Report on Austria... finally!
2010 Academy for Eating Disorders International Conference on Eating Disorders, Salzburg, Austria
June 8-13, 2010
The trip to Salzburg was provocative and productive!
Wheels Down, And the Hills Are Alive
It was lovely to spot a fellow AED member as soon as I arrived: Mary Tantillo and her husband, Odysseus, were on the same flight and we shared a taxi into the city. As pretty as the sights were, we got a chance to discuss the AED Credentialing Task Force project she is heading – I offered to pay the fare to make up for my troublesome questions but agreed to be repaid in beer later in the week, and I did!
On arrival at my hotel exhausted from a night spent upright on the plane I found the hills were alive with the sounds of construction: a train-yard and crane serenaded me (24 hours a day, I might add). Not that I cared – so nice to be horizontal! My dear friend, Kitty Westin, also arrived that day, and dinner was the first of several enjoyable meals with her and other kindred spirits – the numbers grew each meal. We joined Terry Fassihi and Tim Brewerton for a lively dinner at a Beer Garden. Many, many interesting conversations on eating disorder science, policy, and personalities late into the warm, Austrian night.
Not that we were looking, but Salzburg didn’t offer any fast food: every meal was sit-down and the conference included no meals at all. The only thing I ate standing up the whole week was my daily delicious pistachio ice cream cone.
Wednesday was Teaching Day, and I chose to attend the Media Training workshop (I meant to go to the intriguingly titled “Everyone Has Won and All Must Have Prizes” as instructed by my friend, Fiona, but that one was cancelled. Perhaps they ran out of prizes.)
The Media workshop ended up being an ideal fit for me. As a small town journalist and magazine writer I thought I’d a basic sense of being on the journalist side. As an author and nonprofit head I fancied that I was familiar with being interviewed. But it was hugely helpful to have a several hour session to learn and discuss all the aspects of media and presenting oneself. Westin and Fassihi offered excellent advice and practical tips for defining and staying on key messages, staying positive and real, avoiding jargon, giving a balance of emotion and information, and controlling the interview.
The practice session was HARD. Each of us got a chance to be interviewed and critiqued – how vulnerable that feels! But real: I do interviews all the time but it was humbling and helpful to get tips and feedback.
The best part ended up being the discussion about ethics. This brought out passions and controversy: some in attendance had worked on reality TV shows while others expressed disdain; the question of whether patients can give informed consent to be interviewed was raised and the special issue of children in the media; whether open toed shoes and dangly earrings hurt your cause; and how to define jargon.
Pleased to see Kaeko Nomura again, from the conference’s program committee. She sent me a photo, for which I am grateful. Her activism in Japan is something I greatly admire, as well as her work volunteering for the Academy.
Drinks and dinner this evening added the delightful Susan Ringwood and her husband, Gary who had been swimming in Austrian lakes and had tales to tell. Ran into Ivan Eisler and Walter Kaye, met Mimi Israel and Howard Steiger for the first time, saw Janet Treasure and other leading lights in the ED world. It was like being in the lobby of the Oscars!
Had the first of several conversations that went like this:
“Hi, I’m Laura Collins.”
“From the AED listserve! I know who you are.”
Turns out though most of the AED stays silent on their internal listserve the majority do read it with interest and attention. Some rather contentious and interesting conversations there apparently have given me a bit of a reputation.
“Yeah, well, I’m not posting there any more.”
“Well, because it doesn’t seem to matter.”
“Please keep posting. It matters.”
“Why don’t YOU post?”
Apparently a “small but vocal group” of members objected to some of the posts and the vehemence of some of the posters. I’m saddened by that because this is how the Internet is, and one of its values: people say things people don’t agree with and that’s okay. But I will say that notoriety has its advantages: people know your name!
Fish dinner – a restaurant with no menu and the most charming server. We solved several world and ED industry problems.Talk turned to who had the best scars which drew forth some shocking stories.
First Day of Conference
Early start with breakfast at my hotel’s outdoor garden. Noticed a woman reading a conference program and upon introductions learned it was someone I have wanted to meet: Bryn Austin. We shared breakfast and I got to ask some questions about “prevention” that perplex me. Bryn had some really wonderful observations that made me think. I struggle with the prevention idea a lot and it was good to discuss with a thoughtful advocate. As often happens I find in-person conversations make positions into thought provoking moments – the reason these conferences mean so much to me in my work. I felt my thinking shift as I ran off to the morning coffee hour. I'm still thinking.
Upstairs to the opening remarks and Keynote. I was on the planning committee for the cancelled 2009 Cancun ICED so it was interesting to see many of the planned elements come out in this year’s conference. Odd feeling.
