Friday, October 05, 2007

San Diego dispatch

Here I am in beautiful San Diego at the NEDA conference. It's my first time at something like this and I'm not sure what to expect. So far . . . well, it's a mixed bag.

Yesterday afternoon I was lucky enough to have lunch on the UC-San Diego campus with Dr. Walter Kaye and his talented team. Their 5-day Intensive family outpatient program for treating anorexia and bulimia sounds fab to me. (Check it out at http://eatingdisorders.ucsd.edu/IFT.html.) If the program had been around when my daughter was diagnosed with anorexia, I think we would have been here in a heartbeat. And I think it would have been a life saver. Literally.

Back at NEDA, pretty much the first thing I did was wander the hall of goodies, where the folks who treat e.d.s set up booths and put out their marketing info. It was all very slick and very disheartening. I walked around asking people what their treatment philosophy was. Half of them didn't understand the question. Many reassured me that they had "all kinds of treatments." Horses seemed to figure prominently, at least in the literature, along with "groups getting at the psychosocial dynamics of anorexia" and so on. When I asked what kind of evidence-based treatments they offered, most looked blank. When I asked how or whether they included families in treatment, a few sounded intelligent, but most, once more, looked blank.

Then again, we're dealing with an area where the American Psychological Association itself still lists
"dysfunctional families or relationships" as one cause of anorexia, and describes the anorexics as "refusing to eat." Tsk tsk, APA; you're sadly out of date. If you knew one thing about anorexia you would know that it's not a refusal to eat; it's an inability to. And you'd also know that PARENTS DO NOT CAUSE EATING DISORDERS. (Read the APA's ill-informed e.d. page at http://www.apahelpcenter.org/articles/article.php?id=9.)

The worst of the hall were the booths sponsoed by the big guns in e.d. treatment: Renfrew, Rader, Remuda. There were lots of slick little products to take home, ranging from staplers to, I kid you not, Zen sand gardens. What does all this have to do with treatment? You have to be cynical here and remember that there's very big money attached to the treatment of e.d.s. I would have far preferred an outcome study for parents to take away over a cutesy little mirror with an affirmation on the back. Please.

The keynote speech last night started out well, with a report from Lynn Grefe, the president of NEDA. Next up was a young editor from CosmoGirl whose main purpose seemed to be to convince us of how well-meaning that magazine is about presenting positive body images to young women. It sounded like one big advertisement for CosmoGirl. Somewhere in there she referred earnestly to an article they'd run called "Fat and Thin," and flashed a visual from the magazine on the screen. There it was: a headless fattie, next to a headless waif, followed by more earnest talk about how obesity is an eating disorder, too.

I wanted to stand up and say, "That's like saying thinness is an eating disorder, honey. It's not how much you weigh; it's your relationship with food and eating." But it is, after all, my first NEDA conference, and I was feeling a little shy.

Next time.

More from NEDA later today.

6 comments:

Rachel said...

I'm noticing this trend more and more of lumping obesity in with the study of eating disorders like anorexia and bulimia and it troubles me. Not only does it minimalize eating disorders as a psychological based disease on the whole, it also places a blanket diagnosis on millions of people based on thing more than assumptions about fatness.

I used to work in marketing, and all the conferences and expositions I attended were usually staffed more so by clueless PR people or marketing folks like myself. Some companies even hire good-looking, big-breasted women to attract attention to their booth. I wonder if this conference wasn't structured the same way. It might explain the apparent vapidity of booth representatives on plans for treatment, at least.

Tracey said...

Harriet,

Great to read some updates from your experiences at the NEDA conference, how is Laura doing? Sticking the Maudsley Fork into ingnorance I hope!

It really angers me still that the glamorizing of all the treatment centers seems so unaddressed and monitored... but we've been dealing with that aggravation for the past year- IP/OP treatment facilities are pushed down every parent's throat.

I hope you and Laura are able to make some noise about the need to support families FULLY who choose Maudsley- this all seems to be falling on deaf ears still. And the clinicians and randomly formed "teams" that parents end up working with, especially here in Wisconsin are just using the word Maudsley and they don't know what the hell they are doing... sorry to be blunt. But they don't truly support, coach, and assist parents and families who are begging for support.

This is disasterous, and for many parents they may end up not having any other resources, be incredibly drained, exhausted, etc. and be left scrambling with horrendously inadequate IP/OP programs.

Keep up the good work, say "hi" to Laura and keep us all posted.

Luv~ Tracey

"The end of all our exploring
Will be to arrive where we started
And know the place for the first
time."
-T.S. ELIOT-

Susan said...

Harriet,

Thank you for taking the time to let us know what the reality is out there in terms of real change in ED treatment. While disheartening, it lets us know how important it is to continue to spread the word to everyone who might listen. Susan

marcella said...

The commercial sponsorship of medicine has always worried me, being from a country with a (theoretically) socialised health service. The British Eating Disorders Association (bEAT) AGM is being sponsored this year too but at least I doubt there'll be much emphasis on horses in the literature.
I'll let you know whether the carers' conference in February is dominated by such stuff too, or whether our good scientists will shine through just as I am sure the combination of you, Laura and Walter Kaye will do.

Harriet Brown said...

I guess I was naive, a bit, about the role of these residential treatment centers. They're no different from Big Pharma: making a million bucks on the backs of those who are ill and their families. Abhorrent. Which also appliies to tonight's "entertainment" (and I use the word loosly): a musical about eating disorders.

Laura and I went to dinner with Walt Kaye and his amazing treatment team instead. We even had birthday cake for his birthday. Mmm, mmm good. Jane, we thought of you.

Tracey~ said...

Harriet,

Oh yes, lovely "Normal"... now how did you and Laura enjoy that musical treasure? Yack!

I can't say enough how hopeful I feel that both you and Laura were in attendance at the conference and giving voice to parents who really want to see effective treatment CHANGE within ED's. Looking forward to reading the experiences and feedback of Dr Kaye, among all the rest.

Best to you!