December 31, 2010

Visuals to lose in the New Year

  • The distorted mirror shot
  • The before and after shots (*special mentions for after shots that look like models... in an implied dig at the vanity of eating disorders.)
  • The sad gaze into the middle distance by middle class European-American girls. Better, absolutely, than the others, because it conveys mental anguish, but it often comes with an inset of an empty plate, fridge, or fork.
  • The "headless fatty" photo illustrating "obesity crisis" journalism (*special mention for the "headless child fatty" which implies such a furtive shot that the photographer probably went home and had to bathe afterward.)
  • The photoshop cinched waist shot
  • The silhouette shot of thin people leaping into the air, which is only a little less subtle than a Viagra commercial. 
  • Scales, scales, scales, scales. 
  • Empty plate. Yeah, I've been guilty of this one. My daughter called me on it and I've been in withdrawal ever since.
Some new images to insert into stories about eating disorders and weight:
  • The normal family eating dinner.
  • Parents holding hands looking with concern at kid.
  • People smiling.
  • Parents and patients of different shapes and sizes.
  • People napping.
  • Stack of medical bills.
  • A pile of books/medical journals/and a PubMed screenshot
Other suggestions?

December 29, 2010

Things I loved in 2010

I'm sure I'll love 2011, but here's some things I loved in 2010:

My husband. Who knew *I* would not only find but so far keep Mr. Right? (I was, formerly, infamous for poor choices in that department.)

My kids. Yeah, I know, supposed to say that and who doesn't - but REALLY. My daughter is one of my most treasured friends and my son is the source of daily delight to me. We all have our optimal eras of parenting, and mine seems to be now. Another adolescence, of course, is upon us, but the first time round taught me important lessons and enormous humility.

My maternal grandmother. Despite repeated exit scenes, she is still with us, giving me the opportunity to for the first time truly spend time with her and get to know her - and my mother - in a satisfying way.

My brother and his new wife and all they are bringing to the family.

Really tap dancing. Up until this past year I was so clunky and plodding at it - with only flirtation with joy - the work is paying off. I'm not looking at the clock. I've settled into my toes and heels in a way that I can spring out of without just falling back in. Next year: precision in even the small, easy stuff.

My friends. For a long time my activist world and my "real" life were pretty divided. Different wardrobe and relationships. Lately I don't feel that division at all.

The F.E.A.S.T. Board of Directors. They are my bosses now, and that's a strange relationship. It is far more complicated than I ever conceived it could be. When it works, and that's usually, it is like having a floor under me and intelligence on call. Special mention to my Executive Committee who are wisdom and spine and clarity in a package of three.

My Blackberry. It isn't fashionable to say so, I know, but I delight in having that palm-ful of connection wherever I am. It doesn't rule me, I use it to enjoy my life and work well. My new Kindle gets honorary mention - that delightful collision of old and new.

The goldfish in my little pond. I don't understand how they do what they do. Right now they are swimming under a layer of ice. Watching them all year just cracks me up.

Travelling, and staying home, both. I used to go places as a travel agent and that'll suck the fun out of it for you - now I go places to connect with a world of people who I genuinely want to see. All this being away from home has also given me an appreciation for being at home.

December 25, 2010

Henrietta and her cells are laughing!

 If I had not just finished reading (and you really should, too - you'll be riveted)
The Immortal Life of Henrietta Lacks I would not have appreciated the back story of the news that Chronic Fatigue 'virus' was actually a lab mistake.

I was one of those who crowed, and now eat crow, about that discovery.

Henrietta and her cells are laughing!

December 21, 2010

Dull name: exciting contents

What a wonderful thing, the Clinical Report Identification and Management of Eating Disorders in Children and Adolescents FROM THE AMERICAN ACADEMY OF PEDIATRICS

First of all, because it is online, full text. Parents can read it and know what their pediatrician knows (or should). Moms and dads can have a direct peek into the state of the art about the illness and how it is treated.

They can read this line, in particular, that may save years of potential misery: "When an adolescent is referred to a pediatrician because parents, friends, or school personnel suspect the possibility of an eating disorder, it is likely that disordered eating is present." This is critical information. Parents generally report feeling something was wrong, and it is validated by those around them. But they doubt it, and fear it. If the pediatrician minimizes, in an attempt to be reassuring, a long chain of missed opportunities can ensue. The parent needs to know that those worries are usually valid - and ideally their concern should be taken as a strong indicator of a problem.

This line, too, is critical: "Pediatricians must, therefore, not be lulled into a false sense of security if the adolescent denies all symptoms." Amen.

On the other hand, *I'm* critical of this line: "The parents’ reaction to the illness should also be assessed. Parental indifference or denial of the problem or inconsistent views about treatment may affect the course of the illness and recovery." It's true, of course, but could be phrased better. This sounds like "These parents can be obstructive." and fits into general disdain for parents that, while it is certainly true in some cases, is not a great starting point and feeds into lingering doubts about causation. Let me edit it: "Parents are often confused by the symptoms and may harbor unfounded fears and misconceptions that can, if unaddressed, affect the course of the illness and recovery. Your role as physician is to start the process of parent information and support that will lead to a positive outcome."

