April 30, 2009

The "holy cow" of eating disorder treatment

If you follow my writing (doesn't everyone?) you will share my shock that a paper challenging the importance of weight would make me happy.

"Anorexia nervosa-Irony, Misnomer and Paradox" by the esteemed Bryan Lask and Ian Frampton has this incendiary introduction: "professionals tend to hold the same morbid preoccupation with weight, BMI and targets as do our patients"

Now, I would start with a tiny disagreement: I think a bigger problem is that the profession does NOT pay enough attention to weight. The medical establishment does, and nutritionists do, but most eating disorder patients are seen by psychotherapists primarily or exclusively until they are so ill that their prognosis and treatment is indeed centered around weight restoration and targets.

The arguement of the paper is not that weight restoration doesn't matter. The argument is that weight is a poorly understood, poorly measured, easily gamed proxy for real medical measurement. And this is indisputable. Sitting around staring at the number when we don't make the targets based on good science and the numbers change for many reasons and even at best the number on the scale isn't measuring recovery of the brain.

But there we are: isn't the problem that the scale is the only measure we really have or agree on. The body compensates for malnutrition almost to the point of death and the other measures available are of likely harm but never of HEALTH. We can't measure mental wellness. We can't weigh stability.

I'm ready to agree that weight is a silly measure but I need two things before I let go of this rung: alternatives, and some assurance that regaining medical health is considered a minimum if not sufficient goal of treatment.

Because most ED treatment ignores weight restoration altogether. It only considers a patient needing nutrition or medical intervention when far below optimal health. This is like getting rid of swimming lessons and lifeguards at pools and instead having a speed dial to the ambulance when someone is found lifeless.

And without any measures at all, we are back to trying to convince anosognosic patients (and yes, the authors use that term - one up to now I thought I was the only one using for EDs, hoping that others would take it up!) to stop their behaviors on the strength of our brilliant advice and cogent arguments. Without measures we are left as families to keep feeling and saying "you are not well" but lacking confidence ourselves that we are making sense. We leave clinicians unable to intervene until life is threatened, and bystanders confused and angry.

Yes, it is not about the weight. But bring me other measures and assure me that that it is at least about the weight being healthy, because that cannot be assumed.

"There was no warning"

Anorexia kills Shropshire woman: "There was no warning" is a story repeated over and over so often I sometimes can't tell if what I'm reading is a new story. The reports of parents reaching out after losing their precious children to this illness have an eerie interchangeability. The children and families are each unique, but the stories are so alike.

Yet despite these repeated nightmares and the lessons they impart, what I see EVERY DAY are parents who are told to back off, that the situation isn't serious YET, the weight isn't "dangerously low," that a little bit of purging is okay, that "they have to choose."

Between these media reports and personal stories of lost loved ones come the chiding of those who say parents are "in denial" and "co-dependent."

What I encounter every day are parents deeply alarmed and going from resource to resource seeking information and wanting to be more assertive but held back by an obstacle field of patient anosognosia, legal issues, professional alliance with the patient, tradition of parentectomy, a lack of public information, and the powerful inertia of a lifetime thinking that this person before you is in control of his or her actions.

I see parents who desperately want to do more, try to do more, and wish they did more later. It isn't "denial" that holds families back. Parents are doing what the media and professionals and almost all books for parents about eating disorders are telling them to do. Parents need to hear another message:

There will be no warning. The diagnosis is your warning. The time to act is at the first sign of this TREATABLE mental illness, and the clinicians to work with are the ones who see families as an ally and not a problem. The danger is not the lowest weight and hitting bottom; the danger is failing to act as soon and as hard and for as long as possible. Leaving that decision to the patient is cruel and flies in the face of what we know about what this illness does to cognition.

We need to change the narrative of these tragic stories and these families so crushingly and unfairly victimized not just by the illness but by society and the clinical environment's - and our own - lack of action. The best memorial to the beloved children lost would be to intervene on behalf of the countless mothers destined to be the next generation's tragic news story headline.

We're all part of the problem if we're not part of the solution.

April 29, 2009

Unpacking my bags and my files

Some links of interest I'm cleaning up while unpacking:

What is not to love about a "Database of Uncertainties?"

