November 30, 2010

Uh oh: they've read my mind and they're telling everyone...

It's awful when you recognize yourself in a 100 things list: Dopamine Makes You Addicted To Seeking Information

Feels cheap, really. But oddly comforting.

P.S. lots of other good stuff in that list.

Sitophobia

How is it even possible that I've never heard this word before? So useful.

Sitophobia : An exaggerated or irrational fear of food.

As a ophidiophobe (fear of snakes), I can certainly convince myself that my aversion is semi-rational. Heck, this fear is so common that they even provide creepy music on the soundtrack whenever there's a snake on screen. But my fear isn't just about actual snakes it is even to the thought of snakes. It is to thinking about thinking about snakes. That snake SOUNDTRACK can unsettle me for hours. I'm having trouble even talking about this, actually.

Food fears, though, have become pretty normalized. Some of it is just talk, even social preening, but there is a genuine social movement to fear fats and carbs and certain kinds of fats and "additives." This makes it hard for families to know when that sitophobia is a creepy soundtrack of creeping mental illness.

I'd embrace a cobra for my kids. Might take some training and would certainly take a lot of support, but I'd do it. We're asking no less of sitophobics.


November 29, 2010

Who’s not in the Calendar

I love my body, too, but I won't be getting naked on a horse.

I'm tickled for these bloggers, happy for the National Eating Disorders Association, and flattered to be invited, but I'm just not that kind of blogger.

Listen: I am an infamous prude, so I don't show my birthday suit to the world anyway, but here's the thing. The body dysmorphia and body image distress of eating disorders are not a failure to love one's body enough. Those are brain-based issues that seize upon social values. Eating disorder awareness should not be about the garden variety body image distress of the rest of the world and in fact if we don't start distinguishing them we are likely to really misunderstand the genuine anguish and torture of this brain disorder - that really isn't about appearance. That's like confusing the hurried rush to vacuum before guests arrive with a handwashing OCD. Or painting Happy Faces on the mirrors of suicidal depression patients.

But, really, thank you for asking. You are very caring and very good sports with nothing to hide!

We treat older patients

Bringing back something from yesterday's post, and reframing the illness.

"We treat adults" A lot of the resources of eating disorder treatment are going to adult patients - often with intractable illness. Much of the literature and research and public attention is to adult patients who have been ill longer, have suffered more complications, have worse support systems, and spent years studying their illness and theories and approaches. I am seeing more than ever lately how this biases what the eating disorder world thinks eating disorders really are.

To me this is like oncology being the study of cases that have metastasized.

Eating disorders generally appear in childhood or adolescence. They may be sub-clinical and they are often undetected, but that's when they start. That is when treatment should begin. The illness as seen in adults could be, and I would argue SHOULD be, regarded as complicated by failed treatment or failure to intervene. When the illness has time to take hold, change personality, alter personal history, ravage relationships, it is not the original illness any more.

What's more, a person who grows up marinating in the brain state of an eating disorder may even get BENEFITS from being ill that complicate recovery. Think of the parade of celebrities and athletes who later reveal eating disorders and how their behaviors or symptoms made them thin, driven, focused. Because eating disorders hijack one part of the brain and leave others intact, like intellect, people can be very successful in many fields and financially independent. The only reason they even get the opportunity to be on the podium being listened to on the topic is the success that their illness made possible.

Meanwhile, we mistake the misery and disconnect and medical risk as inherent to the illness. We need to acknowledge that adult patients are not different from pediatric patients in the core illness but because they've been ill longer and we now have less ability to intervene. Let's begin to define the illness as it present in children and adolescents and the rest as our failure to intervene early enough, and well enough.

Early intervention is the best bet we've got, and an opportunity we routinely fail as a society. Of course we need to treat older patients, but the best way to do so would be to keep younger patients from staying ill. I would like this to be the last generation where there ARE so many adult patients.

November 28, 2010

More on leading questions

Cathy posed the following in the VERY interesting comments section of my recent post on Leading Questions:

"It IS a good discussion point Laura... Another thing that I would be interested to hear a debate around is the following question:

If there was not so much emphasis on the theory that the psychopathology of Eating Disorders, and especially Anorexia Nervosa, develop as a consequence of body dissatisfaction or 'body image' disturbance, would we even attribute the behaviours of an individual with Anorexia Nervosa to a disorder of body image?

The reason I ask this (and would be interested to hear others' responses, is that I wonder whether any child who develops AN really understands why? I didn't know why I felt compelled to restrict food and over-exercise in a very rigid manner as an 11 year old. Interestingly no-one suggested body dissatisfaction to me or body image disturbance when I was an anorexic child. It was not until I was in my late 20s that anyone ever suggested that I had AN because I didn't like my body. To me, AN was just another obsessive-compulsive behaviour, like my previous OCD behaviours.

