May 31, 2009

Is Your Family Back?


My friend, June Alexander, the author of the much-talked about book My Kid Is Back, is working on her next book: My Family Is Back. She is looking for families to talk with, and I welcome you to read about the project and contact her for more information:



May 25, 2009

new things on the F.E.A.S.T. site

There are new things on the F.E.A.S.T. site this week:

French language materials

A call for YOUR STORIES (write F.E.A.S.T. a letter telling your family's story - brag about your child, thank your treatment team, praise a stalwart spouse, inspire other families to "keep going."

New books to review on literature page

May 22, 2009

Is this "Food Police" week, or what?


I hate the term "Food Police." And I wear it with pride.

This week I'm hearing it a lot: as a condescending slur on parents who are using the Family-Based Maudsley approach - some of the the hardest and most heroic parenting ever. They're talking about it on the Around the Dinner Table forum, on the Dr. Phil show, and the comments are on fire on my new Huffington Post blog.

I carry a sheriff's badge when I go to ED events and point to it whenever I hear the "Well, you don't want to be the Food Police..." or "It only makes them worse" kind of comment. I don't think those who use this phrase have any idea how infuriating and disheartening it sounds to us. Though some are taking a stand, finally, against it.

To carry on the police analogy, there is a big donut hole in this thinking. Nobody goes to bed hungry at treatment centers, I notice, but that's okay at home with your parents. And make no mistake: patients at home are policed by ED, and inpatient by nurses. Patients are told to "use your skills" at home, and parents are told to let them. This makes food optional at home, and home unsafe. Is it any wonder that patients grow contemptuous and angry?

Do patients need to be in charge to recover? Yes, but the time for that is when they CAN, and DO. And treatment that allows a patient to steep in malnutrition one meal longer than they need to is treatment that gives ED a badge and a baton and a gun stronger than any caliber talking you want to put up as a defense.

To bring it back to Dr. Phil, whose show on bulimia brought forth a wave of anguish on the part of many parents I know, "How's that working for us?"

Not very well. Early and assertive intervention is the only known way to stop this illness in its tracks. Calling parents the Food Police is, effectively, a way for ED to get control of our children until their chances of recovery are slim. The policing, it strikes me, needs to be of treatment that is ineffective and those who insist on offering it and not telling parents there are alternatives. That's a swat team I'm willing to join.
** A grateful shout out to Mamame - the lyrics queen and lead deputizer of Food Police.

May 21, 2009

A drive for data, help for families

Step one: get data. Step two: get data out to users. Step three: get more data.

Two new research studies recently added to the F.E.A.S.T. site:

Stanford University
Parents Act Now- Anorexia Prevention

The Program: PAN is an online program for parents who are concerned about their daughter’s relationship with food and her body. Each week, participating parents will log onto the program which will teach you about warning signs of anorexia, the thoughts and cognitions that occur during Anorexia, how to intervene, and how to support healthy eating and exercise behaviors. The program includes video clips, advice from expert Psychiatrists, an online discussion group, quizzes with automatic feedback, and journaling opportunities, as well as educational information.

Contact: If you are interested in learning more about this study, or signing up, please contact the research coordinator: Hannah Osier at hannah.osier@stanford.edu

University of Sydney
Free Outpatient Treatment for Longstanding Anorexia Nervosa (30 individual sessions over 6 months)

The University of Sydney (in conjunction with the University of London and University of Chicago) is conducting a treatment program for females over the age of 18 who have had anorexia nervosa for more than seven years (even if there have been periods of recovery). It aims to determine which of two currently available psychological treatments have the best outcome for people with longstanding anorexia nervosa.
If you would like more information about the program, or if you are interested in taking part, please contact Rebecca Smith (Project Coordinator) at the University of Sydney
Tel: 02 9351 7329 Email: rebeccas@psych.usyd.edu.au

May 20, 2009

Pinch me!

I checked the F.E.A.S.T. post office box yesterday and was surprised by two things that make me realize how far we've come and how wonderful it is:


One of the highlights of the Cancun trip that was cancelled was to be meeting June Alexander, the author of My Kid Is Back - so she sent me my copy by mail and we're catching up by Skype.

