June 28, 2012

In very poor taste

No, not discussion of the Supreme Court ruling on healthcare today (don't go there!).

On this: Evolutionary biology: The lost appetitesEwen CallawayNature

Only fellow ED science enthusiasts will get why this immediately resonates and connects to eating disorder research: “The whole story of the evolution of taste is really the evolution of loss of taste.”

Thank you, Chris - wonderfully geeked out coolness!

June 24, 2012

The unicorns are growing up!

So I've been 'at this' for over ten years and that means I've seen countless families face eating disorders and then move on. I now hear from the parents and the children, now adults, of those families and I'm struck by the fact that these kids would still be ill or dead had their parents listened to the popular wisdom at the time. There is a new generation of recovered people and they are different than the recovered people of the past. The narrative of recovery is shifting from tales of victims to stories of family courage and professional skill.

As I get graduation pictures, wedding pictures, and baby pictures I also get Masters' theses and manuscripts: these young people are living rich real lives. I'm hearing insights and witnessing action by a cohort of people who in an earlier era would have been expected to languish in illness and misery. Why? A different professional stance toward family and the biological nature of mental illness.

More and more patients are like my daughter who is now an independent and healthy adult (and one of my closest friends) because of the work of eating disorder professionals who empowered her father and I instead of telling us to let her figure it out on her own. I'm seeing a cohort of young adults who are pursuing or enjoying careers that have nothing to do with eating disorders. I'm witnessing young parents who are lovingly connected with their own parents. There are siblings who have aunts and uncles who are fully engaged and grandparents not consumed with worry for their children's children.

Instead of counting the cum lauds, I hear from parents whose deepest pride is for loved ones who passed on the highest honors to take time for music, or travel, or fun. Moms and dads are telling me anecdotes about family trips and kindness to great-grandma and moving in to the house down the street. In other words, these families are enjoying the benefits of mental health.

People didn't believe in these unicorns 20 years ago -- an eating disorder diagnosis was a shameful mark and there was little hope of normal life. Some people still don't believe that early intervention and parent involvement matter -- they continue to believe an eating disorder is evidence of deep damage and lifelong struggle. Soon, these pessimists will be rare and mythical.

Thank you, Eleanor, for your message last night that reminded me. There's a herd of unicorns gathering and you are so gorgeous!

June 23, 2012

Number 2 and 3 are in your hands, parents!

Here's a tough truth: parents can make or break treatment. We can't tiptoe around this. Treatment can fail for a lot of reasons but most of them are really in our hands.

Dr. O'Toole at Kartini describes it just right, and cites some Australian research which backs it up:

What Helps Children

"three factors determine outcome in children with anorexia nervosa:  
  1. severity of illness  
  2. parental unity with treatment team 
  3. parental ability to enforce the meal plan/re-nutrition."

I'd add to this that you need to have a treatment team that believes parents should step up and be in charge of feeding, and works to strengthen #2 & #3 and not work against them. The truth is that the great majority of treatment available to families does neither.

Keynote speaker for F.E.A.S.T. conference is chosen!

Written by: F.E.A.S.T. 
Friday, June 22, 2012  RssIcon

F.E.A.S.T. is overjoyed to announce Jeff Bell as Keynote Speaker for the 2012 F.E.A.S.T. conference in Alexandria, Virginia.

Bell is a noted author, speaker, and journalist whose public advocacy for Obsessive Compulsive Disorder has inspired and educated the public for years. He is national spokesperson for the International OCD Foundation and a 20-year veteran of radio and television news and currently co-anchors the afternoon news at KCBS Radio, the CBS Network’s San Francisco flagship and one of the nation’s most respected and successful radio news operations. He is also a regular online writer for Psychology Today.

Register today!

June 22, 2012

A heartbreaking, horrible video

I could only bring myself to watch half of this video. You may not want to - it is enough to say that this woman there to protect children on the bus is taunted, mocked, and called names by middle-school children while she cries. A bit of my worldview was shifted.

Bullied bus monitor not ready to forgive — but family accepts one parent’s apology

These children must treat one another this way, and themselves this way in their own heads. This vile, ugly, grotesque behavior reveals something rotted and frightening -- and I'm not completely sure what that is. To be one of these children, to be around these children, to maintain one's humanity surrounded by them... I despair.

