December 30, 2006

Could leptin be the answer?

With special thanks to the Anxiety, Addiction and Depression Treatments blog for their excellent introduction and overview, I want to point you to "The role of leptin in anorexia nervosa: clinical implications."

By jove, perhaps they've got it! Could this be what causes - what explains - anorexia nervosa? This is really big stuff - not only an interesting and elegant model, but immediately useful information. How often does that happen?

The entire paper is available online at the link above, so go get it from the source, or read the excellent overview at the AADT blog above.

Among the highlights:
  • "It is likely that the discovery of leptin and its functions will turn out to be the major endocrinological finding in AN to explain symptoms related to semi-starvation."
  • "determination of leptin levels in patients with acute AN should thus become part of the routine clinical evaluation at referral"
  • Why refeeding seems to make things worse for a while, derailing recovery.
  • Why it takes up to a year for the system to recover, inviting relapse.

I look forward to reader feedback on this one - read, discuss!

December 29, 2006

Did you hear what I heard?

Harriet Brown, whose New York Times Magazine article on November 26, "One Spoonful at a Time" introduced the home refeeding concept to a whole new audience, was interviewed today on Minnesota Public Radio.

The interviewer, Kerri Miller, was fantastic. Interesting and thoughtful questions, and a total lack of sensationalism and the gleeful voyeurism that often characterizes media about EDs.

Also featured was Katherine Loeb director of the Eating and Weight Disorders Program at Mt. Sinai school of medicine, and recipient of an NIH grant to research the Maudsley approach.

Well worth listening to!

Why "see your doctor" just won't cut it

You realize a family member is showing signs of illness. You do a quick bit of Internet searching and quickly determine what illness it is, and how serious it is. You immediately call the doctor.

Works for most illnesses, right?

Not with eating disorders.

Your primary care doctor will have had little or no training in eating disorders, and will probably refer you to the first mental health professional in the phone book.

The first professional you contact will not be taking new patients. The next two will not take your insurance. The third will queasily tell you they don't feel prepared to deal with eating disorders. The fourth will be hours away. The fifth will tell you they can cure it, immediately, but won't tell you how until you come in for a 3-hour pre-paid consultation. Sixth, seventh, eighth: can't see you for two months. Ninth says there is no hope, this illness never goes away, detach yourself. The tenth agrees with #9, but scolds you for being over-involved. Number 11 strongly suggests you send your child immediately to a treatment center far away. And after you do, and your child is released without a treatment plan you can enforce, number 12 tells you it is your fault for sending your innocent child away.

See a "Mental health professional" is like saying "be a good person." It is not specific enough to be of any help.

The truth is, qualified, experienced clinicians are overworked and over scheduled. Short of interviews, it is very difficult to pre-qualify or distinguish one from another. Many clinicians put out a shingle with dubious qualifications, treat people for decades without staying up to date on research, or bring dubious personal biases into the treatment room.

Most therapists, doctors, nutritionists, and other mental health professionals I've encountered have been well-meaning, dedicated, and hard-working. But only a minority have been current on the rapidly developing research on the causes and treatment of eating disorders. Most remain uncomfortable with parents, unschooled in the physiology of malnutrition, and confused about the distinction between correlation and causation.

Here is what I've learned in my years observing the extreme psychiatry of children:
* Do your homework. It is your job to learn what the treatment options are, and ask good questions.
* How much time would you invest in purchasing a car or real estate? Why would you spend less on finding life and family-saving care?
* Yes, some of the people you contact will be incompetent, inexperienced, and potentially damaging to your child. Just say no.
* Interview the clinician as a possible resource, not an authority figure who will cure your child, repair your psyche, and cure malaria.
* Family-based treatment is the gold standard for treatment of dependent children - it isn't about fixing you or blaming you or making your child behave - it is about keeping everyone on the same page, with the same goals. (Eating disorders hate that!)
* Prepare for hard work, careful observation, patience, and for the long haul.
* Meet with the clinician alone before bringing your child in, and every time you need to make sure the adults are sending the same message.
* When you've found the right fit: listen. Be humble. Learn. Dig deep. Isn't that what you want your child to do?
* Insight is a by-product of recovery, not the tool to get it. It is okay if your kid doesn't want to go, doesn't believe in it, doesn't believe it helps, doesn't understand the illness. Feed them anyway. Bring them to family therapy anyway. Say annoying things like "I love you" anyway.
* I'm sorry, but there is uncertainty and risk and not even the best clinician knows everything.
* You are still the parent, and your child's best ally. Trust your fiercest, bravest instincts.

December 27, 2006

"Feeling fat"

"I feel fat."
"You are trying to make me fat."
"You keep telling me I'm fine but I know the truth."

Sound familiar?

