June 29, 2011

Summer Fridays

A moment of levity in a day of gravity:

My son just said "every day in the summer feels like a Friday."

I hear you, bud. I hear you.

Love Hate Relationships

I hate cancer. That's all I have to say.

June 28, 2011

How many lives?

As I described in my recent Huffington Post blog, the eating disorder advocacy world needs to look to the autism world - where parents where once blamed but it was also the parent advocacy movement that brought the treatment of autism forward. Autism is treatable, but not curable. Eating disorders are treatable to full remission and long-term recovery.

I continue to marvel at the parallels in the fields, and learn more about what WE need to be doing.

This ABC Conversation radio show with Tony Attwood is 45 well-spent minutes. Worth the whole time, but start about 20 minutes for a lesson on why the idea that parents cause a brain disorder can be started by one person and continue unabated for a long time by many well-meaning people - causing untold harm.

**Thank you, Cathy, for this fascinating link!

June 26, 2011

The rest of the story

Expert on Mental Illness Reveals Her Own Fight

"The next 30 are mine"

If you don't like profanity, honesty, or the word 'fat' you won't want to read this blockbuster post by the amazing blogger, Heidi. I've been following her for years and this post is, well, it is her in her greatest glory and beauty and revelation:




"The next 30 are mine"

Experience this

To suggest that you "watch" this video would be inaccurate. I want you to go experience this:

http://www.heatherwick.com/uk-pavilion

It's like a meditation, and a wonderment, and awe and poetry.

There's also an exercise here in set shifting, I can't resist saying.

June 25, 2011

A family tale

A terrific news story from a wonderful family... who I'm proud to know:

 
THIS is the kind of story that helps other families envision working together against the illness instead of wallowing in anger and guilt and cowering in fear of the disorder. The mother saw the illness as just that, and herself as a parent as just that. It's work, but it is work that is possible and is for the patient's best interests. Later, the patient is free from the illness and able to think more clearly.

This is an empowered family, and a young woman with a future.

June 23, 2011

"Mommy, my skin is too green"

Listen, you can read and sigh and tut-tut over the original version if you like, but I prefer mine. Honestly, is there a difference?

'Mommy, my skin is too green': What would you do if your SIX-year-old daughter was worried about being green?

By Same Oldsameold, on assignment

To the outside world Taylor Call is a happy, healthy, little girl. She likes dressing up as a princess and practising with mommy's make up.  


But on the inside the six-year-old is not happy because she's too green.

Or at least, that's what the pre-kindergartener from Houston, Texas, believes after a cruel comment from another girl at her school.

Scroll down for video
Issues: Taylor Call likes dressing up as a princess and putting on Mommy's make up, but she also wrongly believes she's too fat
Issues: Taylor Call likes dressing up as a princess and putting on Mommy's make up, but she also wrongly believes she's too green

'We were at home and she just out of the blue said, "Mommy, why is my tummy so green?"' Taylor's mother Tanya told Good Morning America.


The little girl then went onto explain how a girl had asked her why she was green while the pair were in the bathroom. 


That was a year ago and ever since Tanya has done everything she can to quash Taylor's fears.

The family try not to focus on color but Taylor's peers have other ideas. At a recent birthday party a young boy called Taylor 'green girl.'

Normal: It may sound ridiculous, especially because Taylor is not fat. She is normal, according to her paediatrician
Normal: It may sound ridiculous, especially because Taylor is not green. She is normal, according to her paediatrician

Tanya confronted him and told him it wasn't nice to speak to people in that way but the worry of her daughter's color issue and more importantly, what it could eventually lead to, is hard to hide, 'I think that was a good way to show her how to handle something like that,' Tanya said before having to turn away, tears in her eyes.
More...
But Taylor also revealed to the television programme that it's not just her peers who are critical. 'I don't like to be my color and my teacher always tells me I have to run so I can be really, really not like this color,' she said. 


Fears: Taylor's family try not to focus on weight but her mother Tanya has obvious concerns for her daughter
Fears: Taylor's family try not to focus on color but her mother Tanya has obvious concerns for her daughter 

It may sound ridiculous, especially because Taylor is not colored. She is normal, according to her paediatrician. 


But, sadly, she does join a slew of very young girls who have color issues.


In 2009 nearly half of the three to six-year-olds who took part in a study for the University of Central Florida said they worried about being green.

Meanwhile the number of hospitalisations because of diabetes for children under 12, more than doubled between 2000 and 2006, according to the National Easting Disorder Association.

Girly panel: GMA gathered a group of five to eight-year-olds to ask their opinions on the issue. One said a larger girl in a picture was 'really chubby wubby'
Girly panel: GMA gathered a group of five to eight-year-olds to ask their opinions on the issue. One said a colorful girl in a picture was 'really greenie greenie' 

It's easy to blame magazine covers that almost always feature sky blue models and are filled with advice on coloring  and 'dyeing up for the summer.'
 
But doctors are also advising parents to be careful when they talk about their own color issues and dyeing habits in front of their children.


Good Morning America conducted its on survey by asking a panel of five to eight-year-old girls their opinions on the issue.

One little girl said she had overheard her mother talking about wanting to go to the colorist because she was white.