Have young people grown so coarse, so unmoored from civility, that this is normal to them? Is this new? How does this happen?

Really, I'm sickened. I feel genuine fear to think of my children exposed to that, inured to it. It's dystopian. It's feral.

I rarely feel this, but, I despair.

I'm a fruitcake!

Refreshing essay by an MP on revealing one's mental illness:

I'm a fruitcake!

**Thank you, Charlotte. LOVE it.

June 21, 2012

my ICED presentation online

The plenary presentation I gave at the May 2012 International Conference on Eating Disorders in Austin is now available online and for download. The slides, with text or as a PowerPoint presentation with audio, are available now on the F.E.A.S.T. website.

This opportunity to speak at ICED was one of the most challenging assignments I've ever had. It was an honor to be part of this panel and have the chance to speak to the eating disorders professional community about the language that parents and carers use and why I do think it is time for 'new language' and a new way of talking with families. 

I know the plenary, and my language use, have been controversial in some circles but I truly believe we are entering a new era and understanding of these disorders and the language needs to reflect that. There is no reason to be afraid of the word brain, or the newer advances. There is also no need to reject the knowledge of the past that stands the test of time and science. We do need to communicate better and refuse to divide on the issue that matters: getting patients well.

Dragonflies and connection

A stirring message from a mother of an eating disorder patient, 12 years after her daughter's death.

June 20, 2012

June 18, 2012

over 50 with an eating disorder?

Do you have an eating disorder and you're over 50 years old?

A friend of mine is working on a piece and hoping to interview some patients over 50 in the US. If this is something you'd consider, I'd really appreciate you contacting me and I'll put you in contact with her. She can give you the details.


EDC announces progress in ED research funding in US

News out of Washington from the Eating Disorders Coalition!

EDC Wins Big for Eating Disorders Research

recipe for a science story

For all my dear friends who, like me, find ourselves regularly staggered by the bad science journalism that the public loves:

Dramatically titled neuroscience story

Question about your life. Introduction to a thematically related tragedy.

Promise of hope.
Over-simplified premise. Mention of a brain part and an inadequately explained technology in the same sentence.

June 16, 2012

My partner

Last night I was holding hands with my husband and marveled at how fortunate I am to be married to my perfect best friend - the smartest, funniest, most interesting man alive. I don't know if I deserve him, but I sure appreciate him. This is how we are together:

It's not force feeding, but it may be too late

My problem with a judge compelling a dying anorexia patient to be fed is not the action but the timing. This patient and her family had, it seems, accepted her coming death. She was in palliative care after suffering years of anguish. Why do we wait until this happens?

Why do we consider patients to be "choosing" not to eat unless they are already gravely medically ill? Were the decisions more reasonable early on? Is a choice to starve yourself a bit, but not too much?

I believe patients should never be "force fed" any more than they are "force revived" when drowning. The problem is that we're not recognizing anosognosia and we think that food is somehow optional and don't see that the inability to eat is NOT A CHOICE.

Yes, I know this is what you are thinking. But is is not.
People with an eating disorder predisposition often lose their ability to think clearly when they are undernourished. Think of it as temporary partial blindness.

I've talked to plenty of former patients who are grateful that their family and clinicians did what needed to be done even when they were saying "I can't" and "I don't want to" and "I'd rather die."

Lack of insight and motivation are known symptoms of malnourishment. Without restoring a patient to normal brain function and waiting for brain repair we simply don't know what that person's real and lasting desires are. The evidence from people who have survived suicide attempts also bears notice: they most often regret their actions and want to live.

THIS is how I think of making sure anyone with an eating disorder history
 is getting 100% of the nourishment they need in a safe, protective
 environment. Eating every meal is no less urgent that breathing every breath.
Our job is to help those in despair, get them well and keep them safe - not to torture them by leaving them without treatment and support until they are nearly gone, and revive them only to start the process again.

It's not force feeding. And it shouldn't wait. Every meal, every day is essential to mental health for ED patients. If they can't, it's our job and it is US who have failed - not the patient. Our customs, our laws, treatment availability, and our thinking HAVE to change. We are torturing and killing these patients.