But this, this line is buried in the middle but could really use bolding, underlining, bells, and whistles: "The pediatrician should identify other potential psychiatric diagnoses (such as depression, anxiety, or obsessive-compulsive disorder), which may be a cause or consequence of disordered eating."

As far as I know, that is the clearest statement in such a publication to draw a connection between the eating and the psychological symptoms that acknowledges that the relationship may be bi-directional. Most recommendations talk about the disordered eating being a consequence of psychological symptoms, but not the cause. I am dismayed daily  at this gap in the literature so cheer for it here.

Bravo, AAP, for a clear and useful and evidence-based review and recommendations. This is a tool we will be using for a while!

December 20, 2010

in Sickness and in Health

As a devoted fan of xkcd (I've never been cooler in my daughter's eyes than when she found out I even knew what xkcd was...), I've worried along with other fans about his recent health problem. So it is with extra love that I share a recent kick-ass moment (excuse the profanity):




Two trains, same track, no collision

In an emerging field it is natural that we'd have a lot of uncertainty about how to treat an illness.

What is perplexing in the eating disorder field is how two completely opposing viewpoints on the role of parents could keep steaming toward one another without a crash: whether parents should back off or be engaged is one. Because this is a complex set of conditions and there are so many elements to debate, what often happens is we find allies in one area who disagree on another, derailing the issue at hand. Or a debate on one aspect of theory gets blown off the rails by a skirmish over another.

Most painful to me is when the debate on the parental role pits parents against parents. I often ask eating disorder professionals to take a stand in their field against other professionals and clinics operating poorly. But I myself try not to confront other parents - even those out there promoting ideas antithetical to my own message. Ouch. Hypocritical much?

I just watched a video of a mother advising parents to do the exact opposite of what I do. She told parents to fix themselves, let their children control their own food, back off, and realize that it is not about food but about deeper psychological issues. Had this message come from a clinician in the field I'd have been blogging it. But it is a fellow mother so I'm queasy. So much so that I'm not even telling you who or where it is.

There probably is a way to respectfully engage this mother's point of view, and I lack the skills to do it. I have a really thick skin now about critique from the profession but still get all weepy when parents criticize me. Earlier in my work I would have said "who am I to judge?" and now I feel that as a part of a huge community of families of like mind it would almost be bullying to call down that community on an individual. I have all kinds of justifications for not calling out parents and there do need to be boundaries on this - parents can't be expected to be held accountable in the same way as professionals. Parents - especially those who have lost their children to death or estrangement - deserve a special consideration, period.

Yet a sad truth is that much of the message out there for parents to back off, watch from a distance, leave food and therapy to the patient, and see the illness as a sign of failure or trauma in the family is coming from fellow parents. The message is no less damaging coming from moms and dads: perhaps more so.

The trains need to get close enough to see one another, or maybe they need to crash. I'm struggling with this.

December 19, 2010

image vs. effectiveness, coping vs. acting

Earlier this year, a friend made some observations after her first eating disorder event that stick with me - I think of them nearly every day. She said two things struck her. One is that treatments seem to be sold to families on the basis of image rather than effectiveness. The other was that the role of parents and family was more about coping than taking action.

It struck me that this is a good description of the difference between the F.E.A.S.T. community and some others. Effectiveness and taking action are without a doubt our focus. Our emphasis on evidence-based practices and parent engagement (with ALL treatment, not just FBT/Maudsley) is what draws us together. We are hoping to help parents cope but not helplessly or just for their own benefit. We see parents as active, engaged, informed - not just suffering. We see parents as a part of treatment, not an additional problem to manage.

Our community is focused on effectiveness, evidence, outcome. We don't just ask for access we are coming to expect it. That attitude probably comes across as demanding and is often mistaken for over-involvement, but we look at eating disorders as an illness where parents have no less responsibility than with cancer or brain injury. This is a new era for parents and eating disorders, and a needed one. We needed to step up, and we also need to be taken seriously.

December 18, 2010

My left parietal lobe


I talk about other people's brains all the time so it is only fair that I share something about my own.

I have dyscalculia.

What's weird is that I didn't realize this until VERY recently. Figuring this out, by accident of course, has been like looking at one of those optical illusions where once you see the other image you can't switch back.

I started talking to friends about it lately, online and in person, and I'm finding a lot of people relating the same symptoms, to differing degrees. Also differing levels of defensiveness, resignation, and embarrassment. I have experienced all three, but mostly an intense curiosity about it. This discovery has explained SO many things about the trajectory of my life. Telling right from left, reading a clock, dealing with maps, doing simple calculations in my head, the complete inability to play backgammon... Why learning a new sequence of tap steps is so much harder for me than my classmates!