Forget the article and the treatment discussed, can I just tell you how lovely it is for me to see this choice of words: brain disorder" used in this NBC piece? Back a few years ago I would have wept to get that validation for the idea that was getting me treated so poorly by fellow parents and in clinician's offices. Just the fact that a parent can see that written in a major news story is huge and not to be taken for granted. It is still rare, but as it becomes normal I think the way society uses the words "anorexia" and "bulimia" and "eating disorder" will change.

Sleep Maudsley?
Early Intervention For Children Of Parents With Bipolar Disorder: "The Pitt researchers believe that irregular schedules during adolescence, in combination with other risk factors, may increase the chances that an adolescent with a family history of bipolar disorder could develop mood symptoms. During treatment, a trained IPSRT therapist works together with the youth and family to improve stability in the teen's daily schedules and sleep cycles and to help enhance his or her interpersonal relationships."

The irony of the following really needs no explanation to parents of eating disorder patients: Dieting as an interrogation technique

April 28, 2009

Up-sizing

I grit my teeth when I hear the term Size Zero. The problem really isn't about fitting into a Size Zero world. Let's start talking about trying to fit into a size Twelve world.** Let's change the conversation.

Most of this dieting and self-hating and haranguing of others over weight isn't about anything near Size Zero. It is about average sizes. It is about fitting into size Twelve, Fourteen, Sixteen. The average "healthy weight" American woman is a size 12 or 14. This puts you in and around the "Plus" size section, which in our fat-phobic society is an admonition, not a description.

"Fashionable" clothing stores don't even CARRY normal sizes. And with teen clothing designers the situation is even worse: clothing sizes are defined as XXL at puberty proportions. What does it mean when being average - when by definition most bodies - are automatically off the rack and and "catalog only?"

The longing for and idealizing of size 12 is probably causing more anguish and foolhardy dieting than any Size Zero envy. Real women out there are falling over themselves trying to stay out of "relaxed fit" jeans, not mannequin-sized boy shorts. By using the term "Size Zero Debate" we make a miserable mockery of what is already a circus.*

How would the conversation change if we said "Trying to fit into her size 14s" instead of "Size zero?"

*I still think we're barking up the wrong tree, of course, at trying to fit ANYONE into any size as a proxy for health and appearance and eating morality. And no, I don't think the "Size Zero" nonsense is directly causing eating disorders, which I believe are a mental disorder triggered by dieting in those with a genetic predisposition. But we could all stand to change the conversation and the standard and that might decrease dieting and moralistic eating, and therefore eating disorders.

** US sizes. To convert: www.cntraveller.com/toolkit/clothes_sizes.asp

April 27, 2009

AED Conference, Cancun, Cancelled

Oy.

I just got word that the Academy for Eating Disorders conference in Cancun has been cancelled. That was probably a tough call for them, and a big disappointment for so many people. But the right call; the situation is still so uncertain. Many were cancelling even before the call.

Time to unpack.

April 24, 2009

Miss Universe and Susan Boyle

I'm sorry to be contrary**, but I fear we've missed the point on Susan Boyle and Miss Universe.

Extreme visibly low weights are not the problem: sending women onto stages to scrutinize and critique their bodies (modeling and beauty pageants) - that's a moral issue we all need to examine.

Susan Boyle defied expectations of her entertainment value, yes. The performance does make me cry, but not as much as the shock of the onlookers and their unabashed "everyone was laughing at you." Since when(and for how long will we continue) does being of any appearance become a condition that makes stepping out in public "brave."

Signed,
Proud member of the frumpy 47-year olds with hair issues club***

**Actually, no: I'm not.
***On this, I totally AM.

April 23, 2009

Why words matter

Progress in perhaps the most important sticking point in changing the way eating disorders are treated by insurance companies (and public opinion):

Redefining eating disorders as "biologically-based mental illnesses"

It isn't just semantics. It is the difference between seeing this as a choice (that one must choose their way out of) and an illness (for which there ARE effective treatments).

See also:
Academy for Eating Disorders Position Paper:
Eating Disorders Are Serious Mental Illnesses

April 21, 2009

A anti-clean campaign

I've had it with the media's promotion of cleanliness. These unrealistic images of tidiness in our media are pushing people to become insecure and anxious and Obsessive Compulsive Disorders are at epidemic numbers. Situation comedies, dramas, even shows for children promote these shiny scenes of germ-less organization and model a standard than no normal family can maintain.

