The Parent, Family and Friends Network - Insurance Information article by Susan Maccia

The Parent, Family and Friends Network of the National Eating Disorders Association publishes a quarterly newsletter.   One of the issues (fall 2011) includes several important articles (as usual) including a piece by outgoing PFN chair, Susan Maccia, on Single Case Agreements.  The article identifies an SCA as:

If the services to meet an identified clinical need are not available within the contracted network, necessary services are provided in a timely manner through an out-of-network provider.  A Single Case Agreement is a contractual agreement developed for an enrolled person (insured) based on that person's behavioral health needs and for a predetermined period of time.

Among the articles in this issue: a NEDA Conference recap (2011), Males and Eating Disorders, the NEDA Navigators, the existence of a NEDA Loss Support Network, an announcement of planned free webinars, and one about athletes and eating disorders.

To find out more about the PFN Network, click here

"Addictive Personality? You Might be a Leader"

I love titles like this one which enticed me to read a New York Times opinion piece this past Sunday morning (July 24, 2011, "Sunday Review", p. 4) at breakfast.  Written by David J. Linden, a professor of neuroscience at Johns Hopkins University School of Medicine as well as author of a book with the startling title, The Compass of Pleasure: How Our Brains Make Fatty Foods, Orgasm, Exercise, Marijuana, Generosity, Vodka, Learning and Gambling Feel So Good.

[I have now (7/28) received the book and the chapter "Feed Me" is one of the best easily understood descriptions of why we get hungry or the reverse that I have read.  As usual, I flipped through the book and looked at the index when I opened the package.] 

One of the sentences highlighted in the New York Times article is, "Traits that make us crave pleasure also contribute to creativity and risk-taking."

Traits and States was a topic at the National Eating Disorder Association's meeting last Fall.   I wrote a piece reflecting on this topic.   Traits are those pieces of us that can be maligned and at the same time raved about, depending on the behavior that comes along with them.  While working at the University of Arizona, I participated in a fascinating job evaluation in which I was asked to look at my traits and qualities and write about the positives and negatives and how these affected my performance.  I learned so much about myself.  I also learned to be grateful for traits that I used to believe were detrimental.  I came to value my behavior better, too.  The affirmations course I took about this time underscored my ability to get ahead.

David Linden takes this positive outlook when he notes that ...."the psychological profile of a compelling leader - think of tech pioneers like Jeff Bezos, Larry Ellison, and Steven P. Jobs - is also that of the compulsive risk-taker, someone with a high degree of novelty-seeking behavior.  In short , what we seek in leaders is often the same kind of personality type that is found in addicts, whether they are dependent on gambling, alcohol, sex or drugs."

Wow!  novel approach here.  Then he delves into the functions of the brain related to pleasure and reward.  Timely, for sure.

He also looks at the medial forebrain pleasure circuit and the role of dopamine in the seeking of rewards.  What could be classified, after all, as a reward?  Well, for starters food.  If one is hungry, one eats.  One gets pleasure from taste and the responses of the body to food.  As a runner-turned-hiker, I can tell you that water is right up there when I'm out in the desert and getting low in the fluids I'm carrying.  He also touches on the point that Dr. Ryan in her lecture noted (in an earlier post here) that one can get pleasure even thinking about things like gambling. 

Dr. Linden, however, proposes that those who have an addictive personality crave things and at the same time actually like them less.  Sounds counter-intuitive.  He also provides a clear (current) explanation about why some become addicts and others do not.  Genes "....account", he says, "for 40 to 60 percent of the variation in the risk for addiction" and that there is "...no one 'addiction gene'."  Their dopamine response is attenuated.  In other words they need higher and then higher levels of stimulation to obtain the same level of pleasure that others gain in moderation. 

Linden goes on to list a few famous addicts; it'd be interesting to learn how many others there are with an "addictive personality" who channel their risk-taking solely into "legal" pursuits.  Must be quite a few, actually.  He counsels search committees to "...look for someone with an attenuated dopamine function:  someone who is never satisfied with the status quo, someone who wants the feeling of success more than others - but likes it less."

