I need your advice and wisdom

As you no doubt know if you're reading this, I've let this blog languish for a long time now. Too long. I won't go into the reasons for that lapse here, but I do beg your forgiveness. And so it's fitting that for my comeback post, I'm asking you for advice.

The advice isn't for me but rather is for a woman I'll call Mary, who's in her mid-30s and has been ill with anorexia since she was a teenager. She's been through in-patient, residential, intensive outpatient, outpatient treatment--you name it, she's been through it. And she is still sick.

Mary is smart and motivated. She understands what she has to do to recover: she has to eat. As for everyone with anorexia, eating is terrifying for her. Those of us who have re-fed a child or teen or young adult with anorexia know how very hard it is for someone with the illness to eat, and how much they need someone to stand with them and stand up to the eating disorder. Mary wants that very badly. She doesn't want to die. She wants to recover and knows, at this point, that she can't do it eating on her own.

Mary's dilemma has made me think long and hard about the need for a different level of care. I think one of the reasons FBT (the Maudsley approach) is successful most of the time is because parents care about their children in a different way than, say, administrators or caregivers at a residential facility care about their patients. I've come to believe that that love is part of the cure, maybe because it motivates parents to hang on through the toughest moments, or maybe because it's part of what breaks through the cognitive distortions of the illness. It doesn't matter why, really.

So I wonder: What if we created something like halfway houses for refeeding people with anorexia? Not residential facilities, with their (perhaps necessary) rules and restrictions and inevitably institutional feeling. More like a small house, with 3 or 4 people living there and round-the-clock nurses who developed real relationships with their patients. Who really cared about them. Who were capable of empathy and affection and, yes, maybe even love sometimes. There wouldn't be hours of group and individual therapy, because those things really don't help people until they're more or less weight-restored, so the cost could be much lower than the one to two thousand dollars a day cost of residential care.

What I'm really talking about is a kind of foster re-feeding home. I've given a lot of thought to inviting Mary to my home and re-feeding her, but there are some logistical challenges involved that I'm not sure are solvable.

So I put it to you: Do any of you know of resources for someone like Mary? Resources I'm perhaps not aware of? And what do you think of the idea of creating refeeding homes for people with anorexia?

I'm eager to hear from you. So is Mary.

Family-based treatment in the New York Times

Great story by Roni Rabin in tomorrow's New York Times about family-based treatment for anorexia. Nice interviews with Rina Ranalli, whose daughter recovered using FBT; Dr. Daniel le Grange of the University of Chicago; and moi.

Change is coming. And it's about bloody well time.

Hope for teens with anorexia

The release last week of the long-awaited results from a five-year multi-site study confirmed what many of us already knew: family-based treatment for anorexia works. In a controlled randomized study, FBT worked better than traditional individual-based psychotherapy: More than half the patients getting FBT recovered, compared with less than a quarter of those getting the other treatment. And far fewer in the FBT cohort relapsed.

This is great news. There's more work to be done, of course; a 50 percent recovery rate is not acceptable. But it's so much better than the usual statistics: people with anorexia stay sick for five to seven years, and only about a third recover.

Read more here on my Psychology Today blog.

The study results are in!

And they're clear and well-supported: For teenagers with anorexia nervosa, the first-line treatment should be family-based treatment (FBT), also known as the Maudsley approach.

I think the days of FBT being labeled as a marginal, alternative, or "very special" treatment for "very special families" are officially over. For a high percentage of teens with anorexia, FBT works--they recover, and they stay recovered.

Does it work for every single family? Nope. But then neither does chemotherapy, or penicillin, or other mainstream treatments we don't question. (For an inside look at how it worked for our family, see my new book, Brave Girl Eating.)

Now, the hard part: Training enough FBT therapists so that more families have access to them. Luckily, someone's already on the case.

We still need more research. We still need better techniques. But there's no question that this is big news, and important news, for families and clinicians.

Big congratulations to Dr. Daniel le Grange and Dr. James Lock, who co-authored the study.

Going through hell? Keep going

That's one of my favorite quotes, from Winston Churchill, as it happens, and the title of my newest post over at Psychology Today. See you over there.

