NEDA 2009 Wrap-up

I had a fantastic time in Minneapolis at the NEDA Conference this year. I got to meet a huge array of people who I knew electronically but whom I had never seen in person (Twitter friends and FEAST-y moms, this means you!). I got to have lengthy discussions with Walt Kaye, Cindy Bulik, and Jenni Schaefer. I finally got my copy of Eating With Your Anorexic signed. I learned a bunch of new stuff about eating disorders and in general it was a great weekend.

Great, but not perfect.

I waited to write this partly because the internet connection was crap and cost $14/day, which was something I wasn't willing to spring for after I realized just how crappy it was. I also waited to write this because I wanted at least a little perspective and not to jump in, all emotion mind, and really put my foot in my mouth so far that I could tickle my ileum with my big toe. How much perspective I've gained in the last 24 hours is hard to say, but I haven't changed my mind.

So. Let's start with the good stuff, shall we? There was a lot more discussion of science and research and evidence-based treatment than I heard the past two times I attended the NEDA conference. This is a Very Good Thing. The more knowledge we have of what works--in part so that we can jettison what doesn't--the better off the treatment world will be. Cindy Bulik's talk on Friday afternoon about the current state of ED science was fascinating and will warrant its own post.

The Not So Good Thing about all of this is that phrases like "evidence-based" and "family friendly" have become marketing buzzwords that don't necessarily have a basis in reality. Non-rigorous outcome studies (ie, paying people to respond to surveys and not following up on those who don't respond) are not only worthless, they are also misleading. Furthermore, none of these so-called outcome studies have been published in peer-reviewed journals, which makes them as believeable as pharmaceutical research published by drug companies. Viva Viagra, anyone?

Second, assertion of evidence-based treatments may be true, but they likely don't comprise a majority of the treatment used. I mean, I guess an hour of CBT a week is better than nothing, but if you're paying for treatment that's $1000 each day, it seems kinda silly in retrospect. In the literature I read (which, admittedly, was not exactly a random sampling, but I read quite a few), I didn't hear mentions of EDs a biologically based mental illnesses or "food is medicine" or any of the stuff that we now know to be true of eating disorders.

Instead, these centers have glossy brochures in various shades of green or purple with smiling happy people, with the occasional male or token minority thrown in for good measure. For all of the talk I've heard within treatment centers about Photoshopped models, it sure is ironic that the people used in treatment center advertising are overwhelmingly white, have no zits (they don't even have pores!), and they all have straight white teeth. There aren't any pictures of food* outside a glass of water or a rare green apple. Many treatment centers use photos of flowers/trees/leaves and show stunning vistas of mountains and deserts. Those centers that use Magic Ponies in their treatment have pictures of said Magic Ponies. The copy tells prospective patients how warm and caring this place is, how they will get to the bottom of the pesky emotional issues at the root of their eating disorder, and how they will restore a "lean, healthy body weight."**

Like I said, this is advertising. Take your blinders off when you're looking at Cosmo and Vogue, but keep them off when you look at treatment centers.

And saying "family friendly" is nice, but in many treatment centers, that friendliness only goes as far as Mom and Dad's checkbook. One FEAST mom specifically asked different centers how they included parents and got a lot of hand-waving. She followed up by asking how parents contributed to eating disorders, and many responded "Well, we don't blame them, but..." But almost every center I've been at and other people have been at and I've heard of certainly holds parents responsible in some manner for their child's eating disorder.

This is neither family friendly or evidence based. It's nonsense and bullshit.

I remember being excited when I first started hearing people outside the fairly close-knit ED research community using these terms. They really get it, I thought. All of my advocating is really working. Although I've started to see changes (the eating disorder program at UCSD and the University of Chicago, and UNC-Chapel Hill come immediately to mind), most treatment centers throw these terms to those of us advocating for science and evidence like sticks to a dog. Entertaining but hardly significant.

Go get the stick, Fido! Go get it! Good boy! Sit. Stay.

I'm tired of sticks and Milkbone crumbs; I want a nice big can of Alpo. You have the chance to do something meaningful and important- please use it.

Maybe this is just my innate cynicism leaching out and spilling over. It could be. I'd really like to be wrong on this, but I don't think I am. I'm not anti-treatment center, I'm just anti-bad treatment center. I'm anti-false advertising. I'm anti-say one thing and do another. And it's all too common.

*Not that a photo of a bucket of KFC is exactly a great marketing tool, but the main aspect of treatment is, you know, food.
**Um, did you not learn in medical school that fat is an important part of a healthy body? If you're going to be teaching me not to be afraid of fat, this strikes me as vaguely hypocritical. Restoring fat is crucial to patients with AN. It's not pleasant to the sufferer, but don't conspire with ED fears by reassuring me that all I'll gain is muscle.