June 15, 2012

neither rare nor epidemic, but absolutely life-threatening

Eating disorders cause misery, and a frighteningly high number of sufferers die.

Carrie Arnold has come out with a campaign we can all stand behind.

Eating disorders aren't rare, so anyone who tells you they've never met someone is wrong: they just didn't recognize it.

Eating disorders aren't an epidemic threatening everyone, either. That argument is well-meaning but false and harmful: it leads people to dismiss eating disorders as just a normal part of life or an inevitable result of toxic society.

One in 20 is a lot. That is why, as NEDA puts it, "everyone knows somebody."

The "one" needs to know that he or she is not alone, and will be taken care of and supported. That "one" needs us to step up!

June 13, 2012

Extremes are easy

This article about healthful levels of exercise will confuse and upset people. No one likes to be told not to do too much of something they deem "good." The idea that 15 minutes a day is not only enough but healthier than an hour a day will make some people apoplectic. We LIKE feeling bad about doing too little. We expect to feel bad unless we're doing more, and good enough can never be reached.

What if the quest for perfection and virtue is in just doing some? Nah, that'll never sell.

June 10, 2012

Last dance... on stage

I love dancing. Always have. I put on tap shoes nearly every morning and dance - often in the dark - before my day gets going. I feel invigorated and vital and, every once in a while, sublime.

But I hate performing. This may surprise my parents who had to endure my earnest  pirouettes while I said "watch me!" before I became the torturedly self-conscious creature I was from kindergarten to.. well... my 30s.

Last month I had to give the most intimidating speech of my life but what really completely unglued me was the yearly recital concert two weeks later. It's not that I dance so terribly, but that the stage fright vacuums any pleasure from it. Dread was my constant companion for weeks. I stopped loving to dance. I don't tell my family or friends where the performances are - I couldn't bear for them to worry about my worrying.

I'm proud of myself for pushing my boundaries for the past few years and performing with my class. They're wonderful dancers who love performing. But I realize that for me, dance is not a performing art. As I took off my taps that day I knew it was the last time on stage. Just because something scares me doesn't mean I HAVE to do it to prove I'm brave.

I'll still go to class, and I'll still dance, but I'm going back to loving it.

June 9, 2012

UK friends: two-day conference for families and professional teams

Great F.E.A.S.T. News:

F.E.A.S.T. UK is delighted to announce a two day conference, on Friday 23rd and Saturday 24th November, in Nottingham for all families and professional teams involved in the ECHO (Expert Carers Helping Others) project, members of F.E.A.S.T. (Families Empowered and Supporting Treatment for Eating Disorders) and Maudsley Carers.  

The objective of the conference is to meet, learn, discuss and exchange ideas and offer support, help and advice in a warm, relaxed and friendly atmosphere.  

We will be having a keynote speech on Friday 23rd November by Professor Janet Treasure, Professor South London & Maudsley NHS Trust Director Eating Disorder Unit and Professor Psychiatry Guys', King's & St Thomas' Medical School, London and a member of the F.E.A.S.T. Advisory Panel. 

Susan Ringwood, CEO of Beat and a member of  Professional Advisory Panel for F.E.A.S.T. will be talking about what carers can do and how families can help as well as the Beat Carers Workshop project.  

Gill Todd, retired Head Clinical Nurse of Eating Disorders Unit in the South London and Maudsley NHS Trust will be doing Carers Workshops for both professionals and families.  

We will also be having a presentation and discussion with Dr Maria Finnis (John Radcliffe) and Dr Rachel Polonsky on the power of the internet and parents.  

There will be presentations by various F.E.A.S.T.members, including Fiona Bromelow (FEAST Board Member and BEAT Carers Ambassador) and Charlotte Bevan (C&M ED Productions
on You Tube).

Howling at Wolves

I am a feminist. Unapologetically and without parenthetical demurral. I believe women are unfairly regarded and treated and that social justice and quality of life require equal rights and a rejection of misogyny. I shouldn't have to provide my bona fides on this, but I find I often DO because my assertion that EDs are not a feminist issue (or a female issue or a symptom of sexism) tends to lead to questions about my own values.

I won't bore you with details, but my lifetime commitment to feminism is genuine and -- as it should be -- isn't always easy.

