of my jobs fed into the AN. Finding something I wanted more than the ED was a really big help.”

    This is huge for me, as to be completely honest, right now I’m just resigned to the fact that this is “me” and how I’m going to always be. I know that until I restore at least some weight, I’m not mentally capable of thinking as clearly as I should. But yet it’s just been so long and frustrating that it’s almost easier to resign myself to being the exception to the recovery rule. Studies like this do give a bit of hope, but I just feel like I can’t make things click.

    On another note, these stats hit home as well: “Roughly 60% had never married, 28% had children, and 28% were employed full-time. Although the paper itself didn’t present this information, my notes from the London session indicate that 61% were unemployed and 51% reported no social relationship.”

    I manage to appear professionally sound and responsible, but most days I’m really a mess and hate every day I’m at work. Socially I’m invisible. My point is not to complain, but rather to point out the validity of those stats. Ramble over 😉

  6. I really like these studies. There is a time and place to aim for full recovery, but in many cases, that’s just not going to happen. Instead of kicking these people out of treatment or expecting them to have adequate support in their life, we should focus on IMPROVING their life.

    You can’t cure AN without weight restoration, but curing AN is not the only option. Management and stability is pretty damn good start for someone who has been severely ill for a decade or more.

    I’m not going to reiterate the points mentioned above, but I agree with many.

  7. Also, I’m so happy to have met and conversed with Dr. Touyz at ICED. It is so nice to meet clinicians who don’t have a myopic view of recovery and the BS idea that everyone can recover. Nah. I love meeting clinicians who care about improving their patients lives, whatever that means for the patient. Full recovery or reducing bingeing/purging from 10x a day to 2x a day.

  8. Hi, I find this so very relevant and such a shame it was not addressed sooner by professionals in the field. I myself am a SEEDS patient and I participated in a similar study the MOSAIC trial and was in the group using MANTRA not SSCM. I suppose the workbook was more similar too the CBT model. I find myself so relieved knowing that weight restoration is not the main focus of treatment I am desperate to improve my quality of life and by proxy my mum who acts as my main carers life also. These newer models of treatment I hope will allow me to engage fully in them instead of being taken to a place I cannot cope with and falling further into my illness as a result. It really is heartening to see management of the condition as a way forward much in the way that methadone maintenance is sometimes used for drug users a one size fits all approach is surely doomed to fail more sufferers than it helps. Kudos to Dr Touyz and others like them.

    • Carrie Arnold May 10, 2013 at 12:34 pm

      I am very glad you are finding a bit of hope and a way to work on quality of life–both of these are very important issues to anyone, but especially those of us with long-term EDs.

  9. This is very interesting. I would not have qualified as SE-AN as defined by the study, but close—and recovery didn’t “work” for me until there was something bigger than weight at stake. For me, that turned out to be other health/quality-of-life issues. It’s hard to say whether CBT would have clicked otherwise and I feel VERY strongly that adequate weight restoration was essential for my mind/body to recover (and of course I didn’t realize this until after I had gained the weight and suddenly became sane again), but I also could NOT recover when weight gain was the only focus. “Quality of life matters”—so true.

    • Carrie Arnold May 10, 2013 at 12:33 pm

      Right- I think both can be a focus of treatment. And a good therapist will know when to focus a little more heavily on which component.

  10. This is really interesting to me. I’ve had SE-AN for, gosh, 15 years now, but have managed to have a significant quality of life. I am very happily married. I had a great job that I loved, but quit when I (somehow?) got pregnant with my son. I have friends, although I do isolate quite a lot to avoid food situations. Yet I am very underweight and have been hospitalized/sent into treatment 10+ times.

  11. Very Very Interesting Topic. And I want to thanks for sharing this topic with us.

  12. Not surprisingly, I frame this differently. My title: “If we lower our standards you won’t leave us.”

    This may be comforting to frustrated clinicians and some patients but I see it as a horrible failure on society’s part. It’s our fault that we don’t catch people early enough, have systems in place to make sure they get the care they need early, and lack a way of keeping patients in care when needed. So, let’s give up and stop fighting for real recovery on your behalf and give ED what it likes may seem like the better of the options.

