Posting from AED conference

(OK, I tried to blog from the Academy for Eating Disorders conference in Baltimore this week but computer troubles got in my way.)

If you had been there, you would have heard Dr. Thomas Insel of NIMH say that families have been ill-used for too long in the treatment of eating disorders. He said he almost felt a "day of atonement" was needed.

You would have heard Dr. Ivan Eisler say that the history of "parentectomy" in eating disorders treatment was simply wrong - and he symbolically threw quotes by Bruch and Minuchin and Gull and their ilk blaming and excluding parents into a recycling bin.

Fascinating work was presented on topics as varied as: "Eating Disorders and African American Women," "Eating for Dopamine - An Animal Model of Binge Eating and Bulimia," "Mindfulness-Based Eating Awareness Therapy," and "What to Do about EDNOS."

I felt as if I was backstage at the Oscars as I watched the leading lights of ED research pass by in the hallway. And, as usual, I felt sad as I talked with the many treatment centers with advertising booths at the conference who were unfamiliar with or dismissive of family-based treatment.

Here's what I heard from most of the clinicians and scientists I talked with: "We've changed." Some were even skeptical that the parentectomy and parent blaming concept is still being peddled out there. These are the good guys, mostly, the professionals who remain curious and engaged in the research and the application of modern mental health care theory. AED has my admiration for improving the worldwide treatment of eating disorders and for their true commitment to including carers and families in the conversation.

Thank you, AED, for inviting me and other parents to the conference and for listening to parents and caregivers.


  1. Thank you Laura for going - I know you yourself have been instrumental in some of this attitude shifting - and thanks to your family for letting you go. Hope you can have a rest now after all the fun and hard work.

  2. Laura,

    You're making me so jealous that I couldn't figure out a way to go- I'm only a mile or two from your hotel there right now.

    I think some of the change is difficult because these professionals were basically indoctrinated to think one way. Are some willing to change? Absolutely! But I think part of the resistance on the behalf of treatment centers is that they don't see what FBT has to do with them and their purpose. I do believe residential treatment has a role, specifically in older sufferers (in their 20s and beyond) who might be in that odd stage of needing support but not having a way to find it. But FBT is sort of the opposite of residential treatment. It can be a back up or a supplement, but nonetheless. I can imagine the treatment centers thinking: but change to what?

    Anyway, I'm pulling a Mary and rambling on and on. Leftover pizza awaits me.

  3. Thank you for this and hope you will write up some more reports of the talks. I'm blogging right now on a front NY Times article about the (it seems to me) questionable use of Risperdal to treat eating disorders.

  4. I think, as a treatment center, it would be tough to advocate "family based treatment," in any sort of 'advertised' sense because you don't want the 'wrong' family trying the family-based treatment. And by 'wrong' I mean family's like my wife's, or other families where the parents' unhealthy attitudes towards food and body image contributed to triggering the biological predisposition.

    It's a tough position to be in, I'd think.

  5. kristina - I look forward to your blog on that!

    HfH, treatment centers (and the insurance companies that feed them) have to release the person somewhere. Good, bad or indifferent the home they come back to needs training and coaching and integration into the "plan." Without that connection - or a husband like you, Mr. I'll Wire your Shower for Sound and make all mothers wish they could clone you for their daughters - they're at the mercy of an ugly disease.

    The real reason, I fear, is that treatment centers have no financial interest in an approach that would prevent many from ever needing residential care, would shorten the duration of care, and would lessen the numbers who relapse.

  6. Yes Laura, do blog more. In particular I'd be interested to know What there IS to do about EDNOS

  7. Managed to post before I was ready there - I was going to say, did you manage to get to that session? The program looked so full that I was wondering how on earth you chose which sessions to go to.

  8. I didn't get to the EDNOS one and wish I had: important topic. It simply was not possible to get to all the ones I'd like to. If you are interested, though, you can buy cds of the sessions or the whole conference: IntelliQuest Media

  9. Laura,

    This is a post/blogg I previously missed, but really find so very relevant and an area where we all need to keep plugging away at.