Jezebel on parents and eating disorders

Jezebel writer Anna North put up a piece today based on an interview we did last week about not just my new book, Brave Girl Eating, but the whole notion of family-based treatment.

The comments, sadly, reveal some of the biases against FBT (the Maudsley approach). Take a look and leave a comment if you are so moved--I think Jezebel readers would benefit by hearing from some who have had positive experiences with FBT.

I'm off to do some deep breathing.

We need more FBT therapists!

If you're a therapist who treats eating disorders and you'd like to become certified to do family-based treatment (also known as the Maudsley approach), you're in luck. The Training Institute for Child and Adolescent Eating Disorders, run by Drs. Daniel le Grange and James Lock, is hosting a two-day training in Chicago, September 13-14.

For information and to register, visit the Training Institute's website. Because heaven knows we need more FBT therapists around the country/world!

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.

Looking for young adults with anorexia

Researchers at the University of Chicago, under the direction of Dr. Daniel le Grange (pictured, left), have just won an NIH grant to study family-based treatment (FBT, also known as the Maudsley approach) in young adults. If your family lives in the Chicago area, or within driving distance, you could get free treatment if you qualify for the study. Not to mention the chance to get some of the best treatment for anorexia in the country. It's a win-win!

Here are the study parameters:

This study is a good match for you if you are:
• 18 to 25 years old
• Meet diagnostic criteria for anorexia nervosa
• Are prepared to participate in assessments
• Interested in cost-free psychotherapy treatment with a family member of choice

Treatment involves up to 6 months of free individual and family therapy sessions.

For more information, please contact the Participant Coordinator at 773-834-9120 or visit University of Chicago here.

Chicago conference! April 26!

If you're in the Chicago vicinity (or even if you're not), please join Maudsley Parents for a day-long conference featuring some of the smartest and most articulate researchers in the field of eating disorders.

Our speakers include Dr. Walter Kaye, director of the University of California San Diego's Eating Disorders Program, and Dr. Daniel Le Grange, director of the University of Chicago's Eating Disorders Program. They're two of my all-time favorite experts, and they'll have some exciting new research results to share. We'll also have a panel of parents who will share their experiences using Family-Based Treatment (FBT) to help their children recover from eating disorders.

Register here before Feb. 28 and the fee is only $40. After March 1, the fee is $50.

I'll be there--I hope to see you!

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:

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.

The Maudsley Institute

It's not really called that, but that's how I think of the new training program for Maudsley therapists, organized and run by Drs. Daniel le Grange and James Lock, co-authors of Help Your Teenager Beat an Eating Disorder. Its official name is the Training institute for Child and Adolescent Eating Disorders, and it aims to do something incredibly important: train therapists to do true family-based treatment.

Right now, many families in the U.S. who want to use family-based treatment to help their children recover from eating disorders face the unhappy choice of trying to go it alone, drive many hours to see a Maudsley therapist, or go with a different treatment. FBT is hard--the hardest thing most families will ever do. They need support. But at the moment, there just aren't enough true Maudsley providers to go around.

Maybe more important, families have no way to tell the faux Maudsley providers from those who truly practice and believe in FBT. There's a surprising number of therapists out there who say they practice Maudsley but who've given it their own unfortunate spin, like this one. And there are outpatient and inpatient programs who claim the same. Too often, what they're doing is NOT true FBT.

Lock and le Grange's new institute will put the seal of approval, as it were, on professionals who not only train with them but actually practice true FBT. This is good for everyone: Providers will get more training from the folks who know the treatment best, and families will have a measure by which to judge quality and competence of potential therapists. It's win-win.

The first training will be held February 27-28 in Palo Alto, California. It will take some time to "graduate" the first group of Maudsley therapists. Personally, I can't wait. Thanks to Drs. le Grange and Lock for doing this.

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.

Of parents, health, and eating

This semester I teach mainly seniors, and today I was asked by some folks in another part of the university to administer a health survey to my classes, to gauge the effectiveness of some "healthy living" efforts they've been working on for the last few years. I couldn't help noticing, as I collected the surveys, one line in particular. It was one of a series of questions about where these 22-year-olds get their health information. There were many choices (the internet, magazines, newspapers, classes, health initiatives on campus, etc.), and many of the students indicated that they didn't get health info from very many sources. The one source that almost unfailingly scored high: their parents.