    I don’t find this hopeful; I find it a powerful indictment of our inability to protect patients from chronic ED.

    I’m not criticizing the clinicians here, as they are doing the best they can with an illness and a legal system that they can’t control. This kind of approach acknowledges the realities and tragedy of the system. I’m certainly not criticizing the patients, ever or at all, as none of this is the patient’s fault and I don’t think it is fair to expect patients to stay in treatment and progress and avoid relapse without some pretty robust and cohesive support. I do blame us, though, as a society — for lacking a framework for understanding and protecting the experience of those with mental illness (including ED, bipolar, schizophrenia, etc.).

    • Carrie Arnold May 15, 2013 at 12:53 pm

      I do agree with you, Laura.

      I think the study is important in that it’s the first to deal with SE-AN treatments period. As well, there’s the fact of how else do you help these patients when the healthcare and legal systems don’t give you other options. I struggle with this question a lot: are the SE-AN treatments I talked about above better than nothing? The alternatives are that the patients drop out of treatment and perhaps don’t make any changes. So in that sense, I do think they might be better than nothing.

      Then I go back to the idea that the ED world has a large tendency to settle for something that won’t kill you in the next 24 hours and call that recovery. To be fair, the researchers weren’t even looking for recovery in this study. And I think that this is another example of low expectations and settling.

      But then I start thinking about what to do with the people we don’t know how to help (or don’t have the legal/social abilities to help). Are there other ways to help them?

      I would like to see similar treatments extended and these positive changes leveraged to get at a more significant ED recovery.

      • I agree with you, Carrie – and I should clarify that what I meant by framing it differently was from the premise of the research and not your take on it!

        Given the system we have, and the fact that we have so far failed to prevent SE-AN, it is best to keep people on the ledge talking rather than drive them to jump. My only hope is that we realize that that’s mostly what we’re doing. I still believe in full recovery for all patients, or the hope of it – while accepting that circumstances may not allow it.

        My concerns are more on a large policy level and not a judgement on the individual level.

        • Carrie Arnold May 15, 2013 at 1:02 pm

          YES. THIS.

          We (as in The System) need to acknowledge that we have horribly failed these patients. There are probably still going to be patients with chronic disorders even with the best of care, and if we did treatment right, I would be a little less frustrated at needing to use these types of treatments.

    • I agree that society has been ignorant in so many ways about eds and how to spot them, treat them, help the sufferer to heal from them. I also agree that weight restoration is not optional.

      But as a primary focus- I stand firm that weight restoration for me, in my 30’s, would never have worked before a strong therapeutic alliance was formed and strong supports established both inside and outside of the therapy room.

      Short of handcuffing me and force-feeding me, no one would have ever succeeded with me with that- in truth, I had multiple other therapists attempt to address it, and I immediately left therapy, each time. I am for the first time finally working towards weight restoration- it is tedious, exhausting, excruciating work, and I HATE IT- but my therapist is making it non-negotiable- which I wouldn’t give two shits about if I hadn’t formed a strong alliance/attachment with her before she presented weight expectations. Since I trust her and am strongly attached to her, what she expects from me matters- and I’m not willing to ditch her to avoid her expectations.

      I don’t think taking time to establish alliance/attachment and external supports is “lowering expectations” in order to keep patients coming to therapy. I think it’s wise and reasonable. You have to consider the age and life of the patient and what they can handle and when they can handle it.

      Would it have been better if my ed would have been caught and treated aggressively when I was 13? Of course. But it wasn’t. Did my ed continue for a while under my current therapist’s care? Yes, it did. Is that ideal? Of course not. An ed is never ideal, in any situation. Was it avoidable? No. I had an ed. And I was not about to let some stranger that I didn’t trust rip it away from me, at the expense of my sanity, my comfort, my ability to function. Nor could I have handled the stress of “recovery” and “refeeding” before establishing strong relational supports within my family and friends circles, and new personal coping skills.

      Even WITH a strong therapeutic alliance, strong relationship supports, and new personal coping skills, recovery is hell. I am miserable. I debate in my head whether to turn tail and ditch therapy and quit this freakish joyride that is making my pants too tight to close, my mind race, my heart rate skyrocket, my stomach sick, my emotions plummet. I consider ditching every single day.