I know now that I found a zillion ways to compensate for these gaps in my brain, and that these compensations helped me in other ways to be successful - and also that I "decided" not to do certain things in life and "don't care" about certain things that may be more simply explained as "I can't, therefore I choose not to value that." Despite this number dyslexia I still tutored people in math, ran businesses, got an M.S., and manage my family's finances. I probably worked four times harder at these things than other people might, but I get by.

One thing I've discovered as I've researched this is if you can't read and write well people judge, but math weakness is written off as less important. Also that weakness in math may be associated with greater ability in writing (this, like other possibly apocryphal tales, is the kind of stereotype no writer will dig too deeply to dispute), but not the other way around.

I wonder, lately, if there had been a name and a recognition of this when I was a kid whether I would have been discouraged from doing things, or failed to try. Being labelled - an active debate in all mental health issues - is a double-edged sword. I'd like to think the naming of things helps develop tools and insight, rather than stigma and defeatism, but of course I know both are surely true.

December 17, 2010

Winter coats during school hours

In exchange for showing you this very amazing video below (they're not smiling but I defy you not to!), a poll:


Where do your older kids put their winter coats during school hours?
1) Wear them all day and bring them from class to class
2) Put them in locker/classroom/storage room
3) Don't wear them at all because there is no room in locker/classroom/storage room
Now, enjoy your treat:


December 16, 2010

Teleconference for parents

MentorCONNECT Presents: Family Healing and Communication

Presenters: Dr. Kimberly Dennis and Dr. Stan Selinger from Timberline KnollsEvent Description: Are you in recovery from an eating disorder, surrounded by well-meaning family and friends, yet you often feel frustrated by your inability to ask for and receive the kind of support you really need? Are you a significant other, family member, or friend who has a loved one in recovery, and you often find yourself struggling to know what to say and do to show your support?
This special teleconference is designed to serve as a guide for family members, significant others, and friends who are in a position of supporting a loved one through the process of eating disorder recovery.
Dr. Kimberly Dennis and Dr. Stan Selinger are experts in facilitating family communication and healing. Together, they will lead us through a teleconference that focuses on frequently asked questions and practical tips and techniques that significant others, family members, and friends can use to build and deepen the bonds of support with a recovering loved one.
Recovering persons and their families, friends, and significant others are warmly encouraged to attend and participate together.
When: Wednesday, January 12, 2011
What time: 8:00 - 9:15 p.m. Central Time

The quality of the oxygen

The decision of which residential treatment facility to choose gets a lot of attention. These clinics have lots of reasons why you should choose one over another, and people debate this issue pretty emotionally. But here's the only question I want to know: what happens afterward?

Residential care without a real discharge plan for ongoing care is meaningless and dangerous. It doesn't matter how good the care is in a hospital or residential center if it ends without continuing the care in a consistent way at home. It's like debating the quality of oxygen you use to resuscitate the patient. If you're just going to throw them back in the water when they regain consciousness it really doesn't matter.

It takes a long time, many months, to begin recovery and get started on living a life free of relapse. Residential care doesn't last that long. No matter how perfect the placement and ideal the therapies in the center what matters is what is going to happen at home. Instead of focusing on what happens in the center, I believe the best center is the one that focuses on assuring a well-trained, safe, and nurturing home and family to come back to - one with the very same protections and supports and messages as were offered in the center.

Here's the story I hear over and over: "She was doing so well there and really wanted to get well. She was motivated and ready. Within a week of coming home she started losing weight. The center won't take our calls now, and our therapist here says it is up to our daughter to 'work the plan' and 'use her tools.' We feel even more helpless than before she went in. She says we're too critical and that we stress her out. We don't have money or insurance coverage to go back and she says 'I'm fine.' We don't know what to do."

We can't send our kids off thinking that they'll come home and teach US what we need to do. We can't think that residential care will fix the problem or do our jobs for us.

ED has a long-term discharge plan, believe me. The time to decide our family's plan is when deciding on treatment, and the time to put that in place is from the first day.

December 15, 2010

Flak (over) Swans

Of course there's buzz at my dance school and among my online friends about the Black Swan movie. When I first heard that the two stars - neither dancers - were instructed to lose weight for the roles I cringed in advance for the inevitable "will Black Swan promote eating disorders" talk, the conflation of eating disorders and disordered eating, the pro-ana talk, and the minute examination of these actors' bodies. Not to mention my motherly concern that these two young women might trigger mental illness in themselves. Losing weight like that is like trying heroin.

At the same time, there's some talk about ballet dancer bodies elsewhere - and backlash against that talk.

I had planned to keep my head down about the above issues. Dance is important to me personally and the relationship to - and professionally the dependence ON - disordered eating and mental problems is not something to be ignored. But rarely does the conversation get beyond a surface level. Dance is not the problem. It is what we do as - and to - dancers that is the problem.

So it is with delight that I note my friend Marcella brings it all back to something "completely different" and yet entirely relevant. As a mother, a dancer, and a human being this news piece is tonic to all that is toxic around dance. It is a delightful piece, and the only pity I felt as I watched it was for myself before I saw it - for expecting anything less.