Having read this piece, I will read his book.  Surely there are some who get quite a good "high" out of this kind of achievement and who have learned to moderate their behavior so they can continue feeling good about what they are doing..... Or who love the high, continue to go after it, and like what they are doing? ....  or not?

Bridging the Research-Practice Gap

The title of this post was an important focus of the recent National Eating Disorders Association conference held in October 2010 in New York City.  The title of the post is also part of the title of an astonishing new addition to the literature available in the field of eating disorders.  Published by Elsevier, Inc. (Academic Press is an imprint of Elsevier) this year (2010) and edited by Margo Maine, Beth Hartman McGilley, and Douglas W. Bunnell, the book Treatment of Eating Disorders: Bridging the Research-Practice Gap should be (I wish) a required purchase for everyone in the field.

A couple of years ago I read Tipping Point:How Little Things Can Make a Big Difference by Malcolm Gladwell.  I believe we are either approaching critical mass or have reached the point where enough people are paying attention, where enough people are passing along important information to others, where enough people are printing information in major periodicals that in total reach millions of people..... I could go on.  Gladwell's thesis is that a lot of very small actions or changes can lead to major change.  He delves into the facets of his topic and notes certain conditions that he believes must exist as well as the different types of "carriers" that must be present.  It's an interesting read.

Now, we need enough people, so to speak, to reach into their pockets -- corporate or foundations or people -- to fund studies such as that by Dr. Walter Kaye who now has DNA samples from more than 4000 people with ED and their relatives as well as a lot of information about their behavior.  

[I think it may be time that I take a look at his and others' work.  I've been reluctant because most who call out for help are more interested in the "how do I help this person get well."  The question, "how did this happen" is multifaceted and it does involve genetics, especially involving the brain.  I also think that once cognition has improved for patients, that they as well as their parents need to get a grasp on how the brain works to work together with their brains and body to get well.  There's a great book about this concept, too.  I need to find it on my bookshelf.]

I'll get back to my original point in a moment but I do want to say that Dr. Kaye does need funds to support the analysis of the data his team now has.  More on that in a post of genetics.

So back to Bridging the Research-Practice Gap.   This book is current.  One of the laments often expressed during the NEDA conference was the time it takes to get from publication to use of the information by the team of someone with an eating disorder.  This book literally speaks to that.   The great thing (one of, anyway) about this book is that the chapters are written by many different people so the reader can select a subject and get a good handle on an aspect of eating disorders.  For example, in the Overview Section, Margo Maine and Douglas W. Bunnell lead off with "A Perfect Biophysical Storm: Gender Culture, and Eating Disorders (p. 3)". I have already read two items in Section III (Special Populations); one titled "Borderline Personality and Eating Disorders: A Chaotic Crossroads" (p. 217) by Randy A. Sansone and Lori A. Sansone and a second by Amy Baker Dennis and Bethany L. Helfman titled "Managing the Eating Disorder Patient with a Comorbid Substance Use Disorder (p. 233)."  Amy Baker Dennis presented these two topics at the NEDA Conference in October and her and others' thoughts are represented in these two sections.  There's a section on Family Issues including thoughts written by well-known people like Kitty Westin whose family won their case against Blue Cross/Blue Shield after their daughter died from the effects of an eating disorder and before adequate treatment was approved by their insurance company and who used the funds to establish a Foundation.

This morning I read another chapter in Section V (Mind, Body, and Spirit) by Kimberli McCallum titled "The Case for Integrating Mindfulness in the Treatment of Eating Disorders" (p. 387).  Outstanding!!!!!  A thorough look at the theory and practice of mindfulness and how important learning this technique can be for one in recovery from an eating disorder.  I loved it. I think everyone should learn this technique, actually, which is why I love Thich Nhat Hahn's many books.

Unfortunately this comprehensive volume is rather expensive but I would call it State of the Art and a must read, chapter by chapter.  I've learned one can save a fair amount of money by ordering it from Amazon.  Perhaps others will begin to discount it to encourage a wider readership. 

