October 29, 2010

How many international inpatient and residential ED treatment centers?

A time-sensitive query from a friend:

"Does anyone know the best way to identify the number of residential/inpatient treatment programs outside the USA? Any advice you can give me in how to obtain this info would be so helpful. Also, if you could quickly list the inpatient/residential programs you know of in your own country that would be a huge help"

Please leave ideas/comments/local centers in the comments, asap!!

Laura

Gah! But, but, but.....

Having trouble letting this go on the drugs vs. food issue.


It's the anosognosia thing. Also: because I didn't state the question clearly enough.

Forget the study in question for a moment?  Here's the choice:

You have an eating disorder patient who isn't weight normalized and there is no plan to do so. The patient comes to a doctor but says I won't eat enough, but I want help. Does the doctor prescribe a drug that will help soften the effects of one medical problem - a critical one - knowing the patient will not be getting renourished at the same time?

I think a lot of people are responding to this as a question of lesser harm. I'm looking at it as the illness holding the doctor hostage: give me one form of poison or I'll take the other.If the doctor has a patient in care I think the doctor should be focusing on getting them the treatment they need and not being a tool of ED.

To argue that the patient "isn't ready" or "refuses" or "is still in pre-contemplation" is to misunderstand the illness. It is US who are "not ready" to deal with the messy and harrowing business of seeing the person in front of us as unABLE and not unWILLING to gain weight. The anosognosia of the illness changes the issue: the patient is unable, due to the effects of the "drug" of malnourishment, to see the situation clearly. The "drug" of real nourishment is the best known one for treating anosognosia - a far more dangerous side-effect than bone loss.

October 27, 2010

drug therapy for bone loss in anorexia: giving in or giving hope?

A friend sent me this article about a new drug approach for restoring bone in anorexia for patients who are not able to gain weight: www.medscape.com/viewarticle/731094

My response was: "I prefer food."

His thought: "I certainly share your gut reaction, but at the same time it opens an interesting ethical discussion: Would it be wrong to turn to drugs that promised to alleviate some of the damage caused by EDs while not treating the ED itself? Where does treatment for one condition become complicity for another? And even with the best of evidence-based efforts and intentions, there is still a big percentage of ED treatment failures; is it worthwhile to have other bullets in the gun in case weight restoration efforts fail? I think most parents would vote yes."

Parents? What do you think?

October 26, 2010

Wedded to that belief

A young cousin, by marriage, recently and unexpectedly died.

An anecdote. Burning Dan recently tried to teach my mother some juggling technique. Being highly competent in many things but not this, she kept saying "I can't." After a while Dan gently asked her "How wedded are you to that belief?"

Everyone I tell this story to has the same response: "bam." Won't say, or hear, "I can't" the same way, and you know you are going to question it: "What can't I do? "How wedded am I to that belief?"

Thank you, Burning Dan.

October 25, 2010

Eating Disorders and Anxiety

One measure of how the growing body of good, useful information about eating disorders is getting out into the world is that it is increasingly available OUTSIDE the eating disorder world, like this: Eating Disorders and Anxiety, an interview with Cynthia Bulik.

Well worth listening to!

