Morgan and I just returned from the parent-founded and parent-lead F.E.A.S.T. conference, familiar to many of you as an online resource for parents whose children are struggling with an eating disorder.
The conference lasted two days, and we spoke at noon on the second day, to a group of (mainly) parents and a few activist providers. The following comments are just some of my personal impressions, not necessarily shared by anyone else.
The keynote speaker was Laura Hill, PhD., president and CEO of a place called the Center for Balanced Living in Ohio. Because of the name, I was afraid this would be a “love your body” type of inspirational speech — I should have known better. Her presentation was dynamite! She spoke at some length about her collaboration with Dr. Walt Kaye at UCSD and results of that work beginning to come in from their fMRI brain scans. It was also gratifying (for me) to hear about research in support of our style of re-feeding children at Kartini Clinic, namely, that limiting food choices reduces anxiety and torment. The brain scans also validated something Michael Kohn of Westmeade Children’s Hospital in Sydney, Australia said to me years ago and which I often quote: “people with anorexia nervosa cannot self-regulate around food”. Note: not will not, but cannot. This research and our own clinical experience is the reason we do not “return the control of eating” back to the young patient after the first phase of re-feeding and eating disorder treatment, something I know some parents and providers disagree with.
But what does “control” mean in this setting, anyway? “Control” is a moot point if parents are making (and eating) breakfast with their children, making them dinner and sitting down to family meals with them. In fact, because of the baggage this word “control” carries with it – from the days when eating disorders were thought to be “all about control” – I wish we could eradicate it from our professional vocabulary entirely.
I was also pleased to hear Dr. Hill report that their findings were thought to be valid across diagnostic categories (e.g. binge eating disorder, bulimia nervosa, anorexia nervosa), just as one would expect from brain disorders with crippling anxiety components.
Carolyn Becker PhD spoke about the primary prevention of eating disorders, but although her presentation was coherent and she is well spoken, I wasn’t convinced. How can you do primary prevention when you have no idea what the biology is? She argued for taking a slice of the money that goes to treatment and putting it towards prevention. I would argue that we might take a slice of the money that goes towards (expensive) treatment and give it to the bench scientists who are trying to unravel the basic science behind brain dysfunction and the metabolic puzzle of what we call “eating disorders”. By the way, which one of you out there with a sick child is ready to give up any slice at all of the funds that are made available for treatment? Not I.
Laura Collins Lyster-Mensh, founder of F.E.A.S.T. and advocate par excellence spoke about her dreams for a complete spectrum of care. Laura spoke of the understandable but misleading yearning for “normalcy” that families go through, of their struggles to make it work at home, to find supportive doctors, therapists and dieticians. She also spoke, as she often has before, of the need for consensus in the treatment community around something as basic as weight restoration, the lack of which has kept her gnashing her teeth for years.
On the second day (mentioning only a few of the talks whose content struck me as original) Siobhan McGurk, biostatistician, gave a talk designed to help parents and non-biologist providers decipher research findings and sort the wheat from the chaff. Now I ask you, could there be a more difficult subject (biostats) to make lively and understandable? She did an outstanding job. It was surely the best, clearest and most concise rendering of this thorny subject I have ever heard, including talks in medical school and during my MPH studies. What a feather in FEAST’s cap to have a presentation of this stature.
My own talk was called “Towards a Definition of State not Weight”, but I should have called it “Weight Restoration 2.0”, as that is how we have come to think of it. Because of the sophistication of the audience, there was no need for me to re-hash yesterday’s news flashes (e.g. “parents don’t cause eating disorders and children don’t choose to have them” and “without complete weight restoration you will get nothing”). Had I been speaking to doctors (as I will do later this month) I would have had to reinvent that wheel since, incredibly, this is still news to some providers. I spoke about the new work Dr. Moshtael and I are doing in collaboration with our mentor Dr. Emily Cooper, on the metabolic recovery from starvation that our patients experience and how it can go wrong. We’ve been seeing some interesting patterns in leptin, thyroid hormones, sex steroids, insulin and glucose in our patients, and I reported tentatively on this new information. We at Kartini Clinic are clinicians – not researchers or bench scientists – so we are reporting what we see, and what we think about it. This will be fodder for future blogs and presentations.
I was told that FEAST organizers will try to publish recordings they made of the presentations at this year’s conference. So may I encourage you all who read this to visit the FEAST website and their powerful ATDT forum for parents? I think you will find it worth your time.