November 27, 2013

Hair dye is therapy

My friend Charlotte is out of surgery and stable. I coped with waiting to hear that by dyeing my hair blue.

She and I scandalized our daughters this summer when Charlotte messed up her kitchen indulging my whim the first time. This time, my daughter helped.

Well, C, in your honor!



November 25, 2013

Science without fisticuffs: well done, Chris Thornton

Once in a long while someone stands up and talks sense without polemics or something to sell.

Chris Thornton's online video talk, "The Model & the Clinician: Who Comes First," published by ANZAED, is such a moment. And no, it is not about Size Zero Models, it is treatment models, silly!

Would you like to hear the real numbers on Family-Based Maudsley Treatment without hyperbole or apology? You may not like the answers if you are on a "side" on this -- which none of us should be. That alone makes the 36 minutes well spent.

Are you interested in what the data tell us about manual-based treatment, about clinical skill, and why skilled therapists need to have confidence, humility, and science literacy, this is time well spent.

It is time for us to stop being "pro" and "anti" Maudsley and CBT and Motivational Interviewing and CRT and on and on. It is time to stop pitting clinician against manual. It is time for a really robust discussion about why we do what we do, and why many people of goodwill disagree.

November 24, 2013

Charlotte's Helix starts collecting DNA

This was quite a week over at Charlotte's Helix. If you haven't been following it, make sure to bookmark or subscribe to the Helix blog.

For one thing, Kings College London signed on to do the DNA collection side of the project. This is big. Really big!

But this is huge: they started taking collections the day after it was announced. The kind folks putting on the National Carers Conference for Eating Disorders at the Maudsley hospital (yes, THAT hospital) were kind enough to not only put the Helix project on the stage but also to facilitate a first blood draw: from Charlotte's dear friend Miranda B., the blogger and mental health activist.

I am so glad. It has been a very difficult week for Charlotte Bevan. She had a terrible infection, bad reaction to antibiotics, and dreadful pain. She was hospitalized, which she hates, and then moved hospitals, where she is awaiting surgery.

We are all hoping that the knowledge that Charlotte's Helix is collecting DNA is a warm spot in a tough time.

A presentation that Charlotte was scheduled to give at the Carer's conference was delivered by her partners in the project, Erica Husain and Fiona Bromelow. Her name and her work were a big part of the day, I hear.

And this: the book that Charlotte and I have been writing was published. Sort of. An early version is available for sale. The final version will be available soon. Email for link. All proceeds go to the Helix.

So, this week Charlotte became a published author, delivered an important message at a conference, and had her dream of Charlotte's Helix come true.

November 18, 2013

Testifying at AMA meeting: It's all about the coffee

Thanks to my dear husband who navigated the early hour, the fog, and an uncooperative coffee dispenser I made it to National Harbor yesterday to testify in front of the AMA's Congress group deciding on a resolution on insurance coverage.

Many thanks also to Michael Linskey and Dr. David Fassler of AACAP for the invitation and introduction. Thank you for requesting a family member to testify (I think I was the only non-doctor in that room!) it was a tremendous honor to speak on behalf of millions of American parents.

Thanks also to Mark Moran for the interview!

I love talking about families and eating disorder recovery.

November 13, 2013

Becky Henry featured in new book out TODAY

Parent activists are a special group. We stand up for our kids and for parenting and I love celebrating fellow activists and advocates so much.

Today I celebrate Becky Henry. She is featured in a book out TODAY, and we need to spread the word. Congratulations, Becky, and may your example inspire and energize others!!


November 8, 2013

Mazel tov, Eating Disorders Coalition!

Hearty congratulations and GRATITUDE to the Eating Disorders Coalition for the big win today on parity legislation. Your work is so appreciated and important. THANK YOU for this.

  
The EDC has worked tirelessly, in the past two years to put pressure on the Administration to release the regulations for the Mental Health Parity and Addiction Equity Act of 2008 and to clarify that eating disorders must be covered at parity.

This morning the Department of Health and Human Services released their final regulations on the Mental Health Parity and Addiction Equity Act of 2008.  The EDC was part of a conversation this morning with HHS and the Substance Abuse Mental Health Services Administration where they outlined the final regulations. The EDC is excited about a number of the provisions.

While the final rule doesn't require that residential services be covered, it does require that if a managed care organization (MCO) or health insurers offers "post-acute care services," then they also must cover residential treatment and other intermediate services on the behavioral health side. Simply put, it means that if a health insurance plan covers chemotherapy [a post-acute oncology intervention after hospitalization], then it must cover residential treatment of substance use disorders or eating disorders. The rule ensures that parity applies to intermediate levels of care received in residential treatment or intensive outpatient settings.

Another, tremendous win for us, is that the final rule clarifies that parity applies to all plan standards, including geographic limits, family type limits, network adequacy.  As many of you have encountered, you've needed to travel out of state to treatment centers so this is tremendous.

