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Let’s Talk About Eating Disorders with NIMH Grantee Dr. Cynthia Bulik

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Cynthia Bulik: Hello, thank you for joining me today. My name is Dr. Cynthia Bulik. I'm a professor at the University of North Carolina Chapel Hill's School of Medicine, and I'm founding director of the University of North Carolina's Center of Excellence for Eating Disorders. I'm also a National Institute of Mental Health grantee. We're in the middle of national eating disorders awareness week. The goal of this observance is to focus on eating disorders by educating the public, spreading a message of hope, and putting life-saving resources and information into the hands of those in need. Eating disorders are serious and often fatal illnesses associated with severe disturbances in people's eating behaviors and related thoughts and emotions. Common eating disorders include anorexia nervosa, bulimia nervosa, and binge eating disorder.

Cynthia Bulik: During the next half hour, I'll discuss signs, symptoms, treatments, and the latest research on eating disorders. In addition, I'll discuss some of the challenges that the coronavirus pandemic has presented for individuals living with eating disorders. And if there's still some time at the end, I'll take a few of your questions from the comments. It's important to note that I cannot provide specific medical advice or referrals. Please consult with a qualified health care provider for diagnosis, treatment, and answers to your personal questions. If you need help finding a provider, please visit www.nimh.nih.gov/findhelp. If you or someone you know is in crisis, please call the National Suicide Prevention Lifeline at 1-800-273-TALK or 8255. You can also ask for help in the comments section of this feed and someone from NIMH will assist you. All of the websites and phone numbers that I just mentioned will also be posted in the comments section of this feed so that you can easily access them.

Cynthia Bulik: First I'll begin by talking about signs and symptoms of anorexia nervosa. People with anorexia nervosa may see themselves as overweight even when they're dangerously underweight. People with anorexia nervosa severely restrict the amount of food that they eat, often exercise excessively, and may self-induce vomiting or use laxatives to lose weight. They may weigh themselves frequently and engage in body checking to see if they've gained weight. Anorexia nervosa has one of the highest mortality rates of any mental disorder. Many people with this illness die from complications associated with starvation, and others die from suicide.

Cynthia Bulik: Symptoms of anorexia nervosa include extremely restricted eating, very low body weight, a relentless pursuit of thinness, and unwillingness or inability to maintain a normal or healthy weight. They have an intense fear of gaining weight or engage in behaviors that interfere with weight gain even when they're at very low body weights. They may have a distorted body image, which means seeing themselves as larger than they actually are, or they may engage in behaviors that interfere with weight gain even though they're at a low weight. People with anorexia find that their self-esteem is heavily influenced by perceptions of bodyweight and shape, and they may not be able to recognize the seriousness of their low body weight. You may also have heard of atypical anorexia nervosa, which is when someone has all of the features of anorexia nervosa, but despite considerable weight loss, they're still within or above the normal weight range.

Cynthia Bulik: A second type of eating disorder is bulimia nervosa. People with bulimia nervosa have recurrent and frequent episodes of eating an unusually large amount of food and feeling a lack of control over these episodes. The binge eating is usually followed by behavior that compensates for overeating, such as self-induced vomiting, use of laxatives or diuretics, otherwise known as water pills, fasting, excessive exercise, or a combination of all of these behaviors. People with bulimia nervosa may be slightly underweight, normal weight, or overweight. Symptoms of bulimia nervosa include swollen salivary glands in the neck and the jaw area, acid reflux disorder and other gastrointestinal problems, worn tooth enamel, and increasingly sensitive or decaying teeth as a result of exposure to stomach acid. They can have a chronically sore and inflamed throat. They can have intestinal distress and irritation from laxative abuse. They could also have severe dehydration from purging. And they could have electrolyte imbalances, including sodium, calcium, potassium, and other minerals, and this can be quite dangerous and can lead to a heart attack and stroke.

Cynthia Bulik: And then lastly, we'll talk about binge eating disorder, which is sometimes referred to as BED. Binge eating disorder is also associated with binge eating, but unlike bulimia nervosa, the binge episodes are not followed by purging, excessive exercise, or fasting. Many people with BED fall into higher weight categories, but they can also be in the normal weight range. BED is actually the most common eating disorder in the United States. Symptoms of binge eating disorder include eating unusually large amount of food in a discrete period of time, such as within a two-hour period, eating even when you're full or when you're not hungry, eating rapidly during binges, eating until you're uncomfortably full, often eating alone or in secret to avoid embarrassment, feeling depressed, ashamed, or guilty after binge eating, and also in general just feeling distressed about your binge eating.

