Part 1: The F.E.A.S.T. Conference, January 30-February 1, 2014: Connecting the Dots - Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Now living my 70th year, I am less enthusiastic about traveling given the increasingly unpleasant conditions one needs to contend with including less space, more fees, and fewer amenities.  However there are several things that will get me on-line to make travel reservations, among them visits to see my four grandsons (and their parents!); vacation trips, particularly those that give me some refuge from the summer heat where I live; and opportunities to learn - treks and conferences especially.  Included under the conference topic are offerings providing more up-to-date and family-based-therapy-oriented (the best kind IMHO) information about the treatment and understanding of eating disorders.

So, when F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) identified Dallas as the location of the 2014 Conference scheduled at the end of January/early February, I  allocated accumulated miles towards a round trip (one hop) ticket, reserved my space at the early bird registration rate, booked a ride at a reduced rate on a shuttle that promptly picked me up and dropped me off going to and returning from the conference and booked a room at the Crown Plaza Hotel (for me 5 stars) located outside Dallas in Addison in what turned out to be a lovely neighborhood for walking at the end of the day.

Startling advances have been made in knowledge about and treatment of eating disorders from the time of my family member's first residential treatment in 1991 following at least two years of group therapy (I was told one month IP would do it, she could go on to begin college in the fall, and amazingly enough the cost at that time was $30,000) through her second relapse beginning in 2002 up to the present day as she continues to deal with the ED monster plus co-morbidities.  Although some therapists -- and organizations -- have continued to advocate for parentectomies and/or the sidelining of families where the individual's life takes place for a sizeable portion of the day, Family Based  Eating Disorder Therapy is gaining traction among psychiatrists, medical personnel, therapists, dietitians as well as treatment teams at major and well-known treatment centers coast to coast in the United States.

Laura Collins' book Eating with Your Anorexic (2005) was my first encounter with a variation of the FBT approach and although I learned much from it, we were not able to implement Laura's or later Harriet Brown's in her book Brave Girl Eating (2010) experiences because our family member's first encounter with psychiatrists at a local hospital and four months later therapists at a well-known residential treatment center told her that we were the problem.  Following treatment she refused to even consider living with us or our assistance in spite of our willingness to drop everything and provide her with a structured transition.  Fast-forward through more diagnoses, well-meaning but uneducated moves by those within her mental health provider to force her to choose to change her behaviors and "just eat" despite a severely malnourished state, many more residential treatment stays ranging from three to six (the longest) months that overlapped more recently with four years of a coordinated team approach to somehow find a way to help her change her behavior and here we are today with an exhausted and  discouraged woman who has pretty much given up on any hope of recovery from her eating disorder or a productive life unless she can find a solution to "the food thing."  The "food thing" and DBT appears to be her way "out" of several behaviors and she has an excellent local therapist.  Getting her to therapists and her dietitian and later getting herself there are major goals once she again is on her way to being re-nourished sufficiently.

As is noted and endorsed by top people in the field in the new F.E.A.S.T. Family Guide (January 2014) titled A Feast Guide to Eating Disorder Treatment:  How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S., (p. 3):  "The immediate goals of ANY [emphasis theirs] treatment approach should include:

1. interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan"

Yet/meanwhile, advances in understanding have continued.   A clearer definition of Evidence-Based Treatment and its application in the field is causing therapists and psychiatrists to re-think and even profoundly alter their treatment approaches.  I wish more professionals would at least listen to and perhaps get away from stubborn denial that another approach could work.  Neurological studies such as fMRI studies conducted by Dr. Walter Kaye, Program Director of UCSD based Eating Disorder Research andTreatment Program, and interpreted for parents and families by psychologist like Dr. Laura Hill in her 2012 TED talk have revealed that the malnourished brains of those with eating disorders do not process information in ways scientists and therapists might expect.  Others like Dr. Julia O'Toole of the Kartini Clinic have begun to provide, through blood/endocrine studies of their patients, what she terms a "Definition of State not Weight."

The fastest way for me to learn about and understand and hopefully introduce to my daughter's treatment team (who are overwhelmingly busy as are most providers with multiple clients and limited time) is to either attend conferences or study published research papers which often need to be interpreted for a reasonably well educated person (me)  by people like Carrie Arnold who recently published Decoding Anorexia (2012).  When I hear about eating disorder conferences, I look for those that will provide me and others with updates and understanding.  The F.E.A.S.T. conference offered potential.  I grabbed the opportunity.