So the main question is:

Do clinicians, the media etc. put an idea into a child's mind (who aleady has AN) that their AN is a disorder of 'body image' - such that they believe this to be true?

How would you feel about raising this as a new discussion point"


For my part, I think mental illness takes the form of the sociocultural backdrop of the time. AN presented as an ascetic and religious thinking in earlier history, as Freudian in another, and now predominantly in a fat-phobic way. The core illness, though, strikes me as remarkably stable: avoiding normal consumption. I believe the core illness is nutrition avoidant and that malnourishment is a far more comfortable state for certain people. An altered consciousness that is mistaken for a choice and not understood as a very dangerous state. We get that with drugs, but not with malnourishment - by which I mean both anorexia and bulimia and probably all eating disorders.

And yes, I do think the fat phobia of these disorders is partially "suggested" and absolutely maintained by a rather narrow modern idea of eating disorder pathology.


Thoughts?

definitions: core illness, or the complications?

So many "buts."

"But our patients are more ill."
"I see older patients."
"So many have been traumatized."
"It's a very complicated illness"

I think it is time to re-frame eating disorders. Let's separate the illness - a temporary brain condition - with the consequences of failed treatment.

I'd like us to look at an eating disorder as a problem that happens to certain people under certain circumstances and is, in itself, quite treatable. This problem we're talking about presents very much the same way in most patients: a drive to treat food in a disordered way, a distorted relationship with one's body and feelings, a distorted relationship with others, and certain fixed beliefs around food and the body.

The problem I'm describing is treatable. If caught early and brain restored and behaviors normalized the symptoms abate and can be addressed in a rational way.

The rest are complications:
  • Pre-existing or co-morbid mood or personality disorders
  • Traumatic events 
  • An environment - social or personal - that complicates efforts toward recovery
  • The medical consequences of restricting, binging, and compensatory behaviors
  • The traumatic effects of treatment
  • The traumatic effects of one's illness on one's family and friends
  • The consequences of the illness on one's development and life 
The first two require intervention even without an eating disorder, period. The rest are dependent on how well others respond to the illness - personally and professionally.

Why separate the illness from the complications? Primarily because this confusion has led to generations of misunderstanding the illness itself, but also because it is the complications that are unique to each patient. The illness doesn't change much person to person, but the effects and RESOURCES do. No two patients have the same resources or complications.

Separating the core illness means truly individualizing treatment.

If we saw each new patient and their family with a clean slate - and with optimism - with a pretty simple if dangerous illness - that's a start. From there we build resources and skills to fight the illness. If, along the way, there are complications revealed, we deal with them. That is a very different stance, I know. But I'm more and more confident that most cases of eating disorders could, if identified early and treated for what they are, be approached in a way that prevents most of the complications that we now tend to think of as the core illness - and offers the person with the illness help for real issues that need addressing in order for that person to live a satisfying life, even without an eating disorder to complicate the picture.

Hindsight

We woke up this morning to find our car doors ajar. Change drawer overturned, glove box open.

Creepy. Of course, we should not have left the cars unlocked. That was DUMB. We'd been warned, as this has become more and more common in our little town. We just got lazy. Well, THAT won't happen again.

I've mentioned the Stinkbugs. But this is worse.

November 27, 2010

This stocking stuffer has a message!

My friend, Jenni Schaefer, got so many requests for her famous "Recovered." t-shirt that she is now offering them for sale at her website Goodbye Ed - as well as other items.

Nice stocking stuffer!

National Survey Shows Dramatic Increase in Awareness of Eating Disorders

NEDA's National Survey Shows Dramatic Increase in Awareness of Eating Disorders offers some interesting information for us all to be looking at.

In particular, I think we have to face the fact that the first port of call for many families - ours included - was the family doctor. And, as is often the case, that is where we first got the wrong messages. We had NO reason to wonder if what we were hearing was suspect: "she needs more salt" and "isn't in danger." That was a critical moment and it could have been a pivotal one in a very positive way if we'd heard: "she may have a very serious brain disorder, you need to seek specialist care immediately, her chances of recovery are high if you act now." Oh, and "you are about to embark on the most difficult but important challenge of your lives so far."

The part of the survey that genuinely shocked me was the percentage of people who report knowing about Family-Based Maudsley Treatment. 33%? Really?

I'm guessing that when the general public is asked about something that sounds a lot like "family therapy" they assume they do know what it is. This probably also goes for those primary care physicians mentioned above, and this matters: without leads to how to access FBT, many families end up in "family therapy" that doesn't resemble FBT/Maudsley at all.