It sounds like vanity. But what if those feelings are as real to them as the shoes on your feet, the distance to the end of your fingers, your sense that there is a back to your head - even though you can't see it?

Not metaphor: physically real.

Eating disorder sufferers often have distorted senses of their "body schema" - which we conveniently confuse with vanity or an over-valuing of skinny media images. But what writes the map in our heads, and what distorts that image?

I believe these sensations and cognitions are as real as anything we feel. They cause the same suffering as it would if you or I woke up of a morning to discover our nose was ten times its original size and everyone denied that obvious truth.

A parent on the Maudsley Parents Forum recently reported of her daughter: "she won`t go out and she sits with her hands over her face constantly" because she was sure there was something wrong with her "perfectly normal" nose.

Among the interesting work on this body image mapping is the amazing book, "The Broken Mirror" and online information at BDDCentral.

The New York Times recently ran a piece "When the Brain Says, 'Don't Get Too Close'" with this interesting observation: "For example, when a person is threatened or anxious, body space expands in an effort to keep others away." and notes: " there is recent evidence that anorexia is partly a disorder of the body schema"

We call it "lack of insight" when we see a sufferer holding on to what seem to us to be false beliefs, and we try in vain to talk them out of it.

But perhaps the true lack of insight is ours: of how hard they are trying, of how heroic their work to recover really is.

December 25, 2006

Happy Chris-kwanz-annukah Birthday, Elijah!

My son is nine years old today!

Which reminds me of one of the coolest things about the Maudsley approach: including the siblings.

Research shows: "parents' efforts to look after well siblings in the context of illness are rarely considered in literature about sibling adaptation"

After all, most kids with eating disorders have siblings. They worry. They resent. Their lives are derailed by appointments and meals and driving to and fro. They don't get their parents' attention. They see their parents suffer. They get some of the stigma that attaches to the ill sibling. They are watched more anxiously than other kids when they eat - and don't eat.

In the Maudsley approach the siblings are part of therapy sessions. Their opinions are solicited. They are invited to ally with the sibling. They are part of the recovery.

Guilt, blame, and shame are discouraged. Loving, supporting, and listening are encouraged.

December 23, 2006

Bad questions, excellent answers

I've been a fan of Dr. Cynthia Bulik's work for some time. Her research rocks!

But after listening to this December 10 radio show, I now feel I must form a fan club.

I'm sorry to say the interviewer's questions were the worst ED interview questions I have ever heard. And I've heard some bad ones...

He wasn't just unprepared, he also didn't listen. I forgive him, because he was only asking the questions most people unfamiliar with EDs ask, but I still chafe at the emphasis on lowest weights, media pressures, and the word 'thin.'

If he said "painfully thin" once he said it 20 times.

My very wise daughter reminds me, whenever I am tempted to worry about someone based on the appearance of illness: "The pain is worst when you don't seem ill."

Yet Bulik made the questions work by resolutely sticking to new information people really need to hear and aren't getting a lot of. She did it with class and generosity. And I know she does a lot of these interviews. (I even had the honor of being interviewed with her last year on NPR - she was reasoned and informative, I sputtered.)

Michele Crisafulli, the college student from UNC Chapel Hill who was also interviewed with Bulik, was breathtakingly wise and unflappable. We're going to need another fan club for her. Listen for the way this very young woman refused to play the victim, and offered a view of recovery that was inspiring and insightful.

In her recommendations for parents, Bulik recommends something near and dear to my heart: the Academy For Eating Disorders' patient treatment bill of rights, Worldwide Charter for Action on Eating Disorders. I am proud to serve on an AED Patient/Carers Task Force which helped draft the Charter. In all my encounters with AED's leadership I have found that this organization of clinicians and researchers is working hard on finding answers.

The rest of us need to work on asking better questions!

December 21, 2006

Take the cannoli

I'm sitting in a New York City hotel room watching a Fred Astaire TV special right now. Fred was probably my first crush - all men since then have had to compete with my notion that true love meant you danced off in intuitive tandem from the first glance.

Beautiful people doing marvelous, joyful things. The question is: am I doing myself a damage watching this? Will it influence what I eat for breakfast today?

A study about gender differences related to eating and body image thinks it might.

"Eating in response to external cues rather than internal hunger signals is one of the first steps involved in the development of disordered eating, be it anorexia, bulimia or compulsive eating. Our commercial mass media are filled with such external cues. "

And another study examines the question of whether our genes make some of us more resilient to the cues and world around us.

Also on the environmental issue, is some interesting stuff about city living and bulimia - though teasing out cause and effect and other issues seems exhausting.

And in the environment question we must also consider comorbid illness, like bipolar. I am optimistic that as we get better measures of mental illnesses of all types we will also get a better handle on whether these illnesses trigger or exacerbate eating disorders.