You know how Keynote presentations are: dull, plodding, to form. NOT THIS ONE. Kelly Vitousek of the University of Hawaii got us all up in our seats. (Carrie Arnold tells about this in her blog) There were several fascinating aspects of the talk but most notable for me was her assertion that everyone in the room was in agreement that eating disorders are brain disorders, and the reasons she cautions against rushing to that conclusion.
Although I don’t agree with Kelly that there is consensus or even a majority agreement on this, she did something that is sorely needed: she broke down three ways people use that phrase. It may not be time to start criticizing the field for rushing to judgment but it absolutely is time to make sure we’re using common terms. I’m entirely comfortable with “brain disorder” as a term but I’m pretty sure I’m using it differently than some others – and that is leading to arguments that are going nowhere. Thank you, Kelly.
I was tickled, being an upstart in this field and a layperson, to see F.E.A.S.T.’s website quoted during the address. When I talked with Kelly afterward I blushed to hear that she had referred to me in another part of the address “but I wasn’t sure you’d want me to use your name.” I would have been delighted, Kelly, especially because it turned out to be laudatory!
The first workshop session presented a quandary. There were sessions I wanted to attend and those I felt I should. Duty and curiosity called: I attended Michael Strober’s presentation on “The Chronically Ill Patient” and was seriously offended. I waited around to speak to him – we had not met – but he was mobbed. Lunch beckoned.
Afternoon awards ceremony and plenary on stigma… I missed all but the first presentation due to feeling unwell which was annoying because I really wanted to hear it. Ran into Melinda Parisi and got to catch up a bit – love her work on caregivers and enjoy her very much.
I attended Walter Kaye’s presentation on the Neurobiology of Eating Disorders: Clinical Applications. It was outstanding. True to what Kelly Vitousek challenged and Cindy Bulik endorsed (below), the key to the new science is bringing it to treatment. Kaye and Laura Hill did a wonderful job of applying the neurobiology to practice and I just wanted to package it up and give it out to clinicians everywhere for the benefit of families.
Have you ever noticed how the Q&A sessions after a presentation can become a “Me, Too” session? Sometimes there are real questions and there is a place for challenging questions and rebuttals. But a certain leading clinic director used the question session to offer this (paraphrased, but I believe others will back me up on the content): “Let’s not rush to let parents off the hook here.”
My two friends nearby saw the look in my eye and both solemnly offered me bail money for what might transpire, then backed away slowly.
I approached this person without any hope that I might change his mind. Although we had never met and he did not know anything about me before that day he was well-known to me. His reputation regarding parents has not been positive. I had heard a great deal second hand, however, and felt the need to express my thoughts and ask for an accounting. I am not a confrontational person by nature, but I was pretty exercised.
I didn’t turn out to need a lawyer or bail money. It was a civil if vehement conversation. I asked this leader in his field to consider the effect of these comments and the policies and writing on the parent community. I asked if certain things were true, and how he accounted for them. Over the next few hours we eked out a few shaky points of agreement. I ended up bringing him with me to meet my friends (much to their surprise) and talking about things like our children and non ED issues. He agreed with some of my larger points and even offered to help with a particular issue. We are not friends, but, perhaps, friendly. I hope to continue the conversation and hope for improvement in the future.
I’m proud of myself for facing this person and speaking my mind. I felt a long line of parents behind me giving me courage. I had the sense that this man has rarely had people tell him these things, and that he isn’t aware of the effect he can have on others. I think he has mistaken silence for agreement, and power for being right.
Of all the activism I’ve done up to now, that conversation was one that could not have happened without all that preceded it and represents one of my proudest moments. I do not know if it will have any impact but it was the least I could do, and the most I could do. It is another example of how this work requires real life opportunities to talk with people directly. They become human, not characters. And we get to be human as well.
Dinner that night was olives and cheese and bread and wine in a friend’s boutique hotel suite – very charming. Conversation about funding, DSM, legislation in the UK and US, and the importance of the FREED Act.
Had breakfast with June and Carrie joined us. June brought a koala mum and baby plush toy for my son with eucalyptus lollies. He loves the koalas but couldn't make heads or tails of the candies - June says keep them for a headcold.
I owe Claire Vickery of the Butterfly Foundation for lunch, as she paid. Saw Aimee Liu briefly, and T.J. Raney. Jim Lock and Daniel le Grange and Eunice Chen eating ice cream as we were in search of it ourselves. Met Susan Paxton and tried to upgrade my reputation from shrill email complainer to average mom. Met Carolyn Becker, Bryan Lask, and accosted Stephen Touyz - then apologized.
