March 29, 2012

Weekend Eating Disorder Camp Treatment Option

One of the trends I'm seeing in eating disorder care is breaking free from the 50 minute once a week appointments.

Programs like the UCSD 5-Day Intensive multi-family program for the whole family is one model. A growing number of all-day/inpatient programs like Kartini Clinic and Denver Children's Hospital offer parents a chance to stay at local Ronald McDonald Houses while participating on a daily basis. I see more Partial Hospitalization and Day Programs adding more family involvement as well.

Another new idea: Beumont Hospital's Weekend Camp program.

"Supported by a grant from the Flinn Foundation, our weekend camp, for children 13 to 18 years old who have been diagnosed with an eating disorder and at least one parent or guardian, will take place from 10 a.m. Friday, April 13 through 4 p.m. Sunday, April 15 at the Skyline Camp and Retreat Center in Almont, MI."

brain of anorexia sufferers distorts body image

Bryan Lask and colleagues have a theory that would help explain why people with anorexia share certain personality traits, body image distortion, difficulty nourishing themselves, and thinking patterns. He hopes the NORA Hypothesis will generate research questions and data.

I find the hypothesis compelling, myself, with my limited understanding of the neurobiology. Most important is the necessity of bringing together all the information we know about the disorder and look at it as a whole, rather than focusing on one aspect at a time or even from the perspective of one discipline at a time.

As a matter of fact, it strikes me that thinking about eating disorders has suffered from many of the same cognitive deficits in this theory: black and white thinking, difficulty changing thought patterns, insensitivity to pain, anxiety management, multi-tasking, and ability to block out negative thoughts! 

Professor claims blood flow in brains of anorexia sufferers distorts body image even as they get better 

Derailing for Dummies

Oh, my dear friend Irish, you have delivered the tonic I've needed for some time now:


Derailing for Dummies is like a grand tour of the unfun moments of the past few years. I should have known that none of this is new and none of this has to do with this particular cause.


"a fool-proof method of derailing every challenging conversation you may get into"

DERAIL USING ANGER
  • You're Being Hostile
  • You've Lost Your Temper So I Don't Have To Listen To You Anymore
  • You Are Damaging Your Cause By Being Angry
DERAIL USING RETALIATION
  • Your Experience Is Not Representative Of Everyone
  • You Have An Agenda
  • Unless You Can Prove Your Experience Is Widespread I Won't Believe It
  • You Have A False Consciousness
  • But It's True!
  • Don't You Have More Important Issues To Think About
  • You're Just Suffering Privilege Envy
  • Well I Know Another Person From Your Group Who Disagrees!
  • You're Not Being A Team Player
DERAIL USING PERSONAL ATTACKS
  • You're As Bad As They Are
  • You Just Enjoy Being Offended
  • Being Offended Is Great For You
  • I Don't Think You're As Marginalised As You Claim
  • But You're Different To The Others
DERAIL USING INTELLECTUALISM
  • You’re Not Being Intellectual Enough/You’re Being Overly Intellectual
  • You're Interrogating From The Wrong Perspective
  • You're Arguing With Opinions Not Fact
And may I add: Derail by the Friends You Keep, Derail by lack of loyalty, Derail claiming financial interest, Derail by claiming deeper knowledge, Derail by Claiming Others Agree With Me and are Talking About You, Derail Using Insinuation of Hurting Friends, we could go on...

How naive I've been! I need to study this stuff!

March 28, 2012

Tell Vogue what you think!

Read Evelyn Tribole's blog post on the Vogue article and join those speaking up on Facebook and directly to the editor of Vogue.

Petition for eating disorder care in New South Wales

Gnashing teeth is good. Action is better.

Sign petition for adequate eating disorder services in New South Wales.

Kids on diets: is the tide finally turning?

Until recently, it felt futile to argue much about the dangers of children dieting. People thought I was nuts. Even my child's pediatrician fought me on it and it felt Sisyphian to try.

The outcry about "childhood obesity" has been so strong and the public's solution, dieting, just seemed so obvious to people.

I sense the tide finally easing and more and more reasonable people joining the change in direction. Not only that, I see social networking and the Internet's power to give individuals a voice and share information may be changing how tides turn in general.

Recent examples:

Maggie goes on a diet book protest
Jenny Craig CEO speaking at girls' school conference protest
Mom putting kid on diet in public protest
Academy for Eating Disorders statement on obesity prevention
Questions for Michelle Obama's anti-obesity campaign

Maybe soon we can get to the point where children dieting will be seen as controversial rather than it being controversial to question that!

P.S. For those who are about to click "comments" to protest that children today are too fat and that parents should be controlling their weight, let me stop you. One: dieting doesn't control weight it just promotes weight cycling and weight gain. Two: parents should be promoting healthy lifestyles for their kids regardless of weight: family meals, a wholesome variety of foods, activities, and positive body image. Three: the real beneficiaries of the dieting message are the twin corporate interests of diet programs and processed convenience foods - as both promote one another.

