Earlier this year I received a notice that the F.E.A.S.T. community would be hosting a 2-day conference in Alexandria, Virginia. I also knew, because I'd received several emails, that the National Eating Disorder Association would be hosting a conference in Los Angeles the month before. What to do? I could not attend both; I had other plans for October but not that weekend; and I had been a staunch supporter of Laura Collins since I first encountered her book
Eating with Your Anorexic - How My Child Recovered Through Family-Based Treatment and Yours Can Too published in 2005, the year my daughter, slowly declining since 2002 after she relapsed, careened towards death and needed intensive treatment.
My thought was that once she was released from treatment, she could live with us and I would try to use the principles of the book and the other references. My daughter was in her early thirties by then, an adult, and determined to do things on her own. The "parentectomy" encouraged by the treatment center was successful and my hopes of transitioning her for a few months went by the wayside.
I decided to go to Alexandria, Virginia since I had attended the NEDA Convention just a year ago, to meet, hopefully, many of the parents who I'd met on Something Fishy/Around the Dinner Table and especially, Laura, with whom I had been corresponding off and on for awhile.
I was intrigued by the purpose of the Symposium, too:
Moving forward from a history of being blamed and marginalized, families will collaborate with the scientific community to re-write the map of options and actions for families. A new era of science-based, family inclusive, and truly optimistic eating disorder treatment begins now.
I've decided to take the agenda that we were given and use it to describe my personal journey and my "take-aways" through the next few days, starting with Wednesday night at dinner.
The dinners at the end of the day deserve a special mention. As my son rightly has noted, I'm more of an introvert than an extrovert - perhaps somewhere in the middle. So, I have have found it difficult to plop myself down in the middle of an event and easily connect with people. I've been working on this all my life but it's still not easy for me. As well, my sensitivity level is such that after awhile too many people and too much noise leads me to escape for awhile to regroup. Last year at the NEDA Conference I often found myself adrift and still very much overwhelmed by my daughter's severe illness. Attempting to connect was hard and there weren't to my way of thinking opportunities to do that after a long day. And, besides, truthfully, I was really tired even before I got there but eager to learn as much as I could. As my blog after that event illustrates, I did learn a
lot and became a major supporter of NEDA.
This year, just knowing that there would be an organized dinner at which I could just show up and sit next to someone, helped me a lot. I joined a large group the first night at a "George Washington ate here" place - Gadsby's Tavern and walked there with a couple - parents - from Michigan and a pediatrician from N. California. A great way to get the evening started. Then I sat with them at the table, too. We had a good time!
So back to the beginning.......
The conference was at the Holiday Inn in Old Town Alexandria, Virginia. I obtained lodging there. A grocery store was across the street where I purchased a few things I like to have that I don't want to haul in my suitcase. The facilities worked well - the large dining room (where we enjoyed lunch each day) was separate from the large main meeting room. There were break-out rooms along the corridor with the corridor and side corridor being wide enough to provide room for participants as well as snack tables, beverages, the daily morning buffet breakfast, and the information/registration table. My room was large and comfortable and was on an upper floor, something I appreciate when traveling by myself. The entire hotel is non-smoking, another plus. A
USA Today appeared at the door each weekday morning and The
Financial Times was available in the lobby on Saturday morning when I left early for the airport. Incidentally, the latter is new to me and I loved the variety of articles. I finally got around to reading
USA Today in the evening right before bed.
Thursday morning breakfast was served beginning at 7 a.m. and Laura Collins, F.E.A.S.T. Executive Director, was introduced by her daughter to start the program at 8:30 a.m. I felt that Laura's opening remarks drew us all together and laid out the plan for the conference and our collaboration. I noticed early on that Dr. Doug Bunnell, past President of NEDA and a charter member of the Academy for Eating Disorders was there - a plus for the idea of collaboration, too.
A highlight of any conference (to me) is the coordination of the introduction of speakers and transition from one speaker to another. So well done! Having been a member of Toastmasters for awhile, I learned that this aspect and skill are very important to set the professional tone. Carrie Arnold and Stephanie Milstein, PhD, served as the Masters of Ceremony team, coordinating the hand-off of speakers for two days. Carrie is a writer, author -
Running on Empty and
Next to Nothing, and blogger (ED-Bites.com) in recovery from anorexia. Stephanie is a doctoral level clinical psychologist licensed in the state of Michigan.
I certainly cannot report everything stated; however, I will provide some of the takeaways that stuck with me. It's my understanding that information presented at the conference will be posted on the website at a later time.
I gathered from the two-day schedule that we would first be reminded of where we are in terms of what's come before and what is happening now. We'd also be alerted to what to look for and what to set aside. From there, thanks to Ruth Sullivan, we'd get a look into another activist's method for gaining traction and learn about current efforts.
