RICK WEISS: Hello everyone and welcome to SciLine’s media briefing on eating disorders in the United States, addressing a prevalent but largely hidden health challenge that we felt is disserving of some compassionate science-based coverage, especially with this being National Eating Disorders Awareness Week. I’m SciLine’s Director, Rick Weiss, and for those of you who are not familiar with SciLine, we are a philanthropically funded, editorially independent, free service for journalists and scientists based at the nonprofit American Association for the Advancement of Science. Our mission is simply to make it easier for reporters like you to get more scientifically validated evidence into your stories, and that means not just stories that are about science, but really any story that can be strengthened with some science, with some research backed evidence, which—as you’ve heard me say many times before—is just about any story we can think of. Among other things, we offer a free matching service that helps connect you to scientists who are both deeply knowledgeable in their fields and are excellent communicators. We do that for you on deadline for free. Just go to SciLine.org and click on “I need an expert” and check out our other helpful reporting resources there.
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All right. I’m not going to give full introductions to our speakers. Let’s save the time for this briefing. I’ll just say that we will hear first from Dr. Cheri Levinson. Cheri is an associate professor at the University of Louisville and director of the Eating Anxiety Treatment Lab and Clinic there. She’s going to give us an overview of eating disorders, including a basic description of different kinds of disordered eating and their prevalence and how all this relates to other health conditions. We’re going to hear second from Dr. Jason Nagata, an assistant professor of Pediatrics at the University of California San Francisco, and he’s going to focus on some of the more underdiagnosed populations of people with disordered eating, including men and boys, and how symptoms can manifest differently in different populations. Third and last, we’ll hear from Jean Doak. Dr. Jean Doak is a professor at University of North Carolina Chapel Hill, clinical director of UNC Center for Excellence for Eating Disorders, and she’s going to speak about treatment options and the factors that influence their efficacy, including elements that affect access to treatment. So, let’s get started and it’s over to you, Dr. Levinson.
An overview of eating disorders
CHERI LEVINSON: Hi. Thank you for having me. So, I am Dr. Cheri Levinson, founder of the Louisville Center for Eating Disorders and associate professor at University of Louisville and Director of the Eating Anxiety Treatment Lab. I’m just briefly going to go over the common types of eating disorders. So, the eating disorