May 31, 2012

Registration is open for Alexandria conference for parents

I'm delighted to announce that registration is now open for the next F.E.A.S.T. conference for parents:

There's No Place Like Home
November 30 & December 1
(come a day early to attend an exciting free Congressional Briefing in Washington DC)**

Registration is limited and early bird rates are, too. Make your hotel reservations now, too: last year some registrants had to stay at other hotels at higher rates.

You can also register for a dinner the night before the conference honoring F.E.A.S.T. Advisors, and a Ruby Slipper party on Friday night.

We'll be announcing speakers and topics and other special features soon.

See you in Alexandria!

**also, stay for an Eating Disorder Coalition "Family Advocacy Afternoon" on the Hill!

May 28, 2012

Australian conference for families is on the calendar!

Happy news!

June Alexander with Professor Janet Treasure at the 2010 EDIC, London. At Home with Eating Disorders, Brisbane, May 23-25, features Prof. Treasure as a keynote speaker. Carers will not want to miss her address.
Mark your calendars for the At Home With Eating Disorders conference in Brisbane, May 23, 2013 - a wonderful opportunity for families to come together, learn, and strengthen the Australian networks and communities that serve families and individual patients.

Congratulations to the F.E.A.S.T. Australian Task Force for this collaboration with other organizations to create an historic event!

May 27, 2012

Dot Net Nuke is your friend?

If you are familiar with DotNetNuke hosting, I need advice: email me at Laura@feast-ed.org ASAP!

Believing is seeing yourself as effective

Confidence is tremendously difficult when a parent is faced with:
  • A frightening prognosis
  • Perplexing symptoms
  • Confusion about what is their child and what is the illness
  • No clear understanding of the illness from friends, family, media, literature, or clinicians
  • Being asked to do things that distress one's child
  • Parenting that seems inappropriate for the loved one's age
  • Actions that others have told you explicitly NOT to do
  • Other adults, even spouses, pulling in different directions
  • A situation that requires throwing out nearly everything pleasant and normal
  • Challenging, often long-distance, appointments where you will be given homework, not a magic wand.
  • The prospect of doing these things for a long time
Those are what parents are being asked to do when they begin Family-Based Maudsley. They don't sound good. Sending the kid to a nice ranch or even a stay with Nurse Ratched may easily strike a family as a better and more effective idea: after all, what do WE know about treating mental illness?

But here's why this unappealing scenario is still the first thing a family should consider: getting your kid back. If you want to double your chances of getting your dear son or daughter back to health and on to normal development then it bears consideration. It's the hardest parenting and caregiving and marriage-relationship work you'll ever do, but consider the alternatives.

But if you do it, know that your confidence is part of the calculation. Find it, nurture it, protect it, spread it - fake it when necessary - but confidence is one of the greatest medicines you can offer.

'I Know I Can Help You': Parental Self-efficacy Predicts Adolescent Outcomes in Family-based Therapy for Eating Disorders.


This doesn't just go for FBT/Maudsley. It doesn't matter what "approach" or combination of tools your loved one needs: confidence is key. And HARD.


May 26, 2012

Kartini doctor and family on NBC

Kartini Clinic's Dr. Julie O'Toole, a F.E.A.S.T. Advisor, is interviewed on TV in a very moving feature on a family that faced anorexia nervosa together.

Anorexia in boys an overlooked condition

May 24, 2012

neat: pictures of anosognosia

Not that I need a picture, but for those who still struggle with the fact that the brain can blind itself in very specific ways - and that this changes the responsibility of caregivers:


Breakthrough Pictures of Anosognosia


Authority

It strikes me more and more that the real problem isn't that most parents get bad information and consultation about eating disorders.

It is that even when we have the best information we don't have the authority to assert it.

I can point parents to good information, stuff I KNOW is correct, but if their pediatrician, coach, ex-wife, therapist, sister-in-law, emergency room doctor, teacher, and best friend don't recognize that information as authoritative then it doesn't really matter how right the parent is or how helpful the information could have been.

thank you, ELT, for the lovely graphic of ruminating
I know this in my own life. I deal with a range of doctors and professionals and friends and family who don't find me any more authoritative than any other mother on my street. It doesn't matter how many printouts I bring to a psychiatrist's office, or to our school board office: to them these are matters of opinion and theirs is just as valid.

