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

"Out of the Darkness"

"Out of the Darkness" is the title of an essay written by Mark Lukach that appeared in the New York Times on Sunday, November 27, 2011, in the Sunday Styles Modern Love Section, p. 6.  The title caught my eye because it reminded me of the incredibly illuminating essay that was originally published in Vanity Fair and then became a book by William Styron - Darkness Visible - A Memoir of Madness (Random House, 1990) that I purchased almost twenty years ago when I wanted to understand more about depression and perhaps empathize more effectively with a loved one suffering from a severe depression at that time.  The essay written by Mr. Lukach is accompanied by a sketch showing two people in a sad embrace with the image of a woman falling in the head of one of the two people.

I could stop here and encourage you to read it but I want to say a bit more about the article.

A husband walks through and supports fully his wife's journey through a terrible psychotic break and the story is rich with language that so well describes her and his experience.

Essays like these, I believe, are so helpful to the public unfamiliar with brain disorders.  So many (and at one time I counted myself among them) do not understand mental illness.  So many read and hear comments that stigmatize mental illness.  The media publishes and displays the comments and views that stigmatize mental illness/brain disorders to the detriment of many who are seriously ill and need help but who are afraid to ask for it for fear of being labeled unemployable or worse yet, called "crazy" - a terribly derogatory word.

Organizations like NAMI are working to de-stigmatize brain disorders/mental illness including eating disorders.  These illnesses and the states that are present during these illnesses are extremely debilitating and undermine the people who develop them.  An essay like this and the work of countless people is important to change the mind-set of the public.

Will.....Willpower

[It's raining with some lightning here so rather than going for a hike this morning, I pulled out this article because the subject has intrigued me for a very long time.  I have wondered what was behind my decision to quit my eating disorder - sick and tired of being sick and tired? change in mind-set? deeper understanding of my "self"?  will power?  And, if willpower, am I genetically blessed with the whatever it is to have a strong will?....]

The Sunday, November 27, 2011, New York Times published an article titled "Willpower: It's in Your Head" written by Greg Walton, an assistant professor of psychology at Stanford and Carol Dweck, professor of psychology, also at Stanford [colleagues of Dr. James Lock?] in which they conclude that attributing our failures of will to our biology -- to our "fixed biological limits" -- is wrong.

They state, 

"In research that we conducted with the psychologist Veronika Job, we confirmed that willpower can indeed be quite limited -- but only if you believe it is.  When people believe that willpower is fixed and limited, their willpower is easily depleted.  But when people believe that willpower is self-renewing -- that when you work hard, you're energized to work more; that when you've resisted one temptation, you can better resist the next one -- then people successfully exert more willpower.  It turns out that willpower is in your head."

[The mind/brain is an amazing thing, isn't it?]

The authors provide studies and the results to support this thesis.  They emphasize that of course a person needs to eat and to rest/sleep but they do not, as posited by Roy F. Baumeister and John Tierney in their book Willpower: Rediscovering the Greatest Human Strength, need to ingest straight glucose to keep that willpower going.

The authors of the New York Times article conclude by writing,

"At stake in this debate is not just a question about the nature of willpower.  It's also a question of what kind of people we want to be.  Do we want to be a people who dismiss our weaknesses as unchangeable?  When a student struggles in math, should we tell that student, "Don't worry, you're just not a math person"?  Do we want him [or her] to give up in the name of biology?  Or do we want him to work harder in the spirit of what he wants to become."

Yes, this essay does not mention those who have disabilities and I do believe, no matter what they write, that some people have difficult with advanced mathematics (I do; my daughter doesn't at all).  Neither does it touch on genetics.  However, this essay and the book have me curious enough that I'll probably read the recently published book -- for I know that the brain does need 500 calories a day of glucose preferably (my opinion) available from complex carbohydrates and not straight sugar as the authors apparently suggested on NPR -- and I'm happy to see that researchers are continuing to take a look at this aspect of our behavior/decision making.

Has the Tipping Point Been Reached? - Drs. Bulik and Ravin

This week two different internet news items caught my attention.

The first was a 56-minute presentation by Dr. Cynthia Bulik of the University of North Carolina at Chapel Hill at a Stockholm Psychiatry Lecture held at Karolinska Institutet, November 15, 2011.  The title of her talk is The Complex Dance of Genes and Environment in Eating Disorders and can be found here, thanks to You Tube!  Some of the slides she presents are graphic and can be triggering or very upsetting to those with either anorexia or bulimia.  They were important, I believe, for the thrust of her talk.  Dr. Bulik's lecture is hugely important not only for the scientific information she presents  but also because she has taken a step further and looked at the potential for possibly preventing the occurrence of eating disorders in the offspring of those with either eating disorders or the family propensity for those illnesses.  Those of us who attended the F.E.A.S.T. conference in early November in Alexandria, Virginia heard some of her points; this lecture is far more extensive. 

I was also excited to hear her state there is a genetic consortium of scientists to further the study of anorexia nervosa known as GCAN.  The website that is part of the Department of Psychiatry Eating Disorders Program at UNC Chapel Hill states, 

Since 2007, the University of North Carolina Eating Disorders Program has led a world effort to unite clinicians and researchers around the world in an effort to identify genes that may influence risk for eating disorders. This has resulted in the Genetic Consortium for Anorexia Nervosa (GCAN) which currently consists of researchers and clinicians from 16 countries around the world. Together with researcher from Kings College London, the UNC program has been honored to receive a grant from the Wellcome Trust (WTCCC3) to conduct genomewide association on over 4000 DNA samples from individuals with anorexia nervosa. All members of the consortium are gathering information about eating disorders course and genetic material (DNA) from any individual who currently has or has had an eating disorder in the past. This world-wide effort is inviting every person with current or past anorexia nervosa to take the time to roll up their sleeves and help us figure out the cause of eating disorders.

We are currently gathering information and genetic material (DNA from a blood sample) from women who have had anorexia nervosa at any time in their life. Information from this study will advance our understanding of the causes of anorexia nervosa and further our ability to develop more effective treatments and prevention strategies.
If you are female and have had anorexia nervosa at any time in your life, you are invited to participate in this study. Participation only takes 30 minutes and includes a blood draw.

Call Jessica Baker today at 919-966-1217 or her at jessica_baker@med.unc.edu if you are interested in donating your blood to help us unlock the genetic code of eating disorders.

Note that they are looking for participants for this study.   

The word consortium is what especially caught my attention because this concept - consortium - is spreading throughout the scientific world to bring research results forward faster, to obtain grants and donations to expedite that research, and to collect meaningful data that is understandable across fields.

So is consensus science.

The second item was Dr. Sarah Ravin's recent post titled, "Active Ingredients"  Dr. Ravin's post is extraordinary because she not only takes a firm, public stand on the approach to be taken when treating those with eating disorders, she also provides a flow chart for how one must treat a person with an eating disorder.  This post is important for scientific researchers, psychiatrists, medical doctors, therapists, nutritionists and families.  I would call it a "recommendation for best practices in the treatment of an eating disorder."

Her introduction is so very important -

To the patient’s detriment, many clinicians do not add the right ingredients at the right times in the right doses. For example, many individual therapy approaches focus initially on helping the patient develop insight and motivation to recover. Full nutrition is not required, or even encouraged, until the patient has lost a significant amount of weight. 

Many clinicians are simply using the wrong recipe.

Dr. Ravin goes on to list the essentials at each step as well as the issues that can wait.  The flow chart isn't for a month or even three months (the typical length of time paid for by insurance companies in this country, the latter figure of three months rather unusual).  Her chart covers a period of 12-18 months (!) and in closing  incorporates a list of must haves  before a parent sends a young person off to college or to live independently.  

Dr. Ravin highlights the importance of investigating the possibility of other factors such as brain disorders like anxiety, OCD, and depression and their treatment, something I've been pushing for for a long time in comments on Something Fishy and other websites because of my loved one's experience.  Too often families and therapists think a person will be "well" once they are re-nourished and in some cases that is true or seems to be true.  The symptoms seem to disappear.  Yet, the propensity is still there.  In many cases  this myth of "only an eating disorder" must be dispelled on behalf of those who fall back into the abyss and cannot seem to climb out because these and other illnesses have not been diagnosed, have not been treated, and the individuals have not been provided with the tools (also mentioned in Dr. Ravin's chart) to quell their anxiety or to "regulate emotions and tolerate distress."  This is where CBT (Cognitive Behavioral Therapy) and DBT (Dialectical Behavioral Therapy)  and other modalities are introduced.

I was so thrilled to see and read  Dr. Ravin's post as well as watch Dr. Bulik.  I know we've reached the tipping point.  Now with films like Someday Melissa and Miss Representation getting nationwide attention (the latter has already been screened here in Tucson by The Arizona List) and organizations like F.E.A.S.T., NEDA and its affiliates, and NAMI along with the attention of the National Institutes of Health's National Institute of Mental Health (thank you Dr. Insel!) we need to keep raising our voices and spreading the word.