F.E.A.S.T. has a new Twitter feed

Tweets by @FEASTTidbits

The hot new Twitter feed at F.E.A.S.T. is a must-follow!

Brood II

Last time our county experienced a huge cicada season I was quoted in the paper about eating them:

"Fat-free. Low in carbs. Not kosher, though," Laura Lyster-Mensh reported. "A red wine meal."

This time our property hasn't been surrounded by the current Brood II Cicada event, just a scattered afternoon noisiness at the bottom of the hill. Many people in my county have, though, and the noise is mind-numbing and it is difficult to speak outdoors and be heard.

I like the cicadas, myself -- and not just to eat. I think they're pretty and a bit heroic. This short film, however, has to make ANYONE a cicada fan.

I'm not sure if it is as a mother, or as an aging being that I find this cycle so moving, but I really do.

Bulik: "Paddle faster"

The "At Home With Eating Disorders" conference in Brisbane is over and the travellers have returned home. Pictures are coming in by email and on Facebook, reports of collaborations and connections abound!

June Alexander, one of the main drivers and volunteers for the conference, has posted some of her impressions and also pointed us to Cindy Bulik's moving blog post as well.

Also, check out the F.E.A.S.T. Facebook page and the thread on the Around the Dinner Table forum.

Hearing Helen Keller

I find my moments of clarity, lately, between other more grinding issues. Today, this was one of those moments:

Australian Conference for Parents is ON!

Reports and press coming in on the At Home With Eating Disorders conference in Brisbane!

I've heard already that the teaching day before the conference went very well and that parents are already making fast friends and happily meeting one another.

Calls for overhaul of eating disorder treatment

on AM with Tony Eastly, ABC News.

One of the mums attending will try to tweet throughout: #AHWED2013

The organizers are also videotaping the presentations to make them available by DVD later!

Thank you to the wonderful volunteers and other organizations that have worked with F.E.A.S.T. to put on this historic event. Special appreciation to the F.E.A.S.T. volunteers - all of you. You are amazing.

The inside scoop

It is difficult to keep up with news and happenings in the ED field and this is a GOOD thing: an active an active field is exactly what we need.

One new tool out there for parents interested in staying on top of it is the bulletin board recently added to the Around the Dinner Table forum. A wonderful F.E.A.S.T. volunteer updates it regularly:

Bulletin Board: Announcements, Events, etc.

Binge Eating Disorder Week is coming!

My friends at BingeBehavior and BEDA are sponsoring Binge Eating Disorder Week, and the long-awaited change in the DSM regarding BED... it's a great week.

Time for the eating disorder world and the WHOLE world of people who care about healthcare to take a good look at how we're identifying, treating, and supporting patients with BED. It is time for us to address weight stigma that keeps us confused and avoidant. It is time to address the most common eating disorder with all the caring, science, and good practice available.

May 27 - 31 is a "work week" schedule, and let's get to work!

no news is good news

Two of the reasons Laura doesn't know whether she's coming or going lately.

more exercise is NOT necessarily better

It's okay to just have fun.

I am surrounded by folks who think that exercise is not only good but that more is always better and there is no such animal as moderation when it comes to activity. I hate this. Around food and exercise we have boxed ourselves into a corner of never good enough. It just isn't true. More exercise is not necessarily better and it is actually quite do-able for most people to do the OPTIMAL amount of activity for our health. The sad reality is that people fail to start doing so because they believe it "isn't enough."

We just love to hate ourselves, it seems. We don't want to have fun, or feel good -- we prefer to set expectations that are not enjoyable, not sustainable, and not even healthy. When I see runners out in all weather, people bragging on their miles, running through injury I don't see healthy athletes I see compulsivity and "using" exercise as an emotional regulator despite costs to joints and overall health. I don't envy it, and I don't feel "bad" that I do less activity. We probably need as a society to stop being so supportive of extremes in exercise.

Don't believe me? Double the Workout, Double the Benefits?

"Breaking news is broken"

I don't know exactly how this happened, but I used to think that watching the news, especially during big breaking events, was responsible. I thought of it as being "informed" and mature.

I have a very different view now. I learned during the period of the 2011 attacks (very close by), and the anthrax and then "Washington Sniper" period that I was really making myself sick with worry and unhelpful anxiety by winding along with every twist and mistaken lead and endlessly repeated film clip of horrible things being shown not because they were relevant or useful but because they existed.