Getting a kid well from an eating disorder takes a team effort: all the adults need to be on the same page. How many of us, even me, have that team? I don't. I may have an easier time finding clinicians who are clued in, and I certainly know the difference between them, but even with all that I couldn't form an ED team right now without having elements that pull away from what I know are best policies.

So, my question for today is: how fair is it to inform parents about the science and the most progressive treatment if they can't access it? If they have to form their own treatment plan and fight the other adults and professionals who know less?

Would it be better to save parents the anger and frustration of "what could be?" Would parents be better off if they complied with "what is" rather than trying to make it better when they can't?

I'm seeing too many parents get torn up and suffering anguish from knowing better than their clinical team, and spouse, but not having the authority to be believed. I know what the answer is in the long run: changing attitudes and better disseminating the science. But in the short term what happens to the family TODAY?

These are the things I ruminate on in the night...

May 23, 2012

night editor: wake up!!

This may well be the worst reporting, worst headline, worst understanding of the issue at hand I've seen in years. It's like a 3D scan of fallacies!

3D scanning ‘is best way to tackle anorexia’


I haven't a clue on the actual research, but I will assume that the reporter has completely lost the plot and may need to have his or her brain scanned for signs of life.

Body dysmorphia is not anorexia. Anorexia is not a failure to see one's body accurately. Anorexia isn't a diet in search of different appearance. Showing someone their body in all dimensions isn't a treatment (though it might be a tool in treatment and why do those silly chalk outlines when you can spend $£€$ on fancy equipment.

And honestly, the image of tackling someone with anorexia...


May 22, 2012

"anosognosia is blindness," and tough to pronounce!

Most people who learn the word anosognosia immediately understand its role in eating disorders, especially anorexia. NONE of us have a clue, at first, how to pronounce it!

TAC knows how to pronounce it, and here's a new blog post on it.

For many years, since I borrowed the term from the bipolar/schizophrenia/stroke arenas, I have encouraged eating disorder professionals, parents, and the public to account for this phenomenon: the brain can blind itself to certain parts of reality. It's not denial and it's not stubbornness.

Like a stroke, anosognosia can blind only one area of perception, insight, or motivation. It can be partial, and it can wax and wane. But to assume that a person with an active eating disorder can see his or her body, relationships, food, and medical issues as clearly as they see the clock on the wall or Pythagorean Theory is a willful blindness on OUR part.


May 21, 2012

Why is saying anything about parents and eating disorders unacceptable?

I keep hearing people say "I feel like I can't say ANYTHING bad about parents without being attacked."

Let me reassure you.

For example, you can say:

"Some parents teach their kids to hate their bodies."
"Some parents make their kids feel awful about themselves."
"There are mothers who create a toxic environment around food in their homes."
"Dads who exercise obsessively set a terrible example for their kids."
"So many parents don't have a clue about how to feed their kids."
You can even say: "Parents suck."

You can't say:
"Parents cause eating disorders in their kids by teaching them to hate their bodies."
"Some parents make their kids feel so awful about themselves they get eating disorders."
"Mothers on extreme diets push their kids into eating disorders."
"The parents of eating disorder patients suck."

It's the cause/effect connection between eating disorders - a mental illness - and parenting that is out of bounds. If you get rid of the "so" "because" "contribute to" "influence" language you can pretty much say anything you want about how rotten some parents are and how dysfunctional some are. I'm the first to admit that I'm not a perfect parent and that in the course of dealing with parents of eating disorder patients I've seen some of the most disheartening and cruel parenting imaginable.

I've mostly seen some of the most heroic and breathtaking parenting, too, and more so as it is often in the face of a society and clinical environment that is still stuck on parent pathology as a significant factor in causing eating disorders. Not fair, not true, not helpful.

Go ahead and bash some parents. I'll join you. But if you use the cause effect language we're not going to get along. Go ask the parents of kids with autism and schizophrenia if you need to ask why.