October 24, 2010

Why I haven't written about NEDA conference

So, it's been a couple of weeks and I haven't written my usual long personal conference report. I have reasons, if not excuses.
  • There's a lot that I am worried about saying. Some upsetting things happened and I'm reluctant to air them publicly but since I'm by nature a pretty what-you-see-is-what-you-get person I'm not good at half the story and so my voice is gummed up. This is probably a relief to some people, but come to think of it those people have probably never read my blog.
  • For all the controversial stuff, the weekend was such a lot of roaring fun, too, that I just go on goofy grinning reveries and keep looking at the pictures and wasting time.
  • I haven't caught up on anything yet, including completely unpacking.
  • I usually write a long, newsy, full of names report but this time I honestly met so many people that I couldn't possibly do it without missing any and can't possibly give some people their due and don't want to slight anyone. It was a weekend of "I'm Someone-You've-Wanted-To-Meet-For-A-Long-Time, Hi!" and my emotions and memory were whipped to a froth. I mean, I wonder if anyone can imagine what it is like to have all these relationships with people online - and only get to see once a year at the conference - who took the time to come to NEDA and threw themselves into the crowd and be so wonderful. It was like having a book come alive at you a la "NeverEnding Story" and constantly blinking to see if it was still real. I am blown away by the reality of this amazing community of people - and as fast as I'm blinking, it still seems to be there! Don't disappear!
  • So many people are out there blogging** and Facebooking and chatting about the conference I no longer feel the same sort of need to make those who were not there feel included and involved.
  • This is the first time my husband was there as well and I probably processed more of it in person than I usually can. It was a blast having him there and I loved seeing people's reactions to "Samuel" aka "Cheforexic."
  • I know that those reports are more about my processing things than any information others yearn to read.
  • There's SO much to do. Be careful what you wish for: F.E.A.S.T. is a locomotive lately!
  • Finally: you know who you are. To the people who showed up, held me up, gave footrubs, gave rooms at your house, shared rooms, made that table a community, dried tears, brought your socks, MADE socks, quilted 100 gorgeous keyrings, did Stinkbug imitations, sent pictures to Mamame, brought me coffee, brought me a Breakfast With Some Protein, carried the pizza, scouted out a diner, brought me books, texted, used our room for storage, paid New York hotel rates, held down the forum, brought their spouses, sent donations, sent greetings, watched an empty video feed, clowned for the camera, mourned, hugged, debated, cared, and "cliqued" - you know who you are and I hope I showed you how much I appreciated it. If not, I want you to know, it was one of the finest weeks of my life and you were the reason. Thank you. Really.
** Must reads: Marcella, Carrie, Sarah

October 23, 2010

the way out is not necessarily the way in

"I was wondering, would you argue that eds are 100% genetic/biological?"

This is an excellent question.

I don't think anyone knows, really. I believe the mental illness we call "eating disorder" is largely mechanical, but that disordered eating can be influenced by a lot of things. I think a lot of people do disordered eating without having the mental illness and that people can have the mental illness without currently engaging in disordered eating, if that makes sense. We must stop confusing "Eating Disorder" with "disordered eating."

Disordered eating patterns seem to trigger the mental illness for some people - those with a predisposition. Some people need a LOT of disordered eating/stressors to get tipped over, some are like the fairy tale where the princess is fated or driven to find the spindle no matter what her parents do to prevent it. Once over into the mental illness I think the process is largely biological and neither reachable nor usefully explained by logical or psychological means.

That's why I don't think the psychological arguments have much relevance. If you can become deathly ill from an eating disorder from a single incident or a lifetime of pain then the way out probably isn't the way you got in.

I think it is insulting to those trying to recover from an eating disorder to mistake their anguish and bravery with the garden variety body distress that we (cruelly and wrongly) experience in most of society. It's qualitatively and quantitatively not even comparable, in my opinion. That is why all this discussion of "loving your body" and "size zero models' and "drive for thinness" misses the point. Once you are in, the door you need to use to get out isn't even near the one you stumbled in through.

The REST of us need those messages, surely, but the patient really just needs US to get it and live it so when the patient's brain recovers they live in a world that doesn't make bulimia and anorexia seem normal.

Your views on how to improve doctor-patient relations Survey

With thanks to F.E.A.S.T. Advisor, Susan Ringwood of b-eat, I encourage families to submit their feedback on a worldwide survey:

Your views on how to improve doctor-patient relations

October 22, 2010

A monkey could serve a bowl of Weetabix

Various things have been making me a bit sour lately but all it takes to re-orient me is something like this description by a dad of starting to get his kid back, with food and support and safety. This is the kind of clinical support and parenting that is the whole point.

When people are fighting over evidence and modalities and Bruch, the point is this: getting patients well again.

Turning point

October 21, 2010

Give Food A Chance

I just realized that I haven't mentioned Dr. Julie O'Toole's new book, Give Food A Chance!

Here I am commenting on other reviews of the book and haven't done my own.