March 27, 2012

OK, but surely THIS mom causes eating disorders, right?

I've been waiting for some time for a perfect example of what I mean when parents don't cause eating disorders.

Here it is:

Vogue article by mom about 7-year-old daughter’s weight sparks heavy backlash

Now, no one can know the whole story here but it doesn't matter, let's just pretend it is as described: this is a description of a grotesque abuse of parenting. I violently abhor the inconsistent, self-absorbed, appearance-focused, exhibitionist disordered bad parent described here and I think her daughter is being harmed, lifelong, by this sort of parenting. Surely, SURELY, I need to say that if this little girl grows up and develops and eating disorder it is abundantly her mother's fault, right? Right?

No.

We don't know what causes eating disorders. As far as we know, even the worst sort of environment isn't going to trigger an eating disorder without a certain predisposition and unknown other factors, and we simply don't know what causes one person and not another to develop an eating disorder. The severity of an eating disorder isn't indicative of environment at all. Kids develop full-blown horrible EDs in all sorts of environments. Kids fail to develop EDs in environments that are patently toxic (see article). One kid in a family may fall ill, and another thrive.

This kid may indeed grow up with issues about her body size, may eat in a disordered way - maybe even severely, but it is important to distinguish those issues from an eating disorder. An eating disorder isn't just a certain level of disordered eating and body image distress: it is a severe mental illness with more symptoms than just the food behaviors. Eating disorders are not a dosed response to environment.

If, however, this girl has that predisposition for this mental illness -- and that's not a stretch since her mother may have it herself - she's in terrible peril. Even without the misery of such a role model in life an eating disorder diagnosis requires a stable, loving, ordered environment and parenting to support recovery. While parents can't cause an eating disorder they sure as heck CAN keep them ill once it starts. This woman's public statements make it look like any child in her care is not going to get their needs met.

Think of this in terms of the corollary. What if, by some miracle of resiliency, this girl grows up normal and without mental illness or discernible issues around eating and her appearance. Does that mean what her mother did wasn't wrong? It was wrong anyway. Horribly wrong and almost inevitably harmful.

P.S. It should be noted that the doctor TOLD this mother to put her kid on a diet, reportedly. This is going on all over the world and it is wrong. 


Added, great new article in Time: http://healthland.time.com/2012/03/27/vogue-essay-by-a-mom-who-put-her-7-year-old-daughter-on-a-diet-garners-outrage/ 

March 26, 2012

You're being heard, my friends: keep going

Great news: the AGSA has taken down mention of Jenny Craig's CEO's job from her description on the conference website, and a sponsor has pulled out.

An article in The Age lays out the issues.

And, for what it's worth, there's a poll where you can vote there.

If this issue bothers you, speak up. It matters.

miserable hag skanks get a life

Wow. I need a shower after an ugly kerfuffle on a site I won't hurt your eyes by linking.

This brings up a lot of important issues that bear discussing, too. My thoughts.

One: the internet cannot be cleaned. There will always be hideous, wrong, damaging, hurtful, misguided, SAD commentary out there. While it is good to try to respond to it sometimes, it is not a reasonable goal to think it can be erased. We will never 'set the record straight' or save all parents from being exposed to poison; we can just spread as much good as possible.

Two: consider the source. Not all internet commentary is of equal value. Dignifying some of this stuff with a response only elevates that person and lessens your authority.

Three: lay down with pigs, get up muddy. Wrestling with people who are horrid and nasty, or nasty and defensive, or (worst) frightened, doesn't dignify one's arguments or help the cause of good information.

Four: People are watching. Most people who read stuff on the internet aren't commenting. But they are googling, gossiping, emailing, and forming opinions. Everything you say matters and can be found.

Five: Manners still matter.

Six: The friend of your enemy's enemy is your friend, whether you like it or not. If you are nasty, flippant, shrill, or wrong you will not only hurt your own cause you will hurt anyone who shares your views. When I represent F.E.A.S.T. out there in the world I am called to account for everything that is said that recommends F.E.A.S.T., for example. When I represent the parent community I am asked to apologize for everything a parent has said - whether I agree with that other parent or not. Is this fair? No. But it is still true. There is no 'we,' there is no 'they.'

Six Point Five: It goes both ways. When you attack all people of another opinion because of the excesses or ill temper of others of that bent, it undermines you.

Seven: Personal attacks work, but not the way you want. Any time you make it personal - about the other person's integrity or motives or authority - you make it about YOU. If you keep it on the idea, you win whether the other person is persuaded or not: because people are listening.