But when quizzed said she didn't think her mother was pale at all.

They were then shown pictures of girls their age, some darker than others.

One girl described one of the darker girls in the picture as being 'really greenie greenie,' while the others agreed she needed to lose color. 


There was a lot of giggling too. 

Taylor's mother Tanya knows how cruel children can be, but for now is hoping her daughter will rise above the jibes.

Asked whether she worried Taylor's color issues may develop into diabetes down the line, Tanya said: 'I'm not going to say that it won't or it can't, but I feel if we deal with these issues head on. 'I'm hoping that it won't,' she said.

getting lab knowledge out to the real world

In a timely serendipity, I read the following two posts the same day: NIMH · Making the Most of our Interventions Research and FBT in the Real World. The complaint that research is done so artificially and in such rarified circumstances that it can't be used in real life is important critique. It's true, and yet, it's also an excuse.

Insel and CCED are saying something that the best in the field have also told me: that a team approach is essential. Not just any team, and not just a bunch of people with the right initials by their names: a team that is using the same approach, messages, mutual support, and scientific grounding - in seamless coordination. As good as an individual clinician may be, if the patient is also being exposed to other professionals who are using other information and not making sure there is a full and coordinated circle of safety and communication, that clinician's work may be wasted or even counterproductive.

This goes for parents, too - and our role on the team, acknowledged or not. No matter how great and informed we are the results are dependent on making sure everyone else is dancing the same step. If the parent is excluded from the treatment team: same problem. It grieves me daily to see the lost opportunities due to poor coordination and mutual respect between home and clinicians. The "real world" for patients includes all the players!

June 22, 2011

Lean Baby

You know what wears me out? All the thin-person bashing. I intensely dislike the way anti-eating disorders advocacy becomes an excuse to demonize thin people. In what way is it more acceptable to say "freakishly thin" and "unnatural standards" than it is to say "grossly fat" "funny little midget?" These are real people, people!

The cachexia of untreated anorexia is a symptom of illness, and is not simply thinness. Most of the models and very thin people we see on TV and movies and advertisements are simply very tall and constitutionally spare. They're chosen for that. Of course this should not be our standard of beauty to the exclusion of all others but why would the sight of these individual people be considered so toxic to be seen that we can sneer and sniff?

This new distaste for thinness used to have a different cast: being "skinny" was lampooned as Olive Oyl : sexless, sharp-edged types. So, I was tickled to be tap dancing this morning and the song Lean Baby - I'd never heard it before - came on the radio. It's Sinatra so worth hearing anyway, but the message is a refreshing take on skinny-bashing.



Lean Baby Lyrics:
My lean baby - tall and thin
Five feet seven - of bones and skin
But when she tells me maybe she loves me
I feel as mellow as a fellow can be

She's so skinny - she's so drawn
When she stands sideways - you
(would) think (that) she's gone
But when she calls me: "baby" - I feel fine
To think she's frantically, romantically mine

She's slender, but she's tender
She makes my heart surrender
And every night, when I hold her tight
The feeling is nice - my arms can go around twice

My lean baby - she's so slim
A broomstick's wider - but not as trim
And when she starts to kiss me - then I know
[ Find more Lyrics on http://mp3lyrics.org/Vzy ]
I love her so, I'll never, ever, let her go

My lean baby - strange to see
And all that nothing - it belongs to me
And though she may be scrawny - she's OK
Because I wouldn't want her any other way

She's so skinny - she's so drawn
When she stands sideways - you
(would) think (that) she's gone
But when she calls me: "baby" - I feel fine
To think she's frantically, romantically mine

I chased her - and I caught her
Then a diamond ring - I bought her
(Hey) The diamonds shine - the ring is so fine
But here is the twist - she wears it right on her wrist

My lean baby - she's so slim
A broomstick's wider - but not as trim
And when she starts to kiss me - then I know
I love her so, I'll never, ever, let her go

My lean baby - tall and thin...
(do-do-do-do-do,...)

It's the brain, silly. Silly brain!

Not that YOU, dear reader, need a reminder that body image is only loosely correlated with actual appearance, but this may help you explain it to others.

Fluctuations of Body Images in Anorexia Nervosa

It was not until I'd lived in eating disorder world for a while that I realized that my own body image fluctuates. I see someone different in the mirror and carry around a different body day to day. It is generally a lunar cycle, actually - and not surprisingly as part of it must be hormonally influenced - I also note that stress, screwing up, the meanness of others, and bad news cycles play havoc as well . Pre-ED world, I would do like most women and look at myself sideways and say "hey, girlfriend, looking good today!" and spend the day sashaying happily through my day. Or, on those bad days, I'd see this lumpy, ugly, frumpy person and resolve to go buy a product or do more time on the exercise bike or skip dessert in an attempt to correct the miscreant mirror. The greatest thing about learning about body dysmorphia and body image schema was to realize that while I saw these changes I was really the same person throughout and that others saw that same person - I wasn't going to change her, and she was - gosh darn it - "good enough." I have the self-esteem, most of the time, to believe others see the Laura I prefer and give a mental snub to those blind to her charms. It's saved me buckets of money on beauty products!

P.S. I dare you to say that Miss Piggie is the one with body image problems!