This false sanitation of our society has to end. Unthinking teachers are pressing students to wash their hands over and over - even holding less clean children up to public ridicule. We even have medical professionals in on this, spreading fear and threatening to appeal the Five Second Rule and other traditional values. There is stigmatization of the sloppy and cluttered, and bullying of the rumpled is on the rise.

The standards portrayed in the media are not realistic. The number of people who die from germs on doorknobs has been exaggerated. Most families have a "junk drawer" and 67% of the population in a recent study were found to cough into their hands and not their sleeves 67% of the time. Yet our society is healthier and more robust than ever. We know, from scientific studies, that overuse of antibiotics is creating super-germs and a too clean environment can lead to later allergies in babies.

I call on the media to end these images of perfection and take a stand against Obsessive Compulsive Disorders. Consumers: just say no to media portrayals of homes with no toys on the floor and boycott hyped up cleaning products. Leave hand sanitizers to doctors and politicians and stand up for a world of responsible use of clean images.

April 20, 2009

April 19, 2009

Born Anorexic?

For a long time the only acceptable narrative for this illness was about thinness and victimization. But I note a growing number of former and even some current patients who not only accept but endorse the idea that an eating disorder is a brain condition, a genetic predisposition and not a personal choice or weakness. They report feeling relieved and helped by this knowledge instead of demeaned.

Was I Born Anorexic? is one such essay.

This is a meaningful change in the landscape of eating disorders, and I wonder if it is coming about as society becomes more comfortable with seeing the brain as a functioning (and sometimes malfunctioning) organ, or is it a function of a change in how eating disorder patients are being treated, or are we simply only now ready to hear this directly from patients?

Whatever the reason, I am glad to see it. May a new generation of recovery and recovered voices tell the truth about eating disorders.

See also: Carrie Arnold's blog, the Patients Speak page at F.E.A.S.T., and June Alexander's book "My Kid is Back."

April 18, 2009

Are we there yet?

I have a gut negative reaction to just handing out pills to fix things, but I also have lots of evidence that a reflexive antipathy to drugs has delayed as much good as it has held back much bad. Have we reached a point in addiction treatment that drug treatment may work better than the other options? Is the problem in alcoholism the brain-based craving, or deeper issues one drinks to cope with? And why does this question dovetail so closely to the discussion about eating disorders (where as yet there is no real pharmaceutical approach)?

With anti-addiction pill, 'no urge, no craving'

April 17, 2009

F.E.A.S.T. incorporates!

It is a historic day at F.E.A.S.T. : we are officially incorporated.

We are legally a "we" of families around the world supporting each other .

More details later, but if you want to see a re-enactment of the founding of F.E.A.S.T. please watch this video: YouTube.

**thank you, Lydia!

April 16, 2009

unintended consequences

The truth: good intentions aren't always the best guide to success:

In our zeal to prevent ulcers, we also kill a bacteria that may be protective against asthma and other conditions.

An unintended consequence of skin cancer prevention may be that we put people at greater risk for MS and other illnesses by lowering Vitamin D

More examples of Treatments That Don’t Work **

There is great disdain for evidence-based practices in some circles, including much of the eating disorder world. People believe that what they do should work. They don't like formulas for determining care plans. They believe in clinical judgement. But emotion and bias are risks to be wary of as well.

April 15, 2009

Put put tsk tsk



My topic is usually restrictive eating disorders, especially anorexia and bulimia.

But it is increasingly difficult to discuss eating disorders without addressing the bus going in the other direction: our society's fatuous and self-satisfied pitchfork-waving crusade against "obesity." And the smug lip-smacking focus on "Childhood Obesity."

In the eating disorder world people like to stay on the fence on this topic, promising recovering patients "we won't let you get fat" and settling for the lower side of target weight ranges because patients won't "tolerate" anything more. We say "you're not fat" in some sort of reassurance as if actually BEING fat was indeed a fate worse than anorexia.

The bus is moving too fast and it is too big and I have enough to do just getting attention to the brain disorders on my plate here, but for those parents who are working to sort this issue out - and if you have a kid with a restrictive eating disorder no doubt you do have to figure out what side of the road to walk on to keep from being run over - may I point you to a lovely (though perhaps more the size of a moped than a bus) movement toward rational thought on the topic.

Four big, fat myths - Telegraph
Lessons from the Fat-o-sphere
And a shout out to Obesity Myths: Bias and Bologna by Dr. Shepphird for a wonderful overview of the issue.


