Tuesday, October 13, 2015

NEDA 2015, Sea Change: Reflections from Julia

International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA

NEDA Conference: discussion of key neurobiological findings
By: Julia Fuentes

NEDA was the first eating disorders conference I attended.  I went with the goals of learning more about the advocacy world and hearing the newest information in the neurobiology arena.  I attended the neurobiology Q & A session with Dr. Walter Kaye and Dr. Guido Frank.  Hearing this information from two of the leading experts in the field was very refreshing and empowering.  The main takeaways I got from the session were numerous.

In regards to biology and neurobiology: The field vastly oversimplified what the genome project would contribute to the understanding of the field.  We now know there are very few consistent genes in anorexia and it will take years to find a gene pattern. What we do know is that imaging studies have shown that there are persistent alterations in the reward centers of the brains of people who have recovered from anorexia.  The studies found a commonality in the centers in the brain dealing with self discipline, organization and wanting structure which appear to over ride reward centers. Also, the sensitivity to error is higher acting than the sensitivity to reward in those with and recovered from anorexia. The common traits seen in many with anorexia are hard wired in the basal ganglia and the upset of gonadal steroids exacerbates these traits.  Other key neurobiological findings included a discussion that the higher system  (cortex) and lower systems (more primitive brain such as basal ganglia, hypothalamus, etc) in the brain do not communicate as well in those with a history of anorexia and to train the brain to communicate better it takes 3-6 months for a behavior to become a habit in uncomplicated cases.  We also know from the research that hypothalamus issues and hormone imbalances seem to remit with true weight restored recovery.  Another finding was that those recovered from anorexia have more white matter tract (the myelinated tracts that move information along) connectivity and there was a positive correlation between length of illness and increased number of fibers. The reintroduction of fats back into the diet has been shown to have a major impact on the lipid wall of the brain in terms of dopamine functioning.  One last biological aspect that was discussed was that the research on the microbiome in the gut needs way more research before conclusions can even be speculated because we have to replicate the 100 millions cells in the microbiome.

In this session research funding was also discussed and Dr. Kaye stated very firmly that research funding comes down to advocacy and groups need to lobby congress for neurobiological research funding.  He stated how other fields have a leading authority or groups who raise funds for leading investigators but that this is not happening in the field of eating disorders.  I was so proud of my fellow recovered advocate Lisa Springer, for asking Dr. Kaye and Dr. Guido if they thought funding was affected due to eating disorders being seen as disease of choice and vanity, to which they unequivocally stated yes. They went on to say that the extraordinary cost of treating eating disorders is due to several large for-profit centers with very little research based treatment methods causing this.  I was more heartened later in the evening when Lisa and I were having a fan girl moment at the UCSD dinner/cocktail event talking with Dr. Kaye and Dr. Guido and they brought up the insightfulness of her question and commend her.  Her question led to further discussions during the Q & A session in which Dr. Kaye and Dr. Guido stated how eating disorders need to be renamed "reward center disorders" so that the stigma is taken away and becomes a nonissue and all ill conceived notions regarding the whys of anorexia can be forgotten. 

Outside of the sessions, I had the opportunity to meet some of the most amazing advocates and see so much of beautiful San Diego.  The advocates I met are truly the most kind souled, intelligent minded, hardest working humans I ever met.  To steal the word tribe from JD, meeting other advocates in person is like finding a lost tribe that speaks the same language as you.  I personally never intended to get into ED advocacy, but almost one year ago today, I randomly saw a tweet about DBT dolphining while advocating for cetaceans on Twitter, which led me to the latest neurobiology information on eating disorders that sparked my desire for ED advocacy.  I am glad I was able to attend the conference because hearing first hand the most up-to-date neurobiology information from two of the leading experts in the field drove home the point that eating disorders are biologically based illnesses not unlike cancer.  The magic of collaborating with others and the entire experience definitely strengthened my resolve to be a better advocate.

*Advocates meeting, many for the first time in person*

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