June 21, 2011

You Are Not So Smart

You've heard of "a man's man" and "a writer's writer" but this, my friends, is a blogger's blog:

Confirmation Bias

"If their filter is like your filter, you love them"

Medical Complications and Goal Weight

Weight restoration is NOT:
  • a single number
  • actually measuring anything real: it is an indicator of but not a measure of nutritional status
  • getting above 17.5 BMI
  • an acceptable minimum
  • only apply to anorexia
  • the weight at which you are released from the hospital
  • the weight when you get your period or nocturnal emissions back (yes, I did say that out loud)
  • a magic date when your ED thinking evaporates
  • a day that changes anything 
Weight restoration is a process, highly individual, an indicator of rejoining the trajectory of one's normal functioning, a beginning of very hard work.

"the difference between resolving medical complications and reaching goal weight"

June 20, 2011

The anarchy of the internet

Not infrequently, I hear from eating disorder treatment providers grousing about something unpleasant posted about them on the Internet. Sometimes those comments are on the ATDT forum, and I'm asked to remove or edit them. (I don't.) I believe in the anarchy of the Internet. I believe in the value of consumer free speech - and even the freedom to say things that aren't fair or even true because it is only in that environment that consumers can actually ever hear real opinions, too. Yes, "consumers." In the US, treatment is provided in a marketplace where supply and demand play an important role. Even in other systems, like the UK's NHS, families need to be alerted to the context of their care.

When people complain about scurrilous critiques I can tell them I feel their pain. I don't control my Amazon reviews or the ugly misinterpretations of what I've done and said that Google can easily find. This is the real world, and the price of having an opinion. It doesn't bother me. It teaches me, actually, and helps me form responses to certain arguments. Live by the sword (of public attention), die by the sword. The opportunity to have real people give their honest good opinion comes with a downside. Most people have become savvy about the Internet and put all information in context. Most are aware of the nature of online reviews: J-shaped, and biased at the extremes.Still, an open, uncontrollable conversation, often anonymous, and often much meaner that one would ever be in person - is new. It's not familiar, and it can be frightening.

The backlash begins, insidiously enough, at our doctor's office: Doctors and dentists tell patients, "all your review are belong to us":

"censoring patients is the wrong way for doctors to deal with online criticism"

June 19, 2011

The last word on insight

Sarah Ravin has published the last word on insight. What it is, what it isn't, and what matters. If you read only one thing about insight, this should be it:

Insights on Insight and Eating Disorders.

The dangers of a great vocabulary

Everyone I know is bored rigid with my favorite word, ANOSOGNOSIA. I bring anosognosia up every opportunity I get, trying to sneak anosognosia into each conversation, spread the use of the term anosognosia as widely as I can, giving pronounciation lessons on "ano-sog-NO-sia" as I go and making anosognosia a centerpiece of my belief that one cannot understand eating disorders without understanding anosognosia.

But, I'm sorry. Because my obsession has obviously spread to my dear friends with unexpected perils:

"MY CHILD got some marks deducted in her RE exam because instead of writing that someone was agnostic, she wrote that they were anosognostic.  Question: do I ask for a remark and explain to the RE teacher that it was not a spelling mistake?"

Oh, dear. I'm a bad influence on children! Can I plead anosognosia of my obsession?

**Anosognosia /ano·sog·no·sia/ (an-o″so-no´zhah) is a condition in which a person who suffers disability seems unaware of the existence of his or her disability. Unlike denial, which is a defense mechanism, anosognosia is rooted in physiology (for example, damage to the frontal or parietal lobe due to illness and disease). This may include unawareness of quite dramatic impairments, such as blindness or paralysis. It was first named by the neurologist Joseph Babinski in 1914,[1] although relatively little has been discovered about the cause of the condition since its initial identification. The word comes from the Greek words "nosos" disease and "gnosis" knowledge (an- / a- is a negative prefix).

June 17, 2011

Slutwalk - there, I said it without quote marks

I was startled the first time I heard the term "slutwalk." I'm easily embarassed by profanity and wildly uncomfortable with the word "slut." See: I had to use quotes around it to dissociate myself from using it.

But Slutwalk is in the proud tradition of other words I can't make myself use like those that start with "N" and "Q" and "F" diffusing the power of an epithet by repeating it endlessly and refusing to be victimized by its use by those who mean to harm. In case you have not yet heard about this, it follows a revolting public statement by a Canadian policeman about how to avoid rape - not dressing like a "slut." As most reasonable people know, rape is not an act of helpless lust induced by the sight of willing women. Rape is an act of aggression and dominance little related to the victim and everything to do with the predator.

Much to my surprise, a day or two after I first heard the term I learned a blogger friend has actually attended a Slutwalk, and describes it.  I'm grateful to her for her post, and her newspaper interview - these are important things for us to bring into the light. I used to work at the Everywoman Center at UMASS, where I answered the rape/crisis hotline. I have known too many women who survived rape or assault - and suffered in various degrees from the experience. We cannot lift all the pain and effects of that but one thing we can do is hear this: "shame and blame belong only to the rapist."