Although all the offerings were important to and well-attended by the conference go-ers, mainly caregivers, seven sessions were of specific interest to me to address the issues I've listed above.  I've attached a link to the bio's of all the speakers.  Here's a link to the full two-day program.     We were told that videos of the entire conference sessions and the powerpoints of presenters will be uploaded at a later date so I will not go into the detail I provided when I blogged about the first F.E.A.S.T. conference in 2011 (also in two parts and here are link one and link two for those - note that these are available via video on line) but rather quickly, in Part 2 to be published in a couple of days, describe some of the highlights for me.

Laura Hill's keynote, "Eating Disorders from the Inside Out"
Lucene Wisniewski's "Is There a role for DBT in the treatment of adolescent eating disorders"
Laura Collins Lyster-Mensh's "An Advocate's Vision for a Complete Spectrum of Care"
Siobhan McGurk's "It's Elementary:  Decoding the Evidence in Evidence Based Medicine, a How-To Guide"
Kerri Boutelle's "Family-based therapy; What parents should know"
Julia O'Toole's "Towards a Definition of State Not Weight"
Colleen Wise's "How to advocate/educate while telling your story"

I attended all the offerings except when two were offered at once.  I'm always interested in improving self-care -- needs to be extreme at times -- and learning about recovery stories so I attended those sessions offered the first day by Becky Henry and the second day by Julia and Sonja Kranz, moderated by a remarkable therapist (who blogs) Sarah K. Ravin. Two grandparents of another young woman who is in recovery offered "how can extended family support a loved-one with an eating disorder."  I enjoyed meals twice with the grandmother.  There were at least four young women in recovery at the conference. These conferences also offer opportunities for renewed and new connections.  I want to mention here that I am grateful to Claire S. for her warmth and companionship during the conference when I struggled at times.  We met each other on the van ride to the hotel and reconnected several times during the conference.  Claire runs two support groups in Santa Fe, New Mexico.

Before going into specifics in my next post (Part 2), I want to applaud the conference committee not only for an outstanding conference but also for selecting a wonderful hotel (food, service, areas to socialize, meeting and dining rooms, and my wonderfully quiet clean well-appointed room) that provided a map of a safe 2 mile walk through a neighborhood and around a small lake.  The schedule, while packed each day, was do-able and time was allotted for discussion.  When discussions carried over, flexibility helped those attending to gain more information.  Several speakers attended the meals and willingly shared more information and answered questions.  For example, I was bowled over by Laura Hill's willingness to enthusiastically share what she has learned by interviewing people while they are getting MRI's.  Several of us spent our entire Saturday morning breakfast plying her with questions which she expansively answered.  I entered the meeting room in grateful tears and profusely thanked Leah for such a great conference.  As usual, we all  laughed as well as cried during  sessions and all seemed to thoroughly enjoy the casual, western-themed dinner party on Friday night.

Finally, in this introduction to the conference, I want to comment on what seems to be a universal component for families and that is the sadness in the recognition of how perilous and tragic the assignment of guilt/blame is when families (both sides of the equation) are battling eating disorders. 
We can never know both sides of each family's and their unique beloved family member's story without living the experience with them.  Nor can we possibly fathom the anger that comes from involvement with the invader that takes a family member away from their family and often turns them into someone we don't recognize and sometimes who turns completely away from his/her family to the point of long-term estrangement.   Harriet Brown, in her book Brave Girl Eating, referred to that "person" as not-Kitty as a way of separating her beloved daughter from the eating disorder.  Colleen Wise described the loving effort she took to reunite with her precious daughter by arranging retreats for the two of them.  One cannot describe the agony of being a parent separated from the love of one's child by this wretched disorder.

I really do hope that someday each family member affected by an eating disorder can recognize that everyone was doing the best they could at the time with what they were told by people they believed knew what they were talking about.  A saying I learned (and have mentioned on this blog before) while attending a NAMI Family-to-Family course is "you don't know what you don't know."  We parents are forever learning how to learn while dealing with this awful brain disorder and its aftermath.  

A sincere thank you to everyone who participated in this year's F.E.A.S.T. conference.  

The Wellness Recovery Action Plan - W.R.A.P.

Almost two weeks ago, as I was sitting in a Crisis Center Emergency Room, a peer counselor started a conversation with me and introduced me to a program I'd not heard about before called the Wellness Recovery Action Plan.  I have since learned that this program is being used in other countries and is gaining traction in the United States as well as in my own community's mental health teams.

