Reflecting on the 2015 International Conference on Eating Disorders

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.

On Criticality

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.

Andrea

Andrea is a PhD candidate focusing on individual, familial, and health care definitions and experiences of eating disorder recovery. She has an MSc in Family Relations and Human Development and a BA in Sociology. In her Masters research, she used qualitative and arts-based approaches (digital storytelling) to explore the experiences of young women in recovery from eating disorders. Andrea has recovered from EDNOS. She can be reached at andrea[at]scienceofeds[dot]org.

14 Comments

  1. Woo hoo! I love these conference summaries. Just a few points:

    1. Yay for discourse surrounding marketing. I’ve thought about this issue in regards to treatment facilities as well, where a rich benefactor may favor certain methodologies and practices that seem appealing. Although I’m sure the person(s) has all the best intentions, evidence may be ignored. In the end, money rules over research *sigh*, but perhaps we can do a better job of marketing good research as scientists.

    2. A note on animal models that I think gets ignored: the parallels between animals exercising and humans. Animals, particularly rodents, run on wheels for fun….for HOURS. Most rodents do this, not just a select-few “binge exercisers.” I’m often skeptical of how much we can learn about the psychological underpinnings of excessive exercise in anorexia/bulimia with the Activity-Based Anorexia (ABA) animal models. However, there may be some shared underpinnings, and we can learn something about physiological changes that occur when exercise is combined with caloric restriction. But using these models as a foundation for recommendations in humans? That’s a far stretch in my opinion.

    Anyway, great post!

    • Nothing like doing research on animals to make one skeptical about the applicability of animal research to humans, right?

    • Thanks Liz, glad you enjoyed it 🙂 I think the marketing thing is super interesting… I was encouraged that there was a discussion about it going on. The animal model stuff went mostly over my head; I, too, am skeptical of basing recommendations for humans on animal models. I guess it could guide research with humans, but in the case of exercise/excessive exercise I don’t know how any “experiments” could be conducted ethically or safely, so…. tough one. The speaker did seem cautious about extrapolating conclusions, to be fair.

  2. What a terrific recap. I’ve already gushed over how wonderful it was to meet you. My thoughts are still spinning and I’m also exhausted and slammed at work so coherency is on hold until the weekend.

    One thing I want to share was my conversation Saturday with Lisa, the new Executive Director of AED. I asked about outreach and financial support for the families of underrepresented groups (people of color, males) attending in the future. As I told her, my presence does nothing to myth-bust anorexia as a disorder of affluent white females.. Sadly, we are the only ones with enough money to show up and that needs to be corrected. She seemed to get it so fingers crossed for San Francisco!

    • “Sadly, we are the only ones with enough money to show up and that needs to be corrected.” Yeah, that’s at the core of it. I think these things play into other issues as well. I am very aware of the fact that I face less stigma (if it were averaged out, or something, overall) as a white female with an ED, than, well, if I was a male or a person of color.

    • Thanks Jen! It was great chatting with you and the other parents & carers. I’m happy that several of you were able to attend. I’m ALSO happy to hear that you talked to Lisa about ways to get others to the table; 100% agreed that having primarily affluent white females in attendance doesn’t do a whole lot for myth busting!

  3. Thank you for being that person to say “Yes, but…” We need those people, and especially in this field. I’m so super critical of anything I read or hear on EDs in that same way, but I think we have to be to allow for exploration, discovery and new ways of treating EDs.

    The exercise part is so important and I think often gets left out (well, maybe not often, but it seems to be treated as a separate beast). Moderation, of course, and balance were always stressed by my therapist with everything.

    As for walking – my last major relapse in 2012 was concurrent with starting a foot injury from running. But, I was cleared to walk. So I did – a lot – to substitute for my running. Probably added more to my foot problems too haha.

    • Thanks Jill- I don’t think I could shut off the critical even if I wanted to, at this point, to be honest. Lucky for me, I just read an article that bolstered my criticality, highlighting how the central role of science/social science is to be continually self-reflexive and critical, working with ambiguities and pushing things forward… so that’s good.

      Yeah the exercise discussion was really interesting. I appreciated the conversation, because I think when it is left out of treatment conversations entirely it can leave people feeling like they have no idea what “moderation” is when out of the therapeutic context. I think this is particularly true in our society where that “more is better” thing gets tossed in our faces with posts on fitspiration and exhortations to be “healthy” (in ways that don’t seem so healthy to me).

  4. I feel that someone who can’t conceptualize how walking can become super problematic has not seen enough patients. And anyway, it is not even about frequency or amount or the probability of getting an injury. That’s not how I think unhealthy relationships with exercise should be conceptualized. I had a very healthy relationship with exercise when I was marathon-training (never got an injury, ate to fuel my runs, took extra days off, was very flexible with training, etc. etc.) than when I was running WAY WAY less but was so rigid about it (hated myself for being even 10 minutes late to get out of the door, had major anxiety over missing a run, etc.). The same unhealthy attitudes can exist for walking, too, or anything else for that matter. This is not rocket science.

    • Yeah she was from public health, I don’t think she sees patients- so, more familiar with population-level strategies which she did note were different from clinical implications. I agree that it has less to do with amount or intensity and more to do with mindset- absolutely. Heck , Tai-Chi could be compulsive.

      • Oh my goodness, I can’t agree with you more about walking. There are many I have known including myself (in treatment settings and outside) who have spent pretty much all our waking hours walking. It’s not ‘excessive’ in pace, but it is constant, endless pacing. It does add up, especially when someone is extremely drained physically and mentally. The body has no opportunity or resources to recover, and precious muscle mass, fat stores and energy are further frittered away. We aren’t running marathons or pumping out zumba classes or weights at the gym! But I think this kind of endless pacing can do just as much if not more damage. It would be seen as ‘ideal’ in this world of desk-treadmills and incidental exercise. It also represents a mental struggle – a beast in your mind that won’t let you sit down, won’t let you rest when exhausted, etc. I definitely agree that to understand exercise from an ED context is completely different to understanding it from a ‘general public’ context.

        Thank you for a very interesting recap. I’d love to see more people of colour, men, and low SES there too. Hopefully that will occur in the future!

    • Thanks for highlighting the importance of recognizing WHY one is exercising. I’m also training for my very first marathon, but I am waaaay less rigid about exercise than I have been in the past. If anything, I’ve learned to appreciate what my body can do and I want to pay attention to it and take care of it. Plus, I run a lot with groups, rather than rigidly counting caloric expenditure alone. I couldn’t have done this without developing more appreciation for myself and my body, again highlighting that it’s not exercising per se that is the problem, but why. That being said, I did have to go through a period of limited exertion before getting to this point mentally and physically.

  5. Also REALLY appreciate the ‘difficult dialogue’ and people who say ‘yes but..’ – I am one of them myself. Like most, I can get things horribly wrong, but I’m open to new ideas and value seeing *all* the info, not just the part that supports what I want to believe. I think this, too, is an issue in the ED community – it can be so tied up with emotions that many can either ignore or purposely try and ‘undo’ the facts that they find more distressing. It doesn’t help – just creates further misinformation.

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