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CICI said...

I like this and Carrie speaks the truth from her unique perspective.

I was there too and what Carrie says is true. What we have here in the US is very well marketed treatmnt centers, all not using evidenced based treatment.
Great to have dinner with you, Carrie. Great to meet your wonderful mother.

The_Timekeeper said...

I have been a patient at many less-marketable but more evidence-based programs (by default, since my insurance only covers hospital-based treatment), and I appreciate those settings and programs for what they are and the science behind their protocols. Yet, if I had had the choice, I would have gone with one of the marketed programs, where things seem nicer ... more touchy-feely ... less about pure re-feeding, CBT, and DBT ... more about experiential therapies to distract me from having to eat, be away from home, etc.

It just sounds more pleasant. And it's probably easier for parents to send a child off to a place where they get to slide down zip lines, go on outings, ride magic ponies and live in wig-wams.

It's too bad there can't be more overlap ... more gray area ... between the two approaches. It's also too bad that folks in the business of taking care of patienst & families at their most vulnerable ... ultimately put business before medicine, because it's the marketing and the insurance reimbursements that keep the doors open.

Not that they don't care, but caring comes with a pricetag, and since there still isn't an agreed-upon "cure" or standard for eating-disorder treatment (other than making sure patients get some food and achieve stable lab values), that leaves lots of territory for niche-marketing that may or may not be good science.

It's both an exciting time for eating disorder research and discovery ... and a frustrating time for those who have to muddle through while the scientists try to figure out how to best use the emerging information to the most effective therapeutic end.

Eating Alone said...

Hey Carrie, it was realy great to meet you. I had a great time there. You brough up a lot of things that I didn't think of about treatment centers. So I'm going to think about those things. And yep the connection speed was nut's. I thought a big city would be better but it was totaly lame.

As to the photo shop, I can't speak much about that but, I can understand why they would put the success stories up and out there. And why they would show people that are more along the way in recovery. I don't think showing patients with NG's and IV's in them something you want. If you have no knowledge of the system (like me) seeing that would scare the cr, err it could be very scary. And seeing wards where you are basically locked down and with no real freedom or privacy for an adult thinking of going in would send most of them screaming. That said I'm glad you said what you did about race and shapes and sizes. I had not even picked up on that. I'm well conditioned.

RemudaGirl said...

As someone who spent a great deal of her summer at a shiny, green treatment center with pretty horses, a rock wall, and ziplines, I have to argue that all of the features of the center that might seem superfluous were actually quite essential to my treatment.
I know you said that you do not believe that all treatment centers are evil, and I'm not discounting that at all, but I wanted to just point out a few things from my experience.

First of all, as someone who has co-occurring disorders (don't we all, though?), including bulimia, social and generalized anxiety, and depression, my twice weekly horse rides were my saving grace. Being in the milieu with 20 girls all day every day was extremely difficult for me-my social anxiety made me constantly on edge. But when I got to see and ride my horse, I finally got unconditional, non-judgmental love and affirmation.

And the day that I had to face the rock wall was the biggest turning point in my 75 days of treatment. I could go on forever, but I just wanted to point out a few ways in which those features of treatment that seem to be included solely for marketing purposes are so much more than that.

Laura Collins said...

You 'speak truth to power' so well.

And who else can weave the ileum, Magic Pony, bullshit, Viagra and Fido into one post? Google will implode!

Carrie Arnold said...

Well, the combination of digestive tracts (ileum) and "bullshit" isn't that much of a stretch, Laura...

I will respond more later, but I have to run right now.

Thank you all for your detailed thoughts.

Anonymous said...

I think it is important that you point out which UCSD program you are referring to as they do offer two completely different programs. I have not experienced the Maudsley program, but having gone through their IOP program I would NEVER EVER recommend it to anyone. From addressing specific individual's tardy payments to not including many of the services advertised on the website to permitting very inappropriate discussion, UCSD's IOP program is/was (when I was in it) poorly constructed and led in an unprofessional manner.

Erica said...

"This is neither family friendly or evidence based. It's nonsense and bullshit."

Amen, Carrie! Another great post, thank you so much. And by the way, do you know where I can get one of those magic ponies?!?

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I'm a science writer, a jewelry design artist, a bookworm, a complete geek, and mom to a wonderful kitty. I am also recovering from a decade-plus battle with anorexia nervosa. I believe that complete recovery is possible, and that the first step along that path is full nutrition.

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nour·ish: (v); to sustain with food or nutriment; supply with what is necessary for life, health, and growth; to cherish, foster, keep alive; to strengthen, build up, or promote


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