You're invited

to the next--and probably last one for a while--Maudsley Parents conference. This one is very exciting, because it's covering not just Family-Based Treatment but a broader spectrum of issues in child and adolescent eating disorders.

The one-day conference will bring together families, clinicians, and experts to talk about the current state of treatment in child and adolescent eating disorders and new directions for the future. It's being held in an absolutely gorgeous hotel, the Pearl River Hilton, in Pearl River, NY, about an hour outside of New York City.

Featured speakers include Debra Katzman, MD, on the current state of treatment for kids and teens with eating disorders; Rebecka Peebles, MD, on the medical side of treating kids and teens; Katharine Loeb, PhD, on the need for early intervention (and how best to achieve it); Evelyn Attia, MD, on the role of medication in treating eating disorders in kids and teens; and Daniel LeGrange, PhD, on working with families from both a therapist's and parent's point of view. Oh, and I'll be talking about the parents' perspective as well.

We've worked hard to keep the price reasonable, so families who are already financially stressed can attend. If you register before 12/31, the cost is $60; after 1/1 it's $75. We've reserved a block of rooms. For more information and to register, click here.

So please join us for what promises to be an educational and entertaining day! See you there.

Looking for . . .

Greetings everyone!

I'm working on a story for the New York Times, and am looking to interview any of the following:

--> eating disorders therapists or clinicians with a history of eating disorders themselves
--> eating disorders patients who have been treated by therapists, nutritionists, etc. who have had a history of ED themselves

I'm looking to explore the pros and cons, so any and all feedback is welcome.

Please email me at hnbrown at syr dot edu if you'd like to chat or email. And please pass along the word.

Thanks!

Just in case you were confused about the nature of eating disorders . . .

read this, which is circulating on Tumblr. My younger daughter sent it to me. Wise girl.

Family-based Online Bulimia Study

Hi y'all,

Please pass the word about the study below. I'm thinking it could be wonderful treatment for the right families. University of Chicago is at the forefront of research on ED treatment, and I trust their protocols completely.

************************************

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:

http://epathprogram.org

Distortions

When it comes to talking about eating disorders, there's no end to the distortions that often get trumpeted as "new." If you've had a loved one suffer with an eating disorder you know what I'm talking about. One of the things I teach my magazine journalism students is the fine art of taking a press release and turning it into a compelling and accurate piece of journalism. It's the toughest lesson we do all semester, which is no reflection on them. I think it's a challenging task to pull off, and very few news or public relations entities do it well.

To wit: This story from PR Newswire, whose headline trumpets "Mommy Not Always Dearest During Treatment for Eating Disorders." If you read only the headline and the first paragraph or two you'd come away with the idea that mothers were devastating, damaging, and destructive factors in their daughters' recovery from an eating disorder.

If you can force yourself past those first paragraphs, you'll be able to intuit a slightly more nuanced story. The family therapist quoted in the story, Catherine Weigel Foy, makes comments like "The mother-daughter relationship can be a complicated one." Um, yep. There's nothing particularly ground-breaking or earth-shattering in that statement. She goes on to say, "A mother's love begins before a child is born, and can create an unrealistic expectation that the connection between mothers and daughters will be as strong and free from limitations in adulthood as it was in early infancy."

I'll buy that, too, though perhaps I'm a bit more optimistic than Weigel Foy about the potential for good relationships between mothers and daughters.

Read down another paragraph or two and you find this:

Weigel Foy endorses an introspective look at this unique relationship and believes temporary distance from family members allows many adolescent and teenage girls to feel safe exploring the mother-daughter relationship in ways they haven't been able to during prior treatment for anorexia or bulimia. Weigel Foy and her colleagues at XX XX Residential Treatment Center work together to foster a nurturing environment that helps teen girls gain a realistic view of their relationship with their mothers. In turn, the girl and her mother are better equipped to support each other on their path to recovery.

Aha. Here, ladies and gentlemen, if we are attentive readers, the light bulb goes off. We understand that the piece we're reading isn't journalism at all but PR on behalf of XX XX Residential Treatment Center (I've deleted its name because I don't want to give it more publicity). Weigel Foy may be a good therapist or she may not; we really can't tell from this paraphrasing of her work in the service of publicity.

But certainly, the average reader will come away from the headline and opening paragraphs thinking, "Wow, this doctor thinks mothers are responsible for their daughters' eating disorder and/or get in the way during recovery."

Later in the piece, the writer concludes, "Through residential treatment and therapy this relationship can be explored and these young girls can come to better understand its affect on their diseases – and in turn help build a foundation for lifelong recovery." The mother-daughter relationship is being offered up as a reason to send your child to residential treatment.

Here I must point out that not only is there no evidence whatsoever that the mother-daughter relationship plays a causal or continuing role in eating disorders, but there is also no evidence whatsoever that exploring this relationship helps anyone get over an eating disorder. To the contrary: The most effective treatment for adolescent eating disorders is family-based treatment, which enlists the support of the family--mothers included--to help teens and young adults recover. And when I say "the most effective treatment," I am referring to real studies with real results, not one therapist's opinion (no matter how good she may be).

This kind of media deconstruction is important for everyone these days, as we're bombarded by information. But it seems to be especially imperative in the murky, vague, profit-seeking world of eating disorders treatment. Caveat emptor.

Independence Day

July 4th is a time to celebrate freedom: freedom from tyranny, from oppression, from authority. These are concepts we typically think of in the context of politics. I've been thinking about a different kind of freedom this year: freedom from eating disorders.

The analogy is apt, though most people don't know it. Having an eating disorder is like being a slave, subject to the whims and demands and impossible expectations of a taskmaster well-versed in the art of punishment. When you have an eating disorder, you do what it says, whether that's to refrain from eating even though you're starting, or to purge every calorie you do eat, or to stay awake when you're exhausted (because you don't deserve to sleep/eat/live). Having an eating disorder is the very opposite of freedom. You're not free to choose when it comes to some of the most fundamental elements of your life.

Anyone who's had an eating disorder can tell you that it's not a choice. You are not exercising free will every time you stick your finger down your throat, or push away a plate. You're in the grip of an irrational tyrant who has no regard for your feelings, your health, your sanity.

So this July 4th, I'm thinking about everyone who's ever struggled with an eating disorder, who's felt the iron grip of tyranny around her throat, stomach, mind, and who is struggling to become free. I want you to know that you can become free. There is hope. There is life outside of the crushing oppression of an eating disorder.

And here's to it, and to you.

Kudos to the eating disorders work group on DSM-V

for deciding not to make obesity a disease in the next edition of the Diagnostic and Statistical Manual of Mental Disorders.

This decision has significant ramifications for how docs treat and to some extent see obese patients. I'm a big proponent of changing the dialogue around obesity from a discussion of weight to a discussion of health. The two are not synonymous. I'm also hoping this will stop bariatric surgeons from marketing their surgeries as eating-disorder treatments, for instance.

The group also recommended changing criteria for anorexia and bulimia:
• Now patients must weight 85% of ideal body weight or less for a diagnosis of anorexia; in future, if the changes go through, the criterion will be "restriction of energy intake [leading to] markedly low weight." This rightly shifts the emphasis from the rigid weight characteristic to a pattern of eating and relationship with food. Now insurance companies will have a harder time cutting people off from treatment once they hit 86% of ideal body weight.
• Loss of menstrual period is no longer one of the criteria for anorexia. Some women never lose their period, no matter how thin they get; others keep menstruating even at very low weights.
• Bulimia will be diagnosable with purging episodes of once a week; right now, the criterion is two episodes a week.
• Binge eating is likely to become a diagnosable eating disorder.

At the Y

She was there again this morning, in the vigorous Zumba class I take most Sunday mornings. I love this class because it's fun--exercising to blaring Latin music, following an instructor who shows rather than teaches the moves. I also love it because there's such a wide variety of ages and body types represented, from the hunched-over 70-something woman to 10-year-olds with their mothers. The women in the class--and we are women, although men are welcome--range from thin to fat. Each of us moves to the best of her ability. There are good dancers and bad dancers in the class, and it's all OK.

There are plenty of thin women in the class, but the woman who turned up this morning--second time I've seen her in class--is far thinner than anyone else. Her close-fitting black leggings reveal the shape of her femurs where they meet her jutting hipbones. Her arms look like they might snap at any moment. Her face has a look I've come to recognize, a driven look that also conveys flatness, a certain kind of despair.

You can't tell whether someone has an eating disorder from looking. But I'd bet a year's salary that this woman has anorexia.

Last time she turned up in the class, I went out to the front desk afterward and asked if the Y had a policy about people with eating disorders or whose health was compromised in other ways taking vigorous exercise classes. Shockingly, they do not. I explained my concerns to the woman at the desk, saying I was afraid this ill woman might collapse in class. Or worse. I hoped I wouldn't see her again.