Here is the link:  http://www.mentalhealthrecovery.com/wrap/

The peer counselor handed me his copy of the manual (can be ordered on line) so I could browse through it while I was waiting.  My brief cursory review told me three things:

first, that the program actually is quite simple, straight-forward,and relevant;
second, that I might even be able to use it for myself, as a parent; and
third, that the forms included in the manual can be copied and used.


I ordered the manual and will write further, have adopted some of the practices, and wanted to provide another avenue to get this information "out there."  The acronym KISS comes to mind in a good way.

Back to Basics

I haven't been inclined to post lately, mostly because I've had nothing new to write about and have set an intention that I'll share new information here rather than rehash old stuff.

However, this past week I was again reminded that people who are not fully versed in eating disorders (by fully versed I mean eating disorders are their main focus rather than a subset of, for example, brain disorders/mental illness) forget a basic principle.  I'll get to the principle in a moment.

I thought of this principle in frustration the last few days and know that behind this basic idea is the message that the film Someday Melissa and other media continue to remind us of:  bulimia can be invisible except to the person who has this eating disorder.   (The blog linked within the site for Someday Melissa includes this post revealing that well known people like Lady Gaga, Katie Couric, Sally Field, Jane Fonda and Jessica Alba have fought this, as well.)  I know it was for my parents; they didn't have any idea.  I know it was for me when my family member seemed to be better for six or seven years before the relapse.  I know the seriousness of bulimia can become less visible to a treatment   team when they are looking mainly for weight loss.  Why?  because often, those with bulimia maintain a steady weight and appear okay; because often, those with bulimia carry on their binging and purging in secret and the effects can be invisible except to those who know what to look for.  The side effects of bulimia can and do kill.

The National Eating Disorder Association provides a helpful/informative summary here.   Re the effects of bulimia on teeth, I believe destruction of teeth not just staining would be important to add.

Years ago at the Grand Canyon I remember noticing a sign posted somewhere (I think at the South Rim) that says, "Water is Life."  Without water one can die on the trails of the Grand Canyon.  Without water, one can die.

Well, food is life, too.  Without food, life dies.

A drug addict or an alcoholic can quit the drug or quit the alcohol and continue to live.  This decision can be more difficult for some than others, but they can quit.  Those who have managed to quell these addictions and maintain recovery sometimes believe that those with eating disorders should be able to quit, too.  Straight forward thought but misguided. 

One cannot quit eating food and continue to live.

Overcoming anorexia is hugely difficult but can be done, especially if the family of the person allies with their relative to seek assistance to overcome it early.  Overcoming anorexia subtype bulimia is also hugely difficult because the anxiety and the fear of food is still there but in addition the person has developed an addiction to binging and purging that leads the person to eat the very food(s) s/he is afraid of.  A vicious cycle. But not insurmountable.

Recovery is possible.  Habits can be broken and these diseases can be overcome.  How?

To quote Sarah Ravin in her excellent post "Expanding Our Minds:  Towards a Biologically-Based Understanding of Eating Disorders" of January 18, 2014:

".... behaviorally-based psychological treatments focused on symptom management and skills building can be very effective, in large part because they change the brain [emphasis mine]."

One effective treatment for bulimia is dialectical behavioral therapy (DBT).   Dr. Ravin writes,

".... CBT and DBT are forms of psychotherapy which involve a relationship with a therapist who instills hope, provides support and feedback and accountability, promotes awareness of thoughts and feelings, and teaches adaptive skills for managing life’s challenges."

I encourage adults and older teens who are fighting bulimia to take a look at Kathryn Hansen's book, Brain Over Binge.  I reviewed this book here on my blog.  Again, one can change the pathways in their brain and learn new healthy behaviors.

Family members can be allies here, too.

I again refer the reader to Dr. Shari Manning's book, Loving Someone with Borderline Personality Disorder.  Although the book is written for family members and friends of those with BPD, in fact the information and skills provided helps family members ally with their loved one against bulimia.

My closing question is this:  how does one solve the "food thing" as a transition for an adult who lives independently?

Food is life.

What if .... solving the anorexia puzzle .... Charlotteshelix.net

Eating disorders have occupied my thoughts and actions for more than 40 years if one combines the years I was and then ten years later my family member began her own journey and continues to be snared by one.  Imagine how wonderful it'd be if one could take steps to help others avoid these disorders or even identify what could be done to change a thought process.  Imagine ....