The T-shirt for Woodland Forge gives me chills: a clinic that specializes in empowering parents to re-feed! 5-day Intensive Week with 6 month follow-up. Coached family meals. Support group! Now THIS is the kind of support parents are looking for!

I heart Kate Harding

If you are not already a fan of Kate Harding, I highly recommend it.

Some good thinking and links and kick a** attitude in a classic post:

Genetic link found among shortness, fatness, and early puberty

May 15, 2009

Blogging for the Huffington Post

I'm delighted to report that I'm now blogging for the Huffington post!

She's Anorexic, and You're a Bad Mother: "I was told in 2002 to stop feeding my child."

Do me a favor and go on over there and read and comment? And tell your friends and your mother and spam your entire email list.

I'm trying to bring the cause of parent activism and eating disorders to the mainstream here - but I need your help!

Teach the children, well?

It will surprise no one in the eating disorder world but most people outside it to know that those with disordered eating and body image are particularly attracted to professions that concentrate on those issues:

Body image, dieting and disordered eating and activity practices among teacher trainees: implications for school-based health education and obesity prevention programs

The aim was to investigate and compare body image, body dissatisfaction, dieting, disordered eating, exercise and eating disorders among trainee health education/physical education (H&PE) and non-H&PE teachers. Participants were 502 trainee teachers randomly selected from class groups at three Australian universities who completed the questionnaire. H&PE males and females had significantly poorer body image and higher levels of body dissatisfaction, dieting and disordered eating behaviors than non-H&PE participants. H&PE teachers were more likely to over-exercise and have exercise disorders, but very few self-identified problems with objectively assessed excessive exercise behaviors. Lifetime prevalence of eating disorders was 12.5% in H&PE males, 0% in non-H&PE males, 7.7% in H&PE females and 6% in non-H&PE females. Few participants had received any past or current treatment. Of particular concern is the likelihood of the teachers' inappropriate and dangerous attitudes and behaviors being intentionally or unintentionally conveyed to their school students. Those planning school health education, nutrition education and school-based obesity prevention programs should provide suitable training for the teachers involved. Screening and treatment services among teachers may also be helpful in order to detect, treat and educate young teachers about body image, dieting, disordered eating and physical activity practices. "

May 11, 2009

The Troubling Allure of Eating Disorder Books

Books like "Wasted" and other first-person narratives in fiction and nonfiction are well-known to be "bibles" to patients while ill. I also find that parents and the public read these narratives and end up mistaking the internal experience of the illness for the truth about eating disorders. So when I heard about Wintergirls, and that the audience is to be adolescents, I worried.

I expressed my concerns to the publisher of Wintergirls and was told if I read the book I would be relieved. They sent it, and I read it. I was not relieved. Not because it is a bad book, but because it is such a good book. It is well-written and engaging and does seem to channel what it is like inside the illness. But that is what makes the book dangerous.

Well-meaning parents and librarians and teachers, quite naturally, start off believing that insight and understanding the illness will prevent or help with treatment. This is - demonstrably and tragically - not true. In fact, the opposite is true.

This book, meant to make young people feel heard and to "start conversation" will no doubt become another bible of the pro-ana community. But this one will be delivered by trusted adults who will mistakenly feel they've done a good thing. Those adults need to know that this kind of information can be harmful AND URGENTLY need to know what they should be doing if they suspect a young person is predisposed or beginning to have eating disorder symptoms.

I told the publisher this. I admire the writer's ability and with another illness would congratulate her. But since my work involves trying to save lives, and I know that lives are lost while families listen to the lies of an eating disorder and waste time seeking insight and understanding.

I'm not the only one with concerns, of course. And I resisted talking about this book for a while because I hoped the author would respond to these concerns and consider changing some of the comments about parents in her public statements and consider actively changing the conversation around eating disorders to let families and peers know this is a treatable illness that is biologically based and NOT A CHOICE. That the book's message of recovery through insight is a dangerous message, especially without the context of any messages in the book by anyone about evidence-based treatment or brain disorders.

I want to take this opportunity to caution parents about this book and to point to this piece in the Well blog at the Times:

The Troubling Allure of Eating Disorder Books

And a follow up by Dr. Cynthia Bulik, one of F.E.A.S.T.'s Advisors.