Eight: There is a stage for activism, and it isn't when you are currently fighting for your own child's life, generally. Those Internet fights can be brutal, brutal, brutal and if you are in a fragile place they can undermine your equilibrium. I would NOT recommend reading that kind of effed up s%^& without a very "wise mind" and some months of calm in your back pocket.

Nine: Let people be horrid. It is their own reward. You are not going to fix them. They have to live in their horrible, horrible minds.

Ten: I went through this seven years ago with my book. I'm a writer and this goes with the territory. There will be ignorant, thoughtless, cruel, anonymous commentary. That's the price of getting information out there, and it is expected. Yes, it hurts to be considered self-serving, a poor mother, all that - but no one writes a book about such things to have her ego stroked or bolster her self-esteem. One writes to connect and cry out against wrong and to make some small change in the world. 

Ten Point One: That woman is a nasty bit of baggage. 

Ten Point Two: I broke nearly ALL the above rules yesterday. I will do better today.

bodies adapted to famine

F.E.A.S.T. has just published a new piece by Shan Guisinger on the dangers of dieting a body adapted to famine. I'm interested to hear your thoughts!

March 25, 2012

You again? YES.

Be still my heart:


"I maintain though that as an activist I DO have both the right and the responsibility to read papers, to attend lectures, to sit at the table with the learned ones and maybe even comment when I think they are talking rot. Maybe that's not what the clinicians want of parents, but it's what they're going to get out of those of us who can't stop themselves from talking during meetings."


Beautiful, beautiful, beautiful, Marcella!

Sudden OCD and eating problems in childhood: new insights

There has for years been a growing interest in sudden OCD or anorexia in children having an autoimmune connection. Parents are almost never told about this because so few clinicians are aware of the idea and even fewer believe it.

I'm hoping that changes soon, and look forward to more research, and here's news:

Possible causes of sudden onset OCD in kids broadened

March 23, 2012

should mother keep son's girlfriend's bulimia a secret?

received by email:

Greetings Ms Collins: I came across your Feast Ed site when looking up some information.  I applaud your approach, which seems very common sense, and also appears backed by scientific evidence.

There is a Motherlode blog posting in today's New York Times:  


http://parenting.blogs.nytimes.com/2012/03/22/quandary-considered-my-sons-girlfriend-is-bulimic/


that you may want to respond to.   There are several aspects to that piece that even I, who know little about eating disorders, but am a parent, think is misleading or just misguided.  All best

SS


Thank you, SS!

That's not an answer

Like-minded people around the world have stepped up to protest the choice of the CEO of Jenny Craig as a speaker at the Alliance for Girls Schools Conference in Melbourne in May.

I suppose most people would be shocked by us being against promoting dieting in girls: but the eating disorder community knows just how off-base and harmful it is to call it "health" promotion.

These weight-cycling business interests need to stay OUT of our schools just as we want the cigarette industry out of our schools!

Unfortunately, the Alliance has responded to the deluge of protest from individuals and organizations with identical form letters that fail completely to address the issues:


Thank you for your email.  The Alliance of Girls' Schools Australasia Biennial conference is for educators and leaders in girls’ schools. The speakers have been selected to promote discussion about the issues facing girls. Please visit the Alliance website for information about the conference and the Alliance. Kind regards Jan ButlerExecutive Officerwww.agsa.org.au 
agsa@agsa.org.au 

Clearly, AGSA has not read or understood the messages. Or their email program is broken and is only capable of form letters. I remain optimistic that they WILL hear, and need to hear from more of us. Even more to the point, I am certain that the Jenny Craig corporation will hear that they are now a controversial, risky idea as a speaker to schools and that those considering these marketing efforts will think twice.

Dieting is not appropriate for children and the messages around dieting are unhealthy for young people. It is time to make it unacceptable to promote this industry to our children!

My earlier blog on this, Deb Burgard's activism alert
BodyMatters Australia speaks out
June Alexander's summing up of the issues
Charlotte's call to action

Added: Sign the Change.org petition:

Stop Jenny Craig's CEO from presenting at Girls' Schools conference!


March 21, 2012

Does your daughter need Jenny Craig teaching her about health? I don't think so.

Australian parents, just in from my friend, Deb:

Hi, All,

We have an activism opportunity - our colleagues at BodyMatters Australia have let us know that the CEO of Jenny Craig Australasia, Amy Smith, will be speaking at an upcoming conference for the Alliance of Girls' Schools in Melbourne later this year. Lydia Jade Turner, head of BodyMatters, writes, "When a colleague wrote an email expressing her concerns, she was told by the Principal of Melbourne Girls' Grammar Catherine Misson that Smith is 'transforming the organisation into a champion of women's health.'"

We have good research documenting the hazards of dieting for youth. The marketing departments of these companies are appropriating concerns about weight and health to insert themselves into workplaces, schools, and healthcare settings.