But there she was this morning. In a sweltering room, she wore leggings and a sweatshirt zipped to her chin. I watched her exercise in the mirror; she didn't know most of the steps, being new to the class, but she threw herself into the dancing with determined force. She was burning calories. I couldn't tell if she was having fun. Most women in the class smile through much of it, but this woman's expression never changed.

I'd thought at lot about her since the last time I saw her in class, and decided I would try to talk to her after class, befriend her, get to know her. Only this time, like last time, she ducked out of class before the end. I glimpsed her on one of the elliptical machines on my way out, and wondered how many hours a day she spents at the Y.

I was struck recently by a quote in this film, made by documentary filmmaker Hope Hall about her mother, who's struggled with anorexia and bulimia for many years. The film includes a voiceover phone call between Hope and her mother, where her mother says, "Through all my growing up, through all my marriage, I was always trying to measure up, trying to be somebody else. And all of a sudden, you said, 'I just love you. I don't need you to be well.'"

I think about the woman at the Y, and am torn by what I wish for her. I hope she people in her life who just love her. But I also wish that she, and everyone with an eating disorder, had people in their lives who could help them get well. Who could help them out of the private hell of anorexia and bulimia and into a life filled with something besides starving and binging and suffering.

I hope the woman does not come back to class, because, selfishly, I am uncomfortable seeing her there. In her gaunt face I see the face of my daughter, Kitty, at her sickest. I imagine Kitty at age 40, living this kind of hell, and I feel sick.

I wish I knew what I could do to help.

Is Your Child One of the 12 Percent?

One of the things you hear a lot these days--at least if you spend any time talking to doctors about eating disorders--is that they affect a relatively small number of kids. Prevalence rates for anorexia are usually quoted as .5 to 1 percent, and 3 to 6 percent for bulimia. (Binge eating disorder is a newer diagnosis; I've heard 3 percent for BED but don't know if it's accurate.) Which somehow makes them less worthy of attention, concern, and research money than, say, childhood obesity, which as we all know is public healthy enemy #1. (That's sarcasm, y'all.)

But a new study out of University of Texas at Austin shows that fully 12 percent of all adolescents experience some form of eating disorder. That's 12 out of 100. Which may not sound like much.

But consider that 1 out of 15,000 kids gets cancer of some kind, and think about the attention and research and money devoted to understanding and treating childhood cancers. Then think again about the number: 12 percent.

It sounds a lot bigger now.

One of the pervasive problems in treating eating disorders is a lack of effective treatments. We need more research, which needs we need more research dollars. One reason we don't get those dollars is that families are often reluctant to acknowledge that their child has an eating disorder because of the stigma associated with these illnesses.

Cancer used to carry a lot of stigma, too. As a culture we've mostly gotten over that. How about we start challenging the stereotypes around eating disorders? Parents could be amazing advocates, if only we were willing to stand up and say, "Yes, my child is one of the 12 percent--now what are we going to do about it?"

How about it?

See you in . . . October?

For those of you in the D.C. area, I hope you'll join me and some very special guests at a conference on eating disorders, hosted by Maudsley Parents. This half-day get-together features two of the leading researchers in the field of eating disorders, both of whom are accessible, compelling speakers. Daniel le Grange heads up the University of Chicago's Eating Disorders Program; Walter Kaye directs the University of CalIfornia-San Diego's program.

Dr. le Grange will discuss family-based treatment (the Maudsley approach) for both anorexia and bulimia. Dr. Kaye will give us insights into the neurobiology of eating disorders. And I'll share my family's story and offer parents specific strategies and tips for helping a child through an eating disorder.

You can find more information and sign up for the conference here. (If you sign up before September 14, the cost is only $25 per person.) I hope to see you there!

Eight-year-olds

This story in The Sun (admittedly not my typical reading) uses sensationalism and inflated language to hype a story that in itself is disturbing enough: The fact that in the U.K. in the last year, 44 girls ages eight and under were admitted to hospitals with anorexia or bulimia.

Think about that. Eight-year-olds have new front teeth. They might wear their hair in braids and play on a soccer (football to you across the pond) team. They're learning to spell and to multiply. They might have a best friend, someone they giggle with at lunch or on the schoolbus. They might have a favorite doll. They might love to scrapbook or draw.

Now think about a child that age in the hospital with anorexia or bulimia.

And now think about why a newspaper might report this story with this headline:

"Anorexia in girls aged 8 soars 25 per cent"

The second paragraph comments, "Shocking figures showed a huge rise in anorexia and bulimia among young girls over the last five years."

The journalist in me wants you to think about the facts: In 2003-04, 35 girls under the age of 8 were admitted to hospitals for EDs. So we're talking about a jump of 9 girls--hardly a "shocking" figure.