May 20, 2012

bgp time

Showtime!

"not considered visitors"

Charlotte has published a remarkable document at her blog that will get people thinking, talking, and I suspect: angry.

Some will be angry that she question it. Others that these policies exist.

No one who runs or has had a loved one in an eating disorder hospital or residential setting will be surprised at the carrot and stick behavioral policies, the limited visiting hours, the emphasis on patient "compliance," or the lack of distinction of policies and information between children and adults.

This is normal for ED hospital units and residential treatment. It's shocking, and I think it should be, for families new to the world of billable hours, behavioral treatment, the worship of target weights, and the endless cycle of inpatient-release-relapse-inpatient that our US "system" creates and thrives within.

I know why this stuff started, and I know the insurance issues that perpetuate it, and I know the clinicians are usually just doing their jobs in a system they did not design nor can they change. What I don't know is why more people aren't standing up and questioning the way we do business (and it is: big business). The fact is, more programs are moving away from these approaches and are moving to a whole-family, full-time, long-term approach that goes from hospital bed to home and all the way to remission. Why aren't more?

Perhaps the best way to point out the problems here is to compare it to something. Like oncology. Would we hospitalize patients and limit them from seeing their parents OR THEIR KIDS to 1.25 hours a day? Would we have them in group therapy all day? Expect them to learn enough about their mental illness to be able to go home after a few weeks and use that information on their own? Would we regard their ability to function as willful and withhold basic rights like bathing and family contact?

http://www.stjude.org/SJFile/bo2954_web.pdf
Would we treat children without their parents?

I think we need to start questioning whether these programs work. Not whether they put on weight temporarily - they do - but whether they improve outcome. Believe it or not, that's actually not known and some research indicates otherwise. It's certainly the most expensive way to treat patients, especially as they are expected to repeat it. We need to start asking whether hospitalization and residential care that is not followed by coordinated step-down care is like giving the first dose of an antibiotic without giving the rest. We need to start asking whether treatment that does not include the family full-time from the beginning is actually just the old parentectomy in a new form that has lasting effects on the entire family including siblings.

I'm struck by the tone of this hospital information packet for parents facing pediatric cancer. Note the lack of tiptoeing around the seriousness. Note the respect for the intelligence of the parents. There is no shying away from the distress that treatment will cause but also no pity. There's a fearlessness here, and a resolve for courage and action. I want that for families facing eating disorders.

May 16, 2012

Research Study for Moms of Anorexic Boys


Posted by request:
Are you the Mother of a Son who has received inpatient treatment for Anorexia Nervosa?   
If so, please consider participating in this important study, which seeks to explore and document the psychological and social caregiving experiences of these mothers.  
To date, there have not been any published research studies that have focused exclusively on parents of sons with anorexia.  Parents of a child with a chronic illness, and in particular eating disorders, have reported that mental health and medical treatment professionals often neglect their needs.  This study aims to shed light on what, if any, specific needs parents of sons with anorexia may have.  The ultimate goal is for treatment professionals to be able to better support parent caregivers, so that both parents and health professionals may better support and treat a sick child.   
  • Participation involves a 60-90 minute telephone interview with the primary researcher, a doctoral candidate in psychology. 
  • Participation is entirely confidential!
 
This study is being conducted by Jessica L. Whitney, M.Ed., M.A., a doctoral candidate in Counseling Psychology at Fordham University, under the supervision of Merle A. Keitel, Ph.D., Professor of Counseling Psychology at Fordham University.  Approval for this study has been obtained from the Fordham University Institutional Review Board.

May 15, 2012

"She’s just not thin"

There are so many quotable lines in the blog post, "Fantasy of Being Thin" that I have given up trying. You just have to read it. Suffice it to say that ALMOST EVERY WOMAN I KNOW needs to read this Shapely Prose post.

If you're struggling with your weight, if you're pissed off that I keep telling you to stop struggling with your weight, if you are delaying or avoiding ANYTHING "until I lose weight," read this to understand that accepting the body you have isn't enough, it is accepting the loss of the fantasy of who you'd be and what you'd do "once I lose the weight."