Lydia asks that we  email both Ms Catherine Mission (school principal of Melbourne Girls' Grammar School
principal@mggs.vic.edu.au) and the organisers of the conference agsa@agsa.org.au to voice your concerns.

Thank you for any help you can offer!

Best wishes,
Deb
Deb Burgard, PhD



added 3/24: Sign the Change.org petition:

Stop Jenny Craig's CEO from presenting at Girls' Schools conference!

Leave Amelia be

14 is the theme of my week. My son is, my summer camp reunion Facebook page is bringing people and photos back to life from my 14th year, and my work involves an illness that generally arrives unwelcome right around the same time: in fact, my daughter fell ill at 14.

One of my new favorite bloggers named her blog thirteen fourteen. She has the voice that I flatter myself to remember - one that has so much more to say than those in "real" life get to hear. The heart and art of a woman living life directly: before the carapace and the fog of experience.

 When I was 14 I conceived a poetic and fatalistic connection with Amelia Earhart - even though I grew up a few blocks from Emily Dickinson (some day ask me about skinny dipping in her garden), a century apart. I had a thing for willful, underestimated, doomed women who disappear and are searched for forever. I was as confident of that discovery as I was doomed to grey mole status in the endless present of 14. I confess: I don't want them to find Amelia. There are stories we don't need ends for; we all have ends and they aren't the story. It's 14, really, that's the real story. Keeping 14 into one's 90s, if necessary, is what heroines do.

"Courage is the price that Life exacts for granting peace, The soul that knows it not, knows no release from little things." Amelia Earhart

 

March 20, 2012

March 18, 2012

I left my shoe on Bourbon Street

Woke up in my own bed this morning: quiet, but strangely disorienting. Many thoughts germinated on this trip, intellectual and strategic. OK, and some absinthe and dancing and beignets and beads as well. It *was* New Orleans.

The Society for Adolescent Health and Medicine members are a select group, I find. There were many ED specialists there that I've known a while, but a number who until now I hadn't had much time to chat with and learn about. Here's what impressed me most: the quality of expertise. This wasn't a crowd of people who were dithering over whether or what "evidence-based" is. They weren't caught up in idiotic in-fighting about particular words or modalities because they actually understand what they mean and can get on with the how and when and let's share ideas on new innovations.

The quality of the presentations reflected that, as did the questions - which were real questions and not just speeches and self-promotion in the form of a question. The hallway conversations led to at least three new initiatives for F.E.A.S.T. and two meetings ended up moving projects forward in a way that a month of email and phone meetings would never have.

MB Krohel, my friend, social director, catering and networking wizard, dowser of the right person for each job, and head of the F.E.A.S.T. Medical Education Task Force, is a FORCE to be reckoned with. She earns her reputation for getting things done just as she does her Mardi Gras beads: with focus and integrity. And she knows how to party.

I continue to learn from Rod McClymont of Bathurst, or "He Who Knows Everyone" who can always be found surrounded by other clever people - in this case an international and spicy melange perfect for New Orleans. 

Glad to catch up with Ellen Rome, Debra Katzman, Walt "I'll do anything for beads" Kaye, Richard "ready for St. Patrick's day" Kriepe, Laura "noisy brain" Hill, and ever in passing Rebecka Peebles. 

Now, I lost a shoe and at least an hour's worth of memory on Bourbon Street, so - you know who you are - if you find them just leave them as a token of my affection.

Food, music, friends, good science, and an optimistic view to the future of eating disorder care: that's a week worth having. But I need a nap.

March 16, 2012

Mothers of anorexia patients: a research study

Moms, a study to consider:

Are you the mother of a child who is currently receiving outpatient treatment for Anorexia Nervosa? If so, we’d like to invite you to participate in an anonymous study that examines the experience of caring for a child with Anorexia Nervosa. This study will look at how a child’s eating disorder affects the parents and family, and how families cope with caring for a child with Anorexia. We hope these research findings will provide greater insight into how a child’s illness affects families, so that more support services can be developed to help parents and caregivers. To be eligible for this study, you must be the mother to a child with Anorexia and currently be in a committed relationship. If your child is between the ages of 10-21, is currently receiving outpatient treatment for Anorexia Nervosa, and is currently living with you and your spouse/partner at home, we invite you to participate in this important study. Participation will involve: Completing the questionnaire online will take approximately 15-30 minutes.  You will not be asked to provide your name at any time-- Publications or presentations about the research findings will not include individual responses, only summary data on all participants will be presented. If you would like more information about this study, please contact Marissa Alexander at bmamiller@fordham.edu, or Dr. Merle Keitel at mkeitel@fordham.edu. 
To participate in this study, click on the following link: https://www.surveymonkey.com/s/6QPPY8M
http://www.facebook.com/pages/Caring-for-a-Child-with-Anorexia/133394133454823 



Either the camera would dance...

Having been to it twice now, the Monteleone bar qualifies as my bar now. Watch carefully: the bar is rotating...


Aside from a bit of soft-shoe at my 26th floor window overlooking the river, I'm not tap dancing here but Fred Astaire said: "either the camera would dance--or he would," and between the walking and the running around here - a moving bar is appropriate and MB caught me there.


Dinner last night: Calcasieu for the International Dinner. The first time I've had to tweet for a meal ticket!


Tonight's dinner sounds great, too - with some UCSD folks.



March 15, 2012

The exception

I share this not because it is an example of the kind of doctors I've met here at SAHM, but because it is so much the exception.

He walked up to the AED booth and refused a medical guide pamphlet saying, with some relish, that he didn't treat eating disorder patients. I noticed the hospital on his name tag and said what great work I heard was being done there. He said, with some pride, "Not by me. I won't treat people with eating disorders. I don't want to work with people who lie to me."

I touched him on the elbow and said it was just as well that way.

The conversation did not linger.

Things I'll regret I didn't photograph at the SAHM conference so far

Meeting Malia.

Walking the length of the French Quarter in search of the perfect place to eat.

Ordering a Sazerac.

My first bite of food in New Orleans, witnessed by Bob, Malia, and MB, at Mr. B's. It was that good, too.

Really good bread. With butter. Thank you, Bob.

The bar at the Monteleone, better with Malia than with Faulkner and Capote.

Jackson Square. As advertised.

Breakfast of beignet at cafe de monde, then a stroll in the French Market in the fog.

The can of alligator meat I bought for my son.

The blisters on my left foot from walking too much in the wrong shoes.

MB on a mission (do NOT, you've been warned, get in MB's way). That girl got the buffet moved so it would be in front of the AED booth and she's brought scores of doctors into the modern age in terms of eating disorders and it was JUST THE FIRST DAY.

Dozens of doctors who GET eating disorders and GET adolescents and GET evidence-based approaches and ask excellent questions.

3.5 HOURS of discussion of the physiology of the first few weeks of refeeding malnourished anorexics. Inexplicably fascinating.

The fact that adolescent medicine specialists, in high proportion, favor wearing the color blue. Except when they wear brown.

Being asked to (squeak!) address the Eating Disorders SIG! Thank you, Ellen Rome.

Giving out medical guides with MB.

Great hallway chats with some of the leading lights of ED treatment.

Presentations about adolescent eating disorders that ASSUME parents will be involved with treatment and that FBT will be offered, and have moved on to questions of how.

Being included in (thank you, Rod) a dinner at Muriels with a mad cast of doctor characters from all corners and versions of the English language, including a crazed epicure, a re-feeding manaic (that isn't me!), a budding software entrepreneur, all presided over by a saucy waiter team.

Finding another Treme fan.

A lobby filled with tired doctors at midnight.

A night when I don't have to set an alarm.

Meeting Malia.

March 12, 2012

Manuals don't treat patients

One of the unfair and unfounded raps on "evidence-based" care is that it means people have to live out of a book. That's like saying a clinical trial of penicillin is unreasonably limiting the use of antibiotics. Evidence-based means guided by well-gathered data and not tradition and myth. Will there be innovations and critique? Of course: that's how science works.



No one is asking that clinicians be forced to offer treatments they find inappropriate, or that they practice out of a book. Research does have to be done 'by the book' to assure consistency, but no reasonable person thinks that's the end of the clinician's job. That is a misunderstanding of what "evidence based" is supposed to mean. Those who feel threatened by being asked to be trained in evidence-based approaches are missing the point: improving their own skills and effectiveness.


But there is another mistake about evidence-based practice that June Alexander addressed yesterday in her blog: clinical skill and belief matter.
You can have a good, evidence-based treatment in theory, but if the therapist does not believe in it 100 per cent, it won’t work. ‘ED’ is smart and therapists need to be smarter. Allow one iota of doubt to appear – a facial expression can be enough to sow the seed of doubt – and ‘ED’ will grab it and magnify the doubt a million times over.

March 11, 2012

Not about me

A couple of clarifications?

One, no one is attacking me personally.

Two, these aren't attacks. These are people reporting that THEY have been unfairly attacked.

I have no issue with a private forum for members of a professional organization. That's appropriate. No one is using it, as far as I can see, to bully or attack. What they are doing is discussing important issues in the field and of treatment and I'm all for that, really. It is an important view to the thinking and the variety of viewpoints that exist. It's also a good way to share information with others in the field. The problem isn't the forum, or the statements, it's the fact that there is genuine misunderstanding in the field among professionals about all of those issues. It is sad, really, to see how far apart people are and how little understand they have of other perspectives. So, Charlotte, I can reassure you that while there is intolerance that is just a reflection of real feelings out there in the field.