June 16, 2011

Insight, schminsight

As thinking people, we value insight. Naturally, and rightly so, but mental illness can hijack insight to varying degrees and often ingeniously. I'm amazed at the tremendously insightful messages from current eating disorder patients asking "what should I do?" They have, of course, already described exactly what they need to do and why - and how - but the insight is without the power to act. Action is the way out, but insight doesn't always help - no matter how hard we try. Eating disorder patients are often the most thoughtful, insightful, thinking thinking thinking people in the room - but it's like telekinesis: all the brain power there to be mustered doesn't have the hands to move objects.

Insight DOES matter, but it isn't a failure of insight to need to outsource the doing and even the decision-making for a while - or even permanently.


Carrie describes it well when she says This post will be very insightful.

Ashley explores it well, too, when she says Is insight really important in changing our behavior?

Neither are saying that insight isn't important and necessary. It's really more about timing. The insight of a well-functioning person is that of a person free to think independently - in a quieter and more reflective space. That space is what people like me are wishing for our loved ones when we talk about 'anosognosia' and 'life without ED.' It is not an insult or patronizing any more than "you look pale - should we check your blood sugar?" or "that mole needs checking."


As much as we value insight, and should, if it is known to be hijacked then we have a responsibility to help get the person, the full and free person, back in control.

June 13, 2011

The pace of change

Not social change or policy this time: computer.

Ominous blue screen of death, slowwwwwwwwwww running, strange clicking sounds.

Have wasted/spent /INVESTED the day moving my operations (files, bookmarks, passwords, programs, calendar, tasks, messages, addresses, even phone service...) to another laptop so I can back up the old in multiple places and bring the poor thing to the PC doctor.

If you aren't hearing from me, I'm here - weeping, taking to drink, but making progress...

June 12, 2011

Letting parents off the hook? Not hardly

I've had some of the most productive conversations about parents and eating disorders lately - with people who really do represent the opposite end of the spectrum. For years it was hard to get anyone to really discuss this debate from the other side - the conversation was just between like-minded folks.

What keeps coming up is if you say that parents don't cause eating disorders then you are "letting parents off the hook" for things they may have done wrong. That parents can do no wrong and are untouchable during treatment.

Can I put that to rest? It is so far from the truth and all the proof you need is in how parents like me advocate using that information: to ACT. "Parents don't cause eating disorders" isn't a "go take a nap and feel better." It's a "you didn't cause this so stop cowering and get to work: this is going to be the hardest thing you've ever done and you are the difference between success and failure here."

The message "you didn't cause this" goes with the "your loved one didn't cause it either, but all of you have a heap of work to do together, and NOW.

Off the hook? Hardly.

Doctor? No.

With eating disorders, where we can reliably expect three different opinions for every four clinicians - there is peril in blowing with the wind of each consultation. As I spend my days trying to convince families to do their own research, choose their clinicians carefully, be an active part of the team ... I sometimes do want to shake shoulders and say "Snap Out of It!" like Cher in Moonlighting.

I know, not all parents can or will or should. But this really resonated for me:

"Whenever parents want a doctor to tell their kid what to do, you can be pretty sure they’ve lost faith in themselves and overestimated the power of communication/a medical degree....the doctor doesn’t have more power than the parents, no matter how powerless the parents feel"

Doctor? No. | f*ck feelings

June 11, 2011

Bad map

One reason I named our F.E.A.S.T. event in November "The Map Ahead" is that the eating disorder world isn't all using the same map. It would be one thing if most people agreed on the basic topography and were working on Triptiks for each patient: "Take the straight road down into that canyon, there's a road through a pass over there - but watch out for storms..." But we're not. Not only is the journey different for everyone each clinic and clinicians and advocate and book seems to be using a different map entirely.

I believe agreeing on a map is important. It doesn't mean everyone takes the same path, but at least travellers can benefit from knowing what's known to be safer, or better for their situation. We also deserve to know that right now, the map is mostly uncharted - but we've got most people presenting the map as if it is clear and agreed upon. We've got travellers who believe they are being advised based on a well-charted map, but really only a few unconnected islands have been surveyed.

One of the most painful examples of this overconfident mapping is the APA Practice Guidelines for eating disorders. I mean, what parent or clinician can fail to recognize the authority of the American Psychiatric Association, right? If THEY publish something it is surely based on solid ground in research and the membership and the eating disorder field would never let it stand if it lacked basis, right?

Not so much. The Level of Care Guidelines looks so authoritative, and I've had it cited to me by clinicians and journalists and parents many times. It has critical importance for insurance coverage. But the guidelines say that someone who isn't motivated to get better, isn't able to manage necessary meal and behavioral recommendations independently -  needs partial to full-time hospitalization or residential care. Those symptoms pretty much define an eating disorder, and virtually all people with anorexia nervosa.

Those recommendations preclude Family-Based Maudsley treatment and most outpatient care. Odd, since FBT and CBT are the only evidence-based treatments and both are primarily done on an outpatient basis - as is most eating disorder treatment.

So, someone I know tracked down the source of those guidelines and discovered that the only citation to support them is an unpublished paper presented at an EDRS conference in 1998**.

So, why is APA still distributing those guidelines? They have been approached on this, but no changes have happened. Why doesn't anyone protest or seem to care? I've puzzled over this.