Questioning Naomi Wolf is a sacrilege to feminism, I know. It puts me in bed with people with very different fetishes. But question I do, and have.

I believe the assertion of an eating disorder epidemic and OUTRAGEOUSLY wrong statistics on prevalence have done more to hurt ED advocacy than Wolf has ever helped. Yet I've sat unsmiling, literally, amid standing ovation for Wolf's poor grasp on facts or logic.

That's why I find such comfort and feel such gratitude for Tetyana, and for ELT, for speaking truth to Girl Power here. The one chance I had to talk to Wolf made me so sad. She has spent so many years being lauded and thanked for her facile ideas about EDs and it must be hard to have the same sort of moxy SHE dared to have in a hostile past calling her to account now. But we should.

Eating disorders don't have to be a feminist issue to be important, and the objectification and denial of women's rights doesn't have to cause eating disorders to be important to us.

June 8, 2012

Drug treatment for binge eating disorder

There are no psychiatric drug treatments for anorexia. Normalizing food is the most powerful drug there.

Bulimia does often respond to drugs, but parents rarely hear about that I'm afraid. I'm guilty there: I should talk about it more.

Now, we're seeing more help for Binge Eating Disorder through drug treatment. This is good.

BED is a devastating mental illness and although it is more common than anorexia or bulimia it still exists as an afterthought in the ED world. The Binge Eating Disorder Association is doing amazing work to change that, and have just announced their next conference.
What's your visual image of Binge Eating Disorder?
Well, mine isn't an image of a heavy person eating junk food
with the head cut off to hide her shame - sorry.

I look forward to the new DSM, which will take BED out of the ED-NOS category and list it with AN and BN. This is (slow) progress.

We activists must also adjust our thinking.

Here's an observation. SOME of the resistance to including BED in our thinking is fat phobia. It's sad to think that a community that is often fighting the symptom of pathological fear of larger bodies in patients may actually JOIN that fear. It is long past time for us to stop allowing that sort of thinking. If you care about eating disorders you are not going to have the comfort safety zone of excluding BED any more.

The science on BED is growing faster than that for other eating disorders, my friends. Guess why? Money. There's tremendous energy behind anything that can be sold as anti-obesity. Sad but true, as people of large body size do not all have BED and not all people with BED are of larger size. We are going to see science perverted and sold and funded because of misunderstandings about the nature of mental illness: sound familiar? Time to stop focusing on body size and see that we need to align together.

Don't sit down!

At least one of these folks will be familiar to you. Great work, Eating Disorders Coalition!

June 7, 2012

"just one sentence"

Oh, for pity's sake!

"Just one sentence could put your daughter or son on a path towards an eating disorder"

Really, people? How is this sort of thing credible? Are people really SO mental health illiterate that they think one sentence can cause madness? Do they believe that mental illness is standing next to them at any moment like a devil?

"Why do women hate their bodies" is a good question, but one of the many answers can be a mental illness and nothing to do with experience. By continuing to see the body hating of a mentally ill person as the same as the body hating of the general population we serve neither well. In fact, we harm the most vulnerable of all without helping the rest of us.

Of course parents should be promoting positive self-esteem and body acceptance. Of course we can have a negative influence on healthy kids. But this absurd notion that parents can cause mental illness with a sentence - or even a whole lot of sentences - is dangerous stuff.

Why? Because 3-5% of kids are going to develop an eating disorder and the first question is going to be "why" and there is not a parent alive who has never said a negative thing about him or herself. Look no further: guilt, paralyzation, poor decisions ensue. And yet, there's just NO PROOF that "one sentence" or even a lifetime of body bashing causes this mental illness. Do patients say it does: yes. Does it "look like" it does? Yes. But what year is this? Do novels make young women go insane? 

This new word "Thin-heritance" is noxious, stale, and rancid. It's the exploitation of a very serious mental illness in the service of a (worthy) social cause that doesn't NEED a deadly illness to make it important.

June 6, 2012

Training 2 Treat Maudsley Family-Based Treatment?