November 26, 2010

Leading questions and Heisenberg's Observer Effect

I got an upset phone call recently from a parent whose very young daughter was given a survey to fill out six months after treatment. The mom, whose family had been fully included in treatment and whose daughter was doing well, was happy to comply: thinking the tone and content would be aligned with the treatment. But after giving permission, and while watching her daughter fill it out, the mom was alarmed by the content of the questions. I recognize the questions as being from the EDE-Q, a very common questionnaire used to assess a patient's psychological eating disorder symptoms. Among the questions:

On how many of the past 28 days...
2. Have you gone for long periods of time (8 waking hours or more) without eating anything in order to influence your shape or weight?
3. Have you tried to exclude from your diet any food that you like in order to influence your shape or weight (whether or not you have succeeded)?
5. Have you had a definite desire to have an empty stomach with aim of influencing your shape or weight?
6. Have you had a definite desire to have a totally flat stomach?
11. Have you felt fat?
16. Over the past 28 days, how many times have you made yourself sick (vomit) as a means of controlling your shape or weight?
17. Over the past 28 days, how many times have you taken laxatives as a means of controlling your shape or weight?
22. Has your weight influenced how you think about (judge)yourself as a person?
23. Has your shape influenced how you think about (judge) yourself as a person?

The mother's concern about how a young adolescent might interpret these questions are ones I discussed in my book and have continued to worry about. I’ve heard this concern from other families as well over the years. For some young people these questions are the first time they'll learn that people go for long periods without eating, use laxatives or exercise to purge calories. It is a validation of the idea that associating weight with social judgment has to do with these symptoms and why their frightened parents are bringing them to the clinic. The barrage of pointed questions on these topics sends a lot of messages. Being an egosyntonic brain state, as well as one with ascetic moral values there is also the certainty that some patients look at these questions as a measure of just how well they are performing their goals in reducing weight. There is a context to the questioning, and implied judgments and of course the person answering the questions has some sense that parents and clinicians may respond to the "wrong" answers.

I went to some friends in the business to ask their thoughts and they helpfully divided the issues into two parts - all acknowledging that this is an issue that they've considered before. One said of the EDE-Q in particular: "I have also been concerned about the wording in it since 1999 when I was first introduced." another asked: "I am not sure how you identify risk if you don't ask the questions."

Here are the concerns:
"1. skewing results using leading questions
2. inserting dangerous ideas into children's heads."

On number one, all three friends said that in practice they do adapt the questions to the situation. For example, one said "For instance, I never ask a young child "do you vomit?"--it's too scary and pejorative sounding. I ask "have you ever been so upset by what you have eaten that it comes back up?" All three said they think age-appropriateness needs to be part of cliical judgement, as well as the patient's background.

On number two the responses of the three clinicians were different than from parents.

One therapist said "I guess I am of two minds about this. Certainly and most importantly, none of us would want to do harm. I do wonder that if a questionnaire item alone were to upset a child or give the child ideas, then that is a very high risk child and should be identified ASAP."

One was particularly sharp: "it never ceases to amaze me that parents who will let their kids watch CSI will worry about their child "catching" behavior or "imitating behavior" from a discussion of eating disordered behavior--in any setting."

For what it is worth, I do worry about how information is gathered. I think the content of most eating disorder questionaires does have an observer effect, and the more so when the child is young or the patient has not been exposed to a lot of messages about eating disorders - especially the older theories. The kids getting these questions are indeed the ones at high risk - that's why they are being asked.

While you can't catch an eating disorder because of suggestion you can be exposed to behaviors - like dieting and purging - that are particularly attractive outlets for someone who is predisposed.

And I think that no matter how well-validated the measure is, it will have to change as treatment changes over time. I know that messes with the numbers. But if it affects the prognosis of the patient then: tough.

Here's my experience with this. Years ago my family showed up at a major university-based eating disorder clinic for a full-day evaluation. Our home team wasn't making progress and we were scared. As we were waiting for our appointment we were handed clipboards, my daughter and I, and asked if we would participate in a study. Being a science supporter and not knowing better - and of course trying to be a good patient's mother - I said yes. It was the EDE-Q or something quite similar. Knowing what I know now, I would say no. I'm big on research, but the data that mattered at that point was my daughter's recovery - and I can't be confident that those questions have no effect. I'd be interested in more thoughts on this.

November 23, 2010

Relapse prevention

I'm so excited about a new tool just posted to the F.E.A.S.T. site: Relapse Prevention Contract by Advisor Dr. Stephanie Milstein. I've watched too many families over the years do the heroic work of getting a loved one recovered and then things going downhill during transition to college, living away from home, or moving away from the home community. ED likes to use these times to find cracks to crawl back in, and I believe the best way to prevent that is with a clear plan - no tiptoeing around or shyness.

The contract is wonderful because it can be adapted by the patient and treatment team and family to set up goals, expectations, tools, and monitoring. Keeping everyone 'on the same page' LITERALLY, as a patient moves forward into healthy life!

Canadian eating disorder charity donation through Facebook challenge

Elise, a volunteer for the Looking Glass Foundation in Canada is putting out the word on a Pepsi grant possibility. With enough votes, Pepsi will donate $5000 to The Looking Glass Foundation.