That's right. Their parents. These young women (and a few men) have been living away from home for the last four years. They've been independent. They've traveled to Europe, many of them; they're close to starting their own adult lives. And yet they trust their parents more than almost any other source of health information.

I must admit that tears came to my eyes as I looked at survey after survey (just that one line, honest!).

This was especially moving and poignant given what I'd been reading earlier in the day: A book called Psychosomatic Families by Salvatore Minuchin, one of the founders of family systems therapy. Minuchin's work with families is often cited as one of the inspirations for family-based treatment of anorexia and bulimia. Until Minuchin's work, patients were routinely separated from their parents and treated (usually ineffectively) individually. Minuchin was one of the first to see patients as part of a bigger family system.

Unfortunately, his view of families was anything but positive. The title says it all: Instead of psychosomatic patients, he believed in psychosomatic families--families that through enmeshment, conflict avoidance, triangulation, and other unlovely psychodynamics created children who expressed their emotions through illness. Interestingly, Minuchin writes that he developed the idea of psychosomatic families after treating diabetic children who managed their blood sugar fine in the hospital but who had crisis after crisis when they were at home. His theory was that emotional stress at home was affecting the kids' blood sugar levels.

It's an interesting theory, and I think there's some merit in it, but not for the reasons Minuchin believed. As this rather technical article discusses, stress early in life can lead to permanent changes in physiology--in this case, rats' guts became more permeable, leading to more gastrointestinal symptoms. The idea is that some of us (rats or humans) may be more genetically predisposed to such stress mediation than others. Genes load the gun, environment pull the trigger.

For Minuchin, though, it was all environment. He blames parents for pretty much everything. For those of us who have parented children with eating disorders, his book is painful reading. For instance, Minuchin describes a family at the table with their anorexic daughter. Each parent tries to cajole, threaten, and inspire the child to eat. The child does not eat. Minuchin deconstructs the parents' behaviors as "enmeshment."

He was way off base on that one. By the time a child is in that kind of trouble with anorexia, of course parents are going to be trying to get her to eat. And of course they're going to be unsuccessful, unless they're empowered or supported by the treatment and/or professionals. Sitting in a room with a one-way mirror, pleading with their child to eat, most parents will look enmeshed and ineffectual.

Which is why I was so moved to see those answers on the surveys today. One of the fundamental principles of the Maudsley approach is that families love their children and are best positioned to support and help them through one of the most devastating experiences of their lives. Critics of Maudsley say the treatment fosters an inappropriate "enmeshment" (that word again) between parents and children. Proponents say Maudsley leverages the asset that already exists: the strong and loving relationship between parent and child.

Not all families are healthy. Not all families are functional. Not all parents love their children. But most do. And if those surveys are correct, for many adolescents and young people, parents are still an important part of the picture. And not in the way Minuchin imagined.

Update: Rogers Hospital

I got an email from the family whose daughter was being held hostage at Rogers: Their daughter came home last night. Against medical advice, but she's home.

Sounds like Rogers was still trying to bring the county in, right up to the last minute, but the family had done their homework and was able to challenge Rogers' assertions.

Now, of course, comes the truly hard part: re-feeding a 13-year-old with anorexia. But this is a wonderful example of how families that are empowered can accomplish near miracles--especially when they're motivated by love of their children.

To the family: You are awesome. As hard as re-feeding is, I found it infinitely preferable to be doing it myself, at home, rather than be far away, feeling helpless about whether my daughter lived or died. We're all rooting for you.

Why I don't recommend Rogers Memorial Hospital: Part II

Last year I wrote about the cognitive dissonance between the marketing materials produced by Rogers Memorial Hospital, in Oconomowoc, Wisconsin, and its actual therapeutic programs and practices.

That post produced a letter from Rogers' CEO himself, complaining about my "airing my grievances in a public forum" rather than talking directly to him about them.

Dude, that's what blogging's all about. Besides, I can imagine how open he would have been to my criticisms. Yeah, right.