So, I'm going to turn Fred off and go to breakfast. With this observation about beautiful people in 1958: they look like adults. They're slim, but they have the secondary sexual characteristics of adults. They don't look like they are stuck in permanent, painful, airless puberty. They look like they eat eggs and bacon for breakfast and then attack the day with gusto.

I'm off to do the same!

December 16, 2006

Easy cure for anorexia:

And here I was thinking the media was a bit toxic for those with eating disorders.

But there's good news! All the scientists studying eating disorders can now be fired. The treatment centers will close their doors. Therapists and psychiatrists will be on food stamps:

"Singer cures Anorexia"

I'm so relieved!

December 14, 2006

Blogs discussing EDs

Are you new to blogs? Think of blogs as a really good dinner party: you go around chatting, have some laughs, and pick up some tips and gossip. Some people you meet are interesting and interested enough that you arrange to meet again. Some people are good at introducing you to others you are likely to enjoy.

In the eating disorders world, most blogs are pro-ana. These are often heartbreakingly articulate, but universally lacking in genuine insight. They are sad, cutting, cruel places - mostly targeting themselves. Want to send these kids a donut and a hug.

But I'm glad to report the blogosphere has some rising stars talking sense and sensibility about eating disorders, too.

A blizzard of commentary, critique, kudos, and congratulations went out after Harriet Brown's moving New York Times piece describing her daughter's Maudsley refeeding. And Brown herself has a blog, "Love, Food, Money" which has an update on her daughter's health and a wonderful letter filled with insight by a sufferer.

I'm amazed and tickled by the testosterone-friendly blog, "Hungry for Hunger" by a husband whose wife is in treatment right now. Adding a little rage, raging insight, and no little alcohol to the ED world.

A mother of my acquaintance, if not my country, blogs about motherhood, religion, and eating disorders at "Marcella's Musings."

And not to forget the many good thinkers out there like Sandy Szwarc whose blog "Junkfood Science" is just the antidote we need out there to the bad science, fat-phobia, and dieting nonsense we live with. For families everywhere, I prescribe Szwarc's words daily, as needed.

Other blogs to watch: "Every woman has an eating disorder," and "Eating Politics," and for a blog that isn't about eating disorders but you wish it was: "Autism Vox."

December 12, 2006

College returns

T'is the season for college students to come home for their winter break.

For some families it will be the first time they realize their child has an eating disorder when they come home obsessed with feeding the family but eating little themselves, as discussed by the Menninger Clinic in a recent release. They're "just eating healthy" or "decided to become vegetarian." But the parental radar is on: something is wrong.

Other families will, after holding their breath for four months, find out whether their child has relapsed, or thrived, in the college atmosphere.

After semester finals comes the test scores that mean the most to mom and dad: "how are you, honey?"

For those who need a new plan, may I strongly suggest the list of providers at the Maudsley Parents web site. These are providers who coach families in surrounding the sufferer with loving, but very firm, support. The Maudsley approach is generally aimed at younger sufferers, but I find that clinicians open to Maudsley are less likely to shut the parents out even after 18.

For those continuing with school, a great piece in the New York Times talks about mental illnesses at college and offers a view into different ways to support a child who is away.

School is, as my husband likes to say, a luxury and not a right. College can wait, but getting and staying recovered is a required courseload. A chronic eating disorder does not taste better with a college degree, and noone needs a B.A. on their gravestone.

December 11, 2006

What's OUR excuse?

Eating disorders, like anorexia and bulimia and all their cousins, are biologically driven illnesses. They make sufferers have irrational and self-destructive thoughts.

But, what's OUR excuse?

The rest of us, the ones who supposedly are 'normal,' how do we explain the irrational, self-destructive behaviors and language we use?

We say to anorexic patients: "we don't want to make you fat, we just want you to be healthy!"

And they look at the television on any given night and see no one over a size 2, unless the person is a punchline.

They see the commercials for weight-loss where the "Before" pictures are just normal people. They see diet ads for children and get their BMI judged at school.

Our eating disordered children come to the Thanksgiving table and imbibe -along with the amount of turkey and stuffing we tell them is 'normal' - a steady rant by all the relatives about their diets and carbs and feeling like a pig and 'just this once.'

They stand in the grocery check-out and see the tabloids gleeful gossip about anorexic celebrities and it quickly drowns out our "no one cares about how skinny you are."

I know what sufferers have to do to get well: they have to be emotionally supported while they rebuild their bodies and their minds.

But I don't have a clue about how to knock any sense into the rest of us. Even though I don't believe our silly, irrational, self-loathing attitudes CAUSE eating disorders, I do think they make us look like hypocrites when we try to support loved ones with EDs.

December 6, 2006

It's all about control

You know, they say eating disorders are about control. Well, they're half right.