"This link will take you to the PepsiCanada On-Campus Facebook Gallery. You must click "allow", and then click to "like" Pepsi. http://apps.facebook.com/oncampus/view.php?e=134 Vote for Elise Slaughter's Looking Glass Foundation photo.

Any with Facebook can vote, and they can vote once per day, every single day until December 10th. This is a very realistic goal, and I greatly appreciate you taking the time to read this letter. I realize you do not advertise on your website or blog, and my goal is not to advertise for PepsiCanada. I am trying to use any means necessary to help those struggling in Canada."

Note: PepsiCanada will ask for access to your Facebook profile to allow you to vote.

November 22, 2010

Chromosome 13

Thirteen has always been my lucky number. Such a contrarian.

So, why didn't I get all excited about the recent study about genetics and anorexia? I've been asking myself this question, too.

Yes, I'm happy. It is good to get to the root of what might be predisposing people to this terrible illness. Insight into genetics will help us both figure out treatments and lift off some of the mystery. Anorexia has the opportunity to join other serious mental illnesses instead of existing in a separate world of self-satisfied conjecture.

But I've been at this for eight years and this kind of new insight has a recognizable pattern: breathless media coverage, a new slide on some PowerPoints, occasional mention from the podium at events.

2002, 2005, 2007, 2009

But in the exam room, the media, the advocacy world: not much change. Clinicians outside the field aren't aware of this kind of research because it doesn't come with usable recommendations. Clinicians inside the field are rarely trained in research methodology and often misunderstand the implications - in this case because of a mistaken idea that genetics is destiny or thinking it doesn't relate to what they are doing with patients and their families. The media isn't really changing its narrative and neither is Aunt Freda.

Lately I've learned just how little the ideas of "evidence-based" and genetics and biology penetrate practice. In fact, I'm coming to understand better why these very words turn people AWAY from learning more or using this information. I find myself wondering "what would it take?"

What would it take to really change people's views on genetics, for example? On brain function? Is it the volume or the quality or the reputation of the researchers that will make this information important in actual practice? People like me are always looking for information like this - it confirms what I already understand and believe. People who are automatically skeptical on these topics might not feel a need to re-think until and unless someone finds a test strip that changes color or a brain scan with measurable shapes.

The point of establishing anorexia as a genetic predisposition isn't to develop a pill or throw away the other things we know. It is to STOP seeing the illness as willful, conscious, and incurable. It is is see it for what it is - and let go of what it is not. But I still don't know how THAT message will make it to the people who need it: people treating our kids every day.

November 21, 2010

distance aftercare program for treatment of eating disorders - what do you think?

Very few people whose children develop an eating disorder happen to live next door to a specialty ED clinic. Even for those who do, finding the best fit for treatment may not be a matter of proximity.

I believe the new technologies will change the way people seek care and end up changing what is offered. If distance is no longer the deciding factor then quality, fit, and services may become more important.

The Kartini Clinic to pilot distance aftercare asks the public for suggestions and questions on this topic.

November 20, 2010

Insulating our thinking on anorexia nervosa

Toward a unified theory of the cause of anorexia nervosa: Anorexia nervosa and the insula

camtivists or activain?

When I spoke in London earlier this year I got a very polite but firm request that I not use the word activism in my bio, and I was surprised. Since then my friends Fiona and Charlotte have been tutoring me on terminology as we have tried to find words we could all agree on. "Activism and empowerment - very scary words to us Brits," said Charlotte.

Fiona wrote a really good blog on this last month called Am I an activist?

So when these wise women call themselves activists they're actually being far braver than I am, raised by activists who might even be called radicals.She said "Activists have dreadlocks, beards and dirty black tee-shirts with the "Campaign for Nuclear Disarmament" across the front." To which I have to confess that I was arrested at 17 for protesting a nuclear submarine... but I don't have dreadlocks and I do shave -- my legs. I've never chained myself to anything. I come from the Ghandi, MLK school of activism: the nonviolent, teach-in, daisies in the gunbore school. These days my activism is done by keyboard and when in person I try to wear clean clothes.

Some of this is language, I know, but some is cultural temperament. Charlotte cracked me up with the lengths to which her countrymen will avoid confrontation, pointing me to this:

"A peculiarly British indirect technique is to use hesitation devices, and to avoid showing certainty. British comedian John Cleese memorably demonstrated a British and American having dinner in a restaurant. The American was direct:
Can you pass the salt, please?
The British speaker used hesitation:
Could you … um … er … pass the … um … thank you.
(The listener had guessed his requirement long before he finished the sentence.) This particular technique is (a) unteachable and (b) undesirable to teach."
(http://www.jalt-publications.org/tlt/articles/2004/07/viney)

So, a guest blog from Charlotte is in order, thank you, Charlotte!
Campaigning for activism

Never did the "Two nations divided by a common language" quote become more apparent to me than my recent conversation with Laura about activism.  Over her side of the pond, activism is seen as "encouragement of evangelism (the act of sharing one's beliefs) -- in organized missionary work or by personal encounters and relationships with others", whereas here in the little old UK, activism is more "a policy of taking direct and militant action to achieve a political or social goal".

