Sunday, January 18, 2015

Eating Disorder Hope: Starting A Dialogue

For some time, a group of advocates has been concerned about the content of the website Eating Disorder Hope (EDH). The site is designed to have an educational feel yet many articles were outdated and promoted the debunked psychosomatic family illness model (the eating disorder as an expression of family dysfunction). The situation was similar to the Something Fishy website in that a high SEO ranking means many people searching for information land on this page.

Members of International Eating Disorder Action sought to begin a conversation with queries sent to the Contact Us information on the site and via blog and Facebook comments and tweets on pieces whose content we objected to. Our comments and missives were direct yet never abusive. With all reasonable attempts to open a productive dialogue stymied, one of our members (JD Ouellette) filed a BBB complaint on the grounds the connections between the information and the advertising was not clear enough.

We are pleased to announce that a dialogue began on Twitter with IED member E.C. and that we have seen a big shift in the postings on the site. Thank you to all who helped with comments and tweets. Access to the most up-to-date research, and information about the evidence-based treatments informed by that research, is of the highest priority and we are pleased that EDH has decided to show their commitment to the HOPE portion of their name by publishing content that supports this mission.

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Letter to Eating Disorder Hope sent by Amy Cunningham of IEDAction and their response:

Thank you so much for your willingness to listen, engage and dialogue about the content of Eating Disorder Hope.  It may be helpful for you to understand that our mission at International Eating Disorder Action includes being a watchdog for outdated information and promoting the dissemination of evidence-based information.

We believe that societal viewpoints that consider eating disorders to be disorders of choice, vanity and family dynamics instead of brain-based, biological illnesses negatively impact early diagnosis, access to aggressive, appropriate level-of-care treatment and research funding parity.

As you know, the last few years have seen an explosion in research findings surrounding eating disorders. Still, some clinicians find it difficult to let go of what they “know.” For so long, eating disorder treatment and practice was based on the psychosomatic family illness model and that has driven practice. This is not to assign blame—everyone was doing the best they could with the information they had at the time.

We do have new information now and we need to use that information to promote early diagnosis, access to aggressive, appropriate level-of-care treatment and research funding parity. We have to operate with caution when we share information about eating disorders.

Without line-editing previous posts (as that puts an onus on us to approve content and that is not an appropriate role for us), we feel that a strong editorial policy would give submitters the guidance required.

Questions to ask are:
·      Is there solid and current evidence the statements in this piece are true? Are there citations to verify this?
·      Is there a possibility this piece is reinforcing myths and disproven stereotypes?
·      Does the information in this piece represent solid research or anecdotal evidence?
·      Does the information in this piece promote evidence-based treatment?
·      Does the information in this piece empower parents/carers to help their loved one or does it disempower them by blaming them (even inadvertently) for the eating disorder?
·      Does the piece state that eating disorders are preventable (there is no evidence for this yet)?
An editorial policy such as that outlined above, combined with encouraging dialogue and discussion in the comments without a defensive posture, should lead to positive changes which fulfill the idea of providing hope to those whose lives are touched by eating disorders.

Dear Ms. Cunningham,

Greetings and Happy New Year to you as well!  Thank you kindly for taking the time to submit this invaluable feedback.  We appreciate the constructive dialogue that we have been able to have thus far and gladly receive your suggestions and input. We deeply respect the insight and feedback from our community and the group of parents/survivors that you represent.  

I will be sharing this letter with our organization's president and our other team members, and we will move forward with discussion about how to best integrate the helpful suggestions you have outlined.  We sincerely look forward to collaborating together to further promote our mutual goals and missions.

Thank you again for your time, efforts, and for the tremendous work you are doing in the eating disorder community.

With Warmest Regards,

Crystal Karges

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These are specific blog posts we commented upon as representative of our concerns that while lip service was paid to families not being responsible for eating disorders the message reinforced the psychosomatic family illness model of parent blaming.

Coming Home from College: Eating Disorders and College Breaks by Dr. Gregory Jantz

Overcoming Family Conflict During Eating Disorder Recovery by Katie Thompson, MS, LPC, NCC, CEDS from Castlewood Treatment Center 

Communication Skills for Families in Recovery by Dr. Gregory Jantz

The Link Between High-Achieving Families and Eating Disorders

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