Cynthia Bulik: Importantly, eating disorders can affect people of all ages, racial and ethnic backgrounds, body weights, and genders. Eating disorders frequently appear during the teen years or in young adulthood, but they can develop at any point during childhood or even much later in life. These disorders affect all genders, although they tend to be more common in women. Some studies suggest that people in the LGBTQ community might be at increased risk for eating disorders. Researchers like me are finding that eating disorders are caused by a complex interplay of genetic, biological, behavioral, psychological, and social factors. We're using the latest technology and the latest science to better understand the causes of eating disorders.

Cynthia Bulik: One approach involves the study of human genes. We know that eating disorders run in families, and twin studies have told us that the reason they run in families is because of genes. But now we're working to identify DNA variants that are associated with increased risk of developing eating disorders. As founder and co-chair of the Eating Disorders Working Group of the Psychiatric Genomics Consortium, I lead a global effort to identify actionable genomic variation in eating disorders. A recent genome-wide association study funded by the Klarman Family Foundation and in part by NIMH suggest that metabolic processes may play an important role in the disorder and offers a promising new avenue of investigation to understand causes of anorexia. To understand factors that contribute to anorexia, an interdisciplinary team of researchers, led by me, combined genetic data from two resources. First was the Anorexia Nervosa Genetics Initiative, or ANGI, and the second is the PGCED, or the Psychiatric Genomics Consortium Eating Disorders working group. The resulting dataset included almost 17,000 individuals who had anorexia nervosa at any point in their life and 55,000 controls. And that dataset allowed us to conduct a genome-wide association study in which we scanned the entire genome to look for genetic variations that were more common in people with anorexia nervosa than in people without anorexia nervosa.

Cynthia Bulik: Now, everyone has basic variations in the building blocks of their DNA that are called single-nucleotide polymorphisms, or SNPs for short. Researchers can examine these SNPs to identify areas of the genome that we call loci that are associated with different traits. Then linking loci to the specific genes that underlie a trait is not always a straightforward process as these loci can span large regions of the genome that include many genes that have different functions. However, those loci provide important clues about the genes and biological pathways that are likely to contribute to a disorder like anorexia nervosa. In this study, we identified eight loci that varied between this large sample of people with anorexia nervosa and people without an eating disorder. And we found that the genetic basis of anorexia overlapped with a variety of other traits, including certain psychiatric diagnoses, physical characteristic, and metabolic indicators. For example, we found that anorexia nervosa was correlated on a genetic level with mental disorders such as obsessive-compulsive disorder, major depressive disorder, anxiety disorders, and schizophrenia. These genetic correlations mirror findings from clinical and epidemiological studies which have shown that people with anorexia are more likely to have anxiety, depression, and other psychiatric disorders compared with the general population.

Cynthia Bulik: Now, intriguingly, the genetic basis of anorexia nervosa also overlaps with factors associated with metabolic traits such as insulin resistance, fasting insulin, and type 2 diabetes. For example, some of the same genetic factors that are associated with decreased risk of developing type 2 diabetes are associated with increased risk for anorexia nervosa. So together, these links suggest that genetic variations that are associated with anorexia nervosa may also influence some of the chemical and biological processes in the body that are essential for life. People with anorexia nervosa often have considerable difficulty maintaining healthy body weight even when they're receiving carefully calibrated nourishment as part of their treatment plan. And these disruptions to metabolism that we identified in this study may help explain why. The findings from this study suggest to us that both metabolic and psychological processes are important factors to consider when we're studying, developing, and implementing treatments for this serious disorder.

Cynthia Bulik: Encouraged by these findings, we're expanding this line of research. I'm currently the principal investigator of the global Eating Disorders Genetics Initiative, or EDGI, which is funded by the National Institute of Mental Health and is the largest genetic investigations of eating disorders ever undertaken. EDGI is going beyond ANGI to also study the genetic influence on not just anorexia nervosa but also bulimia nervosa and binge eating disorder. You can learn more about EDGI and other current studies on eating disorders by visiting NIMH's website which will be shared below in the comments.