      It is ONLY the time my therapist took to bond with me and earn my trust and help me learn coping and relational skills that is keeping me from quitting. We are an established team, she and I. That’s worth a helluva lot.

      It’s not about lowering expectations so patients won’t leave. For us older folks, it’s about taking the time to make recovery safe, worthwhile, and possible- because there is a miserable tradeoff for taking it on. A person needs to be strong enough to take on a challenge. And those of us who have been stripped emotionally and relationally by decades of AN are very broken- we need to be rebuilt from the ground up in a LOT of ways before we can be strong enough to take on something as monumental as “recovery.”

      • hm,

        I truly TRULY celebrate what you are doing and the alliance you have with your therapist.

        • I guess I feel overly frightened of hearing someone criticize a therapist who would do things in this order- it feeds the idea in my head that I SHOULD ditch b/c she’s doing things wrong. My attachment to this recovery process is extremely tenuous… if it’s even there at all. It is only my attachment to my therapist that is keeping me in treatment.

          Thanks for hearing me and for being supportive.

          • hm, speaking only for myself here, my issues involve pie in the sky ideals, big picture policy in mind – not individual patients or their individual clinicians. I have enormous respect for good therapy and therapeutic alliance and celebrate every time a patient finds connection and hope and insight in whatever way is working. I am in enormous debt for therapeutic alliances in my own life and those of family members.

            I don’t think you should let anyone have any power to make you doubt your path. Choose it, own it, be proud of it – and then come back and say FU to anyone who may not have been listening!

          • Hahaha- Thanks, Laura. It still feels a bit more like a path my therapist is choosing FOR me than it feels like my own. And yet, I know I have free will, and COULD say FU to my therapist and ditch her- but, at this point, I think that would cause me more psychological pain than recovery is causing.

            Doubts are pretty darn easy to come by, when something is as painful and confusing as recovery. But I do very much want to be healthy.

      • Carrie Arnold May 15, 2013 at 1:32 pm

        I agree. Establishing a good therapeutic relationship does appear to be important in treatment in many cases.

        The “lowering expectations” has to do with the fact that the study did not push for any sort of weight restoration. It’s not that they were working on some things before weight restoration, it’s that weight restoration wasn’t a goal at all.

        • Hmmm… so what if the goal was to simply to see how to keep an otherwise skittish population from ditching therapy?

          I don’t think that’s at all a bad thing.

          Honestly, if my therapist had never addressed weight restoration, I still would have benefited GREATLY from my work with her- my relationships have become much more open, honest, and healthy- my understanding of myself much more clear- my coping strategies enhanced. These are most certainly not bad things- and if recovery had never been addressed, my quality of life would still have been much improved.

          • Carrie Arnold May 15, 2013 at 2:33 pm

            Okay, yes. That’s a point I didn’t really think through. These changes, even in the absence of any other ED changes, are good and important.

            And they don’t have to be the end of treatment, either.

  13. What this made me think of is Linehan’s Hierarchy of Treatment*. The parallels being her original clientele were chronic adult women with severely disrupted lives at super-high risk, who’d also been tossed into the “Oh Well” pile by failed treatment.

    The top three therapeutic targets, in order of severity are suicidality/immediately life threatening behaviors, therapy interrupting behaviors and Quality of Life behaviors. It sounds like both CBT-AN and SSCM show promise in keeping SE-AN patients engaged in therapy, while improving QoL.

    That’s really Excellent. I put that FIRMLY in the Better than Nothing category. And I would think so even if that is the best possible outcome from these treatment methodologies.

    If I’m reading this correctly, at onset they weren’t even sure they’d be able to finish the trial. So in some ways, this is actually only a pilot design. Well, now that you know you can achieve good therapeutic results with modest goals, the next step is clearly to find out whether those statistically significant changes in QoL & readiness for recovery are Clinically Meaningful. Can you build on what you’ve done to wiggle some ED behaviors loose and get behavioral and physiologic improvement on THOSE axes?