This past week has been, for the US, filled with urgent news: bombing, explosion, ricin, police hunts. Very little of it needed ME to know about it in real time - although I did want reassurance that my own family and friends in Boston were unaffected, that was not done by watching the news.

In 2013, it isn't just the TV newsfeed but also Facebook and email alerts and Twitter and many of the other ways we are "updated" in real time if we choose.

This has been an anxious week. I didn't change the events by turning off the TV, but I did change my own reaction and my anxiety level. These days I think this was the most informed and mature way to approach it. It doesn't mean I "care" less. It also doesn't mean I know less: waiting until the end of an event makes me more likely to actually hear the "news."

Breaking News Is Broken

Don’t watch cable news. Shut off Twitter. You’d be better off cleaning your gutters.

Virtual lobbyists don't get blisters!

The most important rules for the Eating Disorders Coalition Lobby Day are:

1. Be yourself
2. Wear comfortable shoes

Well, I'm missing Lobby Day today, which pains me, but I get to participate anyway and hope you will, too!

EDC is encouraging us to be "Virtual Lobbyists." It doesn't take any particular skill or shoes - just about 10 minutes of your day. AND IT MATTERS.

Follow the simple instructions on EDC's blog, and make sure that when our friends who are IN Washington today visiting their Congress members they are doing so with your stated support. Each person, and every phone call, and every email really do get counted and are understood to represent many others.

Virtual lobbyists, wiggle your toes and get on it - I just wrote to my Representative. Contact yours and then say so below!

Doing the right thing should not be so difficult

Mental illness doesn't change at the 18th birthday, but laws do. We need to change this, or have a system in place to make certain laws conditional.

Parents are usually the best hope for patients. For patients who do not have, or have already alienated, their families they suffer even more. For those who do, and that is nearly all, the laws and customs need to change.

Allow parents to "do the right thing."

In the family

It's no great secret that not everyone gets along in the ED advocacy world. It is also obvious that the divides are getting worse and uglier. Yet, like any family, we can't just ignore one another either -- and we do have to resolve things. Hard truth: no one outside the eating disorder world cares whether we are effective or not. We need one another and we need to do a better job together.

The way forward is not through silence or holding our noses while we hold hands and sing kumbaya. We need to talk, really talk, and it will be painful and awkward.

Coalitions are possible: in the past few months, a large coalition of advocates and organizations proved that they could all come together on a topic: protesting the actions of another organization!

More and more are speaking up, these days, and we all should.

NEDA responds

I am so surprised and pleased to see a fulsome response from NEDA about a recent guest post on Carrie Arnold's blog (I posted a link a few days ago). It is enormously good news that NEDA, the largest ED organization in the US, is responsive to questions and criticism from individuals like this. I applaud them. I better understand NEDA's work after reading that post.

Many people I know have had questions recently for NEDA and feel they were not heard, nor responded to. I am hoping that this is the beginning of a new approach to transparency and collaboration.

Look at me.

What can you tell about my mental health by looking at me?

NOTHING.

What can you tell about my metabolism, my health, my diagnosed diseases? 

NOTHING.

It is not all right to judge and evaluate and gossip about people's mental health status or health based on their appearance. 

1.  It is none of YOUR business.

2.  There's no way to tell if someone is "too thin" or "too heavy" by looking. If you're not on the treatment team, your opinion is not wanted and not appropriate.

3.  Mental illness is in the brain which you cannot see. The anguish and the suffering and the triumph and the healing of mental illness are invisible.

4.  Really, folks? Really?

Why am I bringing this up? Because sometimes even my friends can fall into whispering about certain advocates being "too thin" or "looks unwell" or "is a bad example." I'm horrified at comments about "she looks beautiful, just right" or "underweight" or "overweight" or "slim."

In the eating disorders world, with what we know about weight bullying and the difficulty of determining healthy metabolism/weight and the horrific symptoms of body image distress shouldn't WE know better?

Here's who talks about being "too thin" or "looks bigger than:" ED says that. Let's not let ED have real estate in our heads, folks. Let's not diagnose people by appearance or think we understand what is going on in people's heads by appearance. We know better.

Research money: where it comes from and where it goes

We're all frustrated that eating disorder research, where it exists, is not being used in practice. That's a problem.

At the same time, there is so little real research being done and far too much of it is following the tail of bad premises of the past.

What to do?

Well, one thing we can do is look carefully at who is funding studies and then find ways to support and contribute to those efforts.

I'm hearing a lot about GFED this week and recommend checking them out.