    Dr Insel's comments re "families being ill-used", etc. is so head-on! No one else seems to be speaking to this, or afraid to? I applaud his honesty and empathy, it's really so overdue.

    I would have thought, and naively DID think, when our d was diagnosed/hospitalized with AN that the Dr's, staff, etc. all knew what they were doing by this day and age- we sure didn't! But I was horrified to see they were as clueless as we were, and hadn't any idea of what they were doing, and arrogantly were not going to admit so; outside of needlessly putting us through alot of neglect and indifference for their own salary upkeep.

    How is any of this type of "treatment" even remotely considered ethical and/or protocol in our century and why doesn't anyone blow the whistle on everyone rubbing eachother's backs to keep the $$ going to feed- not the patients- but their own arrogance and shortsigtedness?!

    The IP treatment programs are so quick and glossy to attract their spa-like qualities- but what is really going on in these facilities that parents/families release their children into; sometimes months on end and very far from home? There is no interest on making treatment plans really about "recovery"- that's the killer in all their slogans and admission counseling, tour guides.

    Listen to the nurses, and some of the staff, and of course, the patients- they will tell you what goes on in these facilities designated as ED Treatment Centers... I've been saying this over and over again- it's a revolving door- to keep them in; NOT help them get out! And if there are more medications involved, the better as well. Desperate parents are looking for answers and help, and many give up before really looking into what's really at stake.

    It IS really hard to make something like Maudsely or FBT appealing to many of these Dr's, clinicians, (oh, and especially therapists- becuase they want to know "how to turn Maudsley off"- I'm not kidding, my d's former therapist said this!) Turn it off, and keep the tab running on your billing.

    You're right, something as personal and intimate as FBT/Maudsley requires WORK and forming a REAL relationship- hello! with the patient and family. And just how do you make that lucrative to the medical/pyschological community? Let them really lay their cards out on the table- so many of them are untrained in this method, yet proclaiming they provide these services in their facilites/clinics- I'm sorely confused... guess that is also the purpose. Until that game is over- they cannot say "We've changed."

    All of us that have re-fed and are struggling with home-based care of our loved one's knows this- there are no short cuts, pills, and easy answers. But there definitely should be some real support for the families- which these Dr's with their roster of patients, limited time, and IP programs are not set up and/or want to do.

    I can also see the other end of the spectrum that HFH sadly alluded to with some families/parents... this would probably make any Dr who wants to retain all objectivity and distance him/herself from any personal interactions within really helping a family to get through this in a healthy, sane, whole manner. Denial, shame, and guilt are all still so heavily saturating the silence towards ED's and effective recovery.

    I would be interested to read more that you have on this conference and what further work/research you uncover- keep us posted! I'll also check out the link you posted of the CD sessions.

    Thanks for all your courage, love, and hard work Laura- you are a comfort and source of hope for us all!

    Shanti~ Tracey

    Sorry for my length, mispellings, etc. had to get this in before heading out!

  10. Tracey (and all) - I understand your frustration and share it. But don't wait for the revolution: you have to just get out there and get involved. Every parent voice counts: write letters, call congress, talk with doctors, talk with your community. If not us, who?

  11. I've seen your book before and when I came across your blog decided to stop by... I am a recovering anorectic and mental health activist (on some level, at least; I do what I can for now) and really respect your desire to bring parents into a more involved treatment plan with their children.

    I agree that parents should ideally be more involved. However, I think that too many parents want to go in to this with the belief that they can aid in curing their kids by being more attentive, more careful, something. Parents need to realize that, in many cases, their actions DO contribute (not cause, but contribute) to our issues and in order to truly help us they need to seek help themselves.

    In my case, my parents were on a far extreme for unhelpful behavior. My mom has a history of COE, my dad I'd label as ED-NOS due to his alternating patterns of fasting, over-exercise, and binge/restriction. When my eating disorder came to light, their initial actions were to take me to their church's pastor for counselling and exorcism. Like I said... Extreme case.



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