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.

Report - Day Two - The First Annual F.E.A.S.T. Symposium: The Map Ahead - November 3-4, 2011

Following breakfast on Friday morning, we all moved on to the ballroom to hear remarks by a panel of four women representing the United States (Colleen Wise), the UK (Rachel Polonsky and Maria FinnisChataway) and Australia (Bridget Bonnin) moderated by Susan Ringwood, the Chief Executive of BEAT as well as a member of FEAST's Professional Advisory Panel.  Their goal was to "put parent concerns and assets on the map:  the law, healthcare policy, advocacy."

(For a look at everyone serving as 2015 board members of  F.E.A.S.T., go to this link.)

After introducing themselves, each spoke of the idiosyncracies of their country's treatment policies, insurance coverage, availability of health care as well as level of care.  Insurance was not an issue in the UK or Australia whereas trying to find funds to get treatment for loved ones in the United States was described as a totally different (as we know) situation.   Colleen brought the house down by remarking she regretted that she was the only one on the panel without an accent.  Her remark actually cut the tension for we were all in for an emotional ride over the next hour while each described her personal experience.  I could see heads nodding around the room as we identified with the journeys being presented.  I could not help but cry when Colleen articulately described what happened in her household and to her daughter who was a healthy and happy teenager until she developed anorexia. 

As has happened before and I know will continue to occur, we again were reminded of the different ways that eating disorders appear with or without prior observable behaviors such as anxiety and with or without the profile that many refer to including perfectionism, obsession to detail, high-functioning, self-criticism and other traits.

Following a much-needed break, we all regrouped and were introduced to Laura Discipio (ANAD), Chevese Turner (BEDA), and Doug Bunnell (formerly NEDA; also Renfrew).   Laura Collins set the stage for an open forum with several questions:

• Why can't we all just get along?
• Do parents have a special role in identifying and challenging ideas in the professional world?
• How can parent activists work with professional and patient activists?
• Whose shoulders do we stand on? (learning from long-time activists)
• Where the the new parent activists going to come from?

These are important questions and the interest shown by those present in developing responses and thinking about the future illustrated how dedicated everyone in the room was to setting the stage for next steps.  Concern was expressed about the evident (and historical) fragmentation of the Eating Disorder community and the desire to find common ground in order to effect change.  We acknowledged again that we do not have one specific way or path and that we need to work together and continue communication among the organizations.  Suggestions included exchanging board members, looking for opportunities to partner on projects, devoting ourselves to answering the needs of families and their loved ones.  We agreed that everything is complex, that there's much to learn about the treatment of eating disorders, and a lot we don't know.  Regarding the last point of the list,  we recognized that parent activists will come and go as their lives move on.  Many are suffering from PTSD and need a break before returning to add new energy to the work of F.E.A.S.T. and other organizations.    [Many remarks were made during this session; I do hope a transcript will become available in the near future so the suggestions can be prioritized and evaluated.]

This discussion could have continued for the rest of the day, I think.  It also strikes me, as one who used to lead discussions like this, that future meetings might include a white board or large pad of paper, easel and marker to quickly write down a brief summary of different points made.  A suggestion for next year?!

This intense hour was followed by business meetings to which symposium participants were invited.  These included an International Registry Project, a Medical Education Task Force, and Australian and UK Task Forces.  I hope progress reports will be issued.  I was particularly interested in the Medical Education Task Force but needed to take care of some personal business and could not attend.

Following lunch we were summoned by chimes to the ballroom at precisely 12:55 pm to be seated to welcome Dr. Thomas Insel, Director of the United States National Institute of Mental Health and our keynote speaker.

Dr. Insel began by discussing the National Institutes and Centers of which there are 22, all funded by our Federal Government.  Their charge is to support research for all medically causes illnesses; $31 billion of taxpayer funds are invested annually.  The National Institute of Mental Health focuses on the research and SAMHSA provides the services.  Specifically,the mission of NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery, and cure.  I've provided links here to both organizations since a better understanding of their role and mission will guide those of us who need to know to whom to go for what.

Just going to the responsibilities of the Office of the Director is an eye-opening experience! And the link to the current state of eating disorders is also interesting.  Many of Dr. Insel's comments can be found on these links as well as in his blog.  Dr. Insel's recent essay titled No Health Without Mental Health is especially poignant and refers to the Patient Protection and Affordable Care Act discussed yesterday by Jeanine Cogan of the Eating Disorder Coalition.  Brain Development is his latest topic.

Having highlighted many document that provide the information Dr. Insel drew upon during his talk, I'll list some of his points I found salient to where we're going.  He noted,

We are on the cusp of a major revolution in the understanding of mental illness and specifically of illnesses such as eating disorders, schizophrenia, bipolar disorder and autism.  These are biologically based brain disorders.

One might refer to brain disorders as circuit or functional problems; an arrhythmia of the brain.

These are developmental disorders, as well.  We need to study and get a better understanding of what happens in the brain when a person develops one of these disorders especially since these disorders predominantly begin in young people with identifiable onset as early as 14 and 75 percent by the age of 24.  Since these disorders appear while a young person's brain is still developing, what does the change do to the brain?  to the normal development of the brain?

Other illnesses progress along trajectories.  Often, the symptoms we observe are the last things we know about as the brain continues to adapt until a severe stage of the disease emerges.  Clearly, early intervention will yield the best outcome.  For example, in schizophrenia most boys develop the presence of psychosis by the age of 19; girls about the age of 21-22.  Psychosis is a late stage. 