Borderline Personality Disorder and Eating Disorders

I continue to mention Borderline Personality Disorder (BPD).  My book list contains a few items about BPD.  And, as I noted in my previous post, I prefer to call BPD Emotional Disregulation Disorder.  This characterization is not entirely accurate since BPD is said to have three dimensions having to do with cognition, feeling, and acting.  Those diagnosed with BPD exhibit faulty thinking, emotional disregulation, and impulsivity.  And, there are genetic underpinnings with the inheritance of traits.

When I started researching this topic, one of the first things I learned was the anecdotal response, namely that those diagnosed with it are difficult to treat and most therapists (this was three or four years ago) are not willing to work with people who’ve finally been diagnosed with it.

I say finally because in many cases the behaviors and reactions of one with BPD mimic other disorders so the diagnosis is not made for years (similar to the variations of bipolar disorder for some folks, which by the way, is termed a brain disorder).  Marya Hornbacher, author of the pivotal memoir Wasted, notes in Madness, A Bipolar Life, that the average age of onset of bipolar disorder is 23 yet the average age of correct diagnosis is 40 (p. 282) 

In the past couple of years, a broad group of psychiatrists, researchers, parents and friends have worked hard to increase the knowledge about BPD including the fact that it is treatable.  They have formed organizations such as the National Education Alliance for Borderline Personality Disorder  that has a website:  http://www.borderlinepersonalitydisorder.com/  

 In addition, several books have been published, one of the most helpful for parents being The Essential Family Guide to Borderline Personality Disorder written by Randi Kreger.   

This group worked long hours with the National Alliance on Mental Illness with the result that this disorder is now recognized on the NAMI website (as are eating disorders).  The NAMI and the NEA websites are outstanding.  The NAMI website includes a link to medications 
as well.  I've often referred parents of those with eating disorders to the medications link because many of the descriptions are up-to-date and several of the medications are prescribed.

One of the reasons I am raising this issue is a variety of studies show that at least 25% of people with an eating disorder also meet diagnostic criteria for BPD.  Other studies indicate a lower or broader percentage range. Whatever the case, this gets back to my recommendation to parents that if, when re-nourished, a person’s maladaptive behaviors continue in spite of the use of the tools gained during treatment, then it’s time to have another psychiatric evaluation.  Since something on the order of 65% of people with eating disorders earlier exhibited an anxiety trait, a psychiatric evaluation is useful in any case to make certain the person receives treatment to learn how to deal with it.

If the diagnosis of BPD is made, remain steadfastly supportive of yet detached with love from your loved one because it’s a lonely place to be.  These  Guidelines have been identified as useful for families.   Treatment protocols are broadening as understanding of how to work with people with this diagnosis increases.

Dr. Amy Baker Dennis provided an excellent presentation on the treatment of those with BPD at the NEDA conference, unfortunately scheduled the very last day at the very last session before the closing general session.  Often those with BPD turn to other substances to self-medicate.   Using treatments like motivational interviewing and dialectical behavioral therapy, progress can be made.  Others would benefit from hearing her talk.  I hope it was recorded.  

PS - I just stumbled upon (9-2011) Dr. Thomas Insel's thoughts about Borderline Personality Disorder and am pleased to add his remarks to this conversation.  How refreshing to see that he, too, feels that the diagnosis terminology is misguided.

States, Traits and Types

This Fall I joined a book group sponsored by WOSAC, an organization that supports and sponsors events for the Department of Gender and Women's Studies at the University of Arizona.  Each year, the continuing members discuss and select books for the upcoming semester and the group is facilitated by a professor.  This year the facilitator is Professor Adele Barker whose joint areas are Russian and Slavic Studies/Women’s Studies.  And, among the books chosen was Anna Karenina by Leo Tolstoy [the Pevear and Volokhonsky translation].  Little did I know, never having read the book, that I would find the discussion very important for me and my continuing education about the concepts of states, traits and indeed types, the first two terms mentioned often at the NEDA conference in October 2010.