Studies are beginning to open doors.......  People with imagination and character are changing things.

So far, I've taken three routes to participate in DNA studies.  The first was the Genographic Project offered by the partnership of National Geographic and IBM.  The goal was to collect over 100,000 DNA samples with the ultimate goal of learning more about who we are, where we came from, and how we relate as members of one (yes, one!) extended family.  You can learn more about this project here.

The project, incidentally, is on to a new phase called Geno.2 and more than 600,000 people have submitted their DNA sample.  Six hundred thousand people have participated!!

A few weeks ago, I picked up a paperback copy of Francis Collins' The Language of Life and read it in less than a week.  The story of the development of the analysis of DNA is quite fascinating and Collins writes so well for the layperson!  The book also points the reader in the direction of what is called personalized medicine.  As a result, I and two other family members -- possibly more because they're thinking about it -- decided to participate in 23andme's genetic study.  You can learn more about 23andme here.  In our own way, we hope to contribute to the knowledge being collected.  That knowledge will make a difference!

For an essay by Steve Kotler that appeared in Forbes Magazine on December 13, 2012, about the pros and cons of participating in 23andme, click here.

Then I watched this wonderful NBC 23andme special featuring Dr. Nancy Snyderman.  By the way, as Dr. Snyderman reports, you can also submit a vial of blood (rather than a vial of saliva as for 23and me) and about $4,000 and learn a lot more about yourself working with the company Illumina.  Hopefully this cost will come down for everyone and enhance the medical profession's ability to develop specialized treatment programs and target specific illnesses!

Meanwhile a new study with Dr. Cynthia Bulik at the University of North Carolina as the lead investigator titled the Anorexia Nervosa Genetics Initiative or ANGI was launched to identify genes that contribute to the development of anorexia nervosa.  "Contribute to" is an important concept when thinking about eating disorders.  I decided to apply to participate and was accepted.  They now have my vial of blood and my data will be entered into what they hope will become a global collection of samples that ultimately will help to identify contributing genes.

It was easy.  All I had to do was to ask my doctor to write a prescription to have my blood drawn at a local lab.  The lab handled the kit that was mailed to me, collected my sample, and then I wrapped it all up and took it to the main Federal Express shipping point.  (Apparently in Arizona satellite collection stations are not permitted by law to accept human specimen shipments.)  I've received notice that my sample arrived safely and is being processed.

This last point leads me to the main reason - person, in this case, and her name is Charlotte Bevan -  I am writing about all of this.  A cast of rather amazing characters including Laura Collins who not only founded the organization  F.E.A.S.T. but also shook up and brought along others to shake up the established way of looking at and then treating those with eating disorders, particularly anorexia, are behind what I remember listening to Arlo Guthrie exclaim - it's a movement!!!!

Carrie Arnold (the author of the above-mentioned ANGI piece that you can click on for more information) who has written books and maintains an informative blog, has crafted a piece titled, Charlotte's Helix, Charlotte's Legacy that you can find here.  Carrie's offering summarizes what hopefully is becoming viral now - the AN25K Challenge.

In honor of Charlotte Bevan (click here for more about her and the project) and her untiring work since 2009, the goal of all the people now involved is to bring funding to the U.K. with the ultimate goal of sequencing 25,000 genomes of 25,000 AN sufferers to help figure out what causes the illness and how we can better fight it.

I've sent in my check. Carrie  provides a link to where you can do that.  You can donate electronically, too.  Carrie also provides links to more information so  if you are unable to donate funds but would like to help, you can pass along the links.

Imagine.......

Called the Anorexia Nervosa Genetics Initiative (ANGI), this global effort aims to identify genes that contribute to eating disorders. The study aims to transform knowledge about the causes of anorexia nervosa and work toward a cure.
Professor Cynthia Bulik, at the University of North Carolina (UNC), is lead investigator. Australian investigators include Professor Nick Martin from the Queensland Institute of Medical Research (QIMR) at Royal Brisbane Hospital and Professor Tracey Wade, Flinders University (South Australia).
What is ANGI?
This global research aims to identify which genes are involved in the development of anorexia nervosa. ANGI wants to hear from people with current or past anorexia nervosa as well as people with no history of an eating disorder to provide clinical information and blood samples.
- See more at: http://www.nationaleatingdisorders.org/roll-your-sleeve-science-i-can-hardly-wait#sthash.iqO1vKBf.dpuf