December 14, 2010

hand-stirred

Before ED, and before that when we moved to town and I became a full-time writer, I was a soap-maker. These in the picture are either Rosemary, or spearmint bars. The one I'm holding below, looking every one of 13 years younger, is almost certainly a Jewelweed bar. Good for poison ivy. That one I scented with Juniper oil.


We kept goats named Jack and Jill and made goatsmilk soap, and the house smelled of essential oils and clean warm milk.I spent Saturdays alone in the kitchen soapmaking in late summer, after each week of homeschooling on our little farmette in the woods. The soap had to age for several weeks before it could be used so by this time of year I would have already made all my calculations and stirred until my arms burned and poured and cut hundreds and hundreds of bars. This was peak holiday season. Evenings I beveled the edges with a sharp knife, cut strips of muslin for wrapping, labeled, dated, crated - handling each bar as much as it would be when actually used. We advertised them as "hand stirred" but everything about them was about hands, down to when we handed them to the buyer in a brown paper bag, like produce.


During summers my daughter and I set up shop at fairs in neighboring counties. She liked the shows with live music. I liked the shows with indoor toilets. We shared our booth with a friend who made beeswax candles. Our girls stood outside the booth with an antique pitcher and bowl and helped people wash their hands with our soap. After that, most people bought, happily, charmed. We put out bubbles for the passing children, and a cooler of food behind the table.The favorite bars, every show, were always the cinnamon: constellations of spice under the surface.


Our family and friends have long since used all the soap but looking at these pictures I can smell that tray, and I can feel my fingerprints on a fresh bar. The prickles on my wrist where I splattered lye, the drag of the wooden spoon as the liquid warmed itself and then saponified into the exact moment it could be poured.

I don't miss the exhaustion of getting home in the dark after a show, out since before dawn and still with a car to unload and the chickens to lock in. I miss the handfuls of fives and ones that she and I would pour out on the table - the occasional $20 - to the delight and amusement of my husband, who had a 'real' job. I don't know how much money we made those years, but it felt like we'd earned it well.

December 13, 2010

TOM - theory of mind, not the shoes or the time of month

When I see "ToM" I have a quick blush at "time of month" and then my favorite shoes and then: one of my favorite concepts: "Theory of Mind."

Those familiar with autism and Aspergers know this idea well - but I think parents can add it to my hit parade of vocab words: alexithymia, anosognosia, ego syntonic.

In the best description I've seen, by my friend Cathy, ToM is "the ability to mentalise; i.e. to identify and understand your own emotions and others' emotions - and to respond 'appropriately' to such emotions....It is suggested that while 'normal' (non autistic/non-Aspergian) children learn intuitively to 'read' other people (and themselves), children with Asperger's syndrome (AS) learn this process intellectually. Most 5 year old children are quite adept at 'reading' other people - by their facial expressions, body language, tone of voice etc., but children with autism/AS have difficulties with reading body language and using it in a way that other people understand. When I was a child I related relatively OK to my close family, but I couldn't work out other people, including other children. As a consequence I became sullen and depressed at school, and at times, mute. And, I was very, very gullible and easily 'set up' or taken advantage of by other children."

How can this relate to eating disorders? "If a child with autism/AS develops an ED it may because they're struggling with their own emotions/feelings, and they are less likely to understand the effect that their illness is having on other people."

There is a growing awareness that Aspergers may be going undiagnosed in girls, especially, as it presents in a different way than in boys. More and more researchers and clinicians are noting similarities between the ToM thinking of eating disorder patients and those with Aspergers - some even calling anorexia a form of female Aspergers.

But then, one researcher I know dismisses this idea, saying "The brain has only a certain number of ways it can malfunction, and ToM is one of them - many brain problems may present in the same way, but that doesn't tell us something essential about this particular illness or how to treat it."

December 12, 2010

No, THOSE come with the package, we're talking about OTHER supplies

An excellent example of parent activism and I hope it is successful: Really, IRS?

I breastfed both my kids. And yes, one was adopted! In the latter case, although I came with the proper equipment, I had to also use formula in a contraption that made a mockery of the low-tech art of breastfeeding. I was certainly the only mom at La Leche meetings carrying Similac, and also the only one having her chest stared at!

December 11, 2010

Happy feet, sniffly nose



I rose from my sickbed last night to trudge to town and join my tap class in front of Santa's workshop - there were carolers and bagpipes and ballerinas and some teen rockers as well. It was cold, I had a cold, but for once I have to say I really DID relax and have a good time. Instead of oblivious adrenaline, I was aware of smiling without the fixed grin of terror. My fellow tappers are so good at this - the dancing and the performing - and I've always just hoped I'd not embarrass myself or them. Last night, perhaps in the resignation of sniffly low expectations, I just danced. I think Mumble would have been proud.

Family Week

I have never experienced "Family Week" because our family did not go the residential treatment route. I'm pleased to hear it is changing over time. I applaud the idea, in theory, of bringing families together at the treatment site to learn about the illness and treatment and work more intensely as a family toward recovery.

But I remain uncomfortable with the idea for two reasons. One is a concern that family education can, if done in a certain way, send a message that disempowers parents, implies blame, and sets the clinic up as the safe and caring family figure in the patient's life. It is rarely meant to do so, but families often report feeling filled with guilt for missteps, for being wrong, for causing harm, and ending the experience feeling superfluous to the process. The focus on parents needing to listen to their kids (as if their failure to do this before was part of the problem), communicate better (is there a family that couldn't do more of this?) often leaves parents feeling humbled and contrite - not aligned and clear-headed. This is distinct from the kind of family education that aligns the parents with the treatment team, orients siblings supportively, teaches about the neurobiology of the illness, coaches parents in the clinic's approach to responding to symptoms, offers tools and resources, and creates a seamless discharge plan.

But my primary concern is that Family "WEEK" needs to be 24/7. Ill children need to be with their families and parents need to be present and receiving full time training for the transition home - where the real work begins. When I bring this up to those operating in the residential environment they protest that parents can't, won't, or don't need to do this. Well, I think that all depends on how this is framed by the professionals. Yes, the family that can easily alter their lives to be there full time with ill hospitalized children is rare. But if the risk is of lifelong illness or death then families find a way - or at least have a realistic sense of the risk of not doing so. If we were talking about a critical burn injury, chemotherapy, or a car accident no one expects their child to be taken to another location and fixed - with two weekly Skype conferences to replace parental contact. No one talks about inconvenience and expense as if they were a cost-benefit analysis.

I would like eating disorder treatment providers to start EXPECTING parents to be there 24/7 and to make that the model of care. Will that be hard? Yes. Will that change the model? Yes. Will it be expensive? Compared to what: what is the value of a life, a family?

December 10, 2010

Spark, trigger, cause

There's a sloppy tendency to use a bunch of words to mean the same thing: "cause."

Spark, trigger, precipitate, risk, fall, contribute, lead to...

Here's how to tell: if the word is being used to explain or justify a treatment approach then it usually is meant as "cause."

I spoke at the recent Renfrew Foundation conference on the topic of agnosticism in treatment. This made more of an impression than anything else I said. The idea of being agnostic in what causes the illness pulled the rug out from so much that we are used to saying and thinking and arguing about eating disorders. Go ahead, try to discuss treatment without using causes. It's difficult. In the process, let's see if all the euphemisms for "cause" have to be set aside as well. Let's ask ourselves if there are other illnesses in which those words are used in the same way.

For the price of a gently used car

I'm very proud of F.E.A.S.T. A group of us dreamed of an organization FOR parents that would be supported BY parents - and that means paying for it as well.

Most nonprofits rely on donations not just from members but from organizations and businesses related to their work or community. F.E.A.S.T. has taken the stand that in order to remain independent we need to turn down advertising or sponsorship and even donations from clinics that treat eating disorders. This is not to reject their support, but to make sure our compass is set by those we serve..

This stand means we operate on very little money. I am full-time unpaid staff and all of our volunteers do so without compensation. We have no office, computers, or other usual infrastructure.

Despite these restrictions, and on a yearly budget of the cost of an average used car, F.E.A.S.T. manages to assist hundreds of families all over the world, influence policy, speak out in the media, and save lives.

We listen, we reach out, and we have a growing voice on behalf of families.

Once a year we call on our members to show their support tangibly, with a donation of whatever amount they can afford. These financial contributions keep our little vehicle going for the coming year. Send enough for a tank of gas, or a transmission. Keep the headlights on for an evening or the whole year. We exist to support families, and do so with family support!

DONATE NOW

December 8, 2010

Preventable death

Another preventable death.

Another family given the right information but not able to follow it through or even believe it because professionals in charge didn't know what they didn't know and there was nothing in place to tell them.

Another life lost, and a family stricken, and those who tried to help.... ravaged.

I am asking, today, whether eating disorders kill. I no longer think so. It is us. It is lack of action and anger. It is pride and professional courtesy. It is faceless invisibility of those who escape the fire but don't go back to pull others out. It is expediency and cost effectiveness and priorities. It is the self-protectiveness of exhaustion and the self-satisfaction of good fortune. It is boundaries, and insecurity, and lack of vision. It is feeling like a cog in a machine instead of the one link that can refuse to connect. It is helplessness and ambition and process.

It's not anorexia or bulimia. We do know enough about THOSE. If we chose to we could treat THEM.

For those who tried: you have nothing to answer for. The rest of us do, and will.

Denying the word "denial"

Can I just say how much I dislike the word "denial?"

I find it one of the most condescending words in the language. It's one of those wobbly words you can't argue with, but we all know the implications. It is willful, it is conscious, it is weak. It isn't a vicious slur - more venial - but even that gives it a scent of "if you had even a bit of self-knowledge you would be above it." The slight Freudian tinge confers a clinical distance and superiority to the speaker that is rarely lost on the one spoken of.

"He's in denial." "They're in denial." "I was in denial."

I can't think of one instance in which this is a helpful concept.

"He is afraid." "They have not fully grasped the seriousness." "I didn't realize." These are all, I would submit, more accurate, less of a character judgment, and admitting of hope than the others.

In a world that does not help us understand mental illness, filled with outdated notions and pop psych, and few coherent messages it could be said that our society is "in denial." But I suggest this: "We are just waking up to the hope and possibilities for improved mental health throughout society."

Catch and release

Do you fish? The current reality for most eating disorder patients is a lot like "catch and release." Feeding people to the point that they are no longer gasping, and then sending them back out into the world to cope with it... not a great strategy. We KNOW this doesn't work. But we keep doing it because we use a crisis-based medical model combined with a choice-based psychological model.

Everyone in the system hates it. Everyone externalizes the problem: "it's expensive" "there are legal issues" "insurance works that way" "our health system doesn't work that way" "it's coersive" "it's so challenging for the patient" "it can't be forced" "true recovery comes from within" "they have to do it on their own sometime..."

It's crap. Patients are not better able to manage themselves at a minimum weight/minimum stability. In fact, that is the exact time they are least likely to manage. It is the world that needs to change - the illness isn't going to. Here's the ONE change we need to make: continue the same high level of support/monitoring for months after medical stability. In other words, still catch, but don't release until swimming easily in deep waters. And take account of the hook damage and the handling.

Our catch and release system is creating chronic illness. If we don't change the system, then it is not the illness to blame - it's us.

December 7, 2010

Parents won't or parents can't?

Here's a sad truth: not all parents WANT to be in charge of re-feeding or monitoring eating disorder behavior at home. For some families it is a relief to be told that the solution is to send them away to fix their problems and they look forward to the child coming home well and grateful.

At least that's what I hear from a number of clinicians who have encountered this phenomenon.

I always wonder whether parents really understand their options. If they knew how long and difficult recovery is, that a few weeks or months is only the start of the process, and that the hard work will be theirs at home later anyway, they might make different choices. I think if parents were told on no uncertain terms just how hard this is going to be NO MATTER WHAT THEY CHOOSE, and just what will be necessary to best address it parents would frame the question differently.

If parents had the opportunity to get back-up and immediate hospitalization at will during the re-feeding process I think far more would be able and willing to take the responsibility. If parents had truly supportive and skilled clinicians who believed in full weight restoration and cessation of eating disorder behaviors as a restorative step to allow recovery, and truly believed in the power of parents to take this part on, I don't think I'd be hearing so much of this annoyance at parents who "refuse" or "are in denial" or "don't want to" do the work.

If this was the way it was framed: "save this child's life" I really don't know that many parents would say "no, I don't want to try, you do it." Families choose between two terrifying prospects: being on their own at home with angry, frightened, frighteningly sick kids, or sending them to care that they are led to believe will solve the issues causing this problem. That's not abdicating responsibility or denial or the easy way out. That's raw, cruel fear and love. That's mothers and fathers faced with the Judgment of Solomon, not a lack of caring.

December 6, 2010

Is compliance the active ingredient?

Here's something you probably don't expect me to say: I'm disappointed by the recent Maudsley data as much as I'm pleased. In the optimistic glow of recent good press it must also be noted that it is not all good news. When I first saw preliminary data in London in February I braced myself - this is not the 85-90% success rates of earlier data.

Doubling expected success rates is absolutely wonderful. Considering where we're starting from, and the lack of alternatives, IT IS STILL THE BEST WE'VE GOT. Treatment "as usual" out there - and the majority of people with eating disorders don't get any treatment - has dismal success rates: about 33% fully recover.

It's bizarre that people see this research and say "well, it doesn't work for everyone so let's apply this knowledge to only a small group." I see it and say "we need to make whatever is working in this stronger so it will work for more people."

And I ask myself, as usual, what is the "active ingredient" of Family-Based Maudsley - or ingredients? It could be, as I hear others say, the changed stance of the family, or the alliance with the clinicians, or the lack of blaming of patient or family, or the power of family cohesiveness. But I think it is compliance with eating and food behaviors. No other treatment approach focuses on that except residential, which at most offers six months of compliance - almost always far less.

Parents keep their dependent kids eating and in therapy.

If compliance with eating and behaviors is the active ingredient that doubles recovery rates then this can be generalized to more treatment. It could become normal for eating disorder patients to be relieved of responsibility for food and choices about activity levels or compensatory behaviors. It could become normal for patients, once diagnosed, to be monitored indefinitely and hospitalized or taken care of at home as needed - no more repeated weight loss and going back to behaviors. If this is the active ingredient it might be separated from the issue of what other treatments are being offered and used concurrently: CBT, DBT, CRT, IPT.

Compliance with nutrition and ED behavior plans could stop being an idea that is only used in children and in emergency inpatient situations. I wonder how the success rates of ALL therapies would rise if this one active ingredient of ONE - FBT - was expected across the board?