Buy this book! Read this book. If you are a parent dealing with the illness in a loved one, a family friend looking to understand, or a professional seeking to improve your practice: Dr. O'Toole's voice is as honest, clear, and as passionate as she is (we've met). Her depth of experience with helping families through this diagnosis and treatment is unique: her busy clinic is entirely dedicated to eating disorders and their family-inclusive model pre-dates Family-Based Maudsley therapy in this country. She has devoted her career not only to treating but to understanding the illness, and it shows. She brings in history, literature, and a wide range of medical knowledge. She uses analogies and real stories to animate her explanations. I really can't think of a better exploration - not just instructions - on the topic of eating, metabolism, and behaviors around eating. This is also a history of eating disorder treatment and a critique of current practice.

By writing this book for parents, O'Toole is also saying something about what she wants for and expects from parents. This is a book that both demands and offers respect - for the shared responsibility clinicians have with the parents of their patients. It is bracing and refreshing to be offered tough answers, smart answers, and unsparing honesty about the job of being a parent and the things clinicians need to do their job as well.

This is a departure, for books written for parents: good science, a straightforward and literate style, and practical information for parents. I look forward to hearing from those who have read it already!

What do parents want?

I was saddened to hear at the NEDA conference that the dozens of F.E.A.S.T. parents who attended were considered a "clique" by some in the eating disorder leadership. It isn't nice, it isn't true, and it bodes ill for good relations between groups.

I encouraged F.E.A.S.T. members to come to the conference and many, many did - I actually lost count. They came to meet one another, to learn, to be part of the larger eating disorder community - these are things we at F.E.A.S.T. believe in. They shared rooms, they shared meals, they bought one another drinks. They came with open minds, big hearts, and great attitudes.

They also came with opinions, questions, and a common interest in F.E.A.S.T. I don't think that makes them a clique; I think that makes them valuable members of the eating disorder world. Those opinions are not always the same as the mainstream but they are important. The questions, well, they were good questions and deserved answers. The common interest in F.E.A.S.T. - the parent-oriented organization that brought them to NEDA and encouraged them to get involved - is also an asset. F.E.A.S.T. isn't competing with anyone - there's plenty of work to be done and many needs to be met.

I love the ideals of the nonprofit world: synergy rather than competition. Niches instead of markets. The best possible way for us to win our common goal is by listening - respectfully - to one another to find common ground and things to work together to achieve.

Seeing the damage

The wires are full of a study linking eye damage to anorexia and bulimia. I "see" this whole thing differently to many others, it seems.

Eating disorders don't harm the eye: failed treatment does. Failure to keep patients safe from their compulsive behaviors causes damage to all systems, visible and not, permanent and not, diagnosable or not. It is failed treatment to be undernourished or erratically nourished or not digesting one's food.

It is time to stop looking at the malnourishment of anorexia and bulimia as expected and acceptable. We need to see that as failed treatment. Once someone has been diagnosed with an eating disorder we have to stop letting the illness continue the malnourishment that drives it deeper.

The problem with these articles about the eye study is they continue to talk about eating disorders as something a person is 'doing to' him or herself. Talking about the damage these sufferers are 'risking' and thinking that telling people this will help them change. I don't think so.

The hell of having an eating disorder isn't a matter of "oh, wow, I didn't know it could hurt me." We're talking about people who are already hurting. If risks of medical harm were a way to get people to stop behaving in these ways, well, the evidence was already clear.

Those studies are measuring OUR failure to treat, to protect, to understand. At least that's how I see it.

October 20, 2010

Pen pals

Remember a few weeks ago when I wrote a post, Honored, about a wonderful lady pursuing recovery? Well, she was so touched by the lovely comments - and an offer of a real pen pal - that she went and got an email address!

She'd love to hear from you. Just email me for her address (I don't want to post it here and cause her to get lots of spam).

Bob Newhart gets it

I grew up watching Bob Newhart and he always reminds me of one of my dads. I can't tell you how much I laughed over this bit:

October 19, 2010

Stages

Timing matters. Most eating disorder treatment specialists see patients when they're already pretty ill: it takes a while to be referred to specialty care for all sorts of reasons.