Here, we campaign as in "An operation or series of operations energetically pursued to accomplish a purpose".  Laura is uncomfortable as her definition runs closer to "A series of military operations undertaken to achieve a large-scale objective during a war".

So should we become camtivists or should we activain?

November 19, 2010

Eating disorder and no insurance? EDC has your back!

Having the Eating Disorder Coalition in DC is like having a friend in Congress. Their long-standing and deep knowledge of how legislation works, their relationships with decision-makers, and their commitment to helping eating disorder patients is unique and unparalleled. Congress isn't a place you show up at with a cause and get results: it takes commitment and experience and patience and people skills.

Thank you, EDC, for what you are doing for American families affected by eating disorders!

Eating Disorders Coalition News and Information: Great News for People w/ED but w/No Insurance!

Did I cause my child's eating disorder?

I try to imagine how different my family's experience would have been from the beginning if I had found this:

Did I cause my child's eating disorder?

Instead of this:






 I hope, soon, the former will be the norm, and the latter will fade away.

November 18, 2010

Big, fat parallels

Stories like Epilepsy’s Big, Fat Miracle are manna for people like me. The cool science, the paradigm fights, the activist parents, the amazing clinicians and researchers willing to swim upstream for the sake of patients. Not to mention the "food is medicine for the brain" angle!

And the hope: patients who get better.

Enjoy!!

Well fed, tweeted, and only a little poorer

Observations from Renfrew conference:
  • Who knew? Best Food At An Eating Disorder Conference: Renfrew Foundation, no contest
  • Honored: our presentation was live-Tweeted by Nancy Matsumoto in the second row.
  • Physics of sound: How could the quietest night I've ever spent in a hotel be at an airport?
  • No joke: I've never heard so much laughter at any conference. With, not at, by the way.
  • Dress code: Elegant, draping, black.
  • Seating plan error: who seated me at Speaker's Dinner with Craig Johnson, Amy Baker Dennis, Judy Banker, Michael Levine, Cindy Bulik, Michael Strober, and Leigh Cohn? Like the front row at the Oscars! Some administrative assistant may lose their job, though, so I owe them.
  • The answer I failed to give: "Parents don't need to be liked. They need their kids to get better."
  • The slide that caused the most conversation:

  • Ethics are expensive: Had to turn down free beer AND dinner because F.E.A.S.T. doesn't accept contributions from treatment providers - even friends. But THANK YOU, anyway!
  • Could someone please go back in time and tell little feminist warrior Laura that some day she'll be on the same program (different day, page, and font) as Gloria Steinem? She'll faint. Her big hair will break the fall.
  • The best moment: When the first male eating disorder professional to "come out" to colleagues as a former sufferer described the experience, only an hour later, at dinner. Yes, the first. Appropriate for a feminist event, no?
  • Amusement for everyone on I-95 Sunday morning: a middle-aged broad ruining her car speakers and going hoarse with very loud and often very bad music all the way home.
  • Waiting at home: my adorable daughter home for the weekend to hang out with her little brother while both parents out of town. We watched really bad romantic comedies and gabbed all the way through them. Said little brother ignored us. Good times!

November 17, 2010

It's Evolution NOT a Revolution!

My dear friend, Kathleen, made an important observation in the comments of my Renfrew post:

...People can get nervous about new ideas/research related to ED because it's "new". I have noticed that people are afraid of change (even if the change will benefit all those affected by ED (including care-givers) in a positive way) because they are afraid the change will shift the entire field and negate already existing "what works".

People need to become comfortable knowing that: change can be good, and change does not delete all that we already know. ie: Some research applies to some who suffer, some insurance procedures apply to some who suffer, some methods of treatment apply to some who suffer ---but in those 3 (and many more), not all apply to all who suffer.

The more people relax into knowing that something 'new' does not mean 'the entire field is changing', the more comfortable they can be about learning about the 'new'...like Maudsley.

I hope that makes sense.."

Yes, Kathleen! That doesn't just make sense it is spot on. I believe people have felt defensive on many levels but I think you've identified the most relevant one. This is not about overturning everything, "throwing the bums out," heads on spikes. This is about re-thinking some things and, yes, throwing SOME things out.

We do need to throw out anything that blames patients.The newer knowledge of how much of these symptoms are hard-wired and how very challenging they are to fight means we need to help and admire patients - not hold them responsible for finding their way out.

We do need to stop thinking "once ill always ill." Eating disorders are treatable and we must stop acting as if it is the patient's responsibility and not OURS to support them ALL the way to full lives.