Here's the answer I have come up with. Each treatment provider and researcher is using their own map. They don't worry about what map others are using. There is no central authority, no Pope of ED Cartography, to sanction using other maps. Each practitioner uses a different compass and as long as they don't bump into one another along the way they don't argue about it. Each is doing their best, and some I know are doing it very well.

But parents don't know the difference between them. Parents don't know that the map they're given is based on good intentions and not facts. Parents see that each clinician is giving slightly different directions but usually just blame themselves for not understanding.

There's no one to point out the map problem. It is in noone's best interests to do so, or to take the heat for it - people are too busy and they know their own intentions are good. But the parent community is starting to care. A lot. And I'm glad. So I ask you, who and how can we address the APA guidelines?

** La Via M, Kaye WH, Andersen A, Bowers W, Brandt HA, Brewerton TD, Costin C, Hill L, Lilenfeld L, McGilley B, Powers PS, Pryor T, Yager J, Zucker ML: Anorexia nervosa: criteria for levels of care. Paper presented at the annual meeting of the Eating Disorders Research Society, Cambridge, Mass, November 5–7, 1998

June 9, 2011

On diet

Did I startle you with that title? Ha! No, I'm not on a diet. The topic is diet! Dieticians, really.

Another person at AED this year was my friend, Therese Waterhous. Therese is a dietician from Oregon and over the years I've known her I think we both feel there have been positive changes in the field. She and I share a dual interest in helping individual families while trying to change the big picture, too, working within the professional field. We both also geek out on information: throughout the conference in Miami she and I would criss-cross and compare notes - we both love the science of it.

Therese is an example of an individual practitioner out there in the hinterlands working hard to create networks and teams to treat eating disorders and support families facing these disorders. She believes in a true team approach and has worked hard to instill that value in others.

But how common is this, and why does it matter? It's not common, is the problem. Much of what gets called "multidisciplinary team" is really just a couple of clinicians from different fields who refer patients to one another. As a parent and from watching parents negotiate these teams I can say that this rarely works well. The parents, who bank their time, money, and fragile authority with their child on consulting "the experts" only to find that the clinicians routinely countermand one another's recommendations, fail to differentiate their roles, and leave gaps of coverage of issues necessary to creating a full circle of support.

In an eating disorder specialist clinic the specialization and coordination are likely to be better than an outpatient team, but surprisingly often a family finds gaps or overlap or conflicting information there as well.

And what is the role of the dietician? (that's a technical term, and more accurate than the term I like better, nutritionist)  It's a question that I know Therese and others have had to struggle with. Most dieticians are not eating disorder specialists and in fact many have training and orientation that will make their advice actively harmful during eating disorder treatment - especially in an era of "healthy diets" and weight loss mania. Even in the specialty of eating disorders disagrees on the role of dieticians in treatment - Family-Based Maudsley treatment excludes that role entirely. But let's face it: food and eating and feeding are a basic part of ED treatment and few families have a hold on the how and the what and the who without some coaching and education - this is a natural role for dieticians who have specific, evidence-based training.

Many families I know find having a dietician on the team is really important, though they don't do it in the traditional way. Instead of having children and adolescents meeting directly with the dietician many families choose to meet as a family or to have only the parent consult the provider. Later in treatment, appointments often become more centered on the patient and become individual sessions as recovery progresses - still keeping parents in the loop.

I envision a new era of how dieticians work in eating disorder treatment teams: one like Therese advocates. One, working in a dedicated team that has coordinated responsibilities and shares a common orientation to the family. Two, where the family is appropriately central to the educational and accountability responsibilities. Three, using a family-centered approach even with older patients - according to need.

play google guitar, today!

My son plays electric guitar and is going to LOVE this:

Google is honoring Les Paul with a playable guitar "GOOGLE" that even records your strumming.

omg, omg - so cool!

June 7, 2011

One year later: "static cling?"

One particularly emotional aspect of the AED conference deserves its own post. When we all met in Miami it was a poignant anniversary - one year since we had been in Salzburg, Austria for ICED - and got the news of Erin Riederer's death.

Erin's mother, Joan, is a longtime activist in the parent ED community. When I stumbled into ED world and started getting involved there was a group of moms already long at work speaking up and showing up and showing amazing patience at the pace of change - and they welcomed me. Many of these moms are still at it - years and years later. They are my models, and inspiration. People like Joan, and M.B. Krohel, and Kitty Westin keep me grounded and teach me so much.

Last year in Salzburg, I was at lunch with Kitty Westin and June Alexander and Carrie Arnold when Kitty shared the news she'd just learned: that Erin's anorexia had taken her life. The four of us wept and raged. June reached in her pocketbook for a tissue for Kitty - who herself lost her daughter to an eating disorder in 2000 - and pulled out the first soft thing - which turned out to be her daughter's sock tagging along internationally by mistake and static cling. So there in an outdoor cafe we clung to laughter with the tears - and reflected on our helplessness and deep caring for our friend, Joan, who under other circumstances would have been at that cafe with us.

Please never forget that what we are fighting for with our advocacy and our attending and our taking care of one another is this: for Erin. For Joan. For all of us. It isn't an intellectual game, or a chess match. It isn't an empty protest or a party. It's life or death. We are fighting to prevent the ruining of lives, and the crushing of the lives around them.