Parents are being heard, and they are upsetting and offending and scaring people. Some of that is inevitable, as the ideas held dear by many of us and the things that make some of us very angry are simply not going to be welcomed. Some of it is not, because some of the behaviors by parents have been rude, misguided, and personalized against individuals instead of on the IDEAS.

I don't control what parents do out there on the Wild West of the Internet, and I'll be darned if I'm going to apologize for anyone, but I do prefer that we all adopt a policy of sticking with criticizing ideas and not the people who hold them, and that we do so civilly, but all the while BE HEARD.

Don't stop speaking up!

March 10, 2012

The state of the ED professional world: a report

Well, friends, there's good news and bad news.

Good news: parents are being heard.

Bad news: parents are being heard.

I can't show you what I'm talking about, because it is on a listserv for professionals only. Let me sum it up, knowing that although you parents can't read their conversation that some of them may do me the honor of reading this - and your responses.

What has happened, in a brief tour, is that ideas that are important to me - the ones I wrote about in my blog yesterday - are getting a lot of attention in the professional ED world because of a lot of hard work on the part of many people. The ideas, being different from what has come before, have not been welcomed or embraced by everyone.

Meanwhile, the social networking world of ED parents and activists hasn't been waiting for the slow progress of professional change. They've been sharing information, speaking up, writing directly to researchers and professionals, commenting on news articles.

Now, you parents need to know, your objections are being judged not only on their merits but on your civility and the friends you keep. There is a growing number of people who believe you are bullies, operating in a group, and that you are unfair and rigid and that you think that parents are perfect and that the only thing anyone should ever do is one type of therapy. They feel you don't listen, you don't understand the good intentions and professional judgement of well-qualified experts. They feel you are your own worst enemies and that you are hurting the cause of better treatment of families.

They find you extreme, and closed-minded, and rude. They are spreading rumors about you that have half a grip on half the truth -

Now, I'll share my letter to that listserv below, but first want to set a challenge. First of all, to know that the people who feel that way about parent activists are not a monolith, themselves. They are not a coordinated group. They are not even the majority. They are people who are genuinely confused, hurt, offended, and often frightened. They don't understand your objections or your emotions.

The other challenge is this: be civil. Not because you're not provoked, but because it works better and makes my job, in dealing with people in the profession, simpler.

"I was bullied off this listserve a while ago, but I do continue to read it with interest.

I am in the somewhat surreal position of having been there for, or directly involved, with many of the interactions being discussed here. I don't know if my observations will be helpful, or even heard, but I'd like to try.

Parents around the world have started to speak up in public and often directly to clinicians and researchers and organizations in the eating disorder field. Some of those interactions have been polite, some wrong-headed, some quite rude – on all sides. The Internet has changed the ability for people to access, share, and respond to information. If you publish on the Internet or in publicly available journals or run a treatment clinic or are quoted in the media in 2012 you will hear from the public. I certainly do!

There are some frustrated, frightened, and – yes – angry parents out there who have good reason to speak up when they can. Your field lacks standards and tolerates every flavor of misguided treatment ever invented. What we are seeing is real, and justified, frustration on the one side and plea on the other not to be questioned.

In the ten years since my daughter became ill with anorexia nervosa I have seen enormous positive changes in the field. My mission has been to make sure families are aware of evidence-based treatments, that they know that this is a treatable brain problem, that neither they nor their loved one caused the illness, and that they put aside everything else as they do the difficult but necessary work of working as a family toward full recovery. These ideas tend to confuse and offend people NO MATTER HOW THEY ARE EXPRESSED. Yet these are neither extreme nor unfounded ideas.

Some people have been very rude. Others have been a bit too delighted to be offended. That's human.
Blaming the messenger is a common delaying tactic but it doesn't address the message. I strongly object to the rudeness, I really do – publicly and privately. I've lost more friends by standing up against their excesses than I have over ideological differences. I'm sure I will continue to. I also plan to keep plodding forward as politely as *I* can to discuss the real issues.

Those outside the field don't have to be silent and are often saying what others in the field are afraid to say. If half of the people I hear from back-channel weren't afraid to speak up here – and I'm sure this is true on all sides of the issues – it would be a different debate. If the real story behind some of these anecdotes was known, I'm pretty sure most people of good will would agree that the genuine issues are urgent but solvable. The goal of "coming together" isn't going to happen without facing these issues calmly and honestly.

Laura Collins
Executive Director
F.E.A.S.T.

March 9, 2012

Under the weather

I have a head cold and my email/calendar/tasks program are broken, and that should be enough to give me the blues, but even with an unstuffed head and knowing what I was supposed to do today I would still feel quite blue.

Some things have come clear to me in the past 48 hours that I could, had I been brighter, have seen earlier but I just didn't see. I've been fighting for certain principles out there, and believed that if I worked hard, gathered allies, spoke up, and those principles had merit then in the end all would be well. Yet I sit here in the wreckage of yet another storm and realize that honest discourse may well be futile until the next generation comes along and sweeps the old away.

