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| Juxtaposition of the old and the new in Boston on the last day of the conference; it seems a fitting visual for this post! |
International Conference on Eating Disorders: Recap (Really Late Recap, Sorry!)
I feel terrible for having waited this long to recap the
International Conference of Eating Disorders (ICED) put on by the Academy for Eating Disorders (AED) for all our members, but boy howdy
was I beyond exhausted. Plus I walked into a work situation that itself
required lots of energy expended. Basically, I was a hot mess for 11 days after getting home and am really just now back
in the swing of things. Amy traveled from Dar Es Salam and also tacked on a
visit to her most adorable baby granddaughter and then headed back into the
thick of her work and home life.
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| L-R 1st photo Joan Reiderer, Amy Cunningham, Lisa LaBorde; 2nd photo the FEAST contingent with representation from Australia, New Zealand, Canada and the U.S.A and featuring the incomparable Laura Collins; 3rd photo, Alice Springs, Celia Robicheau, Alyson Earnest, JD Ouellette, Alec Rodney |
As bonding experiences, conferences are amazing. Amy and I
had never met “IRL” so that in itself was a treat. Alec Rodney and Alyson Earnest were there and
at various points Celia Robicheau, Alice Springs, and Lisa Epstein were there along
with many people from FEAST and parents there independently. We got to go full
fangirl on the amazing mom who wrote the first AED Guide to Medical Management
of Eating Disorders at dinner one night. As a collective, IEDAction, EatingDisorder Parent Support, The Dirty Laundry Project and F.E.A.S.T. consistently share similar goals and a vision for progress.
We want physician education and access to evidence-based
treatment prioritized as number one. We feel any treatment predicated on or
commonly including blaming family dynamics is in opposition to current
evidence. We want researchers and clinicians to listen to parents about what we
have seen and observed as this is important information to improve treatment
outcomes.
For IED specifically, a major reason for investing
considerable time and money (Tanzania to Boston for Amy!) in getting to this
conference was to show people firsthand who we are and what we are about.
Who we are is a collective of smart, educated parents,
clinicians and those affected who have something new to offer this advocacy world.
We have fresh energy and fresh ideas plus experiences from other advocacy
arenas. We evaluate the status quo with an outsider’s eye while we honor those
in this movement on whose shoulders we stand.
What we are about is working on several fronts to change
societal perception of eating disorders along with promoting meaningful changes
in how and when eating disorders are diagnosed and treated. We are about
working collaboratively with other groups as we have done with the National Initiative for Eating Disorders (NIED) in Canada.
We are about providing a space for dialogue and education and looking for any opportunity to have conversations about eating disorders that open minds. We are also, and importantly, about transparency in terms of financial relationships/connections and allowing people to evaluate for themselves versus trusting others to make decisions for the field without engaging all stakeholders.*
We are about providing a space for dialogue and education and looking for any opportunity to have conversations about eating disorders that open minds. We are also, and importantly, about transparency in terms of financial relationships/connections and allowing people to evaluate for themselves versus trusting others to make decisions for the field without engaging all stakeholders.*
We were very well received in general. We had incredible and
productive conversations with amazing people, both as individuals and in
groups. We forged relationships on which to build further cooperation in
advancing our common agenda.
Beginning on a High
Note
IED had been invited to attend a leadership meeting on the
Tuesday before the conference. I had already purchased my ticket, but Amy was
able to make it and thank goodness she did. Her contributions were important
and the committee decided to officially accept Cindy Bulik’s 9 Myths (though
they will be restated as truths) as the position of the AED. This is very
important.
This happened after I wrote this post!
This happened after I wrote this post!
Thursday was the official conference beginning and Cindy
Bulik shared exciting updates from what they are beginning to learn from the
ANGI study. There is some indication the same genes (SNPs?) may mutate one way to cause schizophrenia and another to cause anorexia. Fascinating stuff!
Alec was praised by a fellow conference attendee for
his succinct but powerful statement made at the end of the plenary presentation
on “Dissemination and Development of
Psychological Treatments in Eating Disorders: Evidence-Based or How to Sell Snake
Oil?” The presentation was predicated, humorously and effectively, on Donald Rumsfield’s “Known Knowns” and “Unknown Knowns” and “Unknown Unknowns. “ Alec
asked if wasn’t time AED make it a known known that excluding parents should be
the exception across all treatment modalities. The answer from incoming AED
president Dr. Becker was equivocal, but the audience applause was unequivocal
support from many.
To be honest, the rest of Thursday, Friday and most of
Saturday was a blur of fascinating sessions and sitting out sessions to hang
with very cool people and relationship build and soak up institutional
knowledge and coffees and lunches and dinners and drinks and very late nights.