Walking, yes indeed, walking

Where should our advocacy energy and dollars go? Carrie Arnold's guest blog is a must read for ED advocates:


Why ED charity has lost the plot

For a response, see: NEDA responds

"cerebral Afghanistan" and breach births

I needed a cigarette and a moment to compose myself after reading Research in eating disorders: should we focus on the brain?, the invigorating debate published in the new Advances in Eating Disorders journal between Philip Graham and Ken Nunn. Why can't we have more of this and why aren't more people listening?

A good debate, to me, is when I get both sides and learn something in the process. This back and forth and back, and forth, allows the debaters to exercise talents of intellect and erudition that defy the simplistic, beads and feathers, professional courtesy-addled field of eating disorders.

I happen, no, I happily choose Nunn's viewpoint, myself but I believe we need to hear Graham. We cannot make progress without the Grahams and without understanding their cautions and experience. We need that tension and distance, dare I say it, for Darwinian reasons alone!

EDC and AED tweetchat on April Lobby Day

Join the Chat! AED Tweetchat with the Eating Disorders Coalition on their Upcoming Spring Lobby Day Tweetchat: This Monday, April 8, 1:00pm EDT* Join @aedweb and the @EDCoalition to discuss the EDC's Spring Lobby Day coming up on 4/17. Learn more about their lobbying efforts and what you can do! Use hashtag #AEDchat About the EDC's Lobby Day: The EDC brings advocates together twice a year for National Lobby Days as the most effective way to educate Members of Congress and push for important policy goals like the FREED Act. Join us for a tweetchat discussion on April 8 to discuss the EDC National Lobby Day on April 17 on Capitol Hill in Washington, DC where our voices can make a difference in the lives of those affected by eating disorders. By addressing eating disorders at the Federal level, there is the opportunity to help everyone impacted by eating disorders. *To find your converted local time, click here. It's easy to join in the chat! 1. Go to tweetchat.com 2. Enter the name of the chat: #AEDchat 3. Read the posts related to this and/or sign in to add your tweets. Note: Tweetchat will add the chat locator (#AEDchat) each time for you.

We help ourselves by helping others

Kelsey Heenan and her mom spoke on a really wonderful panel at the recent F.E.A.S.T. conference in December and now she speaks with Jeff Bell (who was our Keynote Speaker that weekend) in an interview just published on the Adversity to Advocacy alliance site.

Thank you, Kelsey, for your clear and strong voice and sharing your story. You and your husband and family are a genuine inspiration for so many of us!

charismatic megafauna

In a former life I was a graduate student in the field of natural resources. One concept that stuck with me was the power of "charismatic megafauna." The public is more likely to support environmental policies that protect animals that are adorable, and unlikely to be moved by less tangible species. Deer and owls draw dollars; lichen and snakes, not so much.

I fear a similar phenomena in mental health. As much as it matters to the bereaved families that an eating disorder patient was "A former head girl and top athlete," or "brilliant" or "beautiful," these attractive qualities are rather bizarre to point up as deepening the tragedy of their struggle and their loss.

Less shiny, less accomplished, average folks with eating disorders don't deserve to die more than anyone else.

I dislike it when I read that the victims of eating disorders are "often the best and the brightest" or somehow angelic and apart. 

We should fight for those struggling with mental illness regardless of their attractive qualities. In fact, we need to acknowledge that the very symptoms of mental illness can render a person quite miserable and difficult but every bit in need of recovery and a life that is normal - not some pressure to yet another kind of perfectionism.

Almost confusing

Carrie Arnold's post on "Almost" anorexia is what I'd say on the topic if I had her writing talent and wit, so I refer you there for that.

We have a problem in this field because we all go out and do our advocacy without having central principles and understandings between us. Some of us believe EDNOS is the same as "disordered eating." Some eschew labels altogether and just want attention to anything related to eating and body image. Some see anorexia as a narrow diagnosis and others expand it to cover anything similar.

Any criticism of this language problem can come off as being divisive or mechanistic, but I really believe it is at the core of why this field lacks common ground to share.

 As a result, our arguments about why we use certain words and what we find most important to talk about or NOT say become criticisms of one another.

One approach would be that we all stay silent. Well, that won't work.

Another would be only express agreement. Dishonest.

We could form groups and bully others into saying nothing, or just shout louder than one another... no.

More talk among us would help. I find that those who disagree with me in this field rarely know me well, or have a clear grasp of what I believe or why. I make it my business to understand the thinking and disagreement of others. I welcome those conversations.

