May 31, 2010

Guest blog: "each other's specialist fields"

A guest blog post from my friend, Charlotte, on the different roles of parents and others on the treatment team:

"Sometimes I like to think of this concept by using an analogy.

Physics and I don't mix - we never have done and I doubt we ever will. I would no more expect to teach my (daughters) physics than I would expect their physics teacher to treat my d's an(orexia).

However, we do cross over in that I encourage d in her physics homework to work out what the answers are and not let her throw it across the room shouting "This is IMPOSSIBLE". At the same time her physics teacher keeps a gentle eye out for my d to see that she is well, behaving and participating fully in school life (including eating lunch)."

We can't do each other's jobs but we can coax and encourage d in each other's specialist fields, whilst looking out for the health and welfare of the same person."

Eating Disorder Coalition looking for letter writers!

Letterwritingcampaign2010: "Join in our Post-Lobby Day Letter Writing Campaign!"

May 30, 2010

Blogjam catch-up: Treatment

Unnamed eating disorders may go untreated because "no clear treatment guidelines for EDNOS. There can't be."

Bone Marrow Transplant Stops Mouse Version of OCD "bone marrow transplants are too risky to be commonly used against, for example, OCD. Rather, a fuller understanding of the immune system-mental illness connection should produce new treatments." And HERE in another story (thank you, Wendy!).

A New Drug That Decreases Anxiety And Stabilizes Mood?

It may be time redefine "aggressive refeeding."

We absolutely need Predictors of menstrual resumption: "baseline serum cortisol level was a predictor of the prolonged inhibition of menstrual recovery."

And more: Metanephrines, GH, cortisol may predict severe, short-term outcome in women with anorexia nervosa - "specific medical care independently of BMI"

Neuroscience and eating disorders: the role of the medial temporal lobe

Obesity not an eating disorder

I'm glad to hear the news today that "obesity" is not to be considered a psychiatric disorder. I have been very concerned about this idea just as I am about diagnosing being underweight as an eating disorder.

Weight is not a psychiatric condition. Weight is sometimes the result of behaviors driven BY a mental illness, however.

Diagnosing mental illness by weight would be like diagnosing anxiety by bitten nails or OCDs by how clean one's hands are.

May 29, 2010

Blogjam updates: Parenting and EDs

Parenting a Child With an Eating Disorder requires "patience, tenacity, and courage" in an article F.E.A.S.T. media list helped out with.

When I was reading What Should You Expect from an Eating Disorder Provider? I found myself realizing what I don't expect: these kind of really good questions coming FROM a provider. I don't say this as a reflectively negative assessment of providers (something I have been accused of). I say this because providers are generally caught up in doing their job of providing the best care, not marketing themselves or protecting parents from other less introspective providers. I am delighted to see this "put ourselves in their place" post!

Can caring make you sick? - Spoiler: duh!

We need to get to the point where this is intuitive rather than surprising: "differences in disordered eating predicted later differences in parent-child conflict rather than the reverse"

Phone home, honey. Social vocalizations can release oxytocin in humans "children comforted solely by their mother's voice"

"Therapists for years have listened to patients blame parents for their problems. Now there is growing interest in the other side of the story: What about the suffering of parents who are estranged from their adult children?" A terribly common problem for families where the eating disorder does not remit or the treatment causes estrangement.

If only this were explained to more parents: "What mattered most to participants was not whether they had experienced restriction of freedom or choice, but the nature of their relationships with parents and mental health professionals." in a piece on coercion and compulsory treatment.

Blogjam

I'm experiencing blogjam. As I go through my day batting emails out and reading things sent to me and catching up on other people's blogs and getting newsfeeds I generally have a few "gotta blog on that" moments a day. I put these things on my blog queue to write about but they often pile up to the point that I'm making new observations on old news. So the next few weeks will be catch-up blogging, as I just found 40 unfinished posts in the queue!