Our core group (Alec, Alyson, Amy and I) divided and
conquered on attending sessions and came together regularly at breaks to share
and strategize. We hung out with (only) FEAST people quite a bit and were at the FEAST
luncheon when Mary Beth Krohel received the FEAST Magic Plate award (it’s a
lovely engraved silver plate) for her work (as mentioned above she is the
brains and passion behind the AED Medical Guides). A highlight of the trip for
me was her ceremonial passing of the baton to us newcomers as we ate lunch. We
were lucky to be at dinner when the inspirational June Alexander plated food
straight off a Mongolian grill at Fire and Ice.
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| At the FEAST Booth--ground zero for family empowerment |
While everything we learned was helpful, one of the most
important presentations was the panel on having difficult discussions—Dr.
Carolyn Becker, a leading prevention researcher and Laura Collins, founder of
FEAST, were among those sharing how to have difficult conversations—about
building bridges. This was a self-selected group of people who care about
listening and evolving and was definitely Alsyon’s highlight experience; the
atmosphere was virtually electric with hope. Another much-talked-about session
was on exercise and Alec took lots of notes there.
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| Amy, Alyson, Dr. Hill |
Formal and informal meetings of note were held with Dr. Laura Hill
(Alyson, Amy, Alec) with GFED (Alec, JD) and with Laura Collins (Alyson, Alec and Amy). A huge disappointment was the last-minute cancellation by Katrina and Kathleen
from the Eating Disorder Coalition of a meeting Katrina had made with Amy at the Tuesday Leadership
Conference.
We are all very interested in legislative change and would
love to work with the EDC and we also need to be fully apprised of the content
of what is being lobbied for before committing considerable time and money both to
get to D.C. and to work locally with our representatives.** Putting our stamp of
approval, both as individuals and organizations, on anything sight unseen won’t
happen and for the EDC to respond to our queries with “trust us” has us
concerned and puzzled.
We made sure to check out the exhibitors and Amy made some
very important connections with people from The Joint Commission and IAEDP—we
will update on those when some things firm up. Amy’s wide knowledge base in
Public Health and Legislative Advocacy, gleaned through HIV/AIDS work, is a true
gift to the movement.
Late Saturday afternoon, the final session, a Think Tank
presentation by Dr. Michael Strober of UCLA along with a panel of clinicians
came around; having heard Dr. Strober is now known for his progressive views on
eating disorder treatment we were all anxious to watch and listen.
The format of the presentation was a case study with various
clinicians weighing in on the case Strober presented—a 16-yr old who had been
six months in the hospital with no weight gain, came from chaotic family, mom
was an alcoholic and grandfather with whom the patient was close recently
deceased—and then him sharing what he actually did with this patient.
When it came time for Dr. Strober to share his resolution he
began with sharing this slide: “Some assertions about AN, deemed factual.” I
took issue with both the tone of “deemed” and the way the bullet points are
framed to make the assertions seem ludicrous.
1. It ‘s a genetic
disorder, the environment matters little—the idea that legacies should matter
in clinical care, that information –knowledge of a patient’s history—should be
sought in an effort to understand how a young life became so disordered is an
anachronism.
I have never heard a single person assert such a thing as
the above. UCSD, a program that is agnostic as to cause, asked us for a
detailed history of her life. They did this not because they presumed something
wrong in her background—it’s prudent medical and psychological care to ask
these questions.
As to “understanding how a young life became so disordered,”
it happened in our house when anorexia developed. This was not a chicken-egg
situation for us or many others I know—the disordered life was a result of the
eating disorder.
2. What patients
espouse lacks authenticity; it is a starvation induced screaming madness; it
should be dismissed; it resolves with refeeding.
Again—huge leap from “understand that the malnourished brain
can’t think clearly and anorexia often presents as a psychosis replete with
voices/thoughts and the inability to understand one is ill” to “dismiss the
patient’s voice.”
3. Psychotherapy must
await weight restoration; refeeding is an essential predicate for
psychotherapy.
Very broad and not what I’ve seen in practice at all.
Prioritizing refeeding, weight gain and full, ongoing nutrition yes. Forget any
therapy until w/r? That I have not seen as common. From personal experience my daughter didn’t
get much out of any therapies until she was well on her way to w/r, but she
still was physically present for sessions—meaning she mentally present for the psychotherapy at the earliest point at which it
began to have value.
4. There is a gold
standard treatment for our young patients.
Gold standard overstates it a bit (as intended), but yes
there is. Currently FBT produces the best outcomes for adolescents with
anorexia. It doesn’t help everyone, but it does help the greatest number of
people and so should be presented to realistically presented to families as an
option and with that information.