"She’s just not thin."

**Irishup, I could kiss you, again, for the link wisdom.

May 14, 2012

more than just eating disorders

Charlotte really sums it up here. 

I sometimes do feel a bit funny that so much of my life is spent "with" people who don't live anywhere near me and yet they are very real and the relationship is far more than just about eating disorders.

My family teases me, and my friends on the ground find it a bit funny, too - but with friends like Charlotte who needs.... to clean the house for visitors! (Actually, Charlotte knows just where I keep the unmatched socks, has gotten me through a crying jag or three, and served as shoe consultant - and has no illusions about the dust levels, either!)

May 13, 2012

what if you did it now with the body you have now

I met danceswithfat! It was at the last night party at ICED in Austin and I was introduced to the uber-cool blogger, danceswithfat, whose dance moves I admire as much as her blogitude.

Wish I'd known she was there earlier, we could have talked longer - or busted a move!

Here's why I love her:

"what if you did it now with the body you have now?"


I know too many people who are waiting to enjoy their lives, to LIVE their lives, "until I lose that 10 pounds." They may even avoid the very things that make them feel better - like dancing - because they somehow don't deserve them at their weight or that their appearance is more important than being active and alive.


Sitting around marinating in your dissatisfaction with your appearance is a bore!

May 12, 2012

recovered from a mental health issue and over 18? researcher seeks your help!

Posted by request:

"‘Successful Recovery’:
Characterising and evaluating the role of life events in maintained recovery from mental health issues.
Dear Participant,
I would like to invite you to take part in a research study. Your decision to take part in this study is voluntary and you are under no obligation to do so. Before you decide whether or not you would like to take part in this research study it is important for you to understand why the research is being done and what it will involve. Below is some information about the study, what it entails and requires from you. Please take the time to read the information and discuss it with others, if you wish, before you make your decision to participate.
What is the purpose of the research study?
The study aims to gain knowledge into the nature of life events that initiate/trigger recovery from a range of mental-health issues. The study also aims to gain an insight into the differences between life events that did not result in maintained recovery and life events that did result in maintained recovery.
Who can take part in this study?
This study requires participants who are over 18 years old and who define themselves as ‘recovered’, ‘in recovery’ or ‘always recovering’ from any mental-health issue.

May 11, 2012

no comment? yeah, right!

The ability to publish anything we want is new, but we've adapted to it quickly. Talking back to anything published is newer, but we're just adjusting, painfully, now.
"Lately, there’s been a new focus on commenting culture, with significant players in the industry starting to think and talk about the monster we’ve created and how we might course-correct after all this time."
For many years I had a regular column published on the second page of our regional newspaper. It was a thrill to see it on the newsstand and peel back to A2 and see my little photo and my clever headline. But the essay had to be accepted, I sometimes had to do a re-write, and it was seen by one editor and one copyeditor at a minimum before it was printed. Every once in a while, someone would recognize me in town and mention something I wrote. Once in a great while there'd be a letter, sent by US Mail, pointing out an error or with a compliment. My editor might or might not pass it on.

Now, as an author and blogger, and someone who comments on other blogs and articles, the responses are fast and often furious. I don't think savage is too strong a word. The world of online commenting allows all the naked, undigested, indigestible thought flotsam to surface - in real time.

I don't want to go back to the sterility of one-way publishing. Not only was less satisfying it was a dead end. An idea was sent out, maybe echoed a bit, and generally died. Even if it got scrapbooked or put on a fridge the writer rarely knew how it landed except by having the editor willing to publish you again. Now writers, and everyone with a screen, gets to hear the response: there's no distance. This feedback makes its way into what we write, and what we do.

I don't like reading the horrid and ignorant thoughts in the comments of many newspapers and blogs - especially on topics that matter to me. But they are real, and they do reflect reality. It isn't about civility as much as it is truth. There's a lot of ignorance and thoughtless cruelty in the hearts of man. There is also wisdom and beauty that may not come out without the safety of a bland username and anonymous email. There are bullies, but there are also allies.