May 27, 2010

Self-care, whining, and backstage wisdom

The good news - or bad, depending on your perspective - is that I feel much better today.

Aside from feeling a bit silly and exposed for my public pout, I have awakened to a newfound appreciation for the fact that letting people know how I feel isn't a bad thing. Putting a brave face on is, actually, dishonest if one can't stop even when feeling rotten. I'm embarrassed at one level that showing my weaknesses brought on such kind warm and generous responses - but deeply grateful as well. I encourage my kids to "be real" and to accept help when needed and of course this is the nature of friendship as well. Yes, the Internet and this odd real/virtual life of "Laura Collins" are not the same as working at an office but then again sharing an office means knowing when your friends and co-workers are in bad moods and knowing when to drag someone off for a latte.

There is a lot more I could say, mostly iterations of the words "THANK YOU," but I will let something that happened last weekend illustrate my morning revelation.

I had my yearly tap dance recital on Sunday. It's a small town and a big dance school and the recital concert is for everyone from the 4-year olds in tutus to the 70-year old Snappy Tappers. Hundreds of my fellow citizens were out there in the dark. Backstage I was, as usual, assuaging my nerves by insisting I just like to dance and have no interest in performing and wish I didn't have to "do this."

My classmate, who has been very patient with me, looked me in the eye and stated the obvious:

"Laura, it is a 'performance' art."

May 26, 2010

Bothered. Bothering. Why?

Peevish sulk alert.

This morning is one of those times - they happen every once in a while - when I ask myself why I'm living this very public life in pursuit of a cause. Why blog/comment/post/twitter/facebook/respond/show up/engage/reach out/network?

I wonder why I handle the disapproval and disdain of lots of people but a handful of individuals manage to wound me so personally.

This is the kind of morning I start planning the end game. I had a life that I'd like to go back to. I have a life ahead of me that is far more private and quieter.

Most days I have an answer to those questions: because it helps, because I'm human, and "not yet but soon."

Today, I confess, the answers are: "not sure," "inexplicable," and "how about today?"

I'll see how I feel tomorrow.

I'm not fishing for support here, just doing an "ecological assessment" in public - which I guess answers the question of "why blog?"

May 24, 2010

Why brain problems need to be seen for what they are

As glad as I am to see Software Program Accurately Assesses Body Image in Patients With Anorexia it won't help us unless we also get rid of a deep societal distrust of larger body size.

It also won't help us unless we understand that brain-based distortions can't be reasoned with.

Imagine feeling 10% larger - or smaller, or taller, or shorter - than you are. Physically feeling it: seeing it in the mirror and feeling it in your limbs. Life will be constantly distressing as you try to reconcile it every time you breathe, walk, stand up, reach out to touch something. Imagine those around you don't understand and argue with you. They minimize your perception and your distress. You feel unsettled, mistrustful, disoriented. Imagine that you have a way to get rid of that feeling: eating less. When you eat less your feelings numb down. When you eat less you believe - both rationally and magically - that you will be smaller. That you will be more like what you feel you "should" be. But it doesn't work; the bar keeps moving. Your anxiety about not slipping back gets worse. You build rituals around keeping that anxiety away.

That is what I think of as body dysmorphia. I don't think we can talk people out of it. I don't think they get it from overvaluing thinness - I think it is a problem with the brain. I think we need to have compassion and insist on the best treatments. I think we need to understand this disjunction is not a choice or vanity.

Body dysmorphic disorder, which often involves misshapen limbs or facial deformation, can be successfully treated, for many people, with SSRIs. For those whose dysmorphia is caused by malnourishment**, regaining a healthy body composition can successfully treat the condition. Many eating disorder patients feel smaller once they gain enough weight: they repair the disconnect.

Frankly, I don't think we need this empirical test for the patients' sake - science already knows what they need. We need this test for the rest of us: so we understand and believe what they are experiencing and make sure they get the treatment they need and not more misunderstanding and alienation.