What did Dr. Strober do with this you patient to get her on
the road to recovery? I can’t remember everything (what with the blood whooshing in my ears
after I heard these two statements he made) and his words are paraphrased here:
·
He listened to the patient because all
anorexia derives from a patient having not been heard by those around
him/her.
·
He something something because all anorexia is a maladaptive coping
mechanism for the patient.
My jaw remained on the floor until Laura Collins, at the
mic, spoke in a clipped and measured words something to the effect of “I cannot
believe this. I am upset. Others are upset. People have walked out.”
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| I have a happy face; this is not it. |
Having recovered my faculties, I also took the mic and Dr.
Strober and I engaged in a debate of sorts; one in which I was treated
dismissively and condescendingly (and I believe I was a proxy for parents in
general) and told I misunderstood what he was saying. Being of a thick hide and
a temperament suited to fighting back instead of sitting down, and knowing that
as a parent I am given more latitude to confront a man of his stature and
position, I pushed back.
I pushed back with my daughter’s story and with other
stories I have heard from all of you. Of patients being forced to cast about
for a plausible underlying cause to please a clinician sure there must be one
in all
cases. Of parents asked to admit to a sick child’s version of events
that is heavily ED-filtered and remembered differently by all other parties
present. Of families that did have dysfunction who got the help they needed—not
because they caused their child’s illness, but because they did what it took to
support recovery and save their child’s life.
Of how early intervention and treatment that is agnostic to
cause and empowers parents to keep their children’s brains in a place where
they can do work needed for recovery—and that work varies from person to
person. Of how empowered and educated parents
weave safety nets that keep their children in recovery or catch them quickly if
they fall.
The audience reaction was gratifying in the extreme. I was
heard which means WE were heard. It was a special moment for me to have Laura
Collins, who was, not that long ago, the only parent at ICED and who was not
welcomed then nor for some time.
The follow up to our lengthy back and forth (and I have no
illusions that Dr. Strober listened to what I said at all—in fact I would bet
he did not based on demeanor) was the doctor shown behind me who said simply, “I treat patients
with leukemia; I don’t need to know how they got it to treat them.”
Closing comments were made by local mother Alice Springs who shared the
difficulties, even in a city the size of Boston, with getting a diagnosis and access to high-quality, evidence-based treatment and that it was the
perseverance of herself and her husband with regard to refeeding and continued
full nutrition that shaped her daughter’s initial and continued recovery.
The time after that session ended and before our core group
left the fantastic party for a cheaper place to enjoy a cocktail ($10 for a
glass of wine?!) and a chance to process and bond with each other was truly
amazing.
Several clinicians and others reached out to me and to Alec,
Alyson, Celia and other parents to apologize for the aforementioned
condescension and dismissiveness, a couple apologized for leaving it to a
parent to press their colleague about both the content and delivery of Dr.
Strober. A lovely Physician’s Assistant from Texas stopped me en
route to the restroom and told me what she heard had changed the way she will practice medicine. I had a mutually respectful dialogue with a couple recovered
clinicians and asked them to consider that possibly instead of personal trauma
being viewed as causal, viewing it as a complicating factor could allow for a
synthesis of the biological and psychological. Pondering happened on all sides.
The cherry on top of the sundae of all the positive feedback
for parents was when Dr. Becker tracked me down during the festivities to
assure me changes were coming and a repeat of our exchange would not happen
again on her watch.
One advantage to waiting to write a recap is the chance to
let some of the energy and magic of the experience settle so one can see what
was really learned and accomplished. The advantage of hindsight tempers only
slightly the positivity with which I reflect back. It feels to me we are
standing on the precipice of real change that will impact and revolutionize the
treatment of eating disorders.
Who are we and what are we about? We are Full Metal Apron
fighters – for our kids, for ourselves, for our patients and for real change
that supports full recovery and less time spent sick.
To the AED, the group responsible for this incredible
opportunity and for bringing together and honoring the voices of all
stakeholders, we say thank you and see you in San Francisco next year!
*Relevant citation: Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust and Trustworthiness. We at IED believe that the duty to fully disclose possible conflicts of interest is not limited to researchers and clinicians, but should apply to all advocates and advocacy organizations as well.
*Relevant citation: Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust and Trustworthiness. We at IED believe that the duty to fully disclose possible conflicts of interest is not limited to researchers and clinicians, but should apply to all advocates and advocacy organizations as well.
**Shortly after this was written, this press release highlighted what is in the Anna Westin Act and this is the pre-lobby briefing. Thanks so much to the EDC for sharing the video.
