When I get back from conferences I always have this odd mix of elation and overwhelmedness. This is never more acute than when I return home from an eating disorder conference. I get back to my apartment, flop down on my couch, and revel in the silence- while stewing in my mind about everything that happened, how to make sense of it, and where to go from here.
Sometimes it takes a bit of time to really digest (apparently I can’t write about eating disorders without inadvertently using food or bodily metaphors!) all that went on. So, I appreciate your patience in waiting for this post. In case you don’t follow my incessant Tweeting, last week I was at the International Conference on Eating Disorders (ICED). Last year, I had my Science of Eds partner in crime with me, and the year before that she went solo (recaps here and here).
I’d like to begin by saying how wonderful it is to hear people talk favorably about the blog. I love blogging here, and I am so grateful to have a space to write about eating disorder research and share my thoughts about these complex disorders. It’s pretty exciting to me that people with eating disorders, parents, clinicians, and researchers alike read the blog. As I’ve said many times before, more people read my posts here than will ever read my research articles!
Here, I’ll write about the highlights and some of the things that confused or distressed me. I wouldn’t be me if I didn’t interject a bit of criticality, though if you take anything from the post I hope it will be this: I honestly do see more commonalities, at least in terms of underlying goals and ethics, than I do disagreements across this vast field. A shared commitment to making life better for those with eating disorders (and their loved ones) easier.
More so than last year, I found that this year’s conference focused on looking critically at our field and who needs to be included in the conversation. I often feel like “that girl” who says “yes, but…” and is never satisfied; it makes sense, as I identify myself as a critical feminist, but sometimes makes me feel like a squeaky wheel. Because of this, I appreciated that this year’s conference was marked by some “difficult dialogues,” including how to work across differences.
As always, whether these conversations result in changes to the status quo remains to be seen- in the face of enormous structural issues like ever-declining funding for eating disorder treatment and research, it is easy to see why people keep doing things the same way they always have in an effort to do something (anything!) for people with eating disorders. We can have all the amazing ideas in the world about supportive, collaborative care, but if there is no political economic will to support the real structural changes that need to be in place to bring these to fruition we are left immobilized. So, with that pragmatic disclaimer, let’s move to some of the highlights.
On Evidence Bases and Marketing
One of this year’s plenary sessions was about developing and disseminating psychological treatments. Carolyn Becker, the new AED president, reflected on what kinds of therapies clinicians are drawn to, and why. Perhaps unsurprisingly, she noted, therapists are drawn to therapies that they see as flexible. Flexible, “blended” or multidimensional therapies include things like acceptance & commitment therapy (ACT), dialectical behavioural therapy (DBT), family based therapy (FBT) and others, or combinations. Therapist might be drawn to these as they leverage the potential to use existing skills (it can take a lot of time and investment to learn to do a new therapy- especially to do it well). These approaches tend also to make people feel like they are firing with all cylinders, in a sense: tackling eating disorders from multiple angles.
Becker noted that therapists also prefer “big promise” therapies. Partially out of a frustration with all the therapies that seem not to work, patients, therapists, and families tend to gravitate toward a therapy when there is a shimmering glimmer of evidence for positive outcomes. Again, this makes a lot of sense: why wouldn’t we all be frustrated with the giant gaping hole that is the evidence base for most therapies for eating disorders?
Of course, the multi-modal character of many popular approaches to treatment can make it really hard to know exactly what it is about the therapy that is actually helping people. When multiple strategies are deployed at once, how can you disentangle the useful from the useless?
Perhaps most interesting was how Becker touched on how therapies are “marketed.” I don’t think this gets talked about enough, honestly. She noted that when a therapy has a champion, particularly a charismatic one, it is likely to gain more traction, regardless of its evidence base. Telling a convincing story seems much more persuasive than offering statistics on effectiveness, for example.
This was actually an interesting note in light of another workshop I attended this year, about disseminating collaborative prevention initiatives. At the workshop, Meaghan Ramsey from Dove shared strategies for reaching people. According to Ramsey, 70% of what you are presenting to people should be the story (or emotion-evoking device). It isn’t about not having evidence, but the evidence itself tends not to be terribly convincing for folks. Of course, credibility is also a part of the picture, but as Ramsey reflected, quoting a TED Talk by Simon Sinek, “people don’t buy what you do, they buy why you do it.”