My heart falls when I seen new terms added, or current terms used fuzzily. I don't buy the idea that all advocacy is helpful and that any attention to the issue of EDs is good.

Until we start having these conversations among us, we will not present a united voice to the public. The solution is knowing one another and talking and listening and finding common principles where we can.

I agree with Carrie that "almost" anorexia is a problem on several levels. More worrying, however, is the underlying lack of agreement in the field that leads to these problems.

The public needs to know, and to demand change

There is an enormous conflict going on in the therapy world and the public needs to know.

More effective methods exist for depression and anxiety and eating disorders but the public isn't sophisticated enough to know the difference and they are unlikely to be told this by the very people they consult.

We need to support the clinicians who ARE offering evidence-based approaches. We need to find ways to make sure patients have access to those clinicians who understand that "evidence-based" is NOT a cookie-cutter attitude. Those who criticize the call for evidence are, in my experience, the ones most likely to simply not understand the difference.

It is time to call this out, to speak plainly.

Harriet Brown's piece in yesterday's New York Times is an important one, and I applaud her and the Times and all those quoted for bringing uncomfortable stuff into the light. I know some folks (read the comments) will be unable to understand and will do so with great vehemence but if the public knows the difference and clinicians start holding colleagues accountable we can really move forward.

New ED journal free online for 1st year!

I love the move toward transparency in published journals. I believe science and practice benefit from having the public and press and advocates going to the source and having open discussion.

So, excellent news: Advances in Eating Disorders: Theory, Research and Practice is available free online for the first year. I hope it will continue after that!

First issue is out NOW.

more kittens, less drama

A friend heard about my close brush with the Trauma Drama Triangle and sent me this link. Anticipating my reaction, to revive me and restore my will to live, she sent me this:



No thank you and then thank you, Kathleen!

First Follower: Leadership Lessons from Dancing Guy

I needed this today. I SO needed this. Here's to shirtless dancing guys, first followers, and the true nature of leadership!

*Thank you, Lisa. Priceless!!!!!

Binge Eating Disorder Association annual conference

I spent a lovely Saturday as a guest at the BEDA conference in Bethesda. Great location, great content, great people. I was pleased to see many regional people in the ED world and of course a cross-section of the field nationally. It has long concerned me that BED was an afterthought for the ED world and I celebrate BEDA's incredible focus and professionalism in changing the landscape.

This was my first time at a BEDA conference and I am so very glad I went. Each ED conference has its own flavor -- and I mean that literally and figuratively. There is a civility and reasonableness in the BED community that I find a great tonic to other atmospheres. This isn't to say that everybody agrees on everything because they don't. BED, as it makes us address issues of weight stigma and prejudice, presents a special challenge for a field that is often terribly fat-phobic.

We also have to address competing factions in the ED world: donations, sponsorship money, and travel commitments by attendees are not unlimited.

Oh, and the food was good. You won't be surprised to know that eating at eating disorder events can be  a touchy topic. I had a real breakfast there - something few conferences really do.

There are two reasons I'd recommend choosing BEDA over another conference next year: the content is excellent and diverse, and it is time to give concentrated attention to BED - even preferential attention. If you want to understand, treat, or talk about eating disorders it is not longer all right to be less informed about the most common eating disorder.

Another reason to get involved with BEDA is to see how conflict is addressed. It is not avoided, it does not send the leadership into defensive mode, and the environment is such that actual conversations and progress can be achieved. I saw this and heard about it from many people throughout the day. Conflict and differing perspectives happens: let's deal with it.

So, I was only able to attend for one day but what did I see? I was able to visit all of the exhibits. There was an entire room devoted to nonprofits, which I loved. I had some great conversations with exhibitors. Caught up with Kathleen MacDonald who is now working with Kantor and Kantor. Was interested to see which residential clinics are now offering BED services.

Must say, I was shocked to have someone offer to show me her before and after weight loss photos at an exhibit for a food addiction program. But perhaps more surprised to learn that I was the first to tell her how out of line such a thought is with most of the people I know in the ED and especially the BED world. Of course everyone should form and feel free to express their opinions but one does need to be familiar with other points of view. Hey, if you're going to be controversial you might as well enjoy it!