Cynthia Bulik: Now, turning to some other ongoing studies, more than 18% of people with binge eating disorder and more than 43% of people with bulimia nervosa report severe impairment as a result of their illness. Now, despite the seriousness of these disorders, only 43% of individuals actually seek treatment, and even fewer receive treatment. These findings highlight the need for scalable, accessible, and personalized treatment options for people with these illnesses. Although treatments for eating disorders such as cognitive behavioral therapy work for many people, they don't work for everyone, and they don't allow for intervention in real-time, often requiring people to wait for a scheduled appointment to speak with a clinician. In addition, many people in this country don't have easy access to a clinician who can provide evidence-based treatment for eating disorders. So having the ability to predict binge and purge episodes and intervene in real-time would support the development and scalability of treatments for binge eating disorder and bulimia nervosa.

Cynthia Bulik: In another study funded by the National Institute of Mental Health, my research team and I are using an app called Recovery Record which has been adapted for use on a smartwatch to collect a massive amount of clinical, physiological, and behavioral information from people who have agreed to have their data recorded. Our plan is to aggregate those data to predict in real-time when a binge or purge episode is likely to occur. Then we'll be able to signal people and encourage them to use their tools and strategies to avoid engaging in disordered eating behavior. And right now, researchers and clinicians don't have the ability to predict binge and purge episodes with any level of reliability. If this NIMH-supported project is successful, it has the potential to lay the foundation for developing large-scale real-time treatment and prevention efforts in the area of eating disorders.

Cynthia Bulik: Next, I'm going to talk a little bit about treatments and therapies for the eating disorders. It's very important to seek treatment early for eating disorders. People with eating disorders often have other mental disorders such as depression, or anxiety, or problems with substance use. Importantly, complete recovery from eating disorders is possible. Treatment plans are tailored to individual needs and may include one or more of the following: individual, couple, or group psychotherapy, family-based treatment, medical care and medical monitoring, nutritional counseling, and also medication. Psychotherapies such as family-based treatment, or commonly known FBT, where parents of children and adolescents with anorexia or bulimia nervosa assume responsibility for feeding their children appear to be very effective in helping young people gain weight and improve their eating habits and their [inaudible]. The NIMH has also funded us to develop a series of couple-based treatments for adults with eating disorders. We call them UNITE, or Uniting Couples in the Treatment of Eating Disorders. UNITE enlists partners to be active allies in recovery. Both FBT and UNITE treatments show how family members can be our best allies in the treatment of eating disorders.

Cynthia Bulik: Other forms of psychotherapy have also been found to be helpful in the treatment of eating disorders, including cognitive behavioral therapy, which helps a person learn how to identify distorted or unhelpful thinking patterns and recognize and change inaccurate beliefs, and interpersonal psychotherapy that focusing on the role of interpersonal relationships in recovery from eating disorders. Medications can also play a role in the treatment of eating disorders. Evidence suggests that medications such as antidepressants, antipsychotics, or mood-stabilizers might also be helpful for treating eating disorders and other co-occurring illnesses such as anxiety or depression. You can check the Food and Drug Administration or the FDA's website for the latest information on warnings, patient medication guides, or newly approved medications.

Cynthia Bulik: And finally, I want to talk a little bit about how COVID-19 has influenced people who are currently living with eating disorders. People with eating disorders are really struggling during the pandemic. Those who are alone are struggling with a lack of support and are saying that they find themselves swirling around in negative thoughts. Many are also finding it hard to stay motivated to recover. On the other hand, some who are working toward recovery that are living in close quarters with other people are having trouble finding privacy to do things, for example, like have private telehealth sessions with their clinicians. My research team at UNC, together with the National Center of Excellence for Eating Disorders, which is also at UNC, and colleagues in the Netherlands surveyed approximately 1,000 participants who joined a study in April and May of 2020, so early in the lockdowns. We found that studied participants in the United States with anorexia nervosa were reporting increased dietary restriction and fears about not being able to find foods that were consistent with their meal plan. At the same time, people with bulimia and binge eating disorder reported increases in binge-eating episodes and increased urges to binge. Respondents also noted an increase in anxiety levels since 2019 and fears that their eating disorder would worsen due to a lack of structure and a lack of social support. People also highlighted concerns about living in a triggering environment during the pandemic.

