On orthodoxy

I have good news: everyone is doing Maudsley and everyone thinks eating disorders are brain disorders! How do I know this? Because I heard it from the podium at the Academy for Eating Disorders conference in Salzburg. How wonderful, right? I mean, if these top researchers and thinkers and doers in the field are this sure that these ideas are well-established then it must not only be true but perhaps those of us who so wanted that to happen can now retire and go on to other things!

Oh, but I have bad news, too. Because in both cases the reason the topic came up was not a celebration but a backlash. These protests lodged against the orthodoxy of these ideas were a call for “balance” and “rational analysis.”

I must have missed the memos. I didn’t realize that Maudsley was in widespread use and now in danger of being so over-prescribed that the optimism is causing harm. I don’t live in a world where parents are routinely OR EVEN OFTEN being offered this alternative.

I definitely missed the inter-office edict that we all agree on calling eating disorders “brain disorders” and I fear many others have as well since plenty of people remain solidly ignorant of the idea not to mention its acceptance.

I asked a major brain guy, and then a major Maudsley guy, what they think of these developments. The brain guy was exasperatingly sanguine and patient with his colleagues: “It takes time.” The Maudsley guy was inexplicably amused and even pleased: “They’re right. People are taking it too far.”

I’m sorry gentlemen. I admire your minds, your clinical work, your research, and I like you personally more than I can say but I don’t think you are seeing how this stuff plays in the real world. I don’t think you realize how it affects advocates and families who aren’t fortunate enough to get care at your own clinics. As far as public health and policy and the broader discussion even in the field context matters: and the context at present is that the larger field doesn’t believe in or understand Maudsley and do not understand or act on the idea of a brain disorder.

It makes my job harder when the Ivory Tower discussions lose touch with real life consequences. Those conference sessions were held in the real world, where most people don’t start with the premise that Maudsley is assumed nor that brain disorder is understood. In the real world the take-home – and consequence to parents out there – is that Maudsley is now Old School and this brain science thing is hokum. There are a lot of people, institutions, and careers invested in rejecting these newer paradigms, and they are relieved and comforted by reasons to fall back on safer ideas. Those of us out here trying to get families to speak up to get choices in care and get families to take action on behalf of their children who are suffering from a brain problem and not a poor lifestyle choice need the field to be aware of the context of their words.

Comments

  1. Yes. I have experienced similar things, though not with Maudsley and brain-based-ness, but with my advocating that professionals not lie to their patients, treat their patients like humans, interact with their patients in the same ways they encourage patients to interact with their own social circles. I talk to Ivory Tower type people and they say, "Well, yeah, you are right about these things. This is what is happening." And from their perspective, maybe it is what is happening -- no one is going to say they aren't doing these things. And I talk to hospital management type people, give specific examples of situations in which I have been lied to, etc. They tell me they are sorry, etc., but things aren't done that way anymore. I talk to the staff while I am on the ward, I say, "hey! You lied to me just then! Please apologize and please stop lying to me." And they flat out deny having lied to me.

    I understand something in your frustration. It is hard to get people to change in the direction you desire when they insist they are already doing exactly what you are asking for.

    What is going on here? Have these people met real life? Do they live in a place that really is so radically different from where I live? How can we have such different perceptions? Are they crazy? Are they dumb? Am I crazy or dumb? It is such a bewildering experience.

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  2. On the one hand, I am glad to hear that top researchers and academics in the ED field believe that it is a "given" that EDs are brain disorders and that Maudsley is the most effective treatment for children and adolescents.

    On the other hand, I see no evidence that these points are widely endorsed by most clinicians or most academics. Clearly not everyone is doing Maudsley. In my entire state, you can count on one hand the number of clinicians who practice Maudsley, and I live in a pretty big state.

    I received my Ph.D. only two years ago, and none of the professors / researchers in my department believed that EDs were "brain disorders" and none of them had heard of Maudsley. And this was a well-regarded scientist-practitioner program in a major city.

    The topics of Maudsley and EDs as "brain disorders" are regularly - and contentiously - debated amongst professionals on the AED listserv.

    I don't understand.

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  3. In the UK any truth in the claim may lie in the exact definition of "Maudsley". Clinicians from the unit 15 miles down the road from the Maudsley itself are openly critical of the idea of parental control of feeding. They may, however, be more open to the idea of parental education along the lines of the "New Maudsley Method". As for acknowledgement of EDs as brain disease - no way. Many, if not most, clinicians and activists haven't even heard the expression in the context of EDs.

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  4. As a carer I feel like someone just patted me on the head and told me "It's all good. We won't be using current knowledge and supporting you in treating your daughter with speed and effaciy. We are trying to help you know."

    This sounds a lot like lip service and turning a blind eye to medical malpractice.

    Laura, I could whip up a couple of pairs of BGP's. Let me know.
    M

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  5. OK, so I think we're looking at something really complex here - and complex for a number of different reasons.

    My interest in EDs (more specifically AN) comes from two different angles. First, I suffered from AN for many yrs. Second, I am a Biomedical scientist, I have worked as a researcher in universities and a major focus of my PhD and post-doctoral research was the metabolic and physiological effects of energy deficit (although I didn't specifically study AN). I know what AN feels like and I know how the academic world operates.