Writers have to develop thicker skins, and perspective. Readers have to stop believing that comments have to be right or kind. Get your word in, show who YOU are, and let people live with their own conscience at night. These days, we all get the last word.

May 9, 2012

iaedp calls for proposals for next meeting - deadline June



iaedp Symposium 2013
What's New Under the Sun?
Innovative Approaches to Treatment

March 21-24, 2013
The Westin Lake Las Vegas Resort and Spa
Henderson, Nevada
Call for Proposals
We are seeking abstracts on inventive treatment modalities for the numerous phases of the eating disordered client's journey-- from denial and resistance to treatment and, ultimately, recovery. The spectrum ranging from disordered eating to life threatening medical complications requires skill and creativity. Treatment providers from all disciplines are challenged to creatively convert ongoing research, brain imaging, and treatment updates into meaningful ED treatment protocols. We are seeking submittals on individual, group, and family work which help clinicians in all treatment settings. Please include an experiential or interactive component in your presentation. Preference will be given to unique presentations offered for the first time.

All abstracts must be submitted online. The call will close at midnight on June 30, 2012.  Please read the full call, details on submissions, and submit your abstract online here.  If you wish to bookmark the abstract site, it is http://iaedp.confex.com/iaedp/2013/cfp.cgi

ICED 2012: Inefficient impressions and the power of "duh!"

So, my friends have been demanding that I get going on my conference report. I'm going to do this very impressionistically and without any sort of efficiency. If you have specific questions, ask 'em. Also, there's a lively group of others busy tweeting and blogging and Facebooking bits along the way as well!

So, the conference was the annual International Conference on Eating Disorders put on by the Academy for Eating Disorders. AED is, despite the name, not "for" eating disorders and does a bang up job of putting on these events. I have served on the program committee in the past and am now on the committee for ICED 2013 in Montreal and believe me when I say the amount of both volunteer and staff work to pull these off is staggering. The fact that it is done with a high level of both humor and community spirit is evident as well. This year even the dry bits, like award ceremonies and "shut down your cell ringers" were done with warmth and personality. Glenn Waller and Carolyn Becker deserve the Oscar of organizing and presenting.

I arrived in Austin on Wednesday and immediately began running into folks. After all these years of attending ED events around the world I find that even with 900 participants the hotel lobby becomes a small town. There are those you know by sight for a wave across the lobby and those you rush to for double kisses and then of course those you whisper with scandalized or awestruck tones to your friends and say "There's..." The AED conference differs from other ED events I've attended - more than I can count - in that there are far more researchers than usual. Of the clinicians, far more are medical directors and clinic heads. This means the ratio of men is higher, visibly. This is a somewhat touchy topic in the field, but bears discussing. A big theme of this event was the Research-Clinical gap -- the uneasy relationship, and lack of relationship, between those treating patients and those gathering data about the illness and about treatment efficacy. To speak plainly, there is a sense in the treatment world that not only are they being "told what to do" by out of touch academics but the female dominated clinical world chafes at  what really is a more male-dominated domain of research. The gap, and distrust, goes both ways, naturally. The Old Boy network is changing, but if the grumbling is any indication, still exists.

I find many of the people who attend AED every year rather out of touch with what goes on in the advocacy world, not to mention the media, and remarkably unaware of what goes on clinically outside their practice. So, while I spend my year hearing from families and clinicians about the real world, talking to and responding to the media about eating disorders, and reading research I find that those who are creating the research kind of blink like they're coming out of a dark room into the sunlight. They're shocked by the emotions and can be dismissive of the problems. The attitude I hear most often is "Well, I'm sure that is the exception" to practices that are, dear readers, the norm. "Well, parents should seek out better providers" would be great if a family had some way to know the difference. "No one I know does that" is more a reflection of one's circle than it is reflective of the field.

So, surrounded by lovely, dedicated, well-educated folks my passions can come off as shrill - especially when the listener is living in a world where they assume others think and practice as they do or "should." Since I am also privy to the critique of many providers of other providers - something they don't necessarily share within the field for fear of reprisal - I also know that some of those in the Ivory Tower and some of the leading clinic staff are not as well-thought of as they think and often practice in not only different but mutually exclusive ways.

