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*