This time around, I'm not just writing about presentation. I'm writing about practice, therapeutic practice as it's being executed at Rogers. And it stinks.

It seems that Rogers has changed its practices around the use of feeding tubes for anorexic patients. In the past, feeding tubes were considered something of a measure of last resort, sometimes necessary to save a life but something to be avoided when possible.

Not anymore. And not only that: feeding tubes are being used to keep patients at Rogers when parents want to bring them home.

Case in point: A family whom I'll call the Smiths, whose young adolescent daughter was admitted to Rogers a few weeks ago. The family was told the girl must have a tube, and although they weren't in favor, the tube was administered. Fast forward 10 days or so. Rogers is telling the family the girl has made "little progress" and urgently needs admitting to its 30-day residential program. Family can get no information on why so little progress has been made, even with the tube. Family has been researching, and has decided they want to use family-based treatment, the Maudsley approach, to help their daughter. Family tells Rogers of their intentions and asks when daughter may be safely transported home.

Next thing family knows, their local county department of child protection services is threatening to remove their daughter from their custody if they take her home. Rogers continues to insist that daughter cannot be moved so long as she's on the tube. Family says most girls with their daughter are also on feeding tubes, which constitutes a large shift in treatment protocols at Rogers.

The girl is eating. She's terrified. She wants to go home. Her family wants to bring her home for FBT. Rogers, which claims that it incorporates some FBT in its therapeutic protocols, is playing dumb and insisting that FBT would constitute child abuse and that the girl cannot safely be sent home.

The therapists at Rogers are (or should be) familiar with the studies on FBT, which show that it is very successful for adolescents under 18 who have been sick for less than three years. (It's been successful for others, too, but there are no studies yet on those populations.)

Their actions in this case and others are deeply disingenuous. Feeding tubes are a necessary evil at times. But families should be the first line of treatment and support for adolescents--especially when the family is committed to the task of helping their child recover.

Shame on Rogers.

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.

No evidence-based treatment for anorexia?

According to this study, which is an overview of 40 years of eating disorders treatments, there are still no evidence-based treatments for anorexia nervosa. "A specific form of family therapy (based on the Maudsley model) appears promising," write the study's authors.

Appears promising? Actually, FBT, or the Maudsley approach, has been shown to be successful (85 to 90 percent long-term recovery rates) for treating both anorexia and bulimia. In the last 10 years there have been several good studies on FBT, including this one, this one, and this one.

And yet some of the top researchers in the field are still saying that there is no evidence-based treatment for anorexia, and that the Maudsley approach "appears promising." Which is rather like saying that there appears to be a link between smoking and lung cancer.

After 40 years with no other good treatments, you'd think researchers would jump on this one. So why the damning with faint praise?

Come on, you guys. You're the ones who can get the word out to parents best. You have a moral obligation to spread the word about FBT--the ONLY evidence-based treatment we've got at the moment for treating anorexia. I'll be thrilled if we turn up more treatments that are effective. In the meantime, though, let's use what we've got.

Fat matters

If you're a regular reader of this blog, you know that my family used the Maudsley approach to help our 14-year-old daughter recover from anorexia. (Here's a link to the whole story as published in the New York Times Magazine.)

In Maudsley, parents take charge of their child's eating while they're in recovery. So it was up to my husband and me to devise meal plans for our daughter. Like most anorexics, she needed a lot of calories each day to gain weight--upwards of 4,000 calories a day during one phase of recovery. Because the act of eating was so terrifying and difficult for her, and because, like most anorexics, she endured many stomachaches, our strategy was to get as many calories as possible into the smallest volume of food.

What this meant, practically, was that our daughter ate a lot of high-quality, high-fat and -protein foods: Almond butter. Ice cream. Mac and cheese. (Some of our favorite recipes are here.)

Now this study confirms our instincts about what to feed our daughter. Fat, it seems, matters a lot when it comes to recovery from anorexia. Recovering anorexics who ate higher-density (translation: higher fat) foods were less vulnerable to relapse. I could speculate about why, but the bottom line is that for true recovery, you've got to eat fat. Lots of it. Not just x number of calories, but high-fat calories.

Fat can make the difference between true recovery and a lifetime of suffering.

Fat matters.