March 29, 2013

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.

March 26, 2013

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.

March 16, 2013

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.

March 12, 2013

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!

March 11, 2013

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 1st 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.
Leah Dean
Executive Director, F.E.A.S.T.

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.