The advocate and mother in me wants you to think about the fact that even one girl with anorexia or bulimia is a tragedy, whether she's 8 or 18.

Watch. This. Please.

Help for bulimia

I know from personal experience how family-based treatment (FBT, also known as the Maudsley approach) can work in treating anorexia. I'm thrilled that the evidence is mounting for its effectiveness with bulimia, too, especially for teens with bulimia.

But don't take it from me! Maudsley Parents has been putting together information on bulimia and its treatment, which you can see here.

Both Stanford University (where Dr. Lock teaches and researchers) and the University of Chicago (where Dr. le Grange is based) are recruiting teens for bulimia studies right now.

Here's a video of Dr. James Lock, who literally wrote the books (along with Daniel le Grange) in the U.S. on FBT, talking about bulimia:

Rant ho

Now that we bloggers have come to represent the new media, we get a lot of the same kinds of PR stuff that used to go to newspapers and magazines--press releases about new products, upcoming events, etc. Occasionally I find something of interest.

More often, I cannot believe someone sent whatever it is my way. Take, for instance, the email I got today. Subject line (cue drumroll):

Could the Recession Be Making Us Fat?

Gee, I thought we were already too fat--in the midst of an obesity crisis, as a matter of fact. The recession's only been around a year at most. So, I don't know, no?

The email goes on with predictable idiocy to quote a nutritionist saying that in "uncertain times," people "crave rich foods." That's merely banal. The truly enraging part comes next:

"Eating disorders like anorexia nervosa and bulimia are also on the rise. "

Since the prevalence of anorexia and bulimia has been pretty constant for as long as we've been diagnosing them (about 1 percent for anorexia, 2 to 3 percent for bulimia), I'd love to know where this nutritionist is getting this shocking new information. Maybe from the bullshit fairy?

The journalist in me recognizes what we call "fudging" when I hear it, and this is pure fudge--the kind of unsupported generalization people offer up and that too many people believe because, um, it sounds like the fudger knows what he's talking about.

And here's the kicker:

"Both illnesses are tied to stress, depression and the need for control, which is a direct link to the sentiment of many Americans during this recession."

Oh really? Notice the fudging language here? EDs are "tied to" stress and depression. They sure are. So is cancer and heart disease. And then we get the twist of the knife--that old "need for control" crap that's been trotted out routinely ever since Hilde Bruch started writing about anorexia.

The whole thing is actually shopping this unnamed nutritionist as an authority on--wait for it--losing weight.

Yeah, this guy is a real authority, all right.

Note to PR flacks: Do the research before you send out crap like this. You're doing your clients way more harm than good.

Next time I'm naming names.

Seeing red

As a professor of journalism, I read a lot of media. And some days, what I read makes me feel downright ashamed of my industry. Today is one of those day, and the triggering story is this one, from the Washington Post.

The piece is written by a young woman who discusses the power of a parent's words to trigger an eating disorder. I have nothing against the writer; it's a heartfelt and I'm sure honest piece of writing. The writer attributes her three-year course of bulimia to a critical comment about her weight from her mother. The piece goes on to list "resources" for parents, presumably to prevent them from doing such things in the future.

I'm not defending this mother's comment. Far from it. I grew up in a family where comments like these were fairly commonplace; I know how hurtful they can be. My problem is with the editors of the Post, who did not do their homework. They accept this premise as if it were 100% true and present no other point of view. There's nothing in the story to contradict the notion that a parent's comment can in fact trigger an eating disorder. There's nothing on the heritability or biological roots of eating disorders, on the neurochemistry of starvation and purging. Readers are left with the sense that a stray comment, especially from a mother (always the mother), can cause the nightmare of an eating disorder.

Had the editors of the Post looked at any of the recent research on eating disorders, they might have been inspired to add another perspective to this young woman's story. Had they stopped to think about it they might have realized that if a parent's words were truly that dangerous, we'd have many more cases of eating disorders to contend with (because God knows parents say hurtful, stupid things all the time, myself included).

The irony is that this piece ran in a package along with an excellent piece written by Carrie Arnold, whose blog Ed-Bites and books are both well-researched and moving. Arnold's piece is informative, but its headline and deck--"Extreme Measures: When Kids' Size Is a Problem, Parents Seek New Solutions"--written by the editors, are misleading, possibly deliberately so. Since when are anorexia and bulimia a problem of a child's size? Hello, do the editors here know anything at all about eating disorders? Do they not care? This kind of thing perpetuates the destructive myths around eating disorders--that they are "about" appearance, that they aren't serious health issues, that they happen only to the children of overinvolved and overcritical parents.

Fact: Eating disorders happen in all kinds of families--rich, poor, white, black, Latino, overinvolved, neglectful, respectful, authoritarian, authoritative, permissive, large, small, functional, dysfunctional.
Fact: Eating disorders are complex and multifactorial. We don't understand their origins. We do understand that blaming parents is both unhelpful and unhealthy--and often untrue.
Fact: The family is almost always a child's best chance at recovery.

The Washington Post's concept of families seems about as outdated--and harmful--as the photo above.

I shouldn't be seeing red right now. I should be used to this. Somehow I never get used to it.

Six-year-olds and eating disorders

This Canadian article, published last November, is one of the few I've seen anywhere that overtly links comments and teasing about weight with eating disorders. A significant percentage of teens with eating disorders are overweight at some point. As this piece points out, other people's responses to their weight can start them spiraling down into the hell of an eating disorder.

"Research shows that when girls are teased about their size and their shape, they stop eating," says Mary Kay Lucier of the Bulimia Anorexia Nervosa Association (BANA).

Notice that she did not say "when overweight girls are teased." That's the part that gets me. The act of teasing and making fun of a young girl's weight, even if it's "all in fun" (a phrase I loathe), can be enough to trigger self-starvation in some kids.

Lucier went on to say, "We've had 25 seven-year-olds in the past year come in in a state of acute starvation." I can imagine all too well what lies ahead of some of these girls. It's not pretty. Not at all.

BANA runs education programs, but its budget (like so many nonprofits') has recently been slashed. If you feel motivated to give away a little money in a good cause, download a donor form here.

Maybe the best thing all of us can do is teach our children that just as it's not OK to touch someone who doesn't want to be touched, it's also not OK to comment on anyone else's body--positively or negatively. We have better things to talk about.

Parent support group meeting in Madison, WI

UPDATE: This meeting has been postponed due to weather. It will now be held Tuesday, 1/20, at 7 pm at Starbucks.

The monthly Maudsley parents support group meeting in Madison will take place this Wednesday, January 14th, at Starbuck's, 3515 University Avenue, beginning at 7 p.m.

This is a fabulous get-together of parents who are in various stages of family-based treatment and who cheer each other on, help each other problem-solve, and support each other through one of the toughest experiences a parent will ever go through. If you're helping a child through anorexia or bulimia with FBT, you might feel like you don't have time for something like this. But try to find the time--it'll help keep you going through the tough moments. And as we all know, there are plenty of those.

For information, contact Denise Reimer, reimer1@charter.net.

New stuff at MP.org

If you haven't visited the Maudsley Parents site in a while, take a look. We've posted lots of new content, including a wonderful video interview about anorexia with Dr. Daniel le Grange of the University of Chicago, done by our own Jane Cawley. There's also new information in Spanish, a new article on eating disorders in boys, an updated and downloadable recipe collection, a video interview with Dr. le Grange on bulimia, and more. Plus there's a new search feature on the site.

Stop by and let us know what you think! Kudos to Jane Cawley for the new content and organization, and to Ann Farine, our web designer.

Support group meeting in Madison, Wisconsin

The Madison parents' support group is meeting tomorrow, November 11th. This group is for any parents interested in using family-based treatment (the Maudsley approach) for their child with anorexia or bulimia. Parents who aren't currently using it but who would like to know more are welcome to attend. This is a great and inspiring group of parents.

Where: Starbucks on University Avenue, Madison
When: 7 p.m.

No need to RSVP. If you want more information, please contact Denise Reimer at remier1@charter.net.

Free bulimia treatment

A research team at University of North Carolina, led by the fabulous Cindy Bulik, is looking for people with bulimia to take part in a pioneering study on treating this disease.

The study takes place at two sites: UNC, in Chapel Hill, and University of Pittsburgh. But you may not have to live in either of those places to enroll in the study, because half the study participants will be randomized to what researchers are calling CBT4BN, a web-based treatment involving weekly on-line chats with therapists and other distance elements.

The idea is to get treatment to people who may not have access to a therapist trained in cognitive behavioral therapy (CBT), which is currently the gold standard of treatment for adults with bulimia. The Maudsley approach has shown great promise for adolescents with bulimia.

Eating disorders are terrible, life-sucking diseases, and their treatment is still largely mysterious. Studies like this one are literally a lifeline to people struggling with EDs. So thank you Cindy, and the rest of the team, for doing this crucial work. Those of us who have seen people we love come suffer with an ED are very grateful.