But this fact causes a big bias problem that troubles me. I'm getting really tired of criticism of evidence-based care on the basis of clinicians who are used to so-called "chronic" patients. This is like objecting to early diagnosis and treatment of cancer based on the prognosis for tumors that have spread and caused secondary damage. The point is to prevent those more intractable cases.

If your expertise and experience are based on patients who have been under-treated, whose symptoms have ruined their relationships, who have marinated in the distorted thoughts caused by malnourishment then perhaps you mistake the secondary effects of an eating disorder for the illness itself. All this "doesn't work for everyone" and "don't exist in a vacuum" and "only for a small number of cases" is for me pretty well explained by the fact that we don't support families and primary care providers and front-line professionals with the tools for early detection and intervention.

We can't continue to treat eating disorders as defined by late, underpowered, and failed treatment. We need to define eating disorders as treatable illnesses and DO SO, and save the specialty of complex and intensive treatment for the soon-to-be rare cases that slip through the cracks.

There is a cohort of eating disorder patients that are ABOUT to fall ill. Let's catch them now and treat them properly and fully and keep safety nets in place from then on for them. Let's not let another generation of ED patients become the chronic patients of the future.

October 18, 2010

"Center Stage"

You know what? I think I may soon be able to retire and go back to my formerly scheduled life!

With Maudsley Method, Bringing In Family to Fight Anorexia

With articles like this, the life of families facing this illness just got a whole lot easier, the job of the family just got a lot clearer, and the credibility of families needing this kind of support just got a lot stronger.

Dr. Strober, we've discussed this. If parents were getting this kind of support from the beginning they wouldn't be in the drastic situation you describe. Hospitalization and inpatient don't solve the problem, anyway: the real work goes on at home. Parents need this kind of support early, middle, and long-term. Time to stop blaming and marginalizing. Time to put parents "center stage" to do the difficult but necessary work we need to do.

October 14, 2010

on Naomi Wolf

There is much to say and more to come on the NEDA conference, but I'm going to start with the Keynote address. The speaker was Naomi Wolf, author of "The Beauty Myth."

For those of us who believe the body image distress and body dysmorphia associated with eating disorders are symptoms of the brain disorder and not a dose response to environment, the choice of Naomi Wolf as star speaker for an eating disorder conference was disheartening. If you think that the obsessive thoughts and compulsive behaviors of eating disorders are closer to OCDs than to Oprah, this choice of speaker sets a tone several octaves away from your preferred range. As a feminist, it feels like splitting the baby to say anything negative about what I ardently desire: an end to sexist and misogynist thinking and marketing.

I actually considered not attending the speech, just to keep my blood pressure even and my mood from sourness so early in the events. But I went, and encouraged others to go, and I'm glad I did. It was not the talk I expected. It wove the usual themes - of the objectification of women's bodies and the economic drivers of these damaging social messages - but added a few unexpected strands: genetics, and a very well-put statement about the lack of food making you crazy rather than the other way around. The mixture didn't go well, however, as the logical loop was not achieved. It was muddled and I had the sense not completely thought through (she actually said, parenthetically, that she had learned some of what she was saying four days before the conference).

Picture this: whenever Wolf said something about it not being parents' fault, or about genetic vulnerability, or about dieting being the primary trigger, I clapped while much of the audience was still. Then the usual themes of 'mommy, you're doing this to your kids' and eating disorders being caused by society's pressures would shut my hands up while the majority of the audience clapped. It was a disorienting experience for everyone, I think. I wonder how many people were truly satisfied by it. I know that many I talked with were disappointed and some infuriated, and several of us wandered into the light saying "well, it could have been worse." Others were quite happy, but I sensed it was for particular themes rather than a complete message.

The mainstream eating disorder advocacy world has largely moved away from overt parent-blaming and is now pretty happy to acknowledge a biological element to eating disorder causation. But the train failed to stop there and has now steamed on to the media as Enemy Number One. We've been there before, people. Naomi Wolf is, as many said at the conference, an icon whose star is again rising in the ED world. Gloria Steinem, who will be speaking at the Renfrew Conference next month (as am I, as a small type contributor), is also being dusted off as a beacon in the fight against eating disorders after a period of neglect by the field. The question is whether this is a return of a pendulum or a move forward - or back.