We do need to actively include and empower and support families as a way to get patients well. That may be messy, it may be imperfect, but it is the best shot we have at the time we most need to intervene.

We do need to re-think whether eating disorders have some deeper meaning or come from some great outside influence. Sometimes a cigar is just a cigar. Sometimes an eating disorder is just a temporary brain problem.

I think the above, if we could agree on them, still leaves most of the common ground we all share. It still leaves most of the techniques and skills of psychotherapy as well as the established community of caring treatment providers. We ALL want the patients to find wellness and fulfilling lives. We ALL want the professionals who treat these illnesses to do their work according to their unique skills and talents. We ALL want society to be less toxic and more nurturing. We ALL want families to be healthy and well-functioning. We ALL want healthcare and mental health care to be accessible and humane. We ALL want patients to be treated with dignity and caring. We ALL want the stigma to fade, and the field to be respected.

Another dear friend, Mary Beth, said this morning as she has wisely said to me before, "it's evolution NOT a revolution." She's right. I do wish it was a light switch, of course, but she's right.

(A new friend, Ann, gave me the ideal visual on trying to adjust to new paradigms.)

November 16, 2010

Wired to seek pain, and relief, in all the wrong places

Although How Pain Can Make You Feel Better may have one of the most useless closing lines in science journalism history it does offer a darn readable exploration of the current thinking on self-harm.

I, like most people, had enormous squeamishness about self-injury when I first learned about it years ago. I absolutely loathe the Hollywood depictions of it as a great punishment to the world and sign of victimhood. Now that I've come to understand it better I feel great empathy and hope for those experiencing it.

SI is treatable and no one should suffer alone with it or be shamed or avoided. Pain, regardless of cause, is pain - and we need to work with loved ones to resolve it.

The better we understand the way we're wired, and the ways we can help, the more misery we can alleviate.

November 15, 2010

Face time

No hyperbole: I had an amazing time at the Renfrew conference. This may seem obvious and I don't want to lapse into any fluffy bunnies and butterflies here, but it's all about relationships. (Duh.)

I have said pretty much the same thing over and over for eight years**. So much so that I'm tired of hearing it. I've said these things in any way available: mostly written - in a book, articles, blog posts, web sites, online forums. I've given presentations, pretty much to anyone who would have me. I've volunteered and shown up and gotten involved. But I underestimated something critical: this is a field that centers on psychotherapists and psychotherapists are 'people people,' obviously. The tools of the trade, the power of the work, things that bring someone TO the field are interpersonal, intuitive, and deeply personal. That's why we NEED and value therapists and why we should get on  knees in gratitude that they do what they do - since most of us just don't have that skill set - I don't! Yet what makes therapists good at what they do also makes it very difficult to suggest they change for reasons like "data."

"You're not like I thought." I heard this in various versions this weekend. Mind you, some of these are people I've been seeing a few times a year for years. But this time I was on their turf.

The same went for what I was saying. It turns out that many people had formed opinions on me and on my views about parents and about the Maudsley approach that simply weren't true. Few of them had read anything I'd written. Very few of those in the ED leadership have, of course. Many, no, almost all opinions on Maudsley came from people who hadn't had any training in it. When they actually heard directly from me, in person, stuff I've said all along - they were surprised and interested.

A few people said they were now going to go get real Maudsley training. Some said they were going to re-think some of the things they say to families and some of their website content. That is all I want.

One gentleman said he found me rigid and extreme in my attitudes before, but sitting at dinner what I was saying didn't sound so fanatical. I think this is because the tool of MY trade, words, have to stand alone. People have to come to you, and want to. But in this world, without actual relationships and face to face trust, words are insufficient and won't do on their own.

It has taken a lot of work and time to get the opportunity, and the mutual trust, to have these conversations. I've thought of giving up in anger and frustration and burnout more than once. But this weekend was both humbling and a huge honor. I was moved by the sincerity and warmth and, yes, openness, that I encountered.

I want to give my greatest thanks, however, to my co-presenter, Dr. Judith Banker. How kind of her to invite me, and how generous of her to spend the time she did not just working on the details but talking about the ways we all think and speak and feel about this. I learned more from her these past few months about the realities of our mutual interests than in a long time before. Things are changing, and to the good, and Judy has my admiration and gratitude.


**Parents don't cause eating disorders
**Parents can be an important part of treatment

November 13, 2010

Apples don't fall far from the tree

I am in Philadelphia today to do a seminar on the Principles of the Family-Based Maudsley Treatment. In preparation, I've been talking a lot to people about how to present these ideas without causing quite as much resistance. In many ways, we're talking about "One More Bite" of a medicine that isn't welcomed by people who often don't see a use for taking.

My toolbox for persuasion on this has mostly been "evidence." But that doesn't always work well. I've been trying to get past my frustration with that, and found Apples don't fall far from the tree  very helpful.