I didn't have enough time for many of the presentations but took special interest in one, "An Integrated Model: Working together with families and adolescents with BED" by Vazzano and Knudson which drew from the FBT model as well as the Skills-Based Treasure model and Ellyn Satter. Some take-homes in that session: that teens who binge eat are also malnourished and that "food is medicine." That structure around eating and a family approach may be as stabilizing for BED as other eating disorders. And that just as with FBT for AN and BN people can still sit through an hour of how to empower parents and still feel you have to ask a question of the presenters about selfish, toxic parents. It takes more than 60 minutes to change a paradigm.

I love the USB drive with PowerPoints and handouts each registrant receives.

Lovely lunch with Lisa Kantor and left the table with two new ideas I hope we bring to fruition soon. All this virtual stuff is fantastic but there is nothing like face to face brainstorming and engagement!

A special shout-out to Nancy Logue, Ph.D. at the Change the Message table. We had the most invigorating conversation of my day and I really appreciated our exchange.

And my puzzlement of the day: a clinic that spends one day of their family weekend on the Trauma Drama Triangle. I confess, I had to take a meditative breath before I responded to that.

Kudos to Chevese Turner and the BEDA team for an excellent event. I was warmed and inspired and still have a lot to process which is the whole point!

Open letter to LinkedIn Group "Eating Disorder Clinicians & Researchers"

An open letter from Leah Dean, F.E.A.S.T.'s Executive Director

Dear Members of the LinkedIn Open Group, "Eating Disorder Clinicians & Researchers,"

As the Executive Director of F.E.A.S.T., I am concerned by (publicly available) comments that have been posted in this thread  that indicate a serious misunderstanding of F.E.A.S.T.'s mission and goals.

I have repeatedly requested that the group manager allow me to join the group in order to respond to these criticisms, but have been told that the group is for Clinicians and Researchers only. I have also reached out privately to one member of the group to try and reach a common understanding of F.E.A.S.T.’s goals and principles, and have yet to receive a response. In addition, the group manager has shared my private emails to her with another member of the group who have then taken my words out of context and accused F.E.A.S.T. of threatening members of the group.

As the group members who I have contacted privately do not have a problem sharing my words with each other, I thought I would share them with you. I have removed any names and direct quotations out of respect for the parties involved.

Below is the private email in which I try to clarify F.E.A.S.T.’s mission and goals which I feel have been unfairly represented in this thread:

Dear [Name removed],

As the Executive Director of F.E.A.S.T., I am concerned by (publicly available) comments that have been posted in this thread  that indicate a serious misunderstanding of F.E.A.S.T.'s mission and goals.

I have decided to reach out to you privately, as F.E.A.S.T. is committed to working collaboratively with clinicians and researchers to provide accurate, up-to-date information and to support caregivers to choose “the most appropriate treatment in the least restrictive environment possible.” (F.E.A.S.T. Founding Principle)

[Name removed],I see that you are concerned about being misquoted and misrepresented.  I, too, am concerned about comments that misquote and misrepresent F.E.A.S.T. to a large group of clinicians, many of whom who have found our work to be helpful to them, their patients, and their patient’s families.

[Name and quote removed]

F.E.A.S.T.’s primary goal is to empower parents with up-to-date information so that they can make informed decisions about treatment options for their specific situation.

F.E.A.S.T. does not:

·       Promote any one treatment modality as one-size-fits-all

·       Accept donations from treatment providers

·       Promote, recommend or refer parents to specific treatment providers

·       Claim that eating disorders are “purely biological” illnesses

F.E.A.S.T. does:

·       Recommend evidence-based treatment strategies as a first option, because experts agree that early intervention is critical to a lasting recovery

·       Counsel parents to work with clinicians who are trained to identify the most treatments indicated for each individual patient

·       Provide caregivers a moderated space to connect and share their personal experiences with treatment methodologies, treatment providers, resources they have found helpful, and strategies for managing the day-to-day challenges of caring for a family member with an eating disorder

·       Encourage parents to become active participants in their child’s treatment

·       Encourage parents to question treatment strategies that are not working for their family member

·       Collaborate with [quote removed] cutting-edge researchers to create educational materials for families such as our 1^st Family Guide: “Puzzling Symptoms: Eating Disorders and the Brain" that is being distributed by UCSD, MEDA, NEDA, and other organizations.

·       Coordinate conferences designed for caregivers and clinicians to come together and learn from each other’s knowledge and experience. Our two US conferences have featured talks by important clinicians and researchers in the field of eating disorders including: Walter Kaye, Daniel Le Grange, James Locke, Carolyn Costin, Craig Johnson, Tomas Silber, Mark Warren, and Thomas Insel (head of the NIMH).