The plenary on disseminating treatment provided excellent insight into what Susan Byrne called the uncertainty of eating disorder treatment. As she also highlighted, this uncertainty shouldn’t lead to complacency or apathy, but instead to curiosity. We might seek clarity on the “known unknowns” we face, such as:
- Clear models of eating disorder causation
- Predictors of good treatment outcomes
- Exact processes of change
Further, we might look to chart the “unknown unknowns,” recognizing that there may well be things that we don’t even know we’re looking for that might change our capacity to support people with eating disorders.
The inward-facing look at treatment and evidence continued as Kelly Vitousek reflected on how “it’s naïve to assume that researchers can only be corrupted by cash.” I thought this was an incredibly important thing to put out on the table- it is critical to consider what kind of biases we bring to our work. Of course, not all biases are nefarious- in some cases it is a matter of being explicit about our preferences, areas of comfort, and experiences.
Vitousek also highlighted the false dichotomy between “things we know for sure” and “those we don’t know at all.” My grey-area loving self practically cheered, here: so often, things presented as “facts” are not universals, including in the eating disorders world. Thinking back to past approaches to understanding eating disorders we can see how things once assumed to be “true” about why eating disorders happen have had damaging legacies; for example, the idea of the psychosomatic family, which, when taken to be universal, led to an extremely problematic legacy of parent blame. It would be naïve to assume that we aren’t making some incorrect assumptions and calling them truth, now, too.
Avoiding Universalization and Reductionism
Overall, what this discussion and others at the conference highlighted, for me, was the need to avoid universalizing solutions, reductionism, and one-size-fits-all approaches. Of course clinical decisions must be made, as we aim for what Vitousek eloquently described as mutual, respectful, two-way communication between patients, carers and clinicians. It isn’t an us-vs.-them game; we all (researchers included) need to be considering how our cultures, values, and assumptions impact the interventions we advocate for, strategies we endorse, and approaches we take.
I’m not sure if it was something about where I’m at these days, trying to tread the road between seemingly disparate worlds (e.g. for me, critical feminism and mainstream psychological/psychiatric work on eating disorders), but I keep thinking about the common threads underscoring discussions throughout the conference.
The themes of deep listening and mutual respect pervaded many sessions, including the difficult dialogues session with Carolyn Becker, Laura Collins, Judith Banker, and Kelly Klump. Here, the power differentials between researchers and clinicians, parents, patients, and other players in the game came to the fore. I was encouraged by questions from the audience that asked us to consider who is not at the table, and whose voices might further enrich our discussions.
Something that kept coming up was how difficult it can be for carers and community members to get involved in the conversation. Not only can the cost of getting deeply involved be quite high from a financial standpoint (e.g. high registration fees for conferences, but on a more micro level the cost of supporting someone with an eating disorder, particularly if insurance companies provide no or only bare bones support), but there is a certain bravery required to step into discussions that value certain kinds of expertise and may marginalize others. It can be especially difficult to “step into the ring,” so to speak, when you feel like everyone is against you and your perspective.
The difficult dialogues session unpacked this “everyone is against me” feeling, highlighting the importance of engaging in debate about ideas, rather than attacking people. For example, the prevention debate (which I’ve written about before here, here and here) has brought out many conflicting points of view (which I’d love to get in to but I really am rambling on in this post). There is a real difference, however, between talking to a brick wall and engaging in a mutually respectful debate that acknowledges who is holding the power, why people are advocating the positions they are advocating (i.e., what the stakes are for each player), and what the history of the interaction is.
Still, I did feel that some voices were missing from the discussion. Admittedly, I did not attend sessions from the transcultural special interest group and I know there was an effort to reach out to underprivileged countries, but I did notice that the vast majority of attendees were American or from other wealthy countries. I’m always curious to know whether including perspectives from people from diverse cultures and socioeconomic statuses, for example, might enrich these “difficult dialogues” still more. Evidently, this would likely only complexify the picture of eating disorders, but I am always an advocate for increasing complexity… how better to avoid universalization and reductionism?
Exercise: A Conundrum Indeed
One point of contention I wanted to touch on is the plenary session on “the exercise conundrum.” This session was very interesting to me for a number of reasons: 1) It’s pretty fun to live tweet next to Carrie from Edbites 2) Exercise played a big role in my own disorder and I’m always curious about perspectives on the role it plays in disorder and/or recovery 3) I usually disagree with the way exercise is framed in public health discourses (i.e., the “more is better!” perspective), and as I think we’ve established, I’m inexplicably drawn to an argument.
Nicole Barbarich-Marsteller began the plenary by talking about animal models, which I admittedly know little about. Essentially, she reported that the risk of vulnerability to compulsive exercise in rats increased when they began experiments at a lower weight and begin running prior to losing the bulk of their weight. I must admit that the one thing I really took from this presentation was that it is interesting that for rats, there is a framing of “inability” to maintain weight, while in humans this is labeled “refusal” (though perhaps not anymore, in the DSM 5), and I find this problematic. See? I told you I was a critical feminist interested in linguistic framings.
Michael Otto shared his perspectives on exercise, coming from a place of how exercise might be beneficial for improving mood and anxiety. He is not an eating disorder researcher, but I was really impressed at how respectful he was about the potentially troublesome association between exercise and eating disorders. Importantly, he stressed the moderate part of “moderate exercise,” which is certainly not what we’re sold in the media. More is not necessarily better (to clarify, there is a “dose response” effect, but this means that adhering to the guidelines given improves impact, not that more is categorically better), and if exercise is the only coping strategy to manage anxiety, depression, etc. it can become extremely problematic.
Caroline Meyer reported preliminary results from the LEAP study: LEAP is an adjunct to eating disorder therapies that works to dismantle myths and facts about exercise in order to restructure patients’ relationships with exercise. While the study is in pilot stage, it was encouraging to see that researchers and clinicians are interested in “tackling the taboo” of exercise, as it were. In the past, I’ve seen exercise pretty much ignored in treatment, assumed to self-correct in recovery.
Finally, Alison Field presented a public health spin on exercise. Her presentation explored how public health recommendations tend to be “for the masses,” while clinical recommendations need to be more tailored. While her presentation provided a strong emphasis on how the “exercise for weight loss” framing can be problematic (particularly as benefits of exercise tend to be for cardiovascular health) I was dismayed at her answer to an audience question around walking.
I think it is incredibly important to remember that for those with eating disorders, any kind of activity can become compulsive. It is easy to forget that something that seems innocuous, like walking, can become excessive and problematic. Further, it is easy for things like walking and yoga to be seen as “not really exercise,” when they can also be very healthy strategies for being active. Healthy or problematic, I think it is important to dismantle the myth that “exercise” means going to the gym and lifting weights or running. I prefer framing exercise as “activity” or “movement” for this reason. The last distressing bit notwithstanding, the prevailing sentiment of the panel was that exercise is about moving your body in ways that resonate with you.
Connections and Recovery
Of course I couldn’t write about the conference and not include some of the discussions about recovery, so indulge me before kicking me off the proverbial blogging stage for writing such a lengthy post. For me, this discussion is intricately linked to my own feelings of being heard in such a vast sea of intelligent and inspiring humans that make up the eating disorders research, treatment, care, and advocacy community.
I attended the recovery special interest group panel discussion on recovery. Carolyn Costin, Suzanne Dooley-Hash, Beth Hartman-McGilley, and Deborah Gill shared their perspectives on recovery in response to the question of “can you be recovered?” This one is a hot button issue: as I’ve noted before (including in my mini-series on recovery, which starts with this post), there are many perspectives on what constitutes recovery, to the extent that it becomes difficult to compare across studies around who is “really recovered.”
Each panelist had a slightly different perspective on recovery; a shared theme, however, was that the purely quantitative indicators of recovery (for example, weight/BMI) miss the “something more” of recovery. For example, what is the role of the sense of self in recovery? Does recovery mean respecting one’s body? Finding a new way of living? Living in a different relationship with fear? Being willing to feel emotions?
One thing I strongly agreed with is the idea that recovery might feel pressure-loaded: something else to achieve or live up to. Particularly in our context, what are we really asking of people in recovery? I found that this panel discussion did a really great job of asking: “what is a recovered body image in the face of normative discontent?” Indeed, what is normal body image anyway?
In some ways (for some people), going through an eating disorder could actually, paradoxically, leave someone with eating and body image that is “more normal than the norm,” in a sense. But then, having a good body image and eating according to a “normal” meal plan become the things seen as abnormal in a society with a profoundly disordered relationship with food. I was so encouraged that the panel, and the recovery SIG meeting that followed, the next day, highlighted the challenge of recovery in context- that it really is more than gaining weight or stopping behaviours.
Overall, I made some awesome connections at the conference, and I’m happy I went. As always, the discussions outside of sessions were incredible and reminded me that as much of an uphill battle researching eating disorders in a society enamored of anti-obesity campaigns can feel, we are not in it alone. I hope that the increasing strain of criticality increases even more next year, as we continue to challenge ourselves to move toward our shared goals.