The "holy cow" of eating disorder treatment

If you follow my writing (doesn't everyone?) you will share my shock that a paper challenging the importance of weight would make me happy.

"Anorexia nervosa-Irony, Misnomer and Paradox" by the esteemed Bryan Lask and Ian Frampton has this incendiary introduction: "professionals tend to hold the same morbid preoccupation with weight, BMI and targets as do our patients"

Now, I would start with a tiny disagreement: I think a bigger problem is that the profession does NOT pay enough attention to weight. The medical establishment does, and nutritionists do, but most eating disorder patients are seen by psychotherapists primarily or exclusively until they are so ill that their prognosis and treatment is indeed centered around weight restoration and targets.

The arguement of the paper is not that weight restoration doesn't matter. The argument is that weight is a poorly understood, poorly measured, easily gamed proxy for real medical measurement. And this is indisputable. Sitting around staring at the number when we don't make the targets based on good science and the numbers change for many reasons and even at best the number on the scale isn't measuring recovery of the brain.

But there we are: isn't the problem that the scale is the only measure we really have or agree on. The body compensates for malnutrition almost to the point of death and the other measures available are of likely harm but never of HEALTH. We can't measure mental wellness. We can't weigh stability.

I'm ready to agree that weight is a silly measure but I need two things before I let go of this rung: alternatives, and some assurance that regaining medical health is considered a minimum if not sufficient goal of treatment.

Because most ED treatment ignores weight restoration altogether. It only considers a patient needing nutrition or medical intervention when far below optimal health. This is like getting rid of swimming lessons and lifeguards at pools and instead having a speed dial to the ambulance when someone is found lifeless.

And without any measures at all, we are back to trying to convince anosognosic patients (and yes, the authors use that term - one up to now I thought I was the only one using for EDs, hoping that others would take it up!) to stop their behaviors on the strength of our brilliant advice and cogent arguments. Without measures we are left as families to keep feeling and saying "you are not well" but lacking confidence ourselves that we are making sense. We leave clinicians unable to intervene until life is threatened, and bystanders confused and angry.

Yes, it is not about the weight. But bring me other measures and assure me that that it is at least about the weight being healthy, because that cannot be assumed.

Comments

  1. I've been wanting the full text of this article- do you happen to have it? If so, could you email it to me?

    I have to say that I never felt more respected during my treatment than when my dietician told me she wasn't going to lower my target weight range at first to keep from scaring me off, that she respected her patients and knew they could handle it. She said many treatment providers lowball target weights to get the sufferer in therapy- though well-intentioned, it just keeps them ill.

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  2. "We leave clinicians unable to intervene until life is threatened"

    This was the biggest issue in my recovery. The therapists' hands are tied until the patient is in, what is deemed by a medical professional, a life threatening situation. But the definition of "life-threatening" needs to change. When I was starving and purging and cutting, I was threatening my own life. But my therapist framed recovery and stopping those behaviors as something I had to choose to do. Which only served to reinforce in my diseased brain that what I was doing to myself was acceptable and "not that bad". It also reinforced the idea that I somehow deserved that kind of self-torture and that my therapist thought so too. And it actually worsened my behaviors because I felt like I wasn't worthy of rescue until I demonstrated just how very sick I really was. What I needed was for my therapist to say, "Hurting yourself is unacceptable and if you continue to do it I will have to take action to protect you from harm and I will do whatever is necessary to keep you safe." But she didn't say that until my behavior got very extreme and I was outright planning suicide. Anyway, in my long-winded way, I am trying to say that I needed a firm and unyielding stance from my caretaker (who in my case was my therapist) and I didn't get that from her because she was more concerned with protecting my autonomy and independence than with saving my life. I'm not saying that this is the case with all therapists, though. Just my personal experience.

    Thanks for another insightful and informative post. I feel like I'm learning so much about my experience in retrospect from reading your blog. Maybe that sounds weird. I'm just re-examining old thoughts and behaviors. It's just fascinating to me. (Sorry this comment is so long!)

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  3. This was actually my first rambling draft of a post I meant to pare down and improve, but both of your responses came in before I realized I had posted by mistake. So I'm leaving it.

    Carrie, check your email.

    Carrie and Gwen, you are the experts, really, on how this professional squeamishness about weight affects real people. I try to imagine a time when neither of you would have had to delay your recovery, to marinate in malnutrition, and to have clinicians collude with ED. And as time goes on I encounter more and more former and recovering patients who have lost patience with the low-balling and the placating.

    It isn't happening fast enough for my tastes, but I hope we are going in that direction.

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  4. I would love a full text copy also. Do you have permission to print it online?

    anne

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  5. It is not, as far as I know, available as full-text except by paying for it online. ($30US)

    I hate paying for articles but this one was too important to economize!

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  6. Aloha!
    Bravo! Well said and so important. As a nutritionist working with an ED center I must state that in my opinion the brain cannot function fully in starvation mode.
    The attempt to find a weight (yes a #) where the client can begin to fully cooperate and benefit from the psychotherapy and other healing modalities is a must.
    To assume that because ED is not about the food we should stand by and expect a starving brain to grasp the therapy being offered is simply missing the mark.
    Getting the client to a functioning weight is a priority not an option.
    Mahalo for your work!
    Aloha~Gina
    http://www.lunchwithouted.wordpress.com
    @starlightlife

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  7. I found the article via my university access (oh how I love being a student! :) -- all the medical journals are open to me :)

    I liked it because is reassured me that weight is not the end all and be all of recovery and that weight DOES fluctuate -- many hospital based programs and clinicians do look at severity of illness by weight gain/loss and this can create difficulties -- ex. patients at a target weight but more psychologically unstable than they were at a lower weight or a patient discharged as non-AN when he or she is still struggling severely with symptoms, etc.