I bring this all up to say that while research-clinical gap was a big meme of ICED 2012 for me the important gap was the research/clinical-public gap. I'm pleased to see far more chatter and understanding between researchers and clinicians but I fear their internal squabbling is less dangerous than the gap between ALL of them and the reality for families: legislative, media, public health, public perception, systemic.

I won't list all the interesting people I spent time with, but will say that the ability to know people by sight and work is something that can only happen over years of 'showing up.' Name tags are great, as are introductions, but having a depth of experience with and institutional knowledge of people at these events is invaluable. It does lead to cliqueyness, though. As glad as I was to be waylaid for conversations crossing a room I passed many people who would have been good to know as well. Being friendly with people and having a dinner mob every night is very pleasant but I'm also aware of the person like me in 2004 who doesn't know anyone or what anyone does. It is good to be known and to develop relationships but I try hard to make sure I have interstitial time to just walk up to people I don't know, but that is also hard. Ten years ago I was terrified of walking up to strangers and devastated by any botched encounters. I'm older now, and far more confident, but I can't deny that SOME of my courage also comes of knowing that I do have friends and I do have meetings  set up, and that most of my conversations can START on a deeper level and not on the conference speed dating level of "Hi, and where are you from?"

I wonder how we can do a better job of recognizing and drawing in those with new, challenging, even obnoxious new ideas who have for the first time scraped together the money (not inconsiderable) to show up blind and trembling as I once did.

Great news: F.E.A.S.T. / AED / MEDA volunteer, Mary Beth Krohel, received an Advocacy award on Saturday. Well-deserved and beautifully accepted. Introduced with great charm and admiration by Ovidio Bermudez, M.B. gave a wise acceptance speech accompanied by a spectacular PowerPoint. So proud to know M.B. and to have her as a partner in advocacy. She embodies collaboration and, as she puts it, being "Switzerland" in terms of getting along with everyone. I would add that she's also as efficient as a Swiss watch!

The twitter aspect of the conference was amusing. Only 6-7 of us were regularly doing so, excluding the ones just marketing their own events. (OK, maybe I should have done that, too) Often, we tweeters were sitting together pointing and smiling at one another's screens, which is silly. It was VERY funny to see the response to the tweets - or lack of them - by friends back home insisting on more. Most people I talked to at the conference didn't understand twitter and were a bit blinky about whether they were missing anything. The last session, the Think Tank, featured a Twitterfall display at the front of the room so all could see the tweets in real time. One of the first said with delight "Wow, tweets on screen works!" which caused everyone to, truly, twitter with muffled laughter. Another good tweet asked if microphones were obsolete. Followed by one suggesting a 140 character limit on microphone comments! I believe we were seeing the beginning of a new era in audience participation - and suspect that next year many who were there will be up to speed and game. My faves of 2012:         

So, the science. I know that's what my friends want to hear about, you geeks! Well, I'm sorry to say that I missed most of it. Except for the Keynote and Plenaries I was in meetings or otherwise off somewhere. I try to purchase as much of the session tapes as I can afford for my later edification. For those of you who do want to get the nitty gritty I suggest COMING to ICED, or buying those tapes. There's no substitute for long-form presentations and actually speaking to the presenters. Show up, people!

Susan Ringwood, the head of Beat, and I held a workshop on Empowering Parents through Advocacy on Friday. It was lightly attended, and Susan wisely noted that while those of us doing advocacy and activism need the clinicians and researchers there is not a great deal of understanding of that by the professionals. For the reasons I cited above, this gap hurts all of us. We did have a really high-quality group, very keen, and representing 5 countries. The latter is an interesting issue both culturally and logistically. Advocacy in the UK is quite different than in the US - as our health systems guide much of what we can do as families. In the UK families don't have the same need to search, pay for, or make choices about treatment - and in the US that is MOST of what parents need to address. Same illness, very different issues. One topic that came up was the worldwide effort many made to support the petition against Jenny Craig's CEO presenting at a girls' school conference. To my surprise, one of the Australians there thought the whole thing wrong-headed, to which I replied that we international advocates should share these concerns in real time so we can coordinate. We also had a colleague there from Israel fresh off the news of a ban on undersize models - a topic that many ED advocates are cheering but leaves me cold. But still, my question is "what can we do to help you as advocates in your country spread the word so others who care about that issue can help?" One point of common ground: The World Wide Charter.