Cynthia Bulik: We know that eating disorders thrive in isolation, and having social support can deter individuals with eating disorders from engaging in health-damaging behaviors, like excessive exercise, restriction, or purging. When you're alone, like during the pandemic, there are no social deterrents, so the eating disorder can escalate unchecked. That is why reaching out and staying connected is so important even if it is virtually, especially as the pandemic continues to drag on.

Cynthia Bulik: We also found that over 80% of US study participants who were already in eating disorders treatment before COVID-19 reported having transitioned to telehealth services. Fortunately - and we followed these people up monthly since the beginning of the study - satisfaction with telehealth has increased as the pandemic has dragged on, and we have all become more creative and comfortable with using that modality. But troublingly, 47% of US participants reported not being in any treatment for their eating disorder. We're hoping that the wide availability of telehealth options will remain long after the pandemic is in our rearview mirror so that we will continue to be able to deliver evidence-based treatment to people with eating disorders in all corners of the country. We hope the preliminary data that we're sharing now and additional data collected in this year-long study will inform best practices for clinicians and caregivers and provide a roadmap for eating disorders care. From this work that we've done, we've created information sheets to help individuals with lived experience, their family members, and their clinicians deal with eating disorders during the pandemic. These sheets can be found on the website of the National Center of Excellence for Eating Disorders at NCEED, N-C-E-E-D-U-S dot org.

Cynthia Bulik: Now, we have a couple minutes for questions which I will take from the comments, and I will start with the one that is-- the first question is, "Why isn't obesity added as an eating disorder?" That's an excellent question, and when the DSM-5 was created back in 2013, there was a lot of discussion about whether obesity should be an eating disorder. But interestingly, what we can see - and I'm going to go back to our genetics study, which is quite intriguing - is that in some ways, anorexia nervosa, the same genes that influence obesity also influence anorexia nervosa but in the opposite direction. So we know that there's a relationship between weight regulation and appetite regulation, but obesity itself is a heterogeneous condition. And when we're looking at anorexia nervosa, bulimia nervosa, and binge eating disorder, importantly, those disorders occur across the weight spectrum. And I think one of the take-home messages that I really want people to think about today is that eating disorders occur in all body weights. There have been so many myths around that eating disorders only-- you can see them because people are underweight. That is not the case. Eating disorders do not discriminate in terms of body weight, body shape, body size, or really any other demographic factor.

Cynthia Bulik: A couple other questions that are popping up in here are whether bulimia and purging are related to thyroid issues. That has actually not been a consistent finding, but anyone who has concerns, especially, for example, if you have a family history of thyroid disease, you should always get that checked out by your general practitioner, your family physician, because one of the things that we really like to recommend for people who are in treatment for any of the eating disorders is that they are monitored carefully by a physician along with their mental health care providers.

Cynthia Bulik: Another question that just popped up is how about other neuropsychological disorders like PANDAS? Now, this is really interesting because I think we've seen-- and this is basically when a psychiatric illness like autism obsessive-compulsive disorder, eating disorders might pop up after exposure to strep, for example. We have seen this in a subset of people with anorexia nervosa, but again, it's just a subset. And I think another thing that I'm going to hammer home - and this is what we hope some of our genetic research will lead to - is that even these three disorders that we talked about today - and by the way, they're not the only eating disorders - we even think that we're going to be able to find subgroups within anorexia, within bulimia, and within binge eating disorder that are identifiable genetically that might help us unpack the heterogeneity within each of the disorders. And right now, we're using a one-size-fits-all approach to treat these eating disorders, and one of the goals of this genetic research is to move away from one-size-fits-all and to use the genetic information to help parse out different subtypes, different origins or causes so that we can actually tailor interventions to the underlying biology of a particular individual's eating disorder.

Cynthia Bulik: And now we're going to-- we're reaching the end of our time, so we're going to wrap up with some closing remarks. And we've reached the end of our discussion today on eating disorders. I thank you so much for your attention, and for your questions, and for joining me today. And if there are other questions that I didn't get to, please feel free to put them in the comments, and we'll try to get to them afterwards and make sure that those answers are posted. So please learn more about eating disorders by visiting the following website, www.nimh.nih.gov/eatingdisorders with no space between eating and disorders. I thank you all so much for your attention today, and I hope that you all stay well.