The second day we'd move quickly into experiences and what has worked, build on the conversations that had been going on for more than twenty-four hours at the conference as well as those outside involving all the organizations having to do with eating disorders, and also start to look forward using the questions provided including "where are the new parent activists going to come from?" From there we'd get some guidelines, and then hear from Dr. Thomas Insel, director of NIMH, who would summarize and give us a heads up on where research is headed. The question and answer period to follow was designed to provide the panelists here represented by the acronyms of their organizations (NIMH, EDC, BEAT, AED, and the AAP) with our concerns as parents and to obtain their feedback.
Finally, we were to be given the opportunity to hear from four people in recovery from the United States, the UK, and Australia. A rather wonderful way to wrap it up.
The first speaker was Dr. James Lock, a professor of Child Psychiatry and Pediatrics in the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine where he also serves as Director of the Eating Disorder Program for Children and Adolescents. He is co-author with Daniel Le Grange of the important book,
Help Your Teenager Beat an Eating Disorder. Their work has changed how eating disorders are treated. His research includes 4 current NIH funded projects and his recent research focuses on integrating treatment research with neurosciences in eating disorders.
His presentation, titled
Rocky Terrain: Challenging Ideas About How Professionals Look at Families began with a photo of a pile of rocks. He steered the direction of the conference towards better understanding of why many in the Eating Disorder Treatment Field use outdated methods (they were taught that way and find it difficult if not even terrifying to change what they are so invested in) and then on towards how to encourage change. He reminded the audience of the original opinions about autism and schizophrenia and eating disorders, citing several well-known names whose theories are no longer mainstream. He also reminded us that medicine is a "practical art" and used Greek mythology imagery to discuss the old way love affair with etiology that eventually crashed on the shores. He reminded us, too, that
not everyone responds to the same kind of therapy and expressed concern about the insular quality of treatment centers.
This reminder was an underlying theme that was repeated throughout the conference.
I connected with his list of characteristics of a good parent in a crisis situation: enmeshed, rigid, anxious, over-involved. As he stated, when a child is ill, why not? He also referred to a study that looked at parents of children who were cancer survivors and found many suffered from PTSD even ten years later!
Becky Henry, author, speaker and coach and member of the F.E.A.S.T. Board of Directors moderated a question and answer period involving those present with Dr. Locke. Some of the highlights I grasped included:
His suggestion that parents remember a therapist may have been taught in the "old way" and need to be approached with the initial question, "Do you know about Family-Based Therapy?" If amenable to hearing about the technique, share information and get a sense of what might be next. If not, move on.
To the question of when to start therapy after diagnosis, Dr. Lock referred to the responses of the patients themselves: 1/3 wanted to work; the other 2/3 were not ready yet. The conceptualization has a lot to do with the reaction of the 1/3 who said they were ready to work, he said, and when healthy behaviors are disrupted for a long time, the individuals take longer to shift back to healthy behaviors. He said art therapy was okay but otherwise to follow the suggestions in their book and manual at the beginning.
Re underlying traits, acknowledging that some do not fit the profile, he said there is a continuum and that anorexia can exacerbate these such as anxiety but for others, not at all.
Re boys with eating disorders - he remarked in his experience that although the frequency of illness may be less, the personality and behaviors are similar to those of girls. He said his studies were the first to include boys and noted that the content of an assessment for boys and men needs to improve; a thorough and in-depth study is needed.
Following the break, Cynthia M. Bulik, PhD, author of the book
Crave (see my review elsewhere on this blog), and Director of the University of North Carolina Eating Disorder Center, concentrated on the avoidance of pseudoscience and misinformation.
She underscored the complexity of eating disorders and reminded us that a cure will not be simple; genetic and environmental information blend in unforeseeable ways. She advised us to avoid blame and sensationalism, recommended Carrie Arnold's blog (ED-bites.com), and emphasized again that "no one shoe fits all". This attitude is important, especially for those fighting an ED for whom treatment did not work (including FBT). She said the emphasis on only one way can lead to what she called
evidence-based guilt on the part of the patient. In other words patients can be overwhelmed by guilt when they are repeatedly told that x treatment works and yet can see for themselves in their own experience that it does not. The
no one shoe fits all information can also help parents help their children look for something else rather than just give up. Bulik also reminded all of us that we mustn't let desperation interfere with our critical thinking as we examine information presented to us.
Next up was Dr. Walter Kaye, Director of the University of California, San Diego Medical Center Eating Disorder Treatment and Research Program. Building on what Dr. Bulik had said, he noted that to date our evidence base is limited; a lot of research involving more participants needs to be done. In other words, currently there is little long-term outcome data. This will change as more funding for such research becomes available and our work is to agitate for that funding.