·       Regularly attend ED conferences to learn about current research and to try and better understand the treatment models that are out there so we can communicate this information to our members.

·       Follow and participate in AED listservs and other professional Linked In groups on a regular basis.

The F.E.A.S.T. website specifically recognizes that a multifaceted, coordinated, team approach for treating eating disorders is essential. We recognize medical stabilization, nutritional rehabilitation, behavioral therapies, and psychological therapies as essential components of a comprehensive treatment strategy.

Our page on Treatment Approaches states:

“Nutritional stability and normalization of body composition are the initial goals in modern eating disorder treatment as the psychological symptoms are understood to be exacerbated and held in place by brain changes from inadequate or erratic nutrition, and weight loss.

Psychotherapy is generally considered to be an important component of treatment. There are many approaches out there, and many combinations of approaches. F.E.A.S.T. believes families have a right and responsibility to pursue evidence-based care as appropriate. Unfortunately, very few psychotherapy approaches have been rigorously studied for use with eating disorders. We suggest parents do careful reading about both evidence based and other untested ways to approach the illness.”

“There are no treatments that can be expected to work for everyone, so identifying evidence-based treatment as a first option is important…

Lack of research does not mean that a given approach will be dangerous or unhelpful, but since eating disorder recovery rates decrease the longer a patient is ill it is best to explore evidence-based treatment first when possible.

Each patient and each family is unique, and treatment recommendations are best made by experienced experts in the eating disorder field, after multidisciplinary evaluation, and in close collaboration with medical and psychiatric clinical teams.”

[Name removed], I am particularly dismayed by this statement of yours:

[Name and quote removed]

Our website has hundreds of pages. Please do not say that you have read them all when you clearly have not. As for references to research, many of our pages have sidebars that link to relevant research studies. We have worked hard to specifically link to original sources whenever possible to avoid promoting a biased, 3rd party, viewpoint. We do this as a service to clinicians as well as parents. See for example, the following pages:

FactsTab: The Role of Nutrition

Facts Tab: Maudsley approach

TreatingEDs Tab: Treating Anorexia Nervosa

Resources Tab: Research Papers

[Name removed], I do believe that your goals and beliefs are not as far apart from F.E.A.S.T.’s as you may think. In fact, F.E.A.S.T. actually agrees with your statement:

[Quote removed]

The F.E.A.S.T. website has a very similar statement on our Fact page: The Role of Environment:

“Much of the history of eating disorder research and treatment has concentrated on two aspects of the environment: family and society. As science has more clearly illuminated the biological nature of the illness, the question of "nature versus nurture" has evolved to a "nature AND nurture" and also expanded the discussion of environment to include prenatal influences, nutrition, developmental changes, hormones, over exercise, illness, and stress. 

Some environmental influences can increase the chances of a person developing an eating disorder, but probably only if that person has a biological predisposition. A person with a predisposition for an eating disorder may never develop one if certain environmental influences never appear, or do not appear at certain developmental stages.

F.E.A.S.T. believes eating disorders are treatable biologically based brain illness. While parents do not cause eating disorders by their parenting style, we do believe the family and social environment can be a powerful tool in recovery, and relapse prevention.”

[Name removed], the voices you have heard on the Linked In thread and in the ABC article are from parents who have found elements of FBT to be effective in treating their young children. Some of them credit F.E.A.S.T. with helping them to make good treatment decisions, but their words and feelings are their own, and do not speak for F.E.A.S.T.

Our membership is incredibly diverse, representing over 2500 families from 41 countries. This is a clinical population that is beginning to attract the attention of researchers because of the successes they report when parents are empowered to be a part of the treatment process in a blame-agnostic treatment setting.

[Name removed], F.E.A.S.T. does not discount the importance of clinical work. We recognize that most structured treatment modalities are based on years of clinical observations. We actively follow the NIMH to see which clinical strategies they believe deserve research funding and we list clinical trials on our website because we know that that is how the science progresses to find the most effective strategies for treating one of the deadliest brain-based illnesses. We are currently working with researchers to see how our member population can become a resource for documenting clinical experiences in an effort to provide data for future studies.

No one on the Linked In thread, or at F.E.A.S.T., is saying that FBT is the only option, or that [quote removed]

On our website we quote the APA statement: "No evidence exists to prove that families cause eating disorders." (Treatment of Patients With Eating Disorders, Third Edition, APA Practice Guidelines, May 2006), and we DO link to specific studies that present clear evidence that parent involvement can be a critical component of successful eating disorder treatment strategies.

We also quote Thomas Insel, Head of the NIMH:

“It is indeed frustrating that so many professionals continue to promote a “blame and shame” approach to people with mental disorders.  This is especially unfortunate in the treatment of eating disorders, in which the “experts” have long blamed parents, while recent evidence demonstrates the effectiveness of parent-centered treatment (see attached from Locke et al), suggesting that parents may be the solution not the problem.”

In addition, our position statement on this issue recognizes the need for parents and professionals to work together:

“F.E.A.S.T., an organization committed to evidence-based care and parent empowerment, calls on the treatment community and society to put a true end to the era of parent blame. Freed of this burden parents can, when professionally supported and coached, be powerful allies during treatment.”

[Name removed], please know that the Linked In thread is available for anyone on the internet to read. I was able to read the entire thread simply by googling "Eating disorders in very young children: good piece on ABC news linked in."  The thread comes up as the first hit and allows me access even when I am not logged in to Linked In. Linked In provides buttons at the top of Open Group pages for members and non-members to share the link to the discussion on Facebook, Twitter, and by email.

I would ask you, in the future, to be more careful in your public remarks that have the potential to harm the reputation of a respected non-profit organization, and thus hurt our potential to help more families in crisis.

Thank you for your attention.

Sincerely,

Leah Dean

Executive Director, F.E.A.S.T.

ldean@feast-ed.org

Professional harassment

I have been shut down, harassed, flamed, condescended to, and criticized on the Internet before. If you put yourself out there and say anything real you have to expect this. When this happens, I have to  believe that if I remain reasonable and I'm confident on the facts that those observing the interaction will at least know that even if they don't leap to my defense. I'm an adult, and I can take care of myself.

But sometimes I wonder if people really know what goes on. 

Right now, a forum that advertises itself to be for eating disorder clinicians and researchers on LinkedIn has become a safe place to be unprofessional and I think that is not good for the eating disorders field. I'm pretty sure that the conversation going on there is not being widely seen as it started quite benignly with one of my posts praising a recent news article. I would not add more eyes, or flame, to that fire except that the moderator for the forum is disparaging F.E.A.S.T. in a way that will live on and really needs to be clarified. Our Executive Director and others have corresponded with the moderator but have been rebuffed.

I don't believe that in 2013 it should be unremarkable on a forum for ED professionals with 1900 members to say that the current science on eating disorders can be dismissed, that psychoanalysis is an appropriate treatment for children with eating disorders, and that adoption is at the root of eating disorder symptoms in a child you've never met. I said so, politely, and I am now the target of ugly and untrue accusations.

It is also safe on that forum to accuse a user of breaking rules of the forum that don't exist, violating a "sacred space," and you may be praised by the moderator for insulting another member. We so need professionalism in this field. I have been told I am not a professional and shouldn't be in the group, and others are not being allowed in the group now (this was not true until this controversy, BTW). I have left the group, myself: I don't know what "professional" means but this isn't it.

I have seen this pattern over and over and it still perplexes me. I know what it is: cognitive dissonance and the fiery end to some really bad paradigms. But I wonder what would happen if the public knew and professionals of goodwill felt "safe" to speak up against it. A few do now, and I celebrate them. Most are too afraid.

The forum administrator has accused me of sharing posts outside the site, not aware herself that her group is public. She acknowledged this yesterday but with no apology for her wrongly accusing me of misconduct. Well, the site is public and LinkedIn's rules are clear about sharing and linking to the site.

Judge for yourself. And if you are a member and make a comment or write to the administrator please keep in mind that we are all on the same side (of eating disorder patient recovery) and that civility is SO important. I don't expect to "win" in a situation like this. But I continue to hope that the eating disorder field will do a better job of self-regulation. I'm weary of being told "don't give it attention." That attitude just leads to more harassment. It should not be all right to harass people in this way, or to call it "professional" to mischaracterize an organization that is working to help patients and the field.

Using the term 'brain disorder' A compass or a map?

Just to muddle the ongoing debate over the term "brain disorder" for eating disorders, my say in the inaugural issue of the new journal, Advances in Eating Disorders: Theory, Research and Practice:

The term ‘brain disorder’: a compass or a map?

April Lobby Day in Washington!

A new EDC NATIONAL Lobby Day has been scheduled for April in Washington DC. I hope all US parents will consider joining in.