Manuals are nice. Training is better.
For those of you who are interested in certification for family-based treatment (aka, Maudsley approach), or know someone else who might, there will be a training this September 7th and 8th at the University of Chicago.  Training and certification is offered by the Training Institute for Child and Adolescent Eating Disorders, which is directed by Daniel le Grange, PhD, and Jim Lock, MD, PhD.
 You can find more information here:http://train2treat4ed.com/traininginformation.html

June 5, 2012

WInnipeg eating disorder conference organized by a mom

As I sit here working on the next F.E.A.S.T. conference for parents I received notice of an upcoming event in Winnipeg, organized by a mother who lost her daughter to an eating disorder.

Conference aims to reduce shame and increase education surrounding eating disorders

Result! Your activism makes a difference

So, you all remember the Australian effort to keep Jenny Craig's CEO from being keynote at a conference for Girls Schools, yes?

Well you need to know that the worldwide effort worked. It didn't stop the speech but it created all sorts of good results and not because of money or politics or anyone's self-interest but because people rose up together to be heard together.

June Alexander recently posted this follow-up letter to those who signed the petition.

The ability for all of us to put up alerts, share information, and multiply our efforts by doing it together is really unprecedented.

Congratulations, everyone.

It should be controversial for a diet corporation to associate with schools and health.

Weight Cycling Companies: beware. You're not selling health or self-esteem. You are selling yourselves, and it's a poisoned product. And we're watching.

June 4, 2012

Texting and bulimia and binge eating

Interesting approach for bulimia and binge eating:

Using text messages as part of treatment for bulimia and binge eating

Red flags when choosing treatment for your child's eating disorder

There is no magic formula or clear rules for choosing professionals who will treat your loved one, I'm afraid. But there are some red flags. The following are signs that you may need to keep looking, or have a frank talk:

  1. "Don't be the food police." 
  2. "Don't make too big a deal out of it: you'll make it worse."
  3. "She's not in danger yet."
  4. "Something has upset him, and we have to figure out what that is."
  5. "She has to choose to get well."
  6. "We'll work on the underlying issues and not worry about the eating piece right now."
  7. "I'm not worried."
  8. "I've worked with a few eating disorder patients."
  9. "He just needs to understand how dangerous an eating disorder is."
  10. "These problems are just about control."
  11. "His weight is low but not dangerous."
  12. "I don't believe in labels: the treatment I offer just seems to help patients."
  13. "What is evidence-based?"
  14. "This is the worst case I've ever seen."
  15. "I don't believe in manuals."
  16. "Yes, I offer Family-Based Maudsley. But that's only for little kids."
  17. "I've never seen a boy with an eating disorder before."
  18. "I wish I could lose a few pounds."
  19. "Don't you see how you are worrying your parents?"
  20. "Mom, dad, wait outside."
  21. "These are lifelong conditions that people just have to learn to live with."
  22. "I see most of my patients for many years."
  23. "My patients like me."
There are certainly effective eating disorder specialists who have said some of the above, but if you do have choices in choosing providers and you see red flags remember that this decision could be one of the most important of your life. Most care available is based on guesswork and good intentions but not the best informed methods or skill.

June 3, 2012

child over 18? skip this post

I wish I could do that. I wish I could target posts to those who it might help and not bother or harm those it might upset. But this is a message we have to get to parents of younger patients: "GET HELP BEFORE YOUR CHILD TURNS 18."

Not just get help, but do everything you can to get your loved one well and HAVE A PLAN IN PLACE for after 18. After 18 you will not have legal standing, you may not get professional support for being involved, and you may, as Batty Mom so movingly says

"And, meanwhile, their parents and other people that love them and want to save their lives are faced with taking a ringside seat to watch the destruction take place.

Like being gagged and tied up, forced to watch your own child being fed to the lions in some hellish Roman arena. Just because it's the law."

Yes, you may be able to retain a relationship, you may be able to find clinicians who will insist on giving you a role, you may have financial or moral or practical agency. But the "hellish" experience of so many parents I have met is real and happens even to parents who did a great job before the loved one turned 18. Tragic, horrible stories cross my desk and most of them have to do with patients over 18 whose parents want desperately to help and WOULD but are held back by that "over 18" issue. 

People are individuals: eating disorders, not so much

I was commenting on Carrie's blog yesterday and had a bit of a foot-stomping moment.

"Eating disorders are not individual to each patient: each patient is an individual. Let's not confuse that. All diseases and disorders present differently person to person but the whole power of a diagnosis is using the data we have about that phenomenon to help guide how we help the patient.