Are there similar trajectories for eating disorders?  Are there identifiable cognitive changes?  biomarkers? risks that one can highlight and address?  (Interestingly, a news item today notes Computer analysis of brain scans could help predict how serious or long term a psychotic patient's illness may become and help doctors make more accurate decisions about how best to treat them, researchers said on Monday.  In a study in the journal Psychological Medicine, scientists from King's College London's Institute of Psychiatry and University College London's computer science department found that using computer algorithms to analyze MRI (magnetic resonance imaging) brain scans can predict a patient's outcome.  "This is the first step toward being able to use brain imaging to provide tangible benefit to patients affected by psychosis," said Paola Dazzan of King's, who co-led the study.)

The study of genomics and epigenomics will yield breakthroughs within the next five years in the areas of diagnosis, treatment, and the preparation of the workforce.

Re diagnosis, previously mental illness was diagnosed by consensus.  We are moving towards gaining the  knowledge of what underlies those behaviors and symptoms.  An illustration of advances made in the field of medicine includes the fact that there are now six types of breast cancer, all treated differently.  Antibodies are developed as early as the age of 2 that lead to diabetes later on.

Believes that there may be a wide spectrum of eating disorders for which different kinds of treatment may be necessary.

Frankly, I was delighted by this observation coming from Dr. Insel since I speculated about this on my blog a few months ago reflecting on scientific knowledge provided to me by Martie Fankhauser, a neuropsychiatric pharmacist  who I consulted when I wanted to learn more about the brain from a neurochemical point of view.  Since there has been no new medication for many years to treat ED, non-medication therapy is really important.  [Note that the current estimate to develop a new drug is $1 billion.]

Lock and Le Grange have demonstrated that one can turn an eating disorder on its head using FBT.  Families are part of the solution, for sure.  Fifty percent of those who use their method recover in one year; what about the other 50 percent.  Can this be scaled up in a larger study to understand why? 

Re training - many in the field of eating disorders do not understand the concept of evidence-based treatment nor is their training scientifically based.  Change must happen.  Retraining must occur.  Perhaps an entirely new discipline in medicine will develop related to brain disorders - Clinical Neuroscience, for example.  Required re-accreditation in the field of eating disorders may be a possibility.  There is a general lack of understanding of the severity of these diseases.  Expertise is needed in the training of patients to cognitively override the diseases of eating disorders.  

Dr.Insel closed his presentation by noting that although the field has grown tremendously, much remains unknown.  [Some were able to capture his talk thanks to the live videostreaming that occurred during the entire conference. At least one section is reproduced on the Around the Dinner Table website.]

[While trawling the internet today - 12/6/2011 - I came across this vimeo thanks to the provision of it to the public by Jane Cawley.  Here Dr. Insel notes several of the points he touched on in his talk.]

Dr. Julie O'Toole, MD, founder and medical director of the Kartini Clinic, author of Give Food a Chance and a member of the F.E.A.S.T. Professional Advisory Panel moderated a panel brought together to determine where parents want the eating disorder world to go.  Dr. Insel was joined by Jeanine Cogan (EDC), Susan Ringwood (BEAT), Stephanie Bauer (Academy for Eating Disorders), and Dr. Richard Kreipe (AAP, Professor of Pediatrics and Adolescent Medicine).

Question:  How do we convey the severity of this disease without highlighting the usual sensationalistic photos and descriptions?

• Having data and stories of patients and family members.
• We need a big media push emphasizing eating disorders as a public health issue
• Our common task is to get people healthy first and foremost
• The field must partner with parents and listen to parental concerns.
• Keep the best interest of the child/young adult/adult in mind.

What other steps can be taken?

• Create a Consensus Panel 
• Develop Criteria for a Center of Excellence
• Study Sibling Risk
• Need scientific agency media push
• Train more pediatricians/adolescent specialists
• Distribute the revised AED booklet as widely as possible
• Disseminate techniques, knowledge and methods to parents

This discussion evolved into somewhat of a free-for-all and many comments were offered.  The transcript will undoubtedly add much value to the final report on the symposium.

A highlight of the afternoon was the announcement by the Board of a new "Magic Plate Award."  Laura Collins was surprised and very touched to be the first recipient.

Following another break and the raffle winner announcements (books and manuals donated by Gurze Books), a surprising number of people (given the late hour and travel requirements of many attending the conference) gathered in a smaller room to hear the stories of four recovered people who answered questions about their experiences including what helped and what didn't.  Carrie Arnold, Olympia Collins, Katie Cullinane, and June Alexander shared much about their lives when they were fighting eating disorders and offered solutions towards recovery based on what worked for them.  Questions ranged from family relationships to negotiating college education as well as treatment.  Each presented a different journey, a helpful offering towards understanding the variability of eating disorders.

I needed to leave early to join my son for dinner at Union Station.  He traveled by train down from New York City to spend some time with me - a wonderful surprise.

I look forward to next year's conference and applaud Laura Collins and other F.E.A.S.T. organizers who put together an educational and progressive experience.  I've never attended a conference quite like this before and am sure that much will evolve as a result of the discussions - formal and informal - that occurred.

F.E.A.S.T. Eating Disorder Conference - November 3-4, 2011

The F.E.A.S.T eating disorder conference in Alexandria, Virginia on November 3-4 will be populated by some of the most knowledgeable folks in the world providing the most recent evidence-based research. 

There are many people working very hard to get a better understanding of eating disorders and at the same time providing information about the latest research in a format that is understandable to families.

We all have a part in getting our loved ones back on their feet. One aspect of treatment -- whether it is a residential stay or visits to a therapist or work with a nutritionist - must be supplemented by the family's knowledgeable involvement. This conference, as well as NEDA's, will surely assist in this direction.