At Erin's funeral, a group of moms were there, sitting behind Joan. We had the sock, too. We support one another as our right and responsibility and honor.

One year later, many of us were together in Miami - including Joan. She and her longtime conference roomie, M.B. Krohel - one of my idols in the parent advocacy world - and so many people who care not just about Erin's family but about it all - and the connections between us.

For more information on:
POSTSCRIPT: Within 48 hours, F.E.A.S.T. members made enough donations to meet our organization's pledge. Amazing. THANK YOU to those who responded. A collateral benefit: our partners in the ED world now know just how much the parent community cares about this issue and that we put our money where our interests are. F.E.A.S.T. and our members care about science and about evidence-based current information in the hands of professionals!

The campaign continues, and donations are welcome, but I wanted you to know that we met our goal for 2011 on this as far as F.E.A.S.T.'s pledge and THANK YOU.

    AED conference travelogue - healthy conflict

    Really, Laura? Really? It takes a full month for you to clear your desk and get on to writing up your experiences at the AED conference in Miami? Please.

    Well, I say back to me, wondering why I bother arguing with you: better late than never.

    So, I spent five days in Miami at the ICED conference put on by the Academy for Eating Disorders. They run a great conference - packed with content, draws from a range of disciplines and countries, and a real Who's Who of thinkers in the ED world. At my first ICED in 2007 I remember sitting in a corner of the lobby typing "this is like being at the Oscars!" as I recognized the people going by... Every year I know more people by sight, so I can accost them in the hallways with questions - and this year to press flyers for the F.E.A.S.T. conference into their hands.

    I enjoy travel, not least because it means I get to choose food I don't have to cook and stay in a room I don't have to clean.... plus noone is asking me where their favorite t-shirt is or making me supervise homework. So when the airport security screener looked up at me a bit startled and said "Wow. A smile!" I said, "Hey, I'm out of the house!" After which I bet the TSA shadowed me all the way for being a BIT too cheery.

    Arrived in Miami and unpacked and plugged in the dozens of appliances one must carry: cell charger, computer charger, Kindle charger (oops, forgot that), portable wireless charger... why don't they have more plugs in hotel rooms? Met up with Carrie Arnold and we sallied forth to scout the premises. Found Julie O'Toole and Steve Nemirow along the way... who were with, sigh, one of my longtime idols: Kenneth Nunn. I managed not to fall all over myself immediately but before the evening was over did effuse a bit about how grateful I was and remain so for his support back in 2002 when he kindly fielded emails from this strange American mother trying to help her very ill daughter. Made in person acquaintance with Rod McClymont, too. Ken and Rod were great to know throughout the week, for many good conversations on science and policy.

    Mojitos. Shrimp dinner with a lovely cast of folks and a Forrest Gump quiz.

    For those who don't make a hobby of these types of conferences, here's how it works. The conference centers around a large area set up with dozens of exhibitor tables - mostly treatment clinics - and this is the area where coffee and snacks are found. The tables are usually well-appointed, with large pleasant graphics and lots of giveaways (stress balls, mints, pens, sticky-pads...), and well-caffeinated staff. I go from table to table learning about the programs and asking annoying questions like "do you use evidence-based methods?" "how exactly do you involve families?" "who is in charge of feeding and monitoring when the patient goes home?" I do not take any swag, on principle. Though I am sorely tempted by the little brains they give out at UCSD's table.

    The conference schedule for AED is PACKED. Breakfast starts at 7:30 (it is not really breakfast, though - just pastries and a little fruit. Pet peeve of mine. I had to go out of the conference to stand in Starbuck's endless line to get an egg salad sandwich so I didn't suffer a hypoglycemic event. It's an EATING DISORDER conference. Not serving real, sit-down food is like serving little bottles of hard liquor at an AA event. Just saying.), and first public address is at 8:30. There are keynote addresses, speeches, awards, and plenaries all in the big room with everyone in attendance, and then breakout workshops with as many as 11 choices, until 5:30pm.

    Then a reception, and Poster presentations in a room off the exhibitor's hall.

    This goes on for three days. Your brain goes soft and pale and you start to giggle strangely by the third day, and then you notice that some people have a suspicious tan instead and realize you really should have taken a break. Then the last night there's a big loud party and you see your brainy idols doing a conga line and whatever sentience you had left gets you on the lift back to your room.. and you pack to go home, trailing your chargers behind you.

