#NIMHchats Follow Up, Prevention, and (of course) Genetics

As promised, I wanted to return to some of the excellent points that were raised in the field yesterday during the #NIMHchats on #BED. Tweets were flying by so fast I just could not catch all of them. The storified chat can be found here, but it does not include all of the tweets from the field. I have pulled out some questions that were representative of a number of great questions and am just expanding on my responses (or nonresponses) a little here. Plus adding in one topic from Twitter earlier in the week, namely prevention.

Out of Control

@dontlivesmall It’s frightening because that feeling of being out of control in BED is maddening

The concept of out of control is challenging. There is no blood test for BED, so we have to rely on people’s self-reports. For some people it is not a big deal to admit that they feel out of control. For others, that is just not a phrase that they would care to use about themselves (at least at first). So it is important to come up with other ways to describe the feeling and the behavior—like not being able to put the brakes on, feeling compelled to eat, continuing to eat even when you are not hungry, mindless eating, intense craving, urge, grazing, addicted to food, compulsive eating…whatever it takes to gain entrée into the conversation. I am not saying that all of these phrases mean the same thing, because they don’t. I am saying that it is important that we find ways to talk about this phenomenon that resonate with people who engage in the behavior. Then once you are in the conversation, gather details to help understand if they are indeed engaging in binge eating.

Talking to Loved Ones

@dailyRx What’s the best/most sensitive way to approach a loved one about their #BED?

@ConsumerMedical What are some of the best ways to support a loved one with an ED or #BED

We have found through our research on couple therapy that partners desperately want to help but have no idea what to do or what to say. Often they become so fearful of saying the wrong thing that eating just becomes a “no go zone” for conversations between them. All too often, the electric topic becomes weight and weight control. We all know that nothing good comes of that. Being armed with information is a good start. Always approaching someone out of care and concern is a critical first step. They might not hear you the first time, but come back at it with tact and timing. We are working toward developing interventions for all eating disorders that include the partner in treatment. It helps provide guidance as to how to support and react, lends support to the individual with BED, and helps with basic relationship functioning. You can read more about UNITE here.

BED and Diversity

@CROWRDREAM How do eating disorders appear in communities of color? #MentalHealthAwareness

@MLReyes_PR and therefore treatment delivery in Latinos should be different

@CROWRDREAM #BED can also be triggered on #LGBTQ youths who are afraid to eat with family members who shame them #GotYourBack

Bingebehavior.com has been collecting information about how #BED lives in diverse communities. You can read more about that here. Dr. Mae Lynn Reyes has been conducting a study at UNC called PAS “Promoviendo una Alimentación Saludable” and has been finding some intriguing differences in the Latino population. The first observation is that the eating disorders she is seeing don’t necessarily fit into a tidy DSM-5 box. There tend to be more variations on the theme, presentations that fluctuate, and many stressors related to immigration and poverty that influence the face of the eating disorders. Because of this, she cautions that we can’t be too fast to just apply standard evidence-based treatments to Latinos with eating disorders. In fact, if you look at the demographics of people who participate in most clinical trials, they are not terribly diverse. Dr. Reyes-Rodríguez is testing out new ways to bring family members into treatment to aid retention and improve outcome—an approach that is congruent with the value of family in Latino culture.

We need more information on mental health in #LGBTQ youths across the board, not just eating disorders! If you feel like your identity is already under scrutiny or disapproval by your family or friends, the family meal or the school cafeteria can be pure torture. #BED is but one potential adverse outcome of situations in which being yourself meets with disapproval, teasing, or bullying from others. Follow @AmyKaufmanBurk

Diagnostic Crossover

@KAKPhD How common is it for patients with ANR to convert to BED? #NIMHchats #BED

During the course of someone’s illness, there is often diagnostic flux in eating disorders symptoms. For example, around half of people with restricting anorexia nervosa may develop bulimia over the course of their lifetime. The transition from bulimia to BED is also common. Anorexia to BED and BED to anorexia is somewhat less common, but it does occur. Something we are seeing more and more of is the emergence of anorexia nervosa post-bariatric surgery. This is highly concerning from a medical perspective and can be very dangerous. We are currently conducting research in Sweden that will give us a better idea of just how frequently all of these transitions occur. Ultimately we’d like to have predictors so that we can pre-empt some of the patterns and perhaps go toward remission rather than crossover!

Physician Bias

@dontlivesmall RT YES YES YES @WeightDebate We need to remind Doctors, therapists,et al to avoid their own prejudices when dealing with #BED

This topic came up quite a bit on the chat. Physician bias is a frightening thing, but doctors are human. If you live in a country where you can choose your primary care doctor, then you might need to shop around a little until you find someone with whom you are comfortable talking freely about your eating disorder. Talk with others in support networks to seek out sympathetic and knowledgeable doctors. If you are basically assigned a provider, then come armed with information and keep your guard up. It’s really hard when you want your physician to be someone you can rely on and open up to, but if it is never going to be that kind of relationship, then just get what you need from him or her and find your support elsewhere! And if the doctor tells you to lose weight, don’t let it get under your skin and cause a binge. Remind yourself that in this case, you know more about the topic than your doctor does and he or she has no right to trigger a binge.

Men

@PeerWorker How can #SocialMedia be used as a tool to combat male-oriented myths about #BED?