Parents, I think we need to speak up. Not to attack, and not to censor, but if "conversation" is to be started we probably need to be part of it.

"remarkably weak"

The good news: more real research into treatment efficacy (randomized controlled studies). The ANTOP study

The bad news: it takes so long to get the results.

Worse news: how will we get the results pushed down into practice when the evidence we now have, admittedly "remarkably weak," is scorned and not put into use?

Solution: at the same time real research is going on, an equal push to educate clinicians and the public in the importance and helpfulness of paying attention to data.

May 10, 2009

Serious drugs

When I first read the following: "Anorexia nervosa is a serious, multifactorial disease, characterized by psychiatric and neurological disturbances, which would appear to be similar to the manifestations of dementia."

...I felt immediately protective of those with anorexia, not wanting them to feel somehow insulted to be compared to those with dementia. Which is odd, because I spend a lot of my time trying to shake people into a realization of just how serious anorexia is.

Most people talk of anorexia as serious only in a medical way - the risk of death and the leaching of bones and shrunken hearts. I think that is a distraction, to tell the truth, because no one should EVER be suffering from that level of malnutrition, period. I am far more interested in us stopping anorexia at the levels that it is mangling the mind, and that happens at even trivial levels of malnutrition. THAT brain damage is both the time to intervene and the opportunity to halt the cascade of long-term mental illness.

Can we compare dementia to anorexia? Well, yes. Dementia blunts affect, distorts memory, blocks understanding, renders its victims unable to take care of basic functions and does not allow the patient to understand why those around them are concerned. I have no idea whether this or other drugs used in dementia would be helpful in anorexia recovery but there are currently no drugs known to be helpful in anorexia recovery and that is, quite seriously, frightening.

May 9, 2009

Fear, deprivation, morality-based eating

I'm an opinionated cuss, no doubt, but I try not to say things I'm not sure of. And I've not been sure about the relationship of overeating and under-eating.

But I'm closer and closer, almost off the fence, that we are dealing with a spectrum disorder with restrictive AN at one end and Binge Eating Disorder at the other. Spectrum not because of facile visuals, but because I can now see both as a brain problem, one that makes sense in terms of evolutionary biology. It's not about the weight, but the mental imbalance that drives the behaviors. And it all starts with restriction - especially value-based restriction.

"Deprivation only heightens the way the brain values the food, which is why dieting doesn't work"

And this all begs the question: Should we be treating anorexia and bulimia and binge eating disorder the same way? Are they the same illness? Is restrictive anorexia substantially different from purging anorexia? Are we looking at phenotypes, genotypes, different illnesses mistakenly grouped together or the same illness with different symptoms? And more to the point: why don't we know the answer to these questions yet - because despite the lack of answers for all the above every treatment being offered RIGHT NOW is anchored in a specific answer. Every clinician believes one specific answer (or has at least ruled out certain answers). Every client goes into treatment with beliefs about "why" and every caregiver has beliefs about it.

Perhaps the best we can do is remain humble and uncertain while wearing our current conclusions in plain sight. A good theory, a friend of mine so wisely says, is open to change.

May 6, 2009

"anosognosia has serious practical implications"

To understand the implications of anosognosia, in relationship to eating disorders, I always find it useful to discuss the concept in another arena entirely, like this one, which has implications for the body image distortion so common in eating disorder patients:

Paralysis deniers could be helped by seeing video of themselves

May 5, 2009

Not so fast...

A Death at Age 19 Leaves a Family Struggling to Understand an Eating Disorder

"Researchers have now 'figured out that it's very important to include the family, but that was not a concept then. If anything, it was the total opposite,' Barbara remembers."

And how many lives were ruined or lost or families destroyed before they "figured" it out?

And sadder still: how many clinicians have not yet got that message? Honestly: the answer is: most. Most of the eating disorder treatment that exists RIGHT NOW is still treating the family as penitent chauffeurs and check-writers. Finding clinicians who are trained or even familiar with Family-Based Maudsley therapy is still futile in most communities.

The Siskin family has generously offered their story to help others hear the urgency and the suffering of this illness. We must hear them.