We don't treat diabetes as if each patient needs a unique diagnosis and treatment plan. We don't throw up our hands and say we can't make decisions about treatment of cancer because each case is different.

I'm sorry, but I'm tired of the assertion that nothing can be known with these disorders. It's a refuge for poor treatment and hopelessness."

No one is trying to pigeon hole or depersonalize people or their treatment. We're hoping to use data to HELP inform decision-making for VERY SERIOUS CONDITIONS. Starting with the data doesn't limit us to the data it just starts us at a common point of reference. Then, we individualize and adjust as needed.

June 2, 2012

Selling certainty

Carrie has posted what I believe needs to be a rallying call for us all.

The eating disorder world's dirty little secret

It is time for us to call "bullshit" on the certainty that so many are peddling and ask some serious questions. After all, when we choose treatment or participate in treatment we're assuming that those offering services believe in them and that they have good reason. We're operating on faith that there is some basis, some grounding to a recommendation.

That's why it is so terrifying when we visit two different clinicians - sometimes even on the same team - and hear completely different things. How can we believe one and not the other? We're not shooting craps or buying a lottery ticket. We can't split the difference or use an average, here.

One of the goals I set for our 2011 F.E.A.S.T. conference was that we call out the fact that the "Map" is mostly uncharted. This was not just the usual statement of "the data suggest" this was us trying to convey to families the truly scary truth that so little is known and most of what we're offered is based on nothing but good intentions. To me this isn't a pessimistic view of research but a rallying call: we need to AT LEAST use what data we have to help guide us and we have to DEMAND more data and we have to HOLD ACCOUNTABLE those who resist that sort of questioning.

As much as I like to drone on about things like the data to support Family-Based Maudsley Treatment, for example, it is only great data as compared to the NOTHING ELSE out there. Same with CBT. I'm ready to harangue you any day of the week on the role of weight restoration but there's so little research to help guide that so even if I told you what the top ten clinics in the world are I would have to also tell you that no three of them do the same things when it comes to weight restoration. If there were clear answers it would stand to reason that the top clinics would agree on them, right?

And yet the biggest problem isn't the lack of clarity at the top, it is the fact that most patients don't get treatment guided by ANYTHING. That is why people like me are so frustrated and, yes, angry at the pushback against evidence. We're not trying to clean the slate, we're pointing out that the slate is largely empty.

I want to thank Carrie for raising her voice to tell the truth. I'm cheering.

It may not just be an eating disorder

As hard as it is to accept that one's child has a life-threatening eating disorder requiring a complete shift of life priorities, sometimes it isn't just an eating disorder. I've known so many families who have successfully faced an eating disorder only to slowly realize that they are facing larger mental health issues.

Borderline Personality Disorder is one of those issues, and like most mental health issues, it's complicated. The greatest difficulty is in discerning whether the mood and behavioral issues are ED-related. Many patients with just an eating disorder show all the symptoms of BPD while they are ill and for a while afterward: irritability, reactivity, inability to manage moods, impulsivity, and a particular way of manipulating others to re-create rejection and anger.

BPD, unlike eating disorders, is generally lifelong. That is a difficult, difficult realization for a family - and one that should be carefully considered. Many mental health experts now say that BPD diagnosis should not be made until ED symptoms are gone for a year.

Confounding the issues, eating disorder recovery can make BPD symptoms even stronger because ED behaviors and physiology can serve as a self-medication for BPD: semi-starvation numbs emotion and binging and purging both offer brief physiological respite as well. Not to mention the function that illness and family drama can play in scratching the itch of internal distress.

The good news is there are now more tools for treating and coping with BPD and they can be good ones for any parents facing an eating disorder, I believe. I recommend the BPD literature to any parent of an ED patient whether the BPD symptoms are transient or lifelong.

One parent blogger with excellent advice and perspective on BPD is Desert Dweller. Must-read stuff.

June 1, 2012

Welsh petition: urgent!

Please consider signing this petition:

e-Petition:Child and Adolescent Eating Disorder Service

We call on the National Assembly for Wales to urge the Welsh Government to fund the Child and Adolescent Eating Disorder Service in Wales to the same degree as the Adult Eating Disorder Service in Wales.