Several of you asked for us to be sure that we are talking about men and women when we discuss eating disorders. I think social media has been really helpful in spreading the word about eating disorders in men. But there is still disbelief, and it is still hard to reach guys who may be suffering but aren’t comfortable reaching out. I honestly think having people like @bcuban tweeting about sports, politics, law, and eating disorders is a great example. Some of his followers might be following him for sports, but then they are exposed to a topic that they never would have sought out voluntarily—eating disorders. Even if he only reaches a few guys with that tweet, it has to start somewhere. Advocacy groups that focus on males are also safe havens. We also need to work on understanding how partners (female and male) should talk with their male partners who they suspect have an eating disorder. Much of the work in this area has focused on “how to talk to your wife/girlfriend about an eating disorder.” But we have not developed scripts that work when, for example, you husband has become obsessed with working out and body fat to the point of illness.

Seasonal Affective Disorder and Night Eating Syndrome

@PeerWorker How does #SeasonalAffectiveDisorder increase #BED factors?

What about night eating syndrome (NES)

There is not a lot of research, but seasonal affective disorder can definitely exacerbate binge eating. Many individuals with SAD report that their eating becomes more out of control during the fall/winter months.

Night eating syndrome also goes hand in hand with BED in many cases. Our work in Sweden revealed a genetic correlation between of 0.66 suggesting considerable genetic overlap.

Recovery

@TeenHealthGov A4: It is possible for individuals w/ #BED to get help & get better

BED is treatable. People do get well. For some people, a round of self-help goes a long way to getting BED under control. Those are the minority. Others find that they need a course of psychotherapy (the duration depends on the individual and the type of therapy). Lots of people on the chat said that they found an array of interventions to be helpful—some traditional (like cognitive-behavioral therapy), some more alternative like yoga or art. Many people talked about the benefits of mindfulness approaches and that is reflected in the literature although more studies are needed.

Sleep

@AscentNH Why does it affect sleep so much? #NIMHchats

BED affects sleep for several reasons. First off, binge eating often occurs in the late afternoon to evening hours. Having that much food in your stomach simply interferes with the ability to sleep. Second, many people with BED also suffer from gastroesophageal reflux disease (GERD) which can also affect sleep. Third, especially in larger individuals with BED, sleep apnea can seriously affect sleep quality and efficiency.

Bullying, Teasing, and Trauma

@emotionquotien How does trauma affect #BED in people. #Discrimination #bullying #abuse

There are some excellent data emerging about the role of bullying and teasing in BED—interestingly both having been bullied and having bullied others. So many individuals with BED recount horrible stories from their youth about being teased or bullied about their size or other aspects of who they were. They recall from early on burying their shame and anger in food. Progress is being made, but there is still so much more to do to convince teachers and parents that bullying is not a normal or acceptable feature of childhood.

Words to live by

@MaliykaisHealth And just like any other illness ppl should be helped and not ostracized

Prevention

Earlier in the week, I was asked about my thoughts on prevention. Do we really know enough to roll out eating disorders prevention efforts or should we focus on early detection and intervention. I will preface my statement with an acknowledgement that I am not a prevention researcher and that is by active choice. My passions are figuring out what causes eating disorders and how to treat them. If we can figure out what causes them, then (and only then) am I likely to become a prevention researcher. If, for example, we discover the scores of genes that give rise to anorexia nervosa in or ongoing genetics project ANGI (see below), then, I will engage in work that considers whether that information can be of assistance in preventing genetically high-risk individuals from developing the disease. Now, I don’t feel as if I know enough about causes to design the kid of prevention that I would like to design.

In deference to my prevention research colleagues, everything they are doing is worthwhile. They are giving youth tools to improve their self-esteem, their body esteem, their media literacy, their emotion regulation, or to reduce their thin-ideal internalization. These are all extremely valuable tools and they probably do prevent a certain number of individuals from engaging in behaviors (e.g., extreme diets or obsessional body checking) that could be first steps down the path to an eating disorder. These approaches are less likely to have an effect on that individual who is highly anxious, experiences unplanned negative energy balance, and finds him or herself lured into the anxiolysis of starvation. Nor will they affect that individual who develops a serious illness, loses a lot of weight, and finds that to be an unexpected gateway to anorexia.

As with treatment, with prevention interventions, the first law is to do no harm. My personal quest is to unravel cause better so that we can do a better job of identifying who is at high risk, and of catching these disorders in the earliest stages before they catch hold.

Genetics

Finally, no post from me would be complete without a section on genetics. We are getting there with anorexia nervosa. The Anorexia Nervosa Genetics Initiative (ANGI) is a four-country initiative striving to collect DNA and clinical information from 13,000 individuals who have had anorexia nervosa at any time in their life by the end of 2016. We need a similar initiative for BED so that we can make the same kinds of discoveries we are making for eating disorders that we are making for other psychiatric disorders like schizophrenia, bipolar disorder, autism, and major depression. Collections such as this are costly and we have had to rely on philanthropy for ANGI. We could do this. We know how to do this now and have the social media networks to reach out to thousands of individuals with BED to participate. Only one thing is lacking. This is an outright plea to anyone who has the energy or means to get this ball rolling. I have to focus on the science right now. But for inspiration, take a look at what Charlotte Bevan and Laura Collins did in the UK in creating Charlotte’s Helix. It would be fantastic to get something similar started for BED that did not have to emerge from tragedy.