    Ah, but the content. This conference had the best content I've seen. Granted, I cherry pick. And it is hard to choose. Do I go to the session on real world FBT  by Loeb, le Grange, Jones and Zucker? The Who's Who of the Brain by Lask and Nunn (turned out to be the most talked about among my friends since then)? The Internet communities by Ringwood and van Furth.... Well, all of those would have been good choices, but I felt most intrigued by "Does Family Environment Matter in the Etiology of Eating Disorders? An Integrative Paradigm." by Strober. And I was not disappointed. It was intriguing. And, to noone's surprise including Strober, I asked this question - paraphrasing myself here - "What are the iatrogenic perils of talking about otherwise benign parenting behaviors as "influencing" the development of such a dangerous and mind-altering brain disorder?" Strober agreed that this was a risk. Clearly a risk that I worry about more than he does. Now that it is fashionable to pat parents on the head and say "you didn't CAUSE" this but go on and say things about their parenting, we're seeing more of this. There is an epidemic of this kind of language around parents and I'm going on record to say that it is still blaming the family to say "influences," and "unwittingly pushes," "contributes to." We're talking about a family facing a life-threatening illness that requires enormous parental courage and focus to turn around - a time to focus on the big picture. Anything we say about parenting and family issues during that time better be very important. That's a seed that germinates way too well in a loving family, and out of control in less well-functioning ones. I suggest looking at it more like an allergy: if a family gets a dog not knowing that one of the kids has a horrible allergy to it - the allergy is the problem. Not the choice of the dog, or even the dog itself. Do they need to find another home for Fido? Maybe. Allergy shots? Maybe. Lecturing families on the decision to get a dog is beside the point.

    Somewhere in the melee, I got to meet a baby that I've admired from afar - and had lovely Thai food - thank you Sarah!

    Odd phenomenon: two of my favorite ED people were at the conference but over three days I never actually SAW two of them. I was even texting with Roxie, and yet, never in the same room. I'm not even sure I believe Mark WAS there, but he says he was.

    I won't belabor all the sessions I attended, but there were so many good presentations. There were a few that required more coffee and a little peek at the Blackberry, but they are long days. There were a few presentations that caused mark-throughs in my notebook as I scrawled out my disapproval and dismay. But, mostly good and more importantly : fresh perspectives and science. A few highlights to share.

    The Keynote by Timothy Walsh was, even for the non-geeky, worth the early start. "The Diagnosis of Eating Disorders: The Good, The Bad, and the DSM-V" was witty and topical. Aside from hearing the inside story of the process and the reasons for changes to be introduced in V, there was also remarkable humility. Yes, the decisions are being made based on verifiable science, but there isn't much to go on and he acknowledges that. He didn't try to puff it up or make excuses, he explained the genuine complexity of staying within known data AND being useful, as well as the legacy of past DSM efforts. Next time I get frustrated with how "wrong" it all is, I will remember that they are struggling, too - even with the larger DSM authorities - and often can't just do what they want or think would work or even what they believe: they have to work within the structure and published work. You may be startled to hear that he said "We just made this up" when describing the first efforts to manualize diagnosis. He acknowledges that "the DSM really isn't that good." He also said, and I understand "This isn't for amateurs" and "This stuff isn't over." It is good to know that there IS a struggle, not some group of Oldie Boldies plotting to win their points, or be influenced by industry. I know there's politics, too, and money influence, but I applaud AED and the DSM committees and Walsh for taking it out of the back room and sharing it.

    The Plenary sessions are often quite feisty and very much so this year. Plenaries entail a panel of presentations on a theme, and then a moderator or discussant to bring it together.

    The most talked about plenary presentation was a surprise: Poulsen's "RCT of Psychoanalytic Psychotherapy and CBT for Bulimia Nervosa." It is remarkable enough to have an RCT with psychoanalysis in EDs. But for the researcher, who makes it clear that analysis is his field of interest, to report that his results were not as expected and in fact showed CBT to be clearly superior in this trial - was both brave and newsworthy. It was quite a moment.

    There was a public set-to (one of three I observed that week), when a CBT lion, Fairburn, was sharply questioned by Eisler, and even more sharply responded. For those who follow these things, it was a rare view into professional relationships and controversies.

    Another open conflagration: after a rare ED world appearance of the founders of Mandometer presented their approach they were questioned openly by Kaye on the question of financial self-interest - to which Soderstrom said "is that a problem?"

    Box lunches. Just say bleah.

    Um, a word on binge eating and obesity. AED's Keynote said it in the first hour of the conference: the DSM will not define "obesity" as an eating disorder - just Binge Eating Disorder (which may lead to obesity as a symptom, but is also present in "average" weight patients, and many obese people do not have binge eating disorder or any eating disorder). So why were so many presentations about obesity? Why were we subjected to - one during our "box" lunch - two presentations that detailed how to successfully diet? Why did I keep hearing the phrase "healthy weight?"

    The Plenary session that knocked me over was "Is Food Rewarding - clinical insights from brain imaging." It started slow: lots of data on reward processing, addiction, food motivation. Ho hum. But then Kenneth Nunn woke everyone up: he analyzed and questioned each of the presentations, saying how great the presentations were but the conclusions were wrong. Then offering alternate explanations - jaws dropped. Conference organizers paled. Then he looked into the audience and called out leading researchers and declared them on the wrong track, too. He did this with warmth and humor, and offered a new frame to it all: saying that AN and BN were best characterized as a problem with fear circuitry, and overeating as addiction. This is a distinction that not many people are making out there - between fear and addiction - but I bet we're all a lot more conversant on it now!

    Surreal: was in a hallway with a group that included Bryan Lask, and a woman walked up and offered to do a magic trick. He played her Charming Assistant. That doesn't happen every day.

    My own favorite science moment of the week: using weight suppression as a diagnostic and prognostic and treatment tool - presented by Michael Lowe. "The field is focused on food more than weight. Are these eating disorders, or weight disorders? He talked about a very simple measure: highest past weight compared to present weight. He sees diet induced changes as the issue. Level of weight suppression, he believes, predicts bulimic behaviors. We talked afterward and I got more details and predict this will be a really rich line of thinking in the field - or should be. My personal holy grail is finding out how to get away from normative measures of health to individualized ones. Right now, I feel as if people despair of using weight at all as a measure because it 'doesn't work.' I wonder if we add in the variable of weight suppression, we might move forward.

    So, although the theme of the conference was "The complexity of eating disorder: many perspectives, one shared goal" I would re-name it: "The healthy conflict of the eating disorders field: many perspectives, usefully engaged."

    Now, a month late, I can tell you why I packed a tiara. I had the great honor of being invited to a party to celebrate the Royal Wedding. My friends, Susan and Gary, had a group up to their apartment to enjoy treats and bunting. We all went home with silly hats and big smiles, and waving like the queen at one another as we parted...

    p.s. you may recall that there was a bit of an ugly business over a stray email going public during the event. I contacted the emailer when I got home, and we had a long phone call soon after. It was a good call. I learned things. I hope I represented myself well. healthy conflict.

    June 6, 2011

    Why blogging feels so much less lonely these days

    With bloggers like Sarah and Judith, who needs to post original content?

    If those posts don't start conversation, nothing will! It should. Too few people are really coming out and talking: we all talk amongst ourselves and demonize the others. Now, for a while that was due to the fact that those with the ear of the public and the control of the major eating disorder organizations and conferences genuinely didn't think there was any controversy to their positions. Anything that was anti-ED was okay. Disagreement and dissent within the ED world was mostly discredited or simply not heard. Now, with online communities and blogs and comment sections and direct access to consumers and the media things are changing. Open disagreement is happening, and even well-meaning people are being questioned. I say: yay.

    Putting your beliefs out there in public means hearing from one's critics, and it should. Frankly, I'm delighted to HAVE critics. For too long it was a lot of saying things in an empty room. Now, there's more contact, more discussion, and those on all angles of these discussions are developing fluency, maturity, and thoughtfulness in their debates. This is not, generally, fun or comfortable. But if the reactions to these discussions tells us anything it is that there is a desperate need for discussion - it puts everyone on notice that We Do Not All Agree, and It Matters. Not that there are good guys and bad guys and there will be winners and losers but because lives are at stake and we cannot afford to do less than really hear and really think deeply about our own beliefs, not just defend them.

    June 5, 2011

    Blue Screen of Death - Why I may not be very available for a bit

    Live by the sword, die by the sword. Goes for computers, too.

    Blue Screen of Death

    They do not need to look back

     My friend, Charlotte, offers this guest post - one that has meaning on many levels. Thank you, Charlotte!

    You need to look back to see the future more clearly.

     A bad day is a bad day, whatever angle you look at it.  I don’t mean a bad hair day, I mean a really bad day:  The day when the boy who promised to love you forever says “We need to talk”, the day your dog dies, you get fired from a job, get pick-pocketed on pay day, lose a parent, get an eatingdisorder diagnosis for your child, hear the terminal cancer conversation from a close friend.  Those days the world turns black.

    You have to try and pull the threads from your memory of your good days: your first love, your wedding day, graduating, getting the job, the birth of your children, their first words, steps, smiles, the day you finally got Johnny Cash’s “Walk the line”, the overture to the“Marriage of Figaro”,  understandingJackson Pollock, your first proper French meal, a walk in the moonlight, a non-family holiday, your first car, dumping the rat boyfriend, reading “To Kill aMockingbird”, laughing so hard your gut was about to burst, understanding your grandparents, your first dog or cat, your house, your kitchen, your remote control.....sorry pushing the boundaries there.

    There is an upside, if you can just find it and cling on to it.  At the Around the Dinner Table forum, every day we welcome a parent, who is lost, isolated, desperate and disempowered.  Every day, I make a new friend there.  Every day I have the chance to encourage and nurture back to health a sufferer, so they can go on to graduate and leave home, without a backward glance, into a new exciting life, leaving me wiping silent tears of sadness and gratitude.  They do not need to look back.  I need to look back so that I can see how far they have come.

    June 4, 2011

    It's about effectiveness

    When discussing "evidence-based" and the tug of war over one theory over another it is easy to lose  sight of the point: effectiveness. What direction is likely to help more people do better faster?

    Here's a beautiful description:
    Family Based Therapy for anorexia: excellent outcomes

     "Dr. Ellen Davis, cofounder of Woodland Forge in Phoenixville, Pa., is a strong advocate for FBT. “I used to practice traditional psychotherapy with patients with anorexia,” she says, “The recovery time for most adolescents was between 2-3 years. It’s much quicker with FBT. With a younger adolescent I can move them to the point where a parent will say ‘I have my kid back’ in 9-10 months. It’s an amazing approach.”

    (Though I would quibble with the bits about the "the psychological, environmental or family issues that contributed to the eating disorder" That is not part of the approach as I understand it, and that kind of wording leads back down the rabbit hole of blame and shame. A given family may have to make changes to support recovery, but not all, and just having an eating disorder diagnosis doesn't mean there was any other reason or issue or problem - usually, an eating disorder is just an eating disorder.)