Dr. Kaye briefly summarized what is known in the fields of genetics, biology and traits. He noted that 50 to 70 percent of those who develop eating disorders recover by their mid-twenties. Why? He repeated that we do not have enough data on the course of the illness to answer that question. We do know that some people fit a profile; others do not and that traits continue after the eating disorder is gone that need to be addressed.
Dr. Kaye drew attention to the state of programs for the treatment of eating disorders. He suggested that programs need to provide more data to illustrate that their approach can work (if the materials say so) rather than just publish blanket statements about their success. He said in our search for a program we need to know who is involved in the direct care of patients and especially the time they've spent in training, their expertise, their skills and direct experience with those with eating disorders. As an aside, he observed many sites will mention they have a staff but will not provide a list of who's currently on the staff, whether they are full time or part time, and what their credentials and background are. He emphasized the importance of staff training in the facility's environment. We, he said, should be able to contact the program and evaluate the owner's expertise in the field, as well.
We, he said, should look for constructive skill training with real life applications and preparation for the patients.
Dr. Kaye summarized the need for data, better knowledge of genetics and of behavioral wiring, improved treatments, outcome studies and Centers of Excellence which provide intensive internships in those improved and evidence-based treatment programs.
We all should call for the intensive re-training of all those involved in the treatment of eating disorders. He repeated that currently we have what he termed terrible longitudinal data and expressed the hope that with funding such as he has now received, he will be able to add to that data.
In closing, Dr. Kaye announced that he had received funding to conduct brain imaging studies on a cohort of those in recovery between the ages of 18 and 45, who are not on any medication, and for women those who have menstrual cycles. The funds will pay for travel to his research center and expenses while there. Here is
a link for more information about the study and eligibility.
After a welcomed break for lunch following an intensive morning, we returned to hear from Dr. Ruth Sullivan and her summary of the history of the organization that she helped found - the Autism Society of America - and what we, as parent activists, might take away to implement in order to gain traction. This
link to an interview provides a lot of the information we gained yet for those present her personal spin and sense of humor brought the history of the Autism movement to life.
Dr. Sullivan then joined Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center, in a discussion moderated by Kitty Westin of the Emily Program. Some of the points that were highlighted in the discussion included:
- work to avoid infighting
- define common ground
- take a stand
- obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
- contact state and national legislators
- ask for what you want and work with other ED organizations to say it in the same way
- involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
- develop a forceful and attention getting PSA
- continue to research the data and the science
- demand better quality of care
- invite legislators to meetings, to breakfast
- work to agree to disagree and still talk
- respect the dignity of others
Re the PSA, I was quite taken with the suggestion to develop a poster/an ad/a PSA using the photo of a young person apparently in terrific health coupled with the words, "this is the face of anorexia". As we learned during day two, there is a theory that eating disorders like other developmental disorders first begin below the surface, so to speak, and that the actual behaviors of the disease itself indicate a late stage in this disease. This poster would speak to that fact and experts might want to work on what the poster might say.
Wonderful activists Jeanine Cogan, PhD, and Kathleen MacDonald, of the Eating Disorder Coalition came to the microphone and continued the discussion, specifically geared towards working with legislators. They highlighted the F.R.E.E.D. Act and its potential far-reaching effects on policy and practice in this country including, for example, the establishment of Centers of Excellence. They both emphasized the importance of the stories of those affected by eating disorders and gave examples of the EDC's effectiveness to date. They encouraged those attending to participate in lobbying at the Capitol.
We closed out the day with the opportunity to attend one of four offerings in Activist Training: Government/Policy Change; Traditional Media and Public Speaking; Virtual Media; and Online Social Networking. I chose to attend Carrie Arnold's group to discuss Virtual Media since I've been enjoying working on my blog and am wondering how I might improve it. Carrie focused first on on-line news-sites and the need for new information all the time that is presented in an exciting, edgy and sometimes but not always negative (sensationalistic) way. She encouraged those of us who visit such sites to click on "like" if we do because the number of hits influence the direction of future articles (as well as bring in advertising income) and to not share a story if we disagree with it. Carrie then outlined some poinst to know about blogging, using the history of her site as an example. She reminded those present that the information becomes archived forever on the internet. She advised using pseudonyms if one is concerned about privacy and she gave us tips about how to gain more information about a subject in the blogging and twitter world.
After resting up, I joined quite a crowd at the Bilbo Baggins restaurant where we commandeered a large room and had a raucous but very good time. I sat with a new group of folks and was fortunate to meet several moms whose names were familiar to me on Around the Dinner Table and to sit next to a woman in her twenties who, after battling anorexia for quite some time, established recovery by researching the Around the Dinner Table Forum and extracting menu and food options to give herself the structure she needed until she re-nourished herself and moved on.
I was glad to get to bed shortly after that and enjoyed another good night's rest in preparation for the day ahead.