In addition, I’d delighted in Helen Mirren’s portrayal of Tolstoy’s wife, Sophia, in the movie  “The Last Station” so I wanted to learn more about life in those times in Russia, especially since my grandfather was a Russian emigrant in the early 1900’s and because one of my grandmothers regularly told me from the time I can remember that I have a Russian soul (with good reason, I guess, given the ideas presented in theory about states, traits and types).  I found it illuminating to read this review of a biography of Sophia Tolstoy in the Huffington Post.

Our book group is quite eclectic, several of its members also writers, attorneys, psychologist/therapists, feminists (probably all), and other professionals, also all activists.  One of our members, the psychologist, mentioned that one of her family members is in another book group composed of mostly therapists who also read Anna Karenina  and determined that Kitty had situational depression (a state, defined in my Websters as “a set of circumstances or attributes characterizing a person or thing at a given time; a mental or emotional condition”) while Anna had a personality disorder, their diagnosis based on Anna’s traits.  In other words, for those of you who have not yet read the book – a frighteningly thick book but beautifully written -- Kitty responded to being dumped by her suitor by becoming temporarily depressed while Anna’s behavior and reactions throughout the book reflected traits that were ongoing.

I frequently read and hear that those with eating disorders specifically anorexia in the linked definition  tend to have traits such as perfectionism, anxiety, and obsessionality, and that these traits “….are often present in childhood before the eating disorder develops.”  More often than not those with eating disorders such as anorexia are very attractive, highly intelligent, sensitive, creative people.  I realize this sounds like a generalization yet it's amazing how many parents describe their children this way.

Then there are types.  If you were hired in the 1990’s or later (maybe earlier, I don’t know), you were probably asked to take the Myers-Briggs Type Indicator, a questionnaire that theoretically determines your personality type based on four categories symbolized by a letter.  So, for example, I vacillate between ISTJ and ISFJ and the descriptions of my “type” are actually pretty accurate.  (I’m also a “gold” for those of you familiar with the color typing.)

The MBTI has apparently gone out of favor in the psychology world depending upon who you talk to but is definitely still in use in the business world perhaps again illustrating the time lag between theory and practice.

So, what got me going with this?   

First, the terms “states” and “traits” were thrown around a lot at the NEDA conference. 

Second, I’ve learned through experience that just because one is “traited” (sorry) or “typed”, doesn’t mean that one is stuck, never to get out of a rabbit hole of an eating disorder or whatever.  To use an Al-Anon expression, some of these traits may be my character defects (a term I hate and why I think anyone with an eating disorder or who tends easily towards shame needs to have a sponsor who understand this fact and can guide a person carefully through their Fourth Step) or they may be my assets.  I’ve observed, as have others, that many with these same traits go on to flourish in what are known as the STEM fields of Science, Technology, Engineering and Mathematics, areas lacking women.

  

Third, many people believe that once re-nourished, those with eating disorders are healthy again.  I disagree.  I could access many resources on this point but feel it is not anecdotal to say that those who have struggled through an eating disorder have at the very least developed maladaptive (not good) behavior patterns in reaction to stress that need to be changed and, by the way, another trait is rigidity, and more seriously have suffered brain damage due to chemical fluctuations of binging and purging or starvation; never mind all the other harm that occurs.

Recently Carrie Arnold, whose book Next to Nothing I have and will probably mention several times, has recently written in her blog about the concept of a half-baked cake, noting that although the cake looks “done” on the outside, more often than not when tested with a toothpick or whatever, is still baking on the inside.  In the same manner, one who looks “done” on the outside because their weight has been restored, is likely to still need baking on the inside.

 

That baking will include things like therapy to learn new ways of behaving and thinking.  This is where I believe Dr. Tchanturia’s Cognitive Remedial Therapy (CRT) that I blogged about earlier is important and will be prescribed as an adjunct to Cognitive Behavioral Therapy (CBT) or Dialectical Behavioral Therapy (DBT), tools often offered to those in therapy with eating disorders.

We all need to learn how to live.  It’s not a magic process but one that is based on experience.  One of the skills, for example recovering from failure, is quite difficult for one who is a perfectionist but very important.

  

I like the Japanese proverb, “Fall down seven times, get up eight.”

Data and Long-Range Studies

I have been very excited by the media coverage devoted to Family-Based therapy, particularly the article by Roni Caryn Rabin in yesterday’s New York Times (Tuesday, October 19, 2010, on page D5).  This and other articles are highlighting the research by Dr. Daniel Le Grange and his colleagues at the University of Chicago published this month in the Archives of General Psychiatry.  Since I also subscribe to the Wall Street Journal, I was quite surprised to find a similar article in the first section of the paper – a major advance in terms of recognition of eating disorders as medical emergencies and worthy of immediate attention.

As I’ve often mentioned, I wish I had known about this 22 years ago but since I didn’t, one of my goals is to spread the word so parents of those who have developed eating disorders more recently can take advantage of this research and work to get their children on the path to recovery.

This kind of publicity ties in with the opening address made by Dr. Russell Marx during the Professional Day offered by Princeton University on Monday, October 11, 2010, following the NEDA Conference.  Dr. Marx, who was also the chair of the NEDA conference,  highlighted five points that he believes are critical for the continuing progress of research and practice in this field.

The five points are:

Educate – he noted, for example that we all have access to new information technologies and information channels that can be utilized to educate and inform.

Integrate -  too often there’s a disconnect between parents, therapists, medical doctors, nutritionists, psychiatrists and others involved in the care of one with an eating disorder.   Constant communication between and among all members of the team is critically important and all involved must be open to change and new ideas.

Advocate – this word explains the point and the more all of us step up and speak out on behalf of those affected by these disorders, the more publicity we’ll gather and the more support the field will gain.

Innovate – when one considers that it can take 17 years from the release of study results (the basic research) to the utilization of those results (clinical approaches in treatment), we need to find a way to get those ideas out there sooner to encourage further innovation based on the outcomes of experience in the clinical/residential setting.  So again I note how exciting it is that the media picked up on the results mentioned at the start of this post.  Kudos to Harriet Brown, too, for her unflagging energy to gather opportunities to speak about her new book, Brave Girl Eating, that espouses Family-Based Therapy.

Validate – so much of the information “out there” right now is anecdotal.  Some of the information, in fact, may no longer be correct.  For example, it is quite possible that the number of people dying from eating disorders is going down because of improvements (still a long way to go) in treatment protocol and insurance coverage.  More and more institutions and funding organizations are demanding outcome measures to accompany grant requests.  These outcome measures create value.

Dr. Marx noted that the Cystic Fibrosis Foundation has made huge strides in all of these areas and has data on 93% of the patients who have been diagnosed with cystic fibrosis.  Imagine if this could be done for those with eating disorders!!

Which leads me to my observation that there just aren’t enough long-range studies let alone data sets on eating disorder outcomes for patients who have sought treatment.  This information becomes especially  important when new or existing medications or techniques are used or innovations are put into practice.  Following results of the use of, e.g., Cognitive Remediation Therapy or Family-Based Therapy or residential placement where a number of different therapies are put into play at once or the use of a new or existing medication, and putting this in a database could help to speed up choices of treatment and eliminate those things that aren’t as effective.   A lot of treatment based on earlier research is occurring right now but there’s no central gathering place for this data nor probably have any standards been set so that anyone in the field can access it, understand it and then utilize it.  Doors need to be opened and information shared if we are to make progress against these deadly diseases.

Upon my return from the NEDA conference, I discussed Dr. Marx’s important talk with my husband who is an IT executive.  He alerted me to a consortium using the acronym CDISC   This acronym stands for Clinical Data Interchange Standards Consortium. “….CDISC is a global, open, multidisciplinary, non-profit organization that has established standards to support the acquisition, exchange, submission and archive of clinical research data and metadata. The CDISC mission is to develop and support global, platform-independent data standards that enable information system interoperability to improve medical research and related areas of healthcare.  CDISC standards are vendor-neutral, platform-independent and freely available via the CDISC website.”