It struck me that a lot of people in eating disorder advocacy really don't know that there is an incongruity here and they don't get why some of us are dismayed. I wish they'd ask.

Here is my challenge to the eating disorder world: slow down. Give this some thought. Do we need a bad guy? Do we need to have an external "reason" for eating disorders that explains their virulence? Why can't eating disorders be serious and deadly and urgent because they are, not because of external events? Does depression require a reason to be real? Anxiety? Do we treat depression by getting rid of sad events, or anxiety by ridding the world of spiders and high places?

I'm for everything that Naomi Wolf stands for, except that external influences explain eating disorders. I refuse to reject feminism, but I also refuse to use feminism as an arguing point of why we need to treat eating disorders seriously. Too easy, too smugly satisfying, and as far as I can see without scientific merit.

I talked with Wolf afterward, as I know at least one other F.E.A.S.T. parent did. I implored her to familiarize herself with the science and make her message about it coherent and internally consistent. She said "I'm not a doctor." I said if you talk about eating disorders to the public you need to understand the science, too. I asked her to consider that her message did to the male patients and their families in that audience what we reject doing to women: exclude and marginalize. She agreed to consider men more, and to read further in the biological issues. I hope she does.

I hope the eating disorder world can, too.

**be sure to check out Carrie Arnold's piece on Wolf, too.

Tripled.

There's a rather bruising debate going on at an eating disorder professional listserv right now about Family-Based Maudsley treatment and working with the parents of patients. I find it disheartening and sad when some clinicians resist learning newer ideas - just learning about them - and express defensiveness instead of curiosity.

But then there are moments in my day that remind me that we all have the same goal: better, faster, safer recoveries. I had one of those moments when I read one of the bios just added to the Treatment Directory on the new F.E.A.S.T. site:

"I have been in the field of EDs for 15 years. I was trained as a CBT therapist, but have expanded my treatment to include family based treatment. As a result of working with families, I have watched the recovery rates of my patients triple. Working with families is rewarding and extremely effective in treating these deadly illnesses and I am shocked at how few clinicians utilize families in their treatment. Families do make all the difference!"

It's not about making parents feel better. The point of working with parents is to help the patients recover.

October 13, 2010

When I grow up I want to be Lisa La Touche

My coping mechanisms for stress are: a full night's sleep, making to-do lists, refusing to answer the phone, putting a fresh coat of paint on things, and watching tap dancing videos.

I don't know why the stars aligned to put NEDA's conference, our website launch, the publishing of a major Family-Based Maudsley study, and a visit from an elderly aunt in the same week but.... let's just say that some tap dancing is being watched.

When I grow up, I want to be Lisa La Touche. I know Certain People think my tap dancing is a silly pursuit but I dare you to smirk or giggle over this amazing woman!

October 5, 2010

Don't be shocked: Family-Based Maudsley therapy data published

Long-awaited data on the Maudsley approach has just been published and the news wires are humming. From what I'm seeing, the coverage is pretty darned good. (The data is, too)

National Public Radio
Chicago Tribune
Bloomberg Business week
The Wall Street Journal
Science Codex
Los Angeles Times
US News and World Report

News stories about the Maudsley approach have always had a certain breathless "this is completely new and shocking" quality, then sink to obscurity and business as usual. Until recently this coverage hasn't translated to a real change in the availability and acceptance - or deep understanding - of the ideas. My hope for this wave of coverage - and it is HUGE this time - is that we will stop calling Family-Based therapy "controversial" and start calling it shocking and controversial that the availability of this approach, which you'll hear in the interviews "should be the first line of treatment," is still so thin on the ground.

What should be controversial is that children and adolescents with anorexia are still being treated first with approaches that are KNOWN to be less successful and their parents are never even told about the option.

October 4, 2010

"Very ingenious, as all Freudian arguments are"

I think the eating disorder world would so benefit from getting outside our box. We need to start looking at the thoughts and behaviors of eating disorders from a fresh perspective - and see the brain as a place that can be damaged and show symptoms with a logic of their own.