December 5, 2010

Book Review: "Life Beyond Your Eating Disorder" by Johanna S. Kandel

I get a lot of books to review. I read them all, but I only review the ones I can recommend. This one wasn't for review: I got this book as a gift from the author, who I've lobbied with at Eating Disorder Coalition Lobby Days and get to see at events throughout the year. Johanna is one of those people who I describe as genuinely warm. She greets others, even strangers, with warmth. She speaks to audiences with energy and warmth and a way of feeling personal even in a roomful of people. I mention this warmth because it comes through in her book, Life Beyond Your Eating Disorder. She's warm, she's engaging, and I feel as I would if I was learning about an important issue about which Johanna is truly experienced and confident in explaining - no drama, no lecturing, but lots of insight.

You can, actually, judge this book by its cover. No empty plates, no tortured teens, no distorted mirrors. This is an image rich with metaphors we don't need to belabor. It is also true to the title, and the content. This is a book filled with tools patients can use to understand, think about, and use.

It's not about food. The book, I mean. This doesn't mean Johanna doesn't connect eating disorders to food or eating but that she does something I wish everyone would: make the nutritional part of recovery as a given. Eating disorder recovery isn't something you do before you restore the brain - but of course restoring the brain isn't the end of recovery either. This is a book of ideas and tools to understand and learn to live "beyond" the illness. As much as I emphasize the brain restoration I do so only as the necessary way to GET to the psychological recovery - which generally involves varying levels of cognitive work.

I adore a good metaphor, and this book is FULL of them: really good ones. She has them for black/white thinking, for perfectionism, for dealing with others, for re-learning life skills.

My favorites? The crayon box, artichokes, and the drawers. Used that last one myself just today.

She also has two completely unique chapters that I have to preview for you. One is about how to "stamp" the ignorant in our lives. Her take on this is really, really good and could be helpful for parents as well - as I know we can sometimes want to bubble wrap the world to keep our kids from hearing the wrong things. The other is about Brideorexia - a topic I thought I understood a bit but she illustrates in vibrant detail. Have a recovered loved one? Read this chapter before they get engaged.

I'm often asked what books are good - or even which ones are "safe" - for eating disorder patients. My answer is usually "none" until they are recovered, and "very few" when they are. I can recommend this one for adults in recovery, however (Children and adolescents, in my opinion, need to focus on the messages from parents and clinicians). This book's message is empowering, family is not marginalized, and it could be appropriate regardless of treatment approach (including Maudsley). Because the author leaves out the food and eating advice this won't conflict with treatment philosophies or approaches. Because the skills and information in this book are positive, useful, and warm - it might make a good family read and discussion. Adult older siblings, in particular, might benefit from reading this and discussing it with parents.

We need more books that convey the kind of warmth and insight that Johanna has created here. I look forward to more from her, too!

Having it all

I just hate disagreeing with Gloria Steinem. I mean, I agree with everything she says about having it all. Except.... connecting it with eating disorders.I grew up in an environment of an exciting social movement that taught children to value themselves for actions and not appearance and with an appreciation for diversity of appearance and action: in other words a college town in the 70s amidst feminists and civil rights activists. Too little of that has translated to the mainstream, and much has been reversed.

I'm watching the eating disorders world re-discover and re-ignite that social movement but it often seems to be unaware that we've been through this before. Sadder still, too many in the eating disorder world are being distracted by these revelations into thinking that they are the cause of eating disorders - leaving me in the bizarre position of seeming to be against messages that I do believe in.

We do need to reclaim the gains earned by feminists and social activists, period. Treating women and treating our bodies as commodities and value judgments is wrong and damaging.

December 4, 2010

The Rejection Therapy Challenge

My family has been talking about Take The Rejection Therapy Challenge lately.

My daughter is a designer, I'm a writer, and my dear hubby is in sales. These are not fields to enter if you're undone by rejection. These professions COURT rejection. My young son? A musician. Oy.

My folder for rejection letters is labelled "YAY!" Because my job is to get a bunch of rejections. That's the price of getting a few "we are pleased to" letters as well. I don't think of rejections as a bad thing, but a good thing. I revel in the nuances of the emailed vs. mailed letters (mostly emailed these days). Signed or unsigned, with personal note or no. The auto response is expected. But most rejections are actually a lack of any response at all. I know lots of writers, even some really successful ones, and their rejection rate may be lower but they still get them. And you know what? They're free!

My husband was my tutor on this, early in my career. He wasn't having all the slobbery weep-fests over postcards from strangers. He refused to join me in the conviction that I was doomed and incapable. It took 48 rejections to sell Eating With Your Anorexic, by the way.

Speaking of which, this month EWYA - as my family calls it - went out of print. The end of a really good ride.

And, as it happens, I have three other manuscripts to sell - and a stack of rejections to show for them.

"Yay!"

December 3, 2010

Too honest?