Imagine if all researchers used these standards!!! And then worked with people knowledgeable in the development of databases to make information on eating disorders accessible to all.

Most assuredly, progress would occur much faster and the people involved in the field of eating disorders could implement advancements sooner on behalf of our loved ones. 

"I think the problem is the way I think." - Cognitive Remediation Therapy

I had never heard of Cognitive Remediation Therapy (CRT) before the weekend of the NEDA conference and I didn't even hear it first from a lead researcher and the conference presenter on this topic, Dr. Kate Tchanturia.  Rather, I was fortunate enough to encounter a nurse researcher who until recently was working at a Boston area hospital and who had already used Dr. Tchanturia's technique and materials with some of her own patients with success.  She and I spent a long dinner together on Saturday night discussing the research so I was primed to hear Dr. Tchanturia not only on Sunday but also during the Professional Day presentations on Monday.

My list from the conference includes the words "stroke" as well as CRT.  I deliberately used the word "stroke" so the reader will understand that the eating disorder adversely interferes with the brain's function  and its development.  I wanted to remind myself that the first thing I thought of when I thought of the word "stroke" was the need for a person to relearn tasks.   Portions of the brain actually shrink during starvation.    Dr. Walter Kaye presented a lot of material on the brain and I'll touch on that in a future post but right now I want to look at this technique specifically.

Many parents have heard that once anorexia (AN) has gotten a foothold, the patient cannot utilize medications well because the brain isn't working correctly.  It's not clear to me, having witnessed what can only be described as bizarre behavior,  that any therapy can really be  effective if a person is severely malnourished.   Links I've provided in earlier posts have information that indicates cognitive problems start to occur when the person isn't eating correctly.  However, studies have shown that CRT can be utilized even when the person's Body Mass Index BMI is far below the normal healthy range.

Dr. Tchanturia and her colleagues found in an initial study published in the Annals of General Psychiatry (5 June 2007),  that "...patients with AN are able to reflect effectively on their thinking style ...." even while malnourished.  The technique involves simple things as well as games that many of the participants have found to be fun.  Among them is the simple task of first writing with your dominant hand and then doing so again with your other hand.  The object, among other things, is for the person to recognize that with practice they can change the way they think.

Here is the latest paper by Drs. Tchanturia and Lock.

Imagine being able to learn to actually think differently so you're not as susceptible again to triggers that lead to anorexia and bulimia!!! Imagine if one could identify those with a potential to develop an ED (looking at a variety of factors) and provide them with tools to live healthy lives using known traits positively.

I have downloaded several papers and will be reading thoroughly about this before trying to synthesize it into a report that a non medical person can understand.  One of the comments I heard several times at the conference from different parents was they were having difficulty understanding the "science" of it all and wanted descriptions in layperson's terms.    I'm going to make an attempt at it and come back here later!  I truly think this may be a key element to a more effective recovery.

NEDA Conference

While flying back home, I started a list of words that would remind me what I wanted to think about and perhaps post about the NEDA conference.   Here's the list:
stress medical emergency
cool, calm and collected parent - how - carer skills
food first
stroke recovery
cognitive remediation therapy (Tchanturia work)
oxytocin
traits and states
what is recovery
BPD - really feel, negotiation therapy, interpret rather than confront
starvation affects executive function (Treasure)
nutrition deprivation at a critical time
motivational interviewing
returning to the old normal is not the goal
pentimento
fMRI
17 years from research publication to practice (?)
neuroplasticityand hope
lack of data for true long-term evaluation studies
AED booklet on ED (for doctors, dentists, etc.)
Russell Marx's 5 critical points
60% anxiety predated AN
50% success with Maudsley means 50% need something else or another angle
5000 hours to solidly learn a new behavior - that's 208 days or approx 6 months

Perhaps the next step is to sort these in categories; for example, as a carer, as an advocate, as a person interested in the science of all of this, and as one who wants to see more longer-term studies and data collection.

Perhaps the best place to start would be as a carer and advocate since I've filled those roles for many, many years and have shared what I've learned on Something Fishy along with so many others who offer their experience, strength and hope there.