Tuesday, October 13, 2015

NEDA 2015, Sea Change: Reflections from Celia

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

NEDA 2015, Sea Change: Advocates are being heard and respected!
By: Celia Robicheau

The NEDA 2015 conference in San Diego was great. It was a great opportunity to meet and hear some of the biggest names in the ED world speak about their professional views and approach to treating ED.

It was fascinating to hear of the latest research being conducted around the USA by many well-known universities. It was devastating and hopeful to hear of loss, of wins, of hope from survivors, parents and providers. One common theme I heard, was the great amount of programs and services available to sufferers around the country if only everyone COULD HAVE ACCESS TO THEM.

My overall impressions from NEDA 2015:
  • Advocates are being heard, respected and brought to the “big kids” table. We are no longer being patted in the head in a condescending way.
  • Advocacy presence at NEDA was huge. Educated parents shared tables with professionals and I felt heard and taken into consideration.
  • Our opinions were sought out by experts, they felt that to make their programs, services and practice stronger and better it was imperative to develop them with our needs in mind.
  • Family/parents role is growing in support as key but sadly we still saw many professional bluntly dismiss the parent role.
  • Veritas, ERC and Lauradete representatives actively reached out to parents:
    To ask them to be part of their discussions and to ask what as parents they wanted their programs to bring to recovery. They acknowledged that treatment is relatively a short time and that parents are ones tasked to continue treatment with their children at home 24/7. Therefore, parents must have an equal role in the treatment team, they need to be part of the daily happenings.  Parents themselves have to be educated, trained and supported in continuing the work at home and not left to “figure it out.”  Programs that use a strengths based family system seem more successful long term. There was an overall theme of “together we can do this work”
  • Dr. S. Was once again (after ICED 2015) a disappointment. He was dismissive of the parents/caretaker/familial role, their importance in recovery, and lack of acknowledgment that regardless of sufferer age it is the bulk of care that falls on the parents/caretakers shoulders
    Dr. S. 's presentation was infuriating as he dismissed a mother’s experience who was brave enough to disagree with him and he was bluntly disrespectful to a sufferer who shared her story.  Dr. S. also insisted (contrary to new research being done within the last 5 years) that waiting for the sufferer to want help is the only way, and that he will sit next to their beds and do nothing until they ask for help. This is maddening as we know that recovery can start and be maintained despite patient compliance or acknowledgement of illness. Waiting is not only ineffective but potentially a death sentence.  It was very frightening to have a well-known and respected provider mentioning decades of research and ignore the most recent research. When we speak of scientific research, we do a historical review of evidence/data and then concentrate in the last 5/6 years of research as anything older is considered outdated.  I was very saddened to look around Dr. S's presentation room and seeing so many young, right off school providers nodding and writing down every word he said. They were listening to every word of this “expert” and believing it to be “the way”.
  • There are is still a lot of awareness work to be done by advocates and professionals to create a unified front.
  • Smashing scales may be very visually powerful, however, it's unrelated to eating disorders, it doesn’t help to dispel myth, to raise awareness or to help identify early symptoms.
  • College representatives still insisted that sufferer can do recovery work while attending classes and being supported at their counseling centers. I believed this to be poor advice for someone with an active ED. Only one representative in the college presentations said that school can and should wait and to put health first.
  • We need to shout from the top of our lungs that disordered eating is NOT an eating disorder. Educated experts are mixing the two and creating confusion.
  • We really really really really need to get away from the stereotypes that feed ED myths. There is no reason to feed “the choice” and the “vanity” myths, we have a wealth of clinical research and its time to speak facts and not opinions.
In conclusion, NEDA was a great opportunity to hear and learn from the best, to advocate and to connect. It was an opportunity to see how far we have come and how far we still have to go.

*Picture taken at the UCSD Dinner*

NEDA 2015, Sea Change: Reflections from JD

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

NEDA 2015, Sea Change: Family involvement, marginalized groups, and evidence based treatment
By: JD Ouellette

I am just starting to feel qualified to “rate” a conference and I was at NEDA 2014 in San Antonio last year, so this was my second NEDA conference. I have to give major props for organization, warmth of hosting, food, timing, locale (my hometown of San Diego has never been more inviting and visually stunning than over those few days) and the lineup of session offerings.

The passion of those at an ED conference is one of the best things about even if you don’t see eye-to-eye with someone on approach. The heartfelt tribute to Lynn Grefe and her husband’s sharing of some of her words of wisdom was stirring—I am sure her illness and loss were being sorely felt during the planning of this conference and Claire Mysko and NEDA did a great job in San Diego.