** This symptom is NOT seen in all eating disorder patients, especially children, and in those living in cultures less morally enthralled by thinness, and should NOT in my opinion be necessary for diagnosis. I would also be very concerned about too much focus on this kind of test and implanting a fear of larger body size in those who may not already have it. There is a validation of size phobia inherent in testing people for it!
***For an excellent and well-thought out theory on why malnourishment would bring on dysmorphia, read up on Guisinger.

Born to run?

It didn't take me long after falling down the eating disorder rabbit hole to realize that one's desire to eat and ability to stop eating are not as obvious as they seem. It used to seem simple that eating was a conscious choice and pushing away from the table a thought process as well.

I was wrong. It is much more complex and a lot of things can go wrong with the complicated systems behind hunger, seeking food, satiety, and self-regulation.

Not long after I 'got' this, I realized that there was probably a pretty complex set of less than conscious mechanisms involved with physical activity. I've blogged about it before and I think we may want to look at the drive to exercise as far less about choice than we've assumed. People who fall on the far ranges of this - unable to find the drive and those with too much of it - may need more than chiding and deriding: they may need treatment. It isn't healthy to remain too sedentary nor is it healthy to go beyond one's needs for physical challenge.

More fuel for that fire: Do our Genes affect our desire to exercise?

May 23, 2010

Attachment, Parenting and Childhood Mental Illness

This moving essay by NAMI's medical director contains many gifts, including a "refreshing humility" and a positivity about parents and love and the "capacity for health" for our kids:

Attachment, Parenting and Childhood Mental Illness

"I have also seen in my practice that kids who live with psychiatric conditions are not defined by them--they have real strengths and gifts that can be forgotten in the storm of a psychiatric presentation. I also have noticed that kids have a tremendous capacity for health--they often improve, sometimes dramatically with the right package of help. And it is the love, trust and security created by the parents - the attachment that my field had formerly so pathologized - that often makes all the difference for them."

And isn't it fascinating that the comments on that essay are so often reflexively negative? This essay just shouldn't be controversial or in need of negative rebuttal. Why is there such an investment out there in villifying parents? It is a black/white thinking that equates saying something good to saying that all things are good. Some parents suck: we know. But celebrating good parenting shouldn't trigger an open season on bitterness and regret.

May 21, 2010

NEDA Navigators

The National Eating Disorders Association in the US is rolling out a new resource: The NEDA Navigators - a way to connect experienced parents with ones newer to the diagnosis.

If you are interested, NEDA is holding a Webinar for training on June 17. Join the PFN at NEDA to get details on registration.

NEDA Navigators "serve as a volunteer support person providing encouragement, hope and access to resources for families, friends and individuals whose lives are affected by eating disorders. Those who are eligible to be a NEDA Navigator must have a family member or friend who is significantly along in their recovery, or be well into recovery themselves."

May 20, 2010

Author seeks Family-based Maudsley success stories

Becky Henry, of Hope Network, is working on a book about recovery and she's looking for some Family-Based success stories to include along with other narratives she has collected of caregivers and patients. She is using pseudonyms, so your privacy will be protected.

If any of the following apply, please contact Becky - she is a lovely lady and a parent who "gets it" who is working to support families and the eating disorder world with better information.

Getting the range of stories out there - especially positive outcomes based on newer thinking - is so important. One of the things F.E.A.S.T. can do so well is broaden the conversation out there on what helps, what works, and how it affects us!

1) The family of a male patient
2) A family with a younger patient (under 12)
3) Family of an older patient with bulimia

Contact Becky at: Becky@hopenetwork.info for more information. She's on deadline, so please act soon if you are willing.

I would be so grateful if you would consider this!

May 19, 2010

First, do no harm

I'm not convinced that you can "prevent" eating disorders, and this caution puts me at odds with many of my allies in the eating disorder world. I believe eating disorders are an underlying condition in the brain of certain people and that some combination of stress and malnourishment turn it on, like a secret password.

It could be that if this password is not activated during critical periods of development that it loses its power to activate - so if we can get an adolescent with this predisposition through young adulthood without a diet, serious flu, or traumatic experience they may never turn it on. Or, alternately, we may be able to protect these potential patients with extra supports and skills so that the activation lacks the power to rise to a real problem. I don't know, and I don't think anyone does. There's a lot of well-meaning certainty out there, and it is worrying.

I also think it is possible that people with this predisposition are driven toward the triggers, like the girl in the fairy tale whose parents protected her from every sharp object but one, and that was enough. The attraction to certain sports, certain friends, certain media - these could be driven from within rather than imposed from the outside.

We do know that with all the well-meaning prevention efforts out there there still are no validated effective eating disorder prevention methods. We know that educational programs about eating disorders are likely to backfire. We know that educational programs focusing instead of self-esteem and body acceptance have at least short-term effects on whether young people take up dieting and unhealthy eating and exercise - but not whether this delays, or even worsens, future eating disorders. We just don't know.

In the vocabulary of eating disorder prevention there are two categories: primary, and secondary. The first are society or community-wide efforts. The latter are targeted to people identified at high risk. Secondary prevention is what I would call "early intervention." These programs attempt to turn around early disordered thoughts and behaviors. Again, we don't know whether these efforts are effective.

So, where are we? How can those of us worried about the risk of eating disorders in young people do a better job of heading them off?

I am a huge fan of the school of thought in a growing number of people in the field and explained well here by Katja Rowell: First, Do No Harm.

May 17, 2010

Told you so

I know. When your child is ill, of this very confusing illness, the ground feels like quicksand. You call out "help" and aren't that picky about who throws a lifeline or suggestion. But the advice you get is coming from all directions and it is all different: do this, don't do that, hurry up, slow down, read this, don't believe that.

Being frightened and out of your comfort zone, you grab at whatever solid rope you can get, right?

Please don't let anyone tell you what to do. It is vital to distinguish ideas from instructions. People may be talking to you, have lots of ideas, and care very much that you see things from their view, but you still have to decide for yourself.

It worries me when I hear a parent say "the therapist told us to..."** When in reality what your friends or me or your therapist say is usually not meant as an instruction it is an idea. We can't take responsibility for your decision and - this is the important part - very few people are expecting you to take what they are saying as a command that supersedes your authority as a parent.

I used to think I would get in trouble with our child's therapist if I didn't do what they suggested. I thought that meant I was going rogue and would no longer have their support and trust. I later realized that wasn't the case: the therapist expected me to make my own judgment and to use her suggestions as part of my decision-making. I had to learn to say "We're not comfortable with that. What about X?" or "No, that isn't going to work for us right now."

Of course there are therapists and other professionals who expect us to follow their advice and will be frustrated with us when we don't. There are clinicians who consider treatment decisions to be theirs to make and ours to follow.

I think it is good to ask. This is part of working with our clinical team: knowing what is a suggestion and what is an instruction. Our kids need to know this, too, because "My therapist TOLD you to" and "The doctors says you are not supposed to.." are gifts that last all week between appointments.

Know what your clinical team means when it tells you to do things, and whether they expect you to speak up if you disagree or have other plans. Know whether you are being coached, or instructed. Trusted or managed. Taught, or schooled.

We are the ones in the quicksand, and we are the ones who will live with the consequences.

**PS this also applies to advice from family, friends, Internet forums, and bloggers.

May 16, 2010

Calling artists to donate work to help families get care at Duke Center


An announcement from Nancy Zucker at Duke's Eating Disorder center:

I don't disagree with the data; it disagrees with me.

This explains so much.
The Scientific Impotence Excuse:Discounting Belief-Threatening Scientific Abstracts

The scientific impotence discounting hypothesis predicts that people resist belief-disconfirming scientific evidence by concluding that the topic of study is not amenable to scientific investigation. In 2 studies, participants read a series of brief abstracts that either confirmed or disconfirmed their existing beliefs about a stereotype associated with homosexuality. Relative to those reading belief-confirming evidence, participants reading belief-disconfirming evidence indicated more belief that the topic could not be studied scientifically and more belief that a series of other unrelated topics could not be studied scientifically. Thus, being presented with belief-disconfirming scientific evidence may lead to an erosion of belief in the efficacy of scientific methods.
But, is "disconfirming' really a word? (Prove it!)

May 13, 2010

Yes, I know Oprah is planning a show on eating disorders

Yes, I heard.

After Oprah's new network put out notice of a planned Inside Rehab show following eating disorder patients I got a rush of emails and news alerts and the ED blogosphere and message boards lit up with Oprah's name. People wrote telling me to get on the show, and people wrote me asking how they could get on the show. Some people started protests, and others called for deeper thought on the matter.

I don't have the pull to be heard by Oprah but if I could I'd say this: "Don't do it."

Unless you are going to do the homework to understand the most recent science about this illness and evidence-based care, Oprah, please don't do this show.

By the time an article and especially a TV show topic has been assigned there is a storyline to be followed. If what you are willing to say, or they can get you to illustrate, fits into the story then you make the cut. If not, you go - not the original idea.

That is why I'm not looking forward to this show or particularly interested in helping people get on it. The promotional information already tells me all I need to know about the direction of the editing: sensationalist, about victimization and transformation, and based in residential treatment. The chance that there would be information about the biological underpinnings of the behaviors and thoughts of the patient is vanishingly remote. The work of recovery will be about insight and a life-changing moment - not the real work of eating disorder recovery which is both medical and incremental cognitive re-building. The likelihood of there being a history of abuse or neglect is high. Parents who are supportive and normal? I doubt it.

In other words, this will be entertainment and not educational. It will be alienating and not helpful.

I would walk over broken glass to get good information about eating disorders directly to Oprah and the chance to get that information to the public. Her power to change society's views is enormous and I would be happy to have access to that but the time to get that access would be before the story is already conceived.

There is power here to do good, but also power to do damage on an enormous scale as well. Don't do it.

**Good news, though. Oprah has announced she isn't going to diet any more. She realizes her issues with food are in her mind and not her weight. I'd argue with her about how to address that, but it is important that public figures stop going on public diets. Dieting is an unhealthy and futile activity and sends a terrible message to kids.

May 12, 2010

Parent's primer on eating disorders: give this page 63 minutes

Okay, I have a new favorite resource for parents!

In 63 minutes, broken into pieces for your convenience, Packard Children’s Comprehensive Eating Disorders Program has provided videos from the "It's Time to Talk About It" Panel Discussion they did for National Eating Disorders Awareness Week this year and it is absolutely wonderful.

I can honestly say that a parent new to this diagnosis will get a better start by watching these well-done presentations than anything else out there. These are authoritative, accessible, and up-to-date.

Watch them all, but take special note of the last video clip, by Dr. James Lock. What he says in that tape about the history AND THE PRESENT is vitally important for parents and for the rest of the eating disorder world to hear.

It is time to talk about it, but more to the point it is time to STOP talking about some things as well.

May 11, 2010

Palliative Care for Anorexia Nervosa

I celebrate and applaud Dr. Ravin's recent post about palliative care.

Patients don't fail treatment. We fail patients by thinking they choose to be ill and making them choose to stop. Anorexia isn't going to change; we must.

May 9, 2010

Thanking those who make our Mother's Days happen

This is a wonderful day to celebrate the people who make it possible for mothers to BE mothers to their children on Mother's Day and all year:

To the therapists who take to heart "Family-Based" Maudsley therapy and empower mothers to take steps to protect and support their dear children.

The nutritionists who welcome parents into the room and into help us understand what exactly is "about the food."

The physicians who look into our suffering children's eyes and say "Your mother loves you and I trust her to help you."

The insurance administrators who recognize the parent's role with an eating disorder is little different than with any other grave illness.

The teachers and school staff who offer to provide meal and emotional support at school, making one more safe place for recovery.

The website operators who agree to edit their content to remove parent-blaming language.

The grandmothers and grandfathers who set aside their doubts and learn a new way of supporting their grandchildren.

The friends who do more than nod. Who bring tissues and casseroles, read what we give them, and truly listen.

And of course, with special honors, the husbands and exes who step up without judgment and learn how to help mom be mom in one of the hardest times of their lives.

Mom, It's Not Your Fault

My friend, Jenni Schaefer, has offered a Mother's Day gift to her mom and to all of us:

Mom, It's Not Your Fault

I know this essay and video will be a comfort to so many moms out there who are struggling with guilt and paralysis. It is time for moms to set down the guilt and get back to being moms. Supporting a loved one through eating disorder treatment is one of the hardest tasks we can do, but also a role that no one else can do with the dedication and bravery that we can.

Recovered patients like Jenni and my own dear daughter inspire me every day - they are who we are fighting for!

May 7, 2010

The missing link between Freud and Oprah

Theories come and go. The legacy lives on, however, in families harmed by unfounded ideas and in attractive psychobabble and in a cultural bias toward freeing the mentally ill from their families.

Alice Miller, Psychoanalyst, Dies at 87 - Laid Human Problems to Parental Acts

I'm a daughter and a mother, and I believe in the power of mothers to do great good and great harm. But there are some things we have neither the power to do nor to prevent. The legacy of judging the parent by the depth of illness in the child is not only unhelpful it is corrosive to all families it touches.

May 5, 2010

When Medicine Got it Wrong

I have often compared the way parents of schizophrenics were treated decades ago to the way parents of eating disorder patients are often STILL treated: harmful, unnecessary, ignorant.

This film tells the story of how that changed with schizophrenia, and it is wonderfully done:
When Medicine Got it Wrong

And I once got the chance to tell the filmmakers that!

May 4, 2010

Healthy Place blog post update

Catching you up on my posts at Healthy Place:

What Does Everyone in the Eating Disorder World Have in Common?

Wednesday, April 28th, 2010

Obesity Prevention and Eating Disorder Prevention

Monday, April 26th, 2010

The Difference Between Family Therapy and Family-Based Therapy for Eating Disorders

Wednesday, April 21st, 2010

Your Child With an Eating Disorder Has To Gain Weight, But Do You?

Monday, April 19th, 2010

Disordered Eating and Eating Disorder: What’s the Difference?

Wednesday, April 14th, 2010

DSM: Does It Matter How We Diagnose Eating Disorders?

Monday, April 12th, 2010

Fear of Frying: Why Parents of Anorexia and Bulimia Patients Dread Mealtime

Wednesday, April 7th, 2010

Was this Classic Children’s Book Written for Parents of Eating Disorder Patients?

Monday, April 5th, 2010


Plus a few video and audio posts as well, available on my HP blog page



On "Palliative Care" for eating disorders:


On parents losing their children:

On Lobbying Congress:

May 2, 2010

The “I don’t knows”

Eating disorder patients often have trouble describing their emotions. There is a name for this: "alexithymic."

From the F.E.A.S.T. Eating Disorders Glossary: Alexithymia

Alexithymia is a concept that defines the inability to identify or express emotion. Studies have shown that individuals in the acute stages of anorexia nervosa and bulimia nervosa score significantly higher on alexithymia tests than those who have recovered. Source

It is one thing to recognize it, but responding to it is another matter entirely. I really like Grey Thinking's diagram here: The “I don’t knows”

Parents may want to print this out for reference!!

May 1, 2010

Photos straight from MEDA conference


Just received an email straight from the MEDA conference, where F.E.A.S.T. volunteer M.B. Krohel is standing behind our exhibit next to MEDA's Beth Mayer RIGHT NOW:










*Special thanks to Wendy O for sending the pics!