I haven't worked out how to be more effective, or if it is possible, but this trip to talk primarily with therapists is a good chance to try.

November 12, 2010

Is calling an eating disorder a brain problem a problem?

Personally, my reason for using the term "brain disorders" is not political, strategic, or contrarian.
I use the term because the leading experts have acknowledged it as true. If the truth isn't comfortable for people, yet,  it doesn't make it less important to state.

Eating disorders may turn out to be caused by any number of things - no one really knows - but we do know where the problem is: the brain. This is misunderstood by some to mean that it can only be treated with a pill, or that it can't be treated, or that environment doesn't matter. This is a misunderstanding of the TERM, certainly, but not a reason to stop using it. The brain interacts with the environment: it acts on the world around it and is affected by the world around it. Thoughts change the brain and the brain's function and chemistry changes thoughts - and emotions.

I'm so grateful for the generosity of the head of the NIMH for clarifying this issue a bit in a letter to a parent (and volunteer for AED and F.E.A.S.T.): Dr Insel addresses the "brain disorder" term.

The battle over this term isn't just about stigma. It is about how much of this illness comes from social and personal environment and how much is not. I happen to think social and personal environment have a pretty small part to play in causing the illness but a significant one in supporting recovery. Others think if we changed society and relationships that would prevent eating disorders. That's an active debate we should be having.

But the debate ought not be about where the problem is. The problem is in the brain.

November 11, 2010

Melting the ice with Cindy!

I'm looking forward to seeing and hearing Cindy Bulik at the Renfrew Conference tomorrow. Will she bring her skates?

November 10, 2010

Your parents started fighting over you before you were even born!

It's not nature vs. nurture or even nature and nurture: it's more complicated than that. And why shouldn't it be? You may not expect this from such a deterministic mechanistic thinker like me, but how could the mechanisms of life be anything BUT complex and random and magic and filled with mystery and serindipity:

Epigenetics Seeks Clues to Mental Illness in Genes’ Life Story

November 9, 2010

Baltimore medication research trial

Another treatment research trial under way:

"Johns Hopkins researchers are conducting a placebo-controlled trial to examine the effectiveness of a research medication in the treatment of adults with anorexia nervosa. Participants will be offered 16 weeks of medication (active or inactive) and weekly outpatient medical monitoring by a psychiatrist. The treatment will be provided at no cost. To participate, you must 1) have anorexia nervosa, 2) be 18-55 years old 3) be medically stable for outpatient treatment 4) complete assessments (interviews, questionnaires, and medical evaluations) at intervals throughout the 16-week study and at 1- and 2-month follow-ups. All information gathered will remain confidential.
For more information call Linda Ryan at(410)-955-3863 or email at lryan@jhmi.edu

Angela Guarda M.D. IRB application: NA_00032632 http://www.hopkinsmedicine.org/psychiatry/specialty_areas/eating_disorders/

The basket hold and refeeding

So much of what parents talk about in the later phases of re-feeding and the recovery process for eating disorders involves undoing the odd things we had to DO during the early phases. There are rituals and odd boundaries and interventions that are necessary during the initiation of re-feeding that are not only unnecessary later but must be unlearned.

I thought about this as I read The Basket Hold and Other Things Learnt That Need Unlearning by one of my favorite bloggers, autismvox.

After the crisis we also take on the task of working through 'unintended consequences.' So many of the critiques of treatment approaches are about this dynamic: "Well, you can't feed her when she's in college" or "a meal plan isn't going to work forever..." This also goes for the medical interventions like naso-gastric tube feeding and anti-psychotic drugs that are sometimes necessary to get from one place to the next in recovery. But these are akin to the plaster cast over a broken bone that causes itching and atrophied muscles - not a mask over the real problem.

Let's not confuse short-term necessities with permanent concessions. Nor should we flinch from or dismiss the unintended but unavoidable complications. We often worry more about the intervention's effects than the failure to take effective action. We're afraid to do what may be necessary to stop the damage and get going toward safety. This is not to advocate any particular "basket hold" but to say that I see far more damage and regret from failure to act than anything. Delay is damage. Under-responding is damage.

Reserve time to undo and heal and unlearn what had to be done, but still: do what needs to be done.

November 7, 2010

Consider the source

One of the women I most admire in the world once leaned forward meaningfully during my rant about a silly person and said "consider the source." It is advice I too often fail to heed.

Eating disorders in the media is a good reminder of this principle. Especially in the world of Google search and keyword searches and - ahem - bloggers, it is too easy to confuse having a voice and needing to be heard. I get indignant over headlines that I know people are going to read over and over, celebrities with Oprah-level coverage but no clue, low level academic "journal" pieces that must have been accepted at random but will be pointedly cited. I chafe because I know these shiny objects will have influence on public opinion and mislead vulnerable families in urgent need of good information but I also need to separate whether something GETS attention and whether it SHOULD.