Cate asked a question in the comments recently that I find really important:

"Laura, could I put another query out there along a similiar line? - this time regarding honesty when answering our children's questions. I know everyone's gut reaction will be that you need to answer your children's questions openly and honestly. But if we've already agreed that there may be something to this topic of planting ideas in their heads, then is it possible for parents to add to this problem by being too honest? - especially with those children we may already fear to be genetically predisposed to this (and especially if we are ansering questions about our own eating issues). This isn't something I've thought about before (my own children are still too young), so I would be really interested in hearing other people's thoughts on the topic"

I believe in parsing "honest" with "wise silence." Particularly for Americans, and most particularly in our psychotherapy-Oprah-express yourself culture, there is a premium on expressing everything and a sense that leaving anything out is equivalent to lying. I used to be much this way. But getting older and having 22+ years of parenting behind me I'm seeing that talkingtalkingtalking can actually be the lazy way out. If everything must be said then there's no need for judgement, for parenting. We're not parents, we're parrots.

I'm not sure exactly what kinds of disclosure you're talking about here, but I can imagine some particularly around disordered eating. Like, how to deal with different types of food if you can't use the idea of "good" and "bad." Or "do I look good in this dress?" or "Do you ever worry about being fat, mommy?"

Psychotherapists have some good tools for this. Like reflective listening, like "hmm" and "mmm." Like "you seem very anxious about that issue. Do you want to talk about it?"

A lot of the questions our kids give us, especially when they're ill with anxiety, depression, dysmorphia, or OCD, don't HAVE answers. Or at least the answers aren't the point. "Do I look fat?" is such a question. "Am I a bad person" is also not a real question as in having a yes/no answer. "Is this enough food?" may HAVE an answer but if the question is being used as a "checking behavior" then answering it may not be a good idea.

These are some of my thoughts. Yours?

December 2, 2010

Where do we start?

I make no secret of my conviction that the anti-obesity movement is misguided and harmful. Yes, I know that sounds as if I'm saying let's all sit on the couch and eat chips and donuts - I'm not. I'm saying we really don't have any known way to permanently reduce weight and we really don't know how to measure healthy weight even if we did. We do know how to promote health, and that is what we should be doing: ordered eating of a variety of foods served by adults and eaten as a family and with pleasure, an active lifestyle, regular sleep, managed stress, and life with purpose.

The risk of this anti-obesity mania is also well-known. Stigma for larger people, rampant and unhealthy disordered eating, and possibly the triggering of eating disorders. Personally painful: it masks real mental illness by making it seem rational when someone becomes ill. And this: it is causing so much misery out there for no purpose. Let's promote health instead, and stop using weight as a proxy for every damn thing wrong in life.

Want a perfect example of how toxic this is? This note came from a reader, Whitney, and this journalism is just what we don't need: it describes heinous parenting behaviors and doesn't give a clue to how wrong it is. It buys into the certainty that obesity is self-imposed and worse than any fate in life. 
"Hi, Laura. I’m a follower of your blog, and came across this story which I thought was truly horrendous and sick:
http://abcnews.go.com/GMA/fat-babies-parents-put-fat-babies-diet/story?id=12216642


For some reason, I thought this might be of interest to you, blogging wise. If there IS anything “good” out of this article, perhaps it’s the short mention that your children are most likely going to develop their eating habits from their parents. As someone who battled anorexia, I can assure you my parents never did anything to “endorse” the sick rituals I went through, but DID help me rediscover my own healthy, recovering “normal”—which happens to be very similar to theirs"

December 1, 2010

The inability to construct a future

So much to learn, but progress does happen - in understanding and in explaining what there is to know:
Clear New Insights into the Genetics of Depression

Also on the science front:

"it doesn’t work in patients. And patients are what matters." News on a failed drug, corporate evil, and what this could mean for how we research depression in general.

Kids (and Animals) Who Fail Classic Mirror Tests May Still Have Sense of Self I'm thinking it's the mirror that's broken...

You've probably seen this one already but I just have to make a Perfect Pith Award to Dr. B for the line "anorexia is not a good contraceptive" in Women with anorexia nervosa more likely to have unplanned pregnancies.
 
And leaving you with this:
Participants Needed for Study of Sensory Integration and Body Image in Anorexia Nervosa
Researchers in the lab of Dr. VS Ramachandran in the Department of Psychology at the University of California, San Diego are recruiting individuals ages 13-55 who are currently underweight and have a diagnosis of anorexia nervosa.  We are studying how sensory integration relates to disturbances in body image.  The study involves 1 hour of behavioral testing on the main UCSD campus for $20, then (optional) about 3 hours of brain imaging (MEG and MRI) with tapping of clothed body parts at an imaging center near campus, paid $20 per hour.  For more information or to inquire about participation please email Laura Case at the Center for Brain and Cognition, UCSD: lkcase@ucsd.edu.

Mom power

I've been learning more about the Looking Glass Foundation in Canada lately, prompted by the appeal the other day (she's in third place if you want to go start voting!) and some media coverage about a proposed center.

I didn't know that the Foundation was created by a mom (you'll note we star any organization run by or devoted to parents in our list of resources at F.E.A.S.T.). I also didn't know that three moms have been working for a decade to open a residential facility for eating disorders in British Columbia.

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.)