Of course, at the same time we'll need to stop using similar logic in our lives when we don't have an eating disorder... like that our weight is so darned important or that food is magic (the words antioxidant and organic, for example) or that avoiding food is a search for 'control.' Why is it possible to believe that you can have a phantom limb because of something in the brain but your conviction that you are too big when you're 89 pounds is clearly about size 0 models and a fear of growing up?

I can only imagine what Ramachandran could do with body dysmorphia and eating disorders.


October 3, 2010

Gooey prickles and prickly goo!

Timeless issues well-addressed:


A grateful shout out to Mary for turning me on to Scientific Mindfulness pointing me to Alan Watts via South Park!

October 2, 2010

You can get there from here

Fact: Not everyone lives next door to a world-class eating disorder treatment clinic like the University of Chicago.
Fact: You can still get care there:

Family Internet-based Early Bulimia Nervosa Study
The University of Chicago is conducting a research study designed to examine the efficacy of an Internet-based program for parents with adolescent children who show early signs of bulimia nervosa. We are seeking families who have an adolescent (ages 12-17) who engages in binge eating (large amounts of food in a short period of time) and/or compensatory purging (e.g., vomiting). Participating families will use an Internet-based program to address their adolescent’s eating disorder symptoms.

To be eligible:
* Families with an adolescent child (ages 12-17)
* Adolescent demonstrates eating disorder symptoms

For information call:
Colleen Stiles-Shields at 773-834-5677 and mention your interest in the Family Internet-based Early Bulimia Nervosa Study or e-mail Jocelyn Lebow: jlebow@yoda.bsd.uchicago.edu
or, to learn more, or to register online, visit: Welcome to the Frontpage

New F.E.A.S.T. website: It's not about appearances

Big day! Big day!

F.E.A.S.T. has big news: a new website with new features and new membership program. This new site means consolidating lots of functions we've been doing by hand, more opportunities for volunteers to get involved, and a much nicer-looking website. But, of course, looks don't mean anything, right?

Anyway, very tired and very grateful and very proud. Check it out:

F.E.A.S.T. Website

October 1, 2010

Honored

I just hung up the phone and I'm crying.

A woman called F.E.A.S.T. to get a copy of our Recipe Book, recommended by her therapist. She doesn't use the Internet, so we tried to work out the details on getting it to her. We got to talking.

I asked her if she had Help Your Teen Beat and Eating Disorder. She'd just ordered that.

I asked if she had good clinical support. She did.

I asked how old her daughter is. "It's me."

"You?"

"I've had anorexia since I was a child and it's got to go."

She's 60 years old.

And she's getting Family-Based Therapy. Modified, naturally. She's just been told for the first time - after many hospitalizations and decades of therapy - that her illness is not her fault. She asked me about the insula, and the genetic research. She wants more information and recipes and books. She's reading Life Without ED and calling her eating disorder "Ed." She's surrounding herself with people who have a newer view of the illness.

If you're not crying yet, get ready: she thanked me. Heck no, dear lady. Thank YOU. I am never going to forget you. And I know you don't use the Internet but I'm using it to let thousands of people share in your courage and pluck. You are my optimism beacon right now. To you, to your treatment team, to the scientists and researchers and clinicians who are creating a new world of treatment and optimism. THANK YOU.

UPDATE: After I published this post I heard from a wonderful friend who is well into recovery who offered to be a penpal to my phone friend. This was arranged, to mutual delight. I've also spoken again to our friend and she was so delighted to hear of all the positive messages that she got herself an email address and would like to hear from any and all of you with messages of support and information and community! Email me for her address!

Teleclasses for parents

The Internet changes many things in our lives but perhaps the thing I'm most impressed with day to day is how it means parents can reach out and get support no matter where they live. I see a great future for empowered and well-informed families!

Just an example: my friend, Becky Henry, is offering a six week interactive tele-class for parents and caregivers, from November 4-December 16.

Check it out:
Eating Disorders Tele-Classes