Met Kevin Wandler from Remuda at the Teaching Day class but later got a chance to talk about Remuda’s involvement of parents and the question of accountability after discharge. He promised to be in touch about that issue after getting home.
Met Gregory Mar and Jessica Wertz from Valenta. Although my work is focused on parents and outpatient care I like to meet and get to know as many people in the residential treatment world as I can. I think it is very important that we be talking, engaging, and asking tough questions. It does no good, to my mind, to speak only to those with whom we agree.
Nice chat with Ovidio Bermudez between events.
Terrific Plenary session on Biological Determinants and Developmental Consequences of Eating Disorders in Women Across the Lifespan, which is a name almost as LONG as a lifespan. The content was fascinating and useful, but the discussant really brought it home: Dr. Cynthia Bulik. She took up the gauntlet offered by Dr. Vitousek in the Keynote and gave four reasons why we cannot avoid incorporating biology into our thinking about eating disorders:
1) Empathy: we have to understand what the patient is experiencing is NOT what we feel in the same circumstances.
2) Mislabeling: To change ‘resistant’ and ‘non-compliant’ to understand that these are powerful biological drives and not willful behaviors
3) Underestimating medical risk
4) Missing critical intervention times
She also said the misunderstanding in the field is “partly our fault” as scientists because the case has not been persuasively and cogently offered.
“This isn’t a religion. This is a science.” She said. She also invites non scientists to push through their discomfort: “Ask us.”
Kitty, Terry, and another lovely friend and I took advantage of a lull in activities to take a horse-drawn carriage and lunch in a cobbled square. We visited a cathedral where I lit a candle for my grandmother (now I see it was for Erin) and had a disturbing visit to the underground crypt.
The ladies shopped, I browsed. Most fun? The egg shop.
Peeked in on the Meet the Experts event as June was looking for her dinner date and we had a lively chat with Michael Levine about heckling birds.
Another great dinner at the Beer Garden with a huge party including Walter Kaye and under the roar of the World Cup. One of those “am I really here” moments shared with Carrie A.
Very interested in a poster by Martha Peaslee Levine on Eating Disorders in Anabaptist Patients. Met her husband, Richard Levine, and had interesting conversation about eating disorders in earlier centuries. Heard buzz about a paper by the incoming AED President, Debra Katzman, about weight restoration and enjoyed discussing it with Janet Treasure.
Finished a discussion started in London with Eric Van Furth from The Netherlands about the speed and method of weight restoration. I argued for dispatch and no patient choice, he for collaboration and caution. We ended up agreeing on the large issues. I learned about his service’s new website (www.proud2bme.nl) and other interesting initiatives – including supports for parents (link now added to F.E.A.S.T. site).
Introduced to the very warm and welcoming new AED Executive Director, Debbie Trueblood, by the ever-generous, Judith Banker. I’ll be giving a workshop with Judy at the Renfrew Conference in November and looking forward to it.
Another great plenary: Current and Future Perspectives on Treatment with the always witty Glenn Waller as moderator.
I don’t really want to talk much about the rest of Saturday. Kitty told me about our friend Joan’s daughter’s death during lunch. Kitty went on to be the discussant for a very well-done plenary on economics and treatment that I assumed I wouldn’t understand or care about but I did. Later Ulrike Schmidt, Donna Friedman, and Susan Ringwood and I presented a workshop on “Do Carers Care About Research?” which was well-received but dampened by the sad news and the exhaustion of the end of the conference. My presentation is online with narration.
Dinner was Italian, I believe. I remember meat and wine. Several of us skipped the closing celebration as we were not of a mood to party.
The hotel staff arranged for my taxi the night before, insisting I only needed one hour. When the taxi was five minutes late and I was panicking the morning staff was unmoved: “You should be there now!”
I made it, though, thank goodness for small airports. Even had a chance to buy “Mozart’s Balls” for my son before I left. Mary and Oddyseus were again on the same flight to Vienna. I had a lovely day on the plane catching up on the emails of the week and working on a project for June A. I enjoyed the Austrian Air atmosphere and looked forward to getting home to my guys, whose tell-tale pizza and movie receipts were also in my email!
Over two weeks later, I still haven’t finished catching up. Still have emails to write, contacts to follow up on, and a lot of information to process. Meanwhile the ATDT Plate drive was a spectacular success ably managed by my daughter this month. But these conferences are always rich opportunities that bear fruit for a long time afterward and I’m terribly glad I went and grateful to F.E.A.S.T. for making it possible.
I’m also very glad to have been with friends when sad news arrived. I was able to attend the funeral as well, carrying the best wishes and condolences of the F.E.A.S.T. board and many international friends.
So glad to sleep in my own bed, be with my family, and look forward to the next conference. (NEDA in Brooklyn, October)