Not because the new ideas are false, or that they are are not useful, but because it doesn't actually matter how calm and right and kind and patient you are. If people don't like your ideas they will find ways to hate you and your ideas. In today's melee, the excuse is that there are people who hold similar views who go too far or are too aggressive. That's true, there are. But to judge the ideas on that basis is a cheap escape from questions people don't want to answer. Well, I regret that these are new, controversial, misunderstood ideas that some rude people have expressed unattractively, but it doesn't change the ideas and their merits. I've not yet found a way to deliver these ideas without offending or causing ridiculous, outlandish responses.

I've watched with wonderment as interactions that I saw or was part of are distorted or outright lied about. I've been called extreme and rigid and narrow and closed-minded. I can only believe that the personal hurt of these people over being challenged has altered their judgement. I have nothing but sympathy for their pain but deeply saddened they would turn that against people who are often quite hurt themselves. It's a vicious cycle of fear and retribution between those who should be allies.

Look, eventually these ideas WILL be the mainstream and then a whole new school of thought will come along to improve on them. For those struggling with the paradigm shift you have my condolences but this advice: don't get stuck and left behind. Don't continue to harm families and patients with myth-based, well-meaning, but harmful beliefs.

So, just in case you missed them before, or you think recent fear-based attacks have changed my mind or my resolve:

  • Parents don't cause eating disorders. (that includes not "contributing to" them)
  • Patients need parents to step up and seek out and participate in evidence-based care if possible
  • Eating disorders are biologically based brain disorders.
  • The best-validated treatment for eating disorders are Family-Based Maudsley and Cognitive Behavioral Therapy and all others are of unknown value.
  • Nutritional and medical normalization are and must be the first priority of ED treatment.

These ideas may offend you, you may disagree with them, but they are neither extreme nor unfounded. If you assert the opposite of any of them, expect to be held accountable for that. If you misunderstand them expect to have me try to explain myself again. Some people will ask for that accountability politely, and some will not. People who feel their child's life has been harmed by bad ideas can, on occasion, behave that way. Ask yourself what greater provocation to strong emotion there is for a loving, normal parent, than being led astray while a child is dying.

I have not attacked anyone, nor do I condone it. I do come out strongly against certain ideas. I engage with mutual respect with people whose ideas I disagree with. But I also refuse to apologize for others as if I need to make my beliefs palatable. If you are dismissing ME or the ideas I believe in on the basis of the most extreme believer then ask yourself why you need to do that. The issues are worth discussing, and you aren't getting rid of the issues by lumping those who believe differently into a box you refuse to address.

March 8, 2012

No kidding? Me, too!

Until the eating disorders advocacy world allies with and works with the larger mental health community, we are going to have to keep fighting the same issues over and over again both inside and outside the field.

Eating disorders belong along with other serious brain-based mental illnesses: bipolar, schizophrenia, depression and anxiety disorders. I know this makes people uncomfortable: people in the ED world are afraid of the association and people in the larger mental health field don't get it - but we're talking about the deadliest disorders and ones that cause enormous societal and personal damage.


I wasn't non-compliant. I was sick

The greatest divide between ways of thinking of eating disorders is between those who see the thoughts and behaviors as cause or symptom.

Erratic or low motivation to recover is a symptom, not an indication of whether the patient deserves care or wants to be well.

Carrie, as always, describes it with precision and wisdom:

The myth of the non-compliant patient

March 7, 2012

Screaming at the TV

It seems, by all reports, that there is an epidemic of parents screaming at TVs. This spike in screaming incidents seems to be correlated with Eating Disorders Awareness weeks around the world, so clearly this screaming is the underlying cause of the misguided media.

Parents! Stop creating these terrible TV shows, news items, and interviews with the clueless. I know you mean well, and your hand motions are quite creative, but I'm afraid you've caused an avalanche of bad programming filled with misquoted, mistaken, myth-based, simplistic, and time-worn ideas. The promos are horrifying, and the programming is worse.

Stop screaming. Make it go away!

March 6, 2012

Ten things you quickly learn not to say if you hang around me

I no longer expect to walk through life unmolested by wrong-headed ideas about eating disorders, so instead I collect the markers of my dissent from the mainstream. Here are things to say to let me know that you and I don't know one another well:

10. She doesn't want to get well.
9. Everyone has a little bit of an eating disorder
8. It's all about having control over something
7. These skinny celebrities make me so mad
6. These parents .... (insert malfeasance of the week)
5. I wish I could have a little bit of anorexia
4. I already know all I need to know about eating disorders
3. If only these kids would understand how beautiful they are
2. My ex is the problem
1. He's an adult

Because:
10. That's a problem, but not hers: yours
9. Does everyone have a little bit of diabetes? MS?
8. What does that even mean?
7. Save the trip to Hollywood: you've got work to do here
6. Yeah, parents suck. All parents. Next question?
5. F*&$ you.
4. Anyone who thinks that really should not be caring for or around anyone with an eating disorder
3. If only we could talk people out of comas
2. You chose your ex, and your fates are inextricably linked, so you both have the problem
1. He's your child for life

March 5, 2012

March 3, 2012

Can compulsive exercisers go back to their sport?



EXERCISE AND THE SEVERELY ANOREXIC PATIENT

posted by Julie O'Toole on March 2, 2012
We need more strong messages like this. Patients with compulsive exercise may not, indeed face enormous risk, go back to their sport. Parents: how much does this scare you?

March 2, 2012

Back to school, dear journalists!

From my ever-renewing file of phrases that shouldn't happen:


Topless activists protest against anorexic models (doesn't this sound like something a teenage boy came up with? Models, anorexia, and nudity: there's a way to get attention!)
Healthy eating campaigns 'causing anorexia' (as much as I find those healthy eating campaigns wrong-headed, they don't cause anorexia)
The sole purpose of such blogs is to promote the creation and encourage the maintenance of eating disorders (eating disorders can't be created, they are a predisposition. the online ravings of ill people - or people pretending to be ill people - are sad reflections of poor treatment and public understanding of mental illness)
Woman looking anorexic during Oscars (you can't "look" anorexic. being very thin, or even skeletal, isn't anorexic - there is no difference between those who are underweight from chemo or neglect than those whose mental illness has compelled them to restrict. people with anorexia can be any weight, including "over" weight. just because the diagnosis has used that definition doesn't mean that is the illness itself.)
Anorexia became answer to abuse (anorexia is not an answer to anything. as poetic and sympathetic as it sounds: people don't respond to life by making themselves anorexic, or depressed, or deaf. While of course there are people who have anorexia and have been abused you may be interested to know that rates of abuse are LOWER in those with anorexia than the general population. abuse is wrong and damaging no matter what, but anorexia is not the measure of it.)
The New Face of Anorexia (there is no NEW face. rates of anorexia nervosa seem to be stable through history and across cultures: 1/2 a percent. new VISIBLE face, maybe: we certainly were not recognizing anorexia in men, in non-white girls, and anyone outside the stereotype and insurance coverage bracket before.)
Peer pressure drives "socially transmitted" anorexia (oy. anorexia is not socially transmitted. disordered behaviors CAN be, but without the predisposition - which isn't that common, actually, kids go back to what they used to do or just remain disordered. those who ARE predisposed get trapped in it and can't get back out.)



The best eating disorder awareness video I've seen

Watch this. We need to HEAR this wonderful young woman's message every single week of the year. This is what we - all of us who care about eating disorders - need to focus on:


Does your husband or wife have an eating disorder?

F.E.A.S.T. is mostly about parents of eating disorder patients, but we often hear from those who are supporting a husband or wife with an eating disorder. There's so little support for them and their needs are different than a parent's.

Romantic partners can't exert the same protections and limitations. Family life and parenting can be severely affected. Sexual relationships are almost certainly altered when one partner is struggling with his or her body.

In response to a wife who reached out recently, F.E.A.S.T. started a closed Facebook group to explore the topic. If you would like to join the group - it is not visible to the public - please let me know? If you know others who might need this, let them know!

March 1, 2012

Come to Washington and make change in how eating disorders are treated, researched, and understood!

We all complain about lack of public understanding, quality of treatment, lack of research, and insurance coverage here in the U.S. but what are you DOING about it?

Well someone with a track record of success, a lot of savvy, and a large coalition of support IS doing something about it and they do so with our help:

The Eating Disorders Coalition is that someone. I have volunteered with them and F.E.A.S.T. is a member because EDC is doing excellent work and has for many years. They're skilled, they're focused, and they're savvy: they KNOW the way things work and they have steadily improved the government's understanding of the issues. They are well-known, too, because they have worked so successfully with staff and Congress-members and other organizations. Because they are a coalition of a diverse range of groups and individuals they are about real change, not self-interest.

My daughter and I have both lobbied with EDC, and I'm a big supporter, I've even served proudly as Team Leader for the Virginia team. Jeanine Cogan and Kathleen MacDonald spoke at the F.E.A.S.T. symposium about the empowering effect of activism.



The next Lobby Day has just been scheduled for April 24, and want you to come to Lobby Day. Bring family members, bring a best friend, add a day to see spring in the Capitol. You will get more out of it than you give, but you are needed. Each person who goes is escorted with their group to their own legislator's office where you need not be an expert in anything but your own story. Real people telling their story has the power to change legislation - I've seen this. I've seen staffers tear up, make decisions on the spot, and become ongoing allies to the cause on the basis of ONE 15-minute meeting. You matter: come to Washington!