    I found it interesting how they compared the diagnosis of AN to diagnosis of other physical illnesses such as heart disease -- it is true that the diagnostic criteria for AN is relatively sparse and the deciding factor is the 85% weight loss -- this does create problems for patients who do not meet the weight criteria or patients who have gained "just enough" to no longer qualify for the diagnosis.

    The problem is that there is no other reliable indicator to measure health in AN -- as you pointed out. Lab work can be misleading until the person is severely ill and things can go downhill very fast. Reproductive function -- well they ARE taking the ammenorhea criteria out of the AN diagnosis, so I don't know if that is a great sign of health.

    I just thought I would provide a different perspective, but I can see your point. Weight is important and I think the authors make that clear, but they do list some risks at making it the sole indicitive factor of health/sickness.

    A:)

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  8. I must see if I can get hold of the full article through my student daughter.

    From this side of the pond where perhaps weight IS looked at earlier at least with kids offered the Maudsley approach and with specialised CBT which does tend to concentrate (or is it obsess?) on food intake and weight maybe it makes a bit more sense than it might in a system with more private therapists working from a more psychosocial model. Most people here in the UK rely first and foremost on their GP who is a general physician and virtually all he or she has to rely on is the scale.

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  9. I don't have access to the article (without paying) so haven't read it. Here is where I feel (once again) that families MUST be listened to. I had an intimate knowledge of my daughter. I KNEW she wasn't well. I KNEW her behaviors were not typical for her...things were most definitely 'off'. I knew enough to be very alarmed..and behaviors and thinking were more of a tip off to me at first then was weight loss. My observations were not totally discounted by professionals, but neither were they taken as seriously as they should have been--at least not until it was 'proven' through very significant weight loss. Families know what is the 'healthy norm' for their loved ones and must be listened to when they express concerns.

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  10. I absolutely agree with the general statement about professionals being equally preoccupied with weight. It's tremendously sad to me when I see a patient with AN whose pre-illness weight was in the "overweight" range and who comes from a family where EVERYBODY is large, and their "progress weight" is set to a BMI of 20 or so. There is no way that is appropriate for someone with this kind of background, and it means that it's very likely that they are never going to get to a high enough weight for them to shed at least some of the cognitive and emotional symptoms of AN.

    Laura, I was inspired by your book and blog to give a presentation to a pediatrics department today about family-based treatment for AN. Shockingly, many of the professionals there still subscribe to a the-family-is-pathologic philosophy. I really had no idea that belief was still so prevalent today.

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  11. Dear chartreuse,
    Send the pediatricians to the Practice Guideline for the Treatment of Patients with Eating Disorders (Third Edition) issued by the American Psychiatric Association. It says "No evidence exists to prove that families cause eating disorders. Furthermore, blaming family members harms their psychological well-being and often impairs their desire, willingness, and capacity to be helpful to patients and to participate actively and constructively in treatment and recovery."
    http://www.psychiatryonline.com/content.aspx?aID=138866

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  12. It is so funny when you read something out of context! When I read the incendiary first line, I took it completely differently. I took it as meaning that professionals buy into the fear of weight as much as the sufferers!! Not that they overemphasized the number on the scale: more that they were just as morbidly afraid of it. And isn't that the truth too--that professionals fear weight gain and FAT as much as their clients, and try to set the target weights too low for real recovery. It was our experience with our d's first team. They wanted to just creep her up slowly to the minimum weight because they didn't want her to get 'fat.' They warned me repeatedly about obesity: hello, that's not our problem right now?!

    If only professionals could take a matter-of-fact attitude toward weight: "Your body needs to be at this number and I'm not afraid of it and you shouldn't be, either. Let's get there." I'm sure it's not what an adult sufferer would want to hear and might not bring them back for their next appointment, but for parents and carers, wouldn't that be nice? If only we could clone Carrie's dietician...

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  13. Chartreuse, I'm so psyched to hear about that. We live in a time when those who don't get it are the majority, and those who do get it often don't "get it" that they are still the minority. And that is why we all need to keep working and talking and speaking up!!

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  14. What I find most refreshing about this article is the acknowledgment that clinicians and researchers might need to examine themselves for evidence of distorted thinking. Come to think of it, wouldn't it be nice to see some systematic scientific studies of the prevalence of distorted thinking among eating disorder treatment providers?

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  15. Colleen,

    Hear hear! She's fantastic- first generation Italian immigrant and loves food and it really shows in her work. She's also the spitting image of Marissa Tomei. It helped for me to know that she was okay with my natural weight, which is above the initial target weight I was given.

    Anon,

    Here's another factor that might lead to the distortion and fear about weights: many MANY ED treatment providers are recovered or recovering sufferers. They might buy into the fear because they still have it themselves. Even non-ED'd clinicians are inundated with the hysteria over obesity, and have been trained to fear overweight more than underweight.

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  16. I think it depends on the person, but that for me it was much easier to get better with the weight off the table. When a nutritionist told me not to worry, that she wouldn't "let me get fat" I panicked. I was in the hospital, my life essentially on hold, and here she was reassuring me that I wouldn't get fat?! It seemed to justify my fear.

    I was afraid some arbitrary point would be set, and I would still be hungry, weight would still matter, and for the rest of my life I would be stuck with this being a real priority.

    I've been at an open enough stage in my recovery to be able to work with a nutritionist to gauge my hunger cues & work from that.

    I think it is important to not be in a nutritionally compromised state to make real psychological progress. My starved brain is crazy, but that's independent of weight-- sometimes a bad weekend of school translates into me being uber crazy with only a few pounds lost.

    I think not focusing on weight made it easier for me to see my recovery as being a move towards health & sanity.

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