One thing most of us in the eating disorder world agree on is the great need for better media coverage and research and educational materials. What we disagree on is what direction it should take and what the content should be. I do wish I could create a vast parent-friendly sense-permeable filter to the Internet and all media but it's futile to concentrate on that. Better to focus on arming parents to do that filtering on their own.

I will consider the source, and gauge my response and blood pressure accordingly.

P.S. I will break this lofty rule, probably inside a week, but I will try.
P.P.S. Katie sent this automated Daily Mail headline generator in the comments - and it is RIOTOUSLY funny: http://www.qwghlm.co.uk/toys/dailymail/

November 4, 2010

Free anorexia nervosa treatment in Pittsburgh: medication study

A study announcement from University of Pittsburgh:

Volunteers Needed for Anorexia Nervosa Treatment Study: Researchers at the Center for Overcoming Problem Eating at Western Psychiatric Institute and Clinic, University of Pittsburgh Medical Center are conducting a placebo-controlled trial to examine the effectiveness of a research medication in the outpatient treatment of adults with anorexia nervosa.  Eligible participants will be offered 16 weeks of medication (active or inactive) and medical monitoring by a psychiatrist. All treatment will be provided at no cost to you. If you are 18-55 years of age, have anorexia nervosa, and are able to attend treatment in Pittsburgh, you may be eligible to participate. Please call 412-246-5930 for more information.

For more studies, and important information on making the decision whether to participate in clinical trials, see the F.E.A.S.T. page on Clinical Trials in Eating Disorder Treatment.

Groove back?

My friend, Jeanine, has read my mind and done some necessary repairs while she was in there:
Work Less and Focus More on What Matters to You. This isn't just "don't worry be happy" nonsense, this is practical stuff.

I do allow far more on my "to-do" list - work, family, household, relationships - every day than can possibly get done and I tend to feel like I've messed up most days because I didn't "finish." I work hard all day and feel bad about it -- whose fault is that? It is harshing my mellow. It's taking my groove away. It's sending me into 80s cliche phrases!

I happen to know I'm not the only one with this problem. In fact, I bet a lot of people reading this do the same darn thing. But we're on the rodent wheel and don't know how to get off. Jeanine's got some real ideas on how. It is important every once in a while to ask why I think I'm so special that MY to-to list can't be shortened. There's an egoism there than needs examination.

Today I resolve to say "no" more, and say "yes" more, delegate more, and instead of prioritize: just decide.

I'm having lunch with my best friend, and I'm going to do work I feel good about instead of feeling bad about the work I could not have done.

November 3, 2010

Lemons from the Internet

So, somewhat mortifying experience this week. Sent out my first F.E.A.S.T. newsletter using our new integrated website and turns out a significant percentage of our members never got it. Don't know why and the web host doesn't either.

So I sucked it up and wrote to everyone the old fashioned (email) way, and asked to hear from those who didn't. They keep rolling in... I hate it. It doesn't feel good to have a very public snafu, but I'd rather know than not know.

But here's the lemonade: Everyone has been so kind. And I'm hearing from lots and lots of members who did and didn't get the newsletter and with the answers are also coming lots of updates from families. I'm hearing about treatment progress and recoveries and families who are ready to move on to other interests, too.

THAT's the goal. All this work isn't about a nice website or technical perfection. It is about real families getting support and information and their kids getting better - and the lovely community of families trying to help.

As chagrined as I am about the newsletter problem, I'm accepting imperfection with as much grace as I can. It helps a lot to be connected with all these wonderful, wonderful families. Thank you all for the patience, kind words, and encouraging stories!!

November 2, 2010

Marcella's blog

I confess I'm way behind on reading, but one good thing about that is that I got to read my friend Marcella's blogs about the NEDA conference all in a row. What a lot of amazing insights and observations and details!

About activism (and translating English to English), and science, and scientists, and clinicians, and controversy, and FRIENDSHIP.

I highly recommend the NEDA blogs by Carrie and Sarah and Jen as well, but I'm sending a special shout out to Marcella for great, great stuff that I'll be savoring over time as well. Old friend, I just love hearing what you're thinking!! Oh, and sorry for our terrible American influence on you - you're becoming a regular crazed activist and will soon have peace signs on your clothing and bras burning and placards and chaining yourself to things!

November 1, 2010

Burn the spring chicken!

As a former English teacher in Taiwan, this made me howl:  May I take your order?

It's even funnier if you read Chinese - which I used to be able to do pretty well but only have a squinting familiarity with these days. Use it or lose it, clearly.

This menu is like someone (and I don't doubt it) ran the individual words through an online translator, had the eldest son of the family - the one they sent to school in the US for a year - edit it, then scanned the written words with a character recognition program.

And then had some drunk Americans come in and have a free meal while they "corrected" it. Don't ask me why I know the last scenario.