April 14, 2009

It's not about the meat

I'm pleased to see research and media attention focused on the issue of vegetarianism and eating disorders. Of course, it's a touchy issue because vegetarians, like any minority, are subject to a lot of ignorant criticism.

There is nothing inherently wrong with vegetarianism. Entire cultures eschew meat or live with minimal animal products. Although some people embrace vegetarianism for moral reasons, I reject the idea that we should be moralizing about the rights and wrongs of that choice. The problem with eating disorders and vegetarianism is what I call "pseudo-vegetarianism." If the goal is to avoid eating, that is disordered. If the motivation is to embrace eating, that is less worrying.

People with brains predisposed to eating disorders avoid eating. For anorexics this leads to rapid malnutrition. For bulimics this leads to chaotic and headlong eating and compensating. Although the issue with binge eating is less clear, I'm leaning toward the evidence that restriction is at the root of that as well.

Vegetarianism is a socially sanctioned category so people are often cowed** by the moral air around it and unwilling to criticize. If someone said "I'm a red-food-atarian" we wouldn't hesitate to say "huh?"

I respect the choice to embrace vegetarianism. Emphasis on: Embrace. Enjoy. Bring into one's life the delicious, rich, varied, wholesome history and food culture that doesn't include meat. Vegetarianism ought not be fear-based. No one's food life should be fear-based.

But just as a sudden "need" to exercise hours a day, wash one's hands compulsively, and eat only at certain hours may indicate something gone awry in the brain, a "need" to give up meat can be a sign of emerging mental illness. And due to the functional role of nutrition in brain health, cutting out key nutrients during adolescence could trigger or exacerbate brain changes leading to an eating disorder.

I believe parents can and should deal with this issue with the same confidence and parental authority they would if the symptom was fever or a rash. Mental health is our business.

**!

April 13, 2009

FREED Act

A few people asked me to give more information on the FREED Act that was the main focus of Lobby Day in early April.

If you want to read and track this bill, here's a nifty tool: H.R. 1193: Federal Response to Eliminate Eating Disorders Act of 2009.

This legislation, if it becomes law, would be the first comprehensive U.S. law on eating disorders at a federal level. It has three components:
  • Research
  • Treatment
  • Education and Prevention
The FREED Act focuses on getting good statistics on rates of illness and on evidence-based treatment. It would provide for three Centers of Excellence for research and treatment - a model that has worked well in other medical fields. And it would have a significant educational component for the public and for educators and doctors.

The bill needs co-sponsors in the House. Please call your US representative to ask them to co-sponsor. Our Virginia team walked into legislators' offices and asked, and sometimes got, support for the bill. Other representatives have signed on because of phone calls from constituents. You may make the difference in your region with one phone call or letter.

April 12, 2009

Get outa here!

If CBT for bulimia can be done by teleconference as successfully as "face to face" then I imagine the pool of families who will seek that service will not be limited by geography. Not to go all Adam Smith, but taking geography out of the picture would inevitably also change the market. Clinicians passed over for distant service providers will be forced to ask themselves "why aren't I offering more effective services?"

I look forward to the day when families are able to choose services for their ill children based on evidence of effectiveness as well as fit with the patient's unique needs.

April 11, 2009

Dabbling

I no longer believe that eating disorders are the great killers and maimers of our children.

The obstacle isn't the illness - we have the science to fight this illness - it is the delayed, chaotic, incoherent, unscientific DABBLING that we all do in response.

It takes informed, dogged, well-armed families to face this illness. It takes a readiness and willingness to face the reality of this head on. We need a clinical team ready to back us up, educate us, and believe in our child's recovery no matter how bad things are now.

Too many people in positions of authority are too willing to give their opinions and services on eating disorders without knowing how little they know and what harm they can cause. No one dabbles in oncology. Manicurists don't offer to do foot surgery. If we could do one single thing to improve the state of eating disorder recovery , one significant thing, it would be to get the dabbling to stop, and evidence-based clinicians to step forward into the breech!

April 10, 2009

"Weight is not a behavior"

I just love this.

"Weight is not a behavior"

The AED's new AED Guidelines for Childhood Obesity Prevention Programs" is going to be a wonderful tool for all of us out here who are very concerned about the well-meaning but essentially meaningless "war on obesity."