The EDC is particularly encouraged by the network disclosure requirements, the final rule will require that MCO's/Insurers disclose medical necessity definitions and the process used to construct NQTL.  This has long been a difficulty faced by people denied coverage for their eating disorders.

This is a tremendous victory for all of those who have struggled through getting insurance coverage at parity. Thank you to those who shared your stories with us, called your Members to advocate for parity, and of course, attended our lobby days. This is our victory together!

I'm Walter White. Without the meth. And for a good cause.

I've been a full-time volunteer for ten years now. I'm not paid and I'm not getting rich or famous. People often don't like me and the messages I carry. I'm frequently misunderstood. Other advocates criticize. People complain that not enough is getting done or it is being done wrong. My family would just soon I not run around tearing my hair in frustration. What happened to the quiet writer in the laundry room?

I'm Walter White. I did it for me. I liked it."

Except it isn't cooking meth and it really is to help other people. But, advocacy isn't purely selfless or you can't keep it up. You have to want to help others, feel good about it, believe if you weren't doing it that you'd be missed. You also want others to join you because you think it will make them feel good too.

Like Walter, I don't do it alone: without my husband to do the paid work, my kids to spare me, and hundreds of volunteers out there working with me nothing happens. It doesn't work without finding and working with and being there for lots of other people: some quiet and some visible. Advocacy isn't a solitary activity and if you piss EVERYONE off or only promote yourself you aren't an advocate you're just an angry person in a corner alone. Actually, that really is Walter White.

Adversity 2 Advocacy is a terrific new organization that gets this. They celebrate the benefits of paying it forward. I'm proud to be an A2A supporter and just tickled to pieces to have been interviewed the other day by the founder, the marvelous and melifluous Jeff Bell, and given the chance to discuss advocacy and F.E.A.S.T. and Charlotte's Helix. My name and face and voice may be what you see, but I am just one person who represents the work, caring, sacrifice, and of many others. Join us!


November 6, 2013

Researchers at Columbia University offer free bulimia treatment

Hi Laura,

We love your website here at the Teen Bulimia Study at Columbia University. Way to go for making a difference and shining a light in this field. (thank you)

We're hoping that you might be interested in helping us with a post on our Teen Bulimia Study, http://www.teenbulimiastudy.org. The more insight we have into bulimia, the closer we get to answering questions about recovery and the disease. We currently only need 10 more teens with Bulimia to complete the study for insight on brain mapping and restoration in teen bulimics.

As background, this is a NIMH-funded study of adolescent girls with Bulimia Nervosa (BN), ages 12 to 17 years. The aim of the study is to further our understanding of the neurobiological factors that may lead to the development and persistence of BN. 

Compensation (up to $900) or treatment for BN in our eating disorders clinic (free of charge) will be provided for participation.
With only one child psychiatrist in our clinic, we have limited resources to provide treatment to all of our BN participants but are looking to recruit teens who might already be in treatment elsewhere. 

Thank you for taking the time to read this email!

Best,
Kate

P.S. here is a summary of the study:


Columbia Center for Eating Disorders Offers No Cost Treatment To Teens with Bulimia Nervosa!

Researchers at Columbia University Medical Center are interested in learning about the development of Bulimia Nervosa. We are looking for 10 more girls (12 to 17 years) who binge eat and purge to participate in the study. They can receive inpatient or outpatient treatment at no cost. Monetary compensation (up to $900) is also available. Please call the clinic (212-543-5739) and visit the study website for more details: http://teenbulimiastudy.org/

November 5, 2013

Participants needed for a study on how individuals with eating disorders talk about it: please help!

Hello Laura,

In the theme of "sample size is everything," maybe you can help me out.  Do you ever blog about current research opportunities for individuals with/in recovery from eating disorders? 

I'm a psychology student at the University of Saint Joseph, and am conducting a study which examines how individuals with eating disorders talk about their eating disorders. If I get enough responses to have significant results, this study could give insight that would further knowledge of evidence-based practice in treating eating disorders.  I'm looking for more participants.  Anyone who is at least 18 years old and has ever been in any type of treatment for an eating disorder (currently or in the past) is eligible to participate. The Institutional Review Board at the University of Saint Joseph has approved my research.

The study takes less than 30 minutes to complete, and participants may enter a drawing to win an Amazon gift card after completing the study. The study can be found at the following link:http://www.psychsurveys.org/cistulli/eatingdisordersandaffect
For more information, participants/potential participants may call Dr. Kristin Henkel Cistulli at 860-231-5437 or email her at kcistulli@usj.edu  
Would you be willing to post something on Laura's Soapbox about my study?
- Mary Duffy

Charlotte Bevan has a Magic Plate... Award

F.E.A.S.T. announced yesterday, along with a UK Task Force member on her doorstep with the prize in hand (and cake!), that Charlotte Bevan is the 2013 Magic Plate Award recipient. Well deserved and sent with love.

Congratulations, dear Charlotte, and thank you for all you do for all of us. You inspire, you fire us up, you keep us honest. Thank you!