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.

Causes of Eating Disorders - another angle

I'm still reading The Emperor of All Maladies.   The subject - cancer - has nothing to do with eating disorders but the science so well presented as a backdrop to the progress against cancer has been absolutely fascinating and a great help to understanding how researchers go about identifying how genes play a major part in the susceptibility to different kinds of cancer as well as the treatment of different types of cancer.

After years of reading studies and books, participating in family groups, listening to speakers at conferences, etc., rather than becoming an advocate of one method or another, I've become more convinced that eating disorders, while related to eating (or not), are different just as breast cancer is different from lung cancer is differed from colon cancer. 

Last fall, after attending the NEDA convention in New York City, I mused that perhaps the term eating disorder is a misnomer and in fact should be called 5-HT disorders.  The work of Dr. Walter Kaye and others certainly points to the probability of anorexia and bulimia being psychobiological illnesses.  Anxiety and methods to quell it are certainly part of the picture.  But perhaps there's even a more basic explanation for the underlying development of eating disorders.

The study that Carrie Arnold highlighted recently explores this idea.  Dr. Donald Dwyer has proposed that anorexia is "primarily a metabolic disorder caused by defective regulation of the starvation response, which leads to ambivalence towards food, decreased food consumption and characteristic psychopathology."

I'm excited by this study because someone has stepped out of the box and looked at anorexia in a different way. 

Suppose all of the disorders within the title "eating disorders" are indeed endocrine based and that each person's endocrine/neurophysiology (I am sure there's a scientific term that would encompass this) is affected by their genome.  If the reader clicks on each of the areas of the body listed in this linked definition, one will see the number of different biochemicals secreted and how they are postulated to affect the body/brain in some way.  I find my mind boggled by all the interrelationships and in awe of my body's ability to stay in balance (reasonably, anyway).

Looking back over my musings these last few months and drawing from, admittedly, a very small cohort of two people who are members of a family that has demonstrated issues with eating over the years, I'd like to reiterate a couple of other thoughts that might be related to the endocrine system and tie into Dr. Dwyer's research.

I and my daughter both began our eating disorder journey with bulimia when we were in high school, about the same age, and having entered puberty about the same time.  Both of us progressed to anorexia within a couple of years, she more entrenched than I ever became.  Two other family members struggled with binging; one still does.  Many in our family have also dealt with depression and anxiety.

Interestingly, and I'm really curious about this and how prevalent it might be in the general population of those with anorexia, both my daughter and I also failed to thrive while being breastfed.  My mother and then I needed to gently flick our baby's heel to get us to wake up and continue to eat.   In an earlier piece I've written about oxytocin and how this hormone, present in breast milk, can cause a baby to drowse off without satisfying its need (not desire, but need) for enough food to maintain its weight and grow.    I do attribute my recovery partially to my decision to get massages which also trigger the release of oxytocin in my body.  Is oxytocin deficiency part of this picture?

After I met with Martie Fankhauser several months ago to learn more about nutrition, one of the things I learned is that there are also serotonin receptors in the intestines.  Interestingly, Harriet Brown wrote an article discussing this neurotransmitter and its presence in the gut (the body's second brain) in 2005 and how it is implicated in GI disorders.  Too much serotonin in the gut can lead to nausea and vomiting. Does puberty have something to do with this; or more specifically the hormones that flood adolescent systems?

So, I am asking myself is bulimia a separate illness caused by too much anxiety that leads to too much serotonin that leads to the propensity to vomit?    I also ask this question because I recently came across a disorder called Cyclic Vomiting Syndrome  and wondered if there is a connection since anxiety is one of the factors that seems to cause it.   Can bulimia then progress to anorexia once the endocrine system is knocked out of balance by the binging and purging that's common with this illness?  Bulimia certainly can become a habit - an addiction -  in and of itself, as well.

The literature and media has focused more and more on the prevalence of eating disorders in older women, as well.  Does perimenopause have something to do with this?  Hormones, again.  Do men also experience this but perhaps do not talk about it?

Finally, one must take a look at BED - binge eating disorder.  What causes a person to eat what others would consider "....an unusually large amount of food who also feels out of control while eating it?"  Dr. Cynthia Bulik is a well-known and major researcher within the field looking at eating disorders.  She has written the book Crave - What You Binge Eat and How to Stop.  One could postulate that even this eating disorder has an underlying endocrine system basis.  If anorexia, according to Dr. Dwyer, is the result of "a metabolic disorder caused by defective regulation of the starvation response" [see above for quote source], then why could not BED be due to another yet related metabolic disorder?

I hope we will soon begin to hear more about current research as scientists are collaborating and presenting more of their work.  We need more conferences that invite the different disciplines to present what they are uncovering about our neuro/psycholbiological systems. Twenty years (the time it used to take to get this kind of information to the patient and his/her team) is too long.