If our society took half as much pleasure in eating as it does relishing the assumed moral and aesthetic failings of our neighbors - wouldn't that be delicious?

April 9, 2009

Crave a good book on binge eating?

I had the opportunity to read a pre-press copy of Dr. Cynthia Bulik's book, Crave, a while back. I'm glad I did.

My consciousness has been raised especially in the last year on the topic of binge eating disorder (BED). I can thank Chevese Turner for part of that: the head of BEDA is holding the whole eating disorder world's feet to the fire on this one.

There is a lot to learn about BED, about effective treatment, and about how it relates to other eating disorders and disordered eating. But what we do know is that patients need and deserve help and better treatment. So do their families.

Bulik's book has some interesting elements to it. One is that the reader hears directly from the author. This is from "me" to "you" without a distancing tone. Yet this book has authority: Bulik is a recognized world leader in eating disorders and their treatment. The book also avoids equating an illness with a person: she isn't pathologizing people into a label. By breaking the types of binge eating into categories, Bulik is trusting her readers to find themselves and their own solutions.

I lent the book to a friend who told me her husband was struggling with "eating too much" and how the two of them were having escalating conflict over the issue. I got a call the week later that was tearful and deeply grateful. She said reading the book helped HER as much as it helped HIM. She said positive changes started immediately in their home and the conflict went down overnight. The family is working together now, and progress is being made. What better recommendation for a book?

April 8, 2009

Old data in new skins

Well. Remember when I blogged on some "new" research recently?

I wanted to learn more about the actual paper and not just go from the press reports before I said more.

Well, turns out the research is something you fine folks already knew about, maybe even because I talked about it myself back in September of last year.

The whole paper is significant and important but, fascinatingly enough, I didn't recognize it once it got into those press reports. For one thing, the reports didn't mention the name or location of the published article. The conclusions and implications got new interpretation.

But the title of the paper "The fault is not in her parents but in her insula" is kind of a dead give-away that the author was misquoted and misinterpreted in the press. And none of this changes the fact that the article tended to RE-ignite the debate about how "bad parents" cause eating disorders, of course. And fueled the already suspect fire of media blame.

But it is instructive to see how data and research get into the hands of the public and are interpreted once there. And another opportunity to point you toward that research.

April 5, 2009

Lobby Day 2009

Lobby Day 2009 in Washington DC was outstanding!

The Eating Disorders Coalition is well-organized and peopled with enthusiastic and motivated volunteers - and it runs these events so well. So well, in fact, that everyone involved ends up feeling more grateful than generous. But the volunteers are indeed very generous with their time and energy and teamwork.

Two days worth of trainings and events were draining (took me two days to recover!) but invigorating as well. I learn more about the US government, about legislative process, and about healthcare policy in those few days than I ever did in school. And I also learn a lot about the grass roots eating disorder world - things I wouldn't get at a conference or from reading.

I had the honor of escorting one of the Virginia teams this year, as I did last year. My team had four who brought their experience as patients, one clinician/former patient, and one clinician/researcher, and myself: a parent/activist. We had three scheduled appointments with House staff - legislative assistants to our individual Congresspeople. We also did four "drop-by" visits and even experienced a "walk-by" where one of our team recognized a staffer friend and the encounter may end up being one of our "yes" votes for the FREED Act.

Our funniest appointment was our first: the LA rushed up and said "can we walk?" and thinking he meant to bring us to an adjoining office we all moved down the hall with him. And then another hall. Then an elevator, an underground tunnel, more hallways... we calculated he brought us about a half mile at high speed all the while our team answering questions and trying to discuss the FREED Act and our reasons why we hoped his rep would co-sponsor it. Arriving at his destination two buildings away he shook our hands and said "Thank you for coming." A rolling lobby visit. And a sprint back to our next appointment so carefully planned to be in the same hallway as the first.

The most exciting appointment was our fast-paced as well. We had a co-sponsor in under five minutes: the LA was herself experienced with eating disorders and lack of access to care: "People don't get it" she said.

There is never enough time to meet all the people at Lobby Day and learn their stories, but I was honored to get to know the people in our team better and hear theirs. They rocked (and ROLLED).

Next Lobby Day? September 2009.

I only took one picture, I'm sorry to report, but since it includes a lovely baby's bottom I couldn't resist. Oh yeah, the Capitol is visible as well: