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.
Sincerely,
Leah Dean
Executive Director, F.E.A.S.T.

11 comments:

  1. Excellent letter, Leah Dean! Thank you for speaking up for all of us members and parents who belong to FEAST and who have found exceptional support and information on the FEAST website and in the forum, Around the Dinner Table! I salute you!

    I am the parent of a young adult who became ill at age 11. We never used Family Based Treatment, or any other evidence based treatment until she was 21. She tried DBT and CBT for her eating disorders, but neither was very helpful. In her mid-twenties she underwent a mind shift in which she became open to the idea that she could get better and that she wanted to get better. Since that time, with the help of an excellent psychologist who does individual supportive therapy with her, she has made great strides in being able to stop eating disorder behaviors. They are working on her several serious comorbid disorders, too.

    I wish that FBT had been available for us to try when she was young, but it was not. I think it is a great first option, and I know many parents for whom it has been very helpful in the treatment of their children with eating disorders. FEAST gives us information about ALL of the options out there, so that we can make a educated decisions about what to do to save the physical and mental health of our children who have the misfortune to manifest eating disorders.

    If anyone took the time to look through the threads on the Around the Dinner Table forum, they would see that many paths have been taken by the parents there to get effective, appropriate treatment for their loved-ones. We all know that no one treatment works for everyone, and we value knowing about the different experiences. Hurray for the wonderful job being done by FEAST to get the most accurate, up-to-date information out there for all of us to access easily.

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  2. Yes, I wish everyone could be civil in these types of interactions, and it is something I strive to do always, in all of my relationships, whether in real life or on the internet. We all do have the same goals in mind, that of helping those who have eating disorders to recover, physically and mentally/emotionally. We should all be open to examining new information/research about different treatment modalities. Let's move the treatment of eating disorders forward!

    Thanks, Laura, for being a voice of reason and knowledge and compassion.

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  3. Thank you Leah Dean! This is quite a calm, well reasoned and beautifully supported letter. It is now part of the public domain. Thank you FEAST for moving the treatment of eating disorders forward for ALL!

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  4. Sophie's mom, Anne, here. I have mixed views of the publicly available LinkedIn thread in "Eating Disorder Clinicians & Researchers". First, it has value in showing how uneducated some treatment professionals are--any parent reading the thread will see very clearly why care must be taken in choosing a person to treat an ill child. We parents want clinicians who are up on recent research, and who are able to involve us in our children's care so that we can avoid the weight and state roller coaster that is so common in ED treatment that my local hospital even said that one should expect multiple hospital admissions in the course of this illness. On the other hand, the thread is destructive, because of all of the misinformation about FEAST that is stated there. As a parent I read many research articles published in peer-reviewed journals. I found these articles via medical databases, but also on the FEAST website. The FEAST website is a tremendous resource. FEAST allowed me to immediately begin turning around the course of my daughter's anorexia, the morning after Sophie whispered the words "I'm hungry all the time but can't eat".

    How did I read the LinkedIn posts? By clicking on a link. As a non-member, I could read them all.
    http://www.linkedin.com/groups/Eating-disorders-in-very-young-2176720.S.217340672?qid=ef8a9a2d-9ec6-4a69-9ee6-0fc3c59574e1&trk=group_most_popular_guest-0-b-ttl&goback=%2Egmp_2176720

    I extend my heartfelt thanks to Laura and Leah for tirelessly advocating for families and for effective treatment for ED sufferers.

    I'm also very grateful to the nutritionist who posted on the thread, stating that the ABC News article is valuable to her and that she will share it. I very much want Sophie's story to help other children and families. I would also like to refer this nutritionist to Therese Waterhouse, a registered dietician who uses FBT principles in her practice and deeply believes in family-centered care. She works closely with parents of children who are using FBT and family-centered modifications. Therese is glad to speak with other dieticians.

    Anne, Sophie's mother

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  5. Just another parent of an early onset coming on here to say thank you and to dispell the latest myth on that link'd in thread for clinicians.

    I used FBT and saw a nutritionist privately. She was as valued member of our clinical treatment team. Thank you to FEAST. Forever grateful....

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  6. I don't know how you do it, Laura. Managing to stay calm when faced with utter insanity. The fact that these clinicians cannot even fathom a biological basis, that they still rely on "family systems" that the who adoption of a child becomes the cause of her ED?!? Do they approach cancer patients the same way? "Well, obviously your cancer is due to the anger you felt as a child being put up for adoption..."

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    Replies
    1. opps, my son's account....it's me, Erica F!

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  7. Thank you Laura Collins and Leah and particularly Leah for this wonderfully, well thought out and supportive response. I could not have saved my daughter's life without F.E.A.S.T. and the forum; Around the Dinner Table. How is it even possible for anyone to question an evidence based treatment approach or those who support it? I can't even go on to comment further as those commenting before me have made the point so much more eloquently than I. At the end of the day, my daughter is healing and we are on a road to full recovery. Those even remotely questioning the role of a parent, particularly the love, care and devotion of an adoptive parent of a child who developed an ED is shameful - particularly in light of the plethora of evidence in research we now have. I agree with Anne, Sophie's mum, that perhaps it is a god-send that this LinkedIn thread is available to all when googled - just goes to show those who are unable to interpret evidence, are in fact, steeped in ignorance. So very sad and kudos' to you and Laura for the phenomenal work you both do.

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  8. Thank you Leah for this excellent letter and for speaking from all of us whose children couldn't have been where they are now hadn't we found F.E.A.S.T.and, thank you Laura for your tireless work of advocacy. I am not a member of LinkedIn but could read the posts on line.

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  9. Thank you Laura and Leah for your advocacy. I read the Linkedin thread without being a member as well. I was dismayed to read the misinformation purported by clinicians in the field no less. My D has been treated by a FBT team which included trained psychologists, a psychiatrist, a dietitian, an occupational therapist and a pediatrician. FBT is the public funded treatment offered where I live in Australia. They also offer modified versions of FBT and other therapies for eating disorders if FBT is not suitable/working. I hardly think the Australian Government would pay for ineffective treatment that is not based on actual evidence. That's right, we have not paid a cent(other than taxes)for the 2 years of FBT our D has had it has all been paid for by the Australian Government. Our D is getting better and is almost fully recovered.

    My D has never been IP (in patient) and I believe it was largely because we were offered FBT from the get go and because I found F.E.A.S.T which gave me incredible parental support so I in turn was able to support my sick child eating. Now that she is properly weight restored and eating on her own, our therapy sessions have changed. Our D sees one of the therapists on our team alone and her dad and I see another therapist separately and we get together at the end for a "catch up". Our D is working on some of her co morbid and pre-anorexic issues in her sessions.

    Some of the clinicians posting on the Linkedin forum don't seem to have the correct information about what FBT entails particularly what stage 3 therapy "looks like". Sigh. Thanks for all those trying to inform. I appreciate your efforts.

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  10. Thank you Leah Dean for your clear and cogent response to those who have misunderstood and misrepresented F.E.A.S.T.'s core evidence-based approach to eating disorders. I think it is important that those who have also posted comments send this discussion on to their friends "as a topic of interest." One can never know, as circles of friendship ripple outward, where an eating disorder may be quietly underway -- and is not being faced. Greater awareness of F.E.A.S.T. and its principles will go a long way to ease the unspoken illness that hobbles too many of our children -- and adults.

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