How is it that I didn't know that Austin is a combination of New Orleans and Nashville? Good food and music were everywhere. Luckily, I had early morning commitments all week and unable to reprise my debauchery of New Orleans! Still, fun to hang out with foodies at a foodie place - and to negotiate a tapas restaurant with a group of people sensitive to food choice issues! More mysterious... a Starbucks with no lines and almost instant beverages right in the lobby.

Kudos to the ICED planners for insisting on a real(er) breakfast offering. As many know, my pet peeve of ED events is the lack of food and the affinity for meals taken standing up on small plates filled from hors-doevres displays but copious alcohol. And water. Always water. (but Stephanie gave a thumbs down for the water!)

The keynote, Scott Lilienfeld, was a witty and wise and provocative speaker (see Carrie's post for best explanation). Better still, most speakers for the rest of the conference - including me - referred to aspects of his talk which is the true sign of a well-planned and executed Keynote.

Which brings me to my presentation. First, you should know that I've SUFFERED over that thing for months now. I've dragged friends in and out of the field through my script and wailed and whined. I literally had sleep problems over it and that is very unlike me. I've given speeches, even a short ICED plenary bit years ago, but this felt different. One, it was a topic of great controversy in the field and followed years of squabbling and misunderstandings - for me and for many others. Two, I'm very aware of the boundaries that I try to keep in this field: as an outsider, as a parent, as a non-clinician. But also my value: as a longtime observer, as a representative of many, as a thinker, and as a mother whose family was deeply affected by the attitudes and issues therein.

What I was asked to do was to offer my thoughts on how the term "brain disorder" was used and valued from the parent/carer perspective. I was followed on the panel by someone from outside the field who isn't warm about the use of this term or other biological language around EDs or any mental illness. Then came a noted anthropologist about the use and misuse and interpretation of language. At the end, a "discussant" made observations about all of our presentations and some conclusions.

I was terrified. Part of that is normal stage fright: 900 people can do that to ya. I was also affected by the visceral emotions of being under attack: I knew well that many in the audience believe that I personally and the ideas I hold dear are wrong and dangerous. I also felt keenly the sense that I was a lightweight - er - easily dismissed on a topic that I felt I really had something of value to share. Also, what I was going to say was not based on data or empirical observation - it was the culmination of a decade of thought - my thought - and really, why should that matter?

I'm told that I didn't appear nervous. I do remember feeling very focussed and then unutterably relieved. I'm told that "any lingering ideas that you are a zealot" were dismissed. Now, I know that my friends are obligated to say nice things, and once done that's all anyone CAN do, but the best responses - the ones I cherish most - were these.

Everyone who came to the microphone during the Q & A believed the Plenary panel had done the right thing and a good job to bring these issues to the open air, and that it was time to move forward. And that list included some of the most vociferous voices on the topic.

The best, though? The lady at the sink next to me in the powder room who summed up my opus with this: "Duh!" as in, "Why is this controversial?' To take something so incendiary and let reasonable people get things back to reasonable discussion is the first step to "duh!" so we can get on to the next questions.

The last event of the conference is always a dance party at the hotel. There's real food, a cash bar, and - who knew? - happy giddy dancing by people who one is most used to seeing much more buttoned up. In former years I would watch. This year, I danced. Others got blisters.

The last night of ICED I did something I should have done years ago. I walked up to a well-known person in the ED world and thanked her for her work. This is notable not only because I've met her countless times over the years, and not just because we've clashed over time. What chagrins me is that I genuinely DO admire her work on a particular thing she's interested in. But I've been both scared of her and defensive because part of her work is very much against mine. But it has taken a decade for us to have enough of a safety zone for me to say that. I'm embarrassed. What if I'd started out that way? I might have been rejected, but I would have done the right thing and perhaps softened some of the ugliness that followed. I have found, without exception, that the very people I disagree with most are the ones I learn most from. Not that we agree - we do not - but we are talking which is the necessary step in between.