Everyone wants to control the conversation about eating disorders, certainly.

One of the symptoms of active anorexia and bulimia and BED is a dysfunctional obsession with control.

Not surprisingly, the ED world is also pretty focused on control as well: we all have our turf to protect, our investment in our preferred approach, our regrets to justify, and our frustrations to appease. And like kindergartners, sometimes we don't play nicely with one another.

I guess that's natural for a topic about which there is so little scientific clarity and so much need. We are an anxious polity - sufferers, caregivers, clinicians, payers, scientists, and the curious public. For lack of real data we make do with trading accusations. Kind of like nervous dogs in confinement, we become 'fear biters.'

Why can't we all just get along? Well, because we disagree. Many of the treatments out there truly are damaging. Many of the theories out there contradict each other. Many families simply give up when they consult three clinicians and get three mutually exclusive opinions and treatment plans.

Disagreement can be productive, but only if there is conversation. I don't see much of that out there. I see individual researchers doing their own thing (the nature of research). I see clinicians who don't read the science that is out there. I see clinics developing their own methods in isolation. Insurance companies pay for treatments without good research and don't pay for effective ones. I see journalists quoting the furthest poles of disagreement without commentary. I see writers, like me, peddling points of view. And I see parents simply overwhelmed and confused and seeking a direction - any direction.

How on earth can parents and loved ones make sense of it all?

Here's my dream: I want to put all the coolest researchers, the most innovative clinic directors, the most thoughtful health journalists, a panel of insurance people, some savvy top legislators, and a committee of fierce patients and caregivers in a small room for a week or two. Not let them out until they put every theory and bit of knowledge on the table and thrash it out. I want them to come out of that room with a document which outlines the state of the art, science, and action for a new era in eating disorder treatment. An ED Dream Team...

Is that so much to ask? Come on - we'll do it around my dining room table. Kaye and Bulik and Nunn and Lask and O'Toole and Treasure and Sodersten and Wisniewski and Boswell and le Grange and Lock and Zucker and Herrin and Hodges and Vandereyken and the whole gang! We'll have neighbors drop off casseroles and order in from Dominoes. My mother-in-law will make kugel. Everyone can bring their sleeping bags and we'll burn everyone's copies of The Golden Cage and the DSM-IV in the fireplace for warmth. It'll be fun.

Or maybe that's too controlling?

December 3, 2006

Why cause matters - nature and nurture

It gives me fits when people profess not to care about the cause of eating disorders. Or, in what I see as a weasel defense, people say "eating disorders are caused by a combination of factors" but then go on to tell you which one they think it really is. Even the Maudsley literature is "agnostic."

But cause does matter. Treatment is determined by what you think the cause is, or isn't. And we all know it. That is why Dr. Insel, head of NIMH, lamented in September that what ED treatment you get has more to do with who you consult than the nature of your own disease.

And yes, I believe in what Dr. Cynthia Bulik says about this: it isn't nature VERSUS nurture, it is nature AND nurture. But people use that wiggle space to insert their proportions to that and to put in a whole lot of stuff in the environment category that just doesn't belong there.

Environment is nutrition, prenatal exposures, diseases, co-morbid psychiatric conditions, stress - as well as a ridiculous media, overanxious moms, abuse, misogyny, and social ills. Saying 'environment' is so broad we can drive a truck of donuts through it. Or rice cakes.

Whether EDs are a choice or a tendency or a set of traits or a discrete biologically determined illness matters to your insurance agency as well. And at $1K+ a day for whole-hog (sorry!) treatment you better bet it matters to families what insurance pays for.

People have a lot of investments, literally, in what they believe causes EDs.

If you know me, you know I lean toward a 90/10 ratio of biology/environment. And the environment, in this case, is the avalanche of support for dieting. I flip the ratio when it comes to treatment, strangely enough: I think 10% of recovery is the full nutrition part and 90% is maintaining and reinforcing an environment which is emotionally supportive, firm against the disease, and teaches skills to prevent relapse. Both factors are necessary, but not sufficient, on their own.

That environmental 90% requires enormous and unyielding resources from everyone involved. Although there are families who can do it all on their own - they shouldn't have to. Insurance should, in the interests of long-term health AND their own balance sheet, fully cover therapy and nutritionist support and psychiatric services and inpatient treatment and hospitalization for AS LONG AS IT TAKES. Just as they would for a tumor, kidney disease, or asthma.

Families have taken on the insurance industry successfully on treatment, like the Westin family in Minnesota, but they LOST their daughter first. Some families in New Jersey are banding together to get full coverage for EDs and taking on the term "biologically based," as are others. The Eating Disorders Coalition and the National Eating Disorders Association are also fighting for legislation that will move mental health parity forward.

Cause matters. Ask your providers where they stand.