    In chronically critically ill people, stabilization is HUGE and should not be considered settling any more than it should be considered the ultimate goal. In the SE-AN population, stabilization and modest improvement is almost certainly restoring QALYs (quality adjusted life years) that otherwise would have been lost w/o intervention. That alone makes it a clinical win.

    If they’re still alive, engaged in treatment, building positive experiences and rapport with their providers, that only bodes well for further improvements, so long as further improvements remain part of the treatment’s ultimate desired outcome.

    *(Because I’m apparently going through Erikson’s little known DBT-Hierarchy developmental phase.)

    • Carrie Arnold May 15, 2013 at 2:32 pm

      That is a very good point, Irish.

      It’s unclear whether further improvements are part of the overall goal in this. But having people who are alive, (relatively) well, and engaging in treatment is HUGE. We need longer term follow-up on this.

      Thank you for helping me refine some of my thoughts on this. I think we need better treatments in the category of “Doing the best we can with what we’ve got.” Maybe that will include aggressive weight restoration. Maybe it won’t. I know myself I get caught in the “perfect being the enemy of the good” situation.

      • Hi sorry to chime in again! I’m inclined to agree that improving any therapeutic alliance and helping people to stay engaged is vitally important and must not be underestimated. I think also and please forgive me for this I am awaiting admission so I’m perhaps overly sensitive to the weight restoration issue but to promote aggressive or even gradual weight restoration (excluding life threatening situations where of course it is a necessity) may only serve to further alienate seeds patients. I am currently only able to contemplate the next step with maintenance rather and gain being goal I don’t think I would take the next step if weight gain was a goal. I’m still terrified but I am trying to have faith in my team. Sorry if this s inappropriate but I just wanted to say how useful this treatment paradigm for seeds patients seems.

        • But then what I find really interesting is that we could apply this to other forms of ED and not just AN. For ED-NOS weight restoration probably isn’t the issue. Getting your life back is.

  14. i’ve been reading this and just trying to absorb everything and be still.

    i’m in my forties and have been in a bad relapse for 5 years. At one point treatment got to be too aggressive and that, quite simply, ended it for me. Now i’m trying very hard to figure out the best way to keep some quality of life and try alone to maintain the weight i’ve gained (still medically compromised) while battling to eat more. i don’t feel i can even go back to my therapist because i’m afraid that she really doesn’t understand and that i’m simply a failure. And finding someone else when i trusted her very much is too much to contemplate.

    i feel often that the ‘system’ has failed and i don’t know how wide the ledge i’m standing on really is from day to day. Just standing there erodes the ledge down, which in my mind, is terrifying. All i can think is “What now?” and i have no answers to that except i’ve already done my best.

    Thanks for everyone acknowledging that we are real people, with faces and voices (small ones, seemingly) and we still have value and if anyone would properly listen we have answers. i know the difference between my voice and the voice of anorexia. It’s just that most people don’t care.

  15. Carrie, I was quite taken by your remark in your original analysis of the research study that “treatment failed them.” My perspective, having watched a family member struggle with this disease for more than 25 years with multiple treatments at varying levels, is that more people should adopt the attitude of Shari Manning who wrote Loving Someone with Borderline Personality Disorder (BPD). I know you aren’t talking about BPD here, but the fact is I think too many people assume those with ED’s are willfully scheming all sorts of things to stay caught up in their disease(s) rather than adopt the more compassionate view that there may be other ways to treat/reach those with SEED-AN. I was truly encouraged to read the results and hope their work is a firm step towards finding other ways to help those who are entrenched get on the road to recovery.

  16. Great post. Recovery is a holistic thing. I do not believe that the disregard of weight gain in this study is an indication that we should render defeat in this area – rather, that we should focus on what we CAN do to improve quality of life.

    Many studies have shown that intensive glucose control, for example, in diabetics will indeed lower their A1C, but it does NOT necessarily improve their quality of life or morbidity/mortality. It’s not all about numbers. We need to be holistic in healthcare.

    I do have a question, however – what is your opinion on the use of Olanzapine in AN recovery. It certainly has its challenges, and there is a whirlwind of controversy around its use. It certainly would be a tough pill for me to swallow as a recovering AN. But sometimes I wonder, for those of us at our last resort..?

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