Sea Change Needed - All illnesses, even those resulting in brain disordered behavior like schizophrenia, OCD, eating disorders, depression, bipolar, etc. are biological

I follow the activities of the Eating Disorder Coalition for Research, Policy and Action whose mission is to increase awareness, educate policymakers, and promote understanding about the disabling and life-threatening effects of eating disorders.   Its members are advocating for passage of The Freed Act that would fund much needed research to better understand eating disorders and provides solutions for prevention, education, screening, diagnosis and treatment. Among other things, the legislation would fund grants to conduct research on treatment efficacy, train health professionals and school personnel to identify and respond to eating disorders, and build on existing reform efforts to ensure that treatment is available to those who need it.

In addition, since my husband now holds a position with the Critical Path Institute, I'm hearing about different initiatives across the country having to do with illnesses/conditions like Parkinson's Disease and Alzheimer's Disease that are categorized as physical ailments and therefore eligible for health insurance coverage that is not equitably available for those with brain disorders/mental illness.

A couple of days ago he told me about the International Mental Health Research Organization  founded by Garen Staglin that is committed to funding research and raising awareness to help people with brain disorders, and to finding cures for schizophrenia, depression and bipolar disorder within a generation.

This news is quite exciting as is the incredibly important initiative promoted by Patrick Kennedy called One Mind.  Kennedy was joined by Vice President Biden, Martin Sheen, other members of the Kennedy Family  at the One Mind Research Conference last month where Senator Biden spoke to 400 philanthropists, policy makers, scientists, and other academics at the John F. Kennedy Presidential Library and Museum during a fund-raising luncheon that launched a 10-year national plan to advance neuroscience research.

Co-chaired by Kennedy, this initiative has proposed a Ten Year Plan for Neuroscience:  From Molecules to Brain Health .  There are two immediate goals of this initiative:

to create the One Mind Brain Database, drawing together existing knowledge resources to offer a globally accessible online platform for sharing data on neuroscience discoveries, and to facilitate collaborative work.

 to complete the formation of a public-private partnership with government, academia, advocacy, and the pharmaceutical industry to allow for the acceleration of science to cures by sharing of “pre-competitive” intellectual property and to accelerate translational treatments and cures.

I've been mulling all of this over for the last few days.  Earlier this week, when focusing strictly on eating disorders, I began to speak about the importance of the need for a different perspective.  Why?  Because I believe that we are defeating ourselves and undermining the needs of people with brain disorders by continuing to place emphasis on a separate category titled mental illness for diseases like eating disorders, schizophrenia, obsessive-compulsive disorder, depression, and bipolar disorder rather than calling for the unification of all bodily health issues.

What would be the benefit of this?  For starters, there wouldn't be the current second class status of brain disorders/mental health care as defined by our ubiquitous Health Insurance Industry.  And, more to the point, consequently sufficient treatment - both in quality and time - would be devoted to treatment for these disorders.

Speaking just about eating disorders now, I continue to be dismayed by what is happening within the insurance industry since the passage of legislation championed by deceased Senator Edward Kennedy, specifically the Mental Health Parity Act passed into law in 2007.  Too many insurance companies are seeking ways to get out of paying for necessary treatment.  Thirty days and even ninety days just isn't long enough.  The first step is to normalize nutrition.  This can take at least 90 days and until someone with anorexia, for example, is weight-restored other forms of therapy as well as medications simply won't work. With the unification of all bodily health issues, this bifurcation would stop.  Treatment would be longer and therefore more effective.

Our country and our society must step up and help those with brain disorders. It's time that we all quit calling illnesses like eating disorders (5-HT disorders), depression, OCD, bipolar disorders, etc. mental illnesses. Those who have these illnesses all _do_ exhibit brain disordered behavior but they are all biologically based through genetic makeup.  It's time for a sea change.

Update on Special Needs Trust/Financial Assistance for a Loved One with an Eating Disorder

I just received this link about a recent publication of the Special Needs Alliance for the benefit of a Trustee of a Special Needs Trust.

These trusts can be set up for loved ones who will need supplementary financial help during their lifetimes.  These trusts are designed so they will not interfere with continuing eligibility for public benefits.

I've written about Special Needs Trusts in an earlier post and you can obtain more information from the Special Needs Alliance Website.

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. 

A look at eating disorders and starvation - something new/something known

I'm going to simply post links to two articles and hopefully disseminate this information to an even  broader audience.

The first article is by Carrie Arnold and appears in her blog Body of Evidence in PsychologyToday.com

The title is, "In anorexia, separating mind from body is impossible."

The second article is by Dara Moskowitz Grumdahl and appears in the on-line June 2011 issue of experiencelifemag.com.  It's titled, Food Crazy. 

Carrie's piece points to a radical new idea about anorexia.  She also reiterates the truth often overlooked by many in the medical profession as well as the health insurance industry - the brain and therefore the mind is part of the body.

Dara's piece reminds the reader of how vulnerable our bodies are to the effects of starvation and what happens when we consume less than our bodies need.  Remember that the brain alone needs 500 calories of glucose to operate effectively yet many so-called diets hardly provide much more than that!!!!