    Do I believe that AN is a brain illness? Yes, I do. However, I don't think the mechanism is as simple as starvation + weight loss triggering a sort of 'switch' in the brain that, in turn, switches on the illness. AN is often compared with the Minnesota Starvation Experiment, but even though that experiment explains food obsessions and some other obsessive thoughts/behaviours in EDs, none of the male participants in that experiment developed AN. When the experiment ended they didn't resist re-feeding or weight gain, even though their metabolism and physiology had been greatly disturbed by sustained energy deficit.

    Rather, I believe that genetics and neuroscience influence the risk of developing AN through their effects on temperament and personality (even though personality is not properly formed until one is an adult). People who develop AN often have pre-morbid anxiety issues (childhood OCD, social anxiety, phobias etc.) as well as perfectionism, obsessionality, rigidity... What starvation does is to enhance/exacerbate those characteristics such that the individual gets stuck in the obsessive thinking and behavioural components of AN. That is why re-feeding is so important to recovery. However, re-feeding alone often doesn't work. The person needs to find means of coping with life and with their inherent characteristics in a way that doesn't involve self starvation and other anorexic behaviours. Sometimes this involves the person becoming passionate about another 'interest' that takes the place of their AN.

    But AN also has a lot to do with identity formation. Like it or not, AN becomes part of one's identity. I believe that's why the illness is egosyntonic (in its earlier stages) and the individual fights against re-feeding and lifestyle change. They initially feel that without their AN they will have no identity, or will have lost an important part of who they are. The biggest mistake professionals make (IMAO) is to assume that AN is a disorder of 'body image'. It's not. AN is a manifestation of identity 'disorder' or crisis. It only becomes a body image disorder if the person defines themselves by their shape and weight (CONT...)

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  6. (CONT...) [so Cathy rambles on...]

    In terms of the academic issue.. You are correct, Laura, when you write: "There are a lot of people, institutions, and careers invested in rejecting these newer paradigms...." As I said in my first comment I know how the academic world operates...

    First and foremost the academic world is highly competitive. Individuals and the institutions that employ them strive for publications, grant funding, PhD completions, conference presentations etc. (I had to, it was part of my job, but I found it stressful...). The individual and the institution are awarded higher status for more output. No academic really wants their theories to be discarded and many will strive to defend their ideas. It's a complex world with many layers to it.

    However, there is also the issue of 'what works for one person may not work for another'. Behind the ED sufferer is a real person who is not defined by their illness. No two people with a diagnosis of, say, AN, are exactly the same. I don't believe that there will ever be a wholly effective 'one-size-fits-all' approach that benefits everyone with AN.

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  7. Everyone is not using the Maudsley approach. This type of treatment is geared toward adolescents and young people - what about those of us with anorexia older than 20 or 25 (I am 45)? My therapist tried a modified Maudsley approach with me when I started relapsing in January - I can tell you it is an utter disaster and a complete strain on a marriage to try this with the spouse as the person in control. We had to drop it quickly.

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  9. I can relate to the 'identity disorder' comments made by Cathy. However, at age 14-15, it is normal not to 'know who you are'. It is normal to be in the process of exploring, trying out, rejecting, etc. different roles and identity possibilities. Not knowing who you are is part and parcel of the experience of all adolescents. So, I don't entire buy this concept. How one successful negotiates this task during adolescence is key. To make it an illness that a 14 year old doesn't know who they are is a bit off the wall (and this was said to my daughter...or she said it about herself and it was reinforced by some therapists).

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  10. Hi Anne (above), you write:

    "Not knowing who you are is part and parcel of the experience of all adolescents. So, I don't entire buy this concept. How one successful negotiates this task during adolescence is key."

    These are really good points which you explain that very well. Perhaps an important point is that the adolescent who is more susceptible to developing AN has more angst surrounding the uncertainty of who/what they will be?

    I wanted my life to feel more 'sorted' as an adolescent, because it felt completely chaotic. There were lots of reasons for this, perhaps the most dominant ones being that: (1) I found the adolescent social world far too complex - and (2) I felt I was 'all wrong', which created a lot of anxiety. The rigid and structured behaviours of AN helped me to feel that everything around me was less chaotic.

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  11. Yes, I can see it from this vantage point, Cathy. My daughter was overwhelmed by the adolescent social world and didn't feel she fit in. While this isn't an entirely uncommon adolescent experience either, for her it was to a greater degree than most.

    However, I think her feeling of a 'lack of identity' was pathologized by some clinicians--instead of simply acknowledging that she did indeed have an identity, in addition to many talents and strengths. She just needed help handling her anxiety and experiencing the social stuff in small successful doses. Ironically, I felt she felt most comfortable with us, her family, at home. At the same time, she became angry with us (at least outwardly) because I think she felt/knew she should be moving outward toward that social group she felt so supremely uncomfortable with--it was a 'catch 22' for her.

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  12. Having been in contact with a woman who is passionately antagonistic to the ideas of Treasure et al about pre-disposing personality traits, I read your comments with interest Anne and Cathy. I disagree with this person's conclusions but I can see why she has come to them from a purely biological, not a psychosocial starting point.

    There's no agreement as to what EDs are, or as to how they should be treated. We have hardly begun the search let alone come to a conclusion. The idea that there's some kind of mindless consensus on either treatment modalities or what is happening in the brain is way out of line and, as Laura has said, can be used by those who don't want to keep looking, as an excuse to practice outdated, ineffective treatments.

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