Greatest take-home lesson? That most people are as annoyed at the extremes of their own opinion as I am. Those on the prevention bandwagon, for example, do include people who think that eating disorders are just a product of environment and that we can only prevent EDs by changing the pressure to be thin. But the prevention people who are really deep thinkers and leaders do not hold that extreme view. Same for those who believe parents have an influence on eating disorders - there are those who place all their belief there but I can't find any of those people in the leadership or serious research or clinicians in the field - those people are outliers who tend to embarass their colleagues...

This is familiar to me because I have the same problem. I have allies who I think are narrow to the point of visionless, married to single issues to the exclusion of reasonableness, and unable to distinguish single ideas from the more complex people who hold them. I often find myself defending ideas but being shot down on the basis of there being extreme people who also hold them. Well, I have to guard against doing that to others. I have to stop the "don't say that thing because it leads to that awful other thing." I've got to allow for people not being as extreme as they seem just as I ask it for myself.
M.B. had these made and we were giving them out like candy!

My goal for this conference was to disappoint those who enjoy seeing me, and others of similar thinking, as foolish zealots. I think, I hope, that my presentation helped. I believe showing up helps, and I do that with the material and emotional support of many friends, allies, and my dear family.

Thank you for this opportunity, and sorry for the rambling nature of this report!

May 8, 2012

Free treatment for bulimia in New York State

Posted by request:

I am conducting an NIMH-funded study of adolescents with BN that is aimed at understanding neural factors that might contribute to illness persistence. We are looking for girls, ages 12-18 who have problems with binge eating and purging. 
Girls who are eligible to participate in the study can receive free treatment for BN, either inpatient or outpatient, here at the Columbia Center for Eating Disorders in exchange for participating in our study. Other girls who are in treatment else where or who are not interested in treatment here at Columbia could earn up to $900.  
Please direct people to call 212-543-5739 or visit our study website  http://www.teenbulimiastudy.org/ for more information.  They can also find us on Facebook: http://www.facebook.com/teenbulimiastudy
 Thank you in advance for your assistance. All the best,
Rachel Marsh, Ph.D.
Assistant Professor of Clinical Psychology (in Psychiatry)
Columbia University Medical Center
The New York State Psychiatric Institute

May 7, 2012

Speeches 101

How to deliver the scariest speech of your life to 900 people

10.     A little controversy
and this is only one of them!
9.       One good idea
8.       A little bit of anger
7.       Edit out the anger, leaving the substance
6.       Stellar shoes
5.       Clever friends to tear down and help re-stitch speech
4.       Project "from the bosom" (thank you Susan)
3.       Start very low (thank you, Kate) to avoid frightened squeaking
2.       Friends who know you're terrified so they text, tweet, email, and FB bolstering cheers
1.       Superior undergarments

**1.2 believe your friends when they say it went well, like they have a choice!

This is ground control to Major Gaffe

Picture this: landed last night at home airport feeling like the picture of good business traveller. Packed well, lost nothing along the way, conference a satisfying delight, all my chargers and a suite of efficient electronics in a well-designed traveling bag. Charming early morning banter with taxi driver, generous tip, unflustered at security, easy off shoes, layered travel wardrobe. Even used mileage to upgrade to the nicer rows. Watched a pleasant movie, ate the free eats.

Plane glides to earth and as we roll toward the gate the pilot gives us leave to turn on our electronics and I happily turn on my shiny new iPhone to check my notes on where I left my car, put my earbuds in and queue up Aretha Franklin and sit back patiently for them to open the door.

Strange... the volume is very low so I crank the volume to 10 and push the earbuds in more firmly. Ahh.

It was probably three minutes in before I realize, at the crescendo of a thrilling high note, that my earphone jack is not completely inserted into the phone. The whole cabin has been enjoying - or not - my musical selection.

I've been laughing, and blushing, ever since. My apologies, and you're welcome!

I may stay home a while.