 I loved that UCSD and others brought so much evidence-based, scientific information and so many people were asking great questions. For the science-minded among us spending time with Drs. Hill, Frank and Kaye among others is always a treat.  Psy.D. Lauren Mulheim and RD Katie Grubiak gave an interesting, solid presentation on nutrition and the refeeding process in FBT that was also fun to tweet—good slides work well on social media.

What I have seen since I have been a parent attending these conferences is increased respect for and interest in what parents have to say (based on how the pioneering parent advocates talk about things when they first began showing up). I have taken to saying, “Temperamental traits for someone who develops an eating disorder include being intelligent and driven. We are their parents! Many of us have these same traits. Let us help!” A growing number of researchers, clinicians and advocates give positive feedback to family involvement in all aspects of the eating disorders community.

It was gratifying to see so many fathers; I believe having men involved more is a key to advancing the movement overall. I’ve never been in a work environment that wasn’t improved by being co-ed.  Yay to Don Blackwell and others for leading the charge and for more fathers and partners showing up to learn. The same is true for the representatives of marginalized groups doing the same thing as we parents and other affected individuals are—showing up and bringing our smarts and passion with us.

Speaking of marginalized groups . . . it’s good to have goals and a common goal in the movement is the inclusion of more marginalized voices—I would love it if NEDA would set a goal to not have a white, female keynote speaker for the next five years. Yes, this would preclude some worthy speakers, but it would do so much to change the face of eating disorders.

This year, as last year, the Family Panel was the most fulfilling, moving, healing portion of the program.  Part of what makes it fulfilling is the focus on a variety of lived experience. I would love to see that come to the keynote speech.

While I am writing my wish list, I would love it not be heavily focused on body image—I do think there is great danger that society is still interpreting this as causal and since they also have body image issues, but not an eating disorder, they are prone to view eating disorders as revolving around choice and vanity to a great extent.  I think that affects funding in the way that having many (but not all) lung cancer sufferers be smokers hurts research funding even though non-smoker lung cancer deaths put it in the top 10 of cancer killers.

Part of the reason to attend a conference is to meet people, have conversations and forge relationships. I was able to connect in person with folks I have been on conference calls with or know only through Twitter.  The other reason is to be a beacon of hope to other parents attending the conference looking for answers for their child. There was plenty of time for that as well as connecting with those you work with remotely, but are rarely able to connect with in person.  All of this was fantastic to the point of me still being exhausted a week later!

There was a bit of brouhaha with a physician who is arrogant and sexist enough to consider confrontation with women to be publicly categorized as “misunderstood, ignorant squawking.” You can call me names if you like, but please do so with the words you would use on a male. This same individual posted a truly horrifying and disrespectful image.  NEDA’s response when informed of this (not by me) was gratifyingly concerned.

Several EDPS/IED members were able to chat over drinks with Jillian Lampert from the EDC who was warm and interested and receptive to our concerns. We felt heard and that’s what it all comes down to when building a coalition.

For many of us beating the evidence-based drum, it’s not that we don’t want anyone to look at a variety of models; we want to be sure of the scientific rigor in evaluating programs and push for some universally accepted, evidence-based protocols that reflect recent research findings.  We are hearing amazing things about Stanford’s Remote FBT Delivery study.

Whenever I'm attending a gathering of parent advocates—at places like FEAST, UCSD, ICED and NEDA conferences and the March and Lobby Day--I am blown away by the passion and desire to bring change and the empathy among all involved. I am proud of what we are doing and I think things are poised to change. I meet researchers and clinicians who are rock stars in my world—the ones helping people now and in the future.

Also, shout out to UCSD for knowing how to throw a party! Our own Julia Fuentes and Lisa Springer got to go gushing fan girl on their two conference favorites, Dr. Walk Kaye and Dr .Guido Frank—both focused on neurobiology.  

Circling back to the Family Panel, our own Faith Yesner was a phenomenal presence. With warmth, grace and humor she detailed her path to advocacy and encouraged others to get involved, if only from your computer with social media actions. Faith has been lobbying for several years and feels her advocacy is a form of self-care—it’s important to do something and amazing friendships are forged when passions align.

As Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed it is the only thing that ever has.” There are more than a few thoughtful citizens in the world of ED advocacy—we are many and if we can unify we can get evidence-based treatment delivered earlier in the game and to more people.  To recovery!

*Picture taken in Balboa Park*

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*