You know, I hear all the time from parents in that first few months after the diagnosis. They're shocked -- we all are -- not only by the illness but the "Why on earth hasn't someone..." and the list is long of all the things we need. Better research, better research dissemination, better policy, better public awareness. Well, someone has to DO it for it to get done, folks: if not for us then for the next cohort of families getting smacked in the face.

Participating in EDC's Lobby Day is not just being a face in a crowd. Each person there truly TRULY has an impact. Legislative staff pay attention not only to what we say when we tell our stories -- and that is all you need to do -- but they also realize that anyone who makes it to their office represents many many more.

EDC knows what it is doing and how much work and relationship-building and deep knowledge of the legislative process it takes to make change. You can't charge in with just passion or a good idea. It takes years of work and selfless dedication. EDC does this, and has a track record of success, without self-promotion or an enormous budget. They do this work not to raise funds for their organization or to promote themselves: they are a coalition of organizations, families, researchers, and clinicians who pitch in to help. We all play a role and we are all missed if we're not there.

Don't worry: you don't need to understand the legislative process or how to find your way around the Capital. You get training, you move around with a group, and all you need is YOUR UNIQUE STORY. That story matters. Go tell it!

bla bla fishcakes

For those of you who know what I'm talking about there is good news.

THE CANCER IS NOT TERMINAL.

It's regional, and it's treatable, and she is doing well.

I need a drink. (She is already doing so!)

This is not Rumplestiltskin

There is a statement in the ABC article I mentioned yesterday that has people grumbling.

"The illness is biological, but the triggers are social: trauma, divorce, even a throw-away comment like, "Aren't you a chubby little girl," said Grefe. "You are born with the gun, but life is the trigger -- and there are a lot of them."

I hear that and I think of magic spells and mythical curses. Rumplestiltskin and secret spells. The idea that a child is one statement or one life event from horrific mental illness is, well, not supported by the science. It's not supported by the rest of the article! This is a Hollywood vision of mental illness and it is time for us to stop promoting it. It isn't true, and it causes harm.

It says "Your child has a life-threatening delusional terrifying mental condition and SOMETHING DANGEROUS triggered it. Suspect everything, just to be sure. Regret everything. Put your energy into that and don't think your child will get better until you've made the world perfect and you've apologized for everything."

What's really going on is that the evidence for a biological basis for eating disorders is no longer being denied it is simply being misunderstood and re-packaged to suit the same old same old blaming we have always done around eating disorders. If a "throw-away comment" can "trigger" life-threatening mental illness and expected life events like divorce and "trauma" can too then maybe the idea of "trigger" is absurd and needs to be revised to "life."

Life "triggers" eating disorders, and I don't think we're going to prevent life so probably better to work on treating eating disorders instead.

ABC News on Anorexia Nervosa in Young Children

I have mixed feelings on Eating Disorders Awareness Week. Being an ED Curmudgeon, I want the "Awareness" to be of the right things and the most important things. I brace myself at the end of February each year for the distorted mirror illustrations, the phrase "painfully thin," and the phrase "starving for" followed by almost anything.

And yet, and yet... this is the week that many news outlets will assign pieces on the topic and these are opportunities to refresh and update the public "awareness" of eating disorders. The parent Googling in the next year is more likely to find better information than before.

It's only the first day of the "Week" here in the US but it comes with glad tidings:

Anorexia Can Strike and Kill as Early as Kindergarten

In which such important statements are made as:

"Anorexia nervosa is a relatively rare and chronic brain disorder with no known causes."

"But it's not caused by the media or by pressure to be thin, though people like to blame that," she said. "Parents don't cause eating disorders and children don't choose to have them."

"You can't cause it even if you wanted to," said O'Toole. "It has nothing to do with fashion magazines. We see farm kids, religiously-raised kids who are homeschooled and have no access to television ... who developed anorexia nervosa."

"Anne was desperate, so she went online and found the "Magic Plate," a term used to describe how parents approach feeding their child -- and the website for the organization F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders)."

Now, those who know me will notice there is an error in the piece, and ABC is going to fix it. You'll also know that one of the quotes in the piece sticks out painfully as refuted by most of the rest, but sunlight is the best way to see how different organizations approach the issue.

"Awareness" that some still look at serious mental illness as something "triggered" by random comments is also important. I believe that belongs in the category of women going "mad" from reading novels and how foul humours cause illness, so...

I want to note with enormous, enormous gratitude to Susan James and ABC News the illustrating photo for this piece. A real child, just a child - an illustration of the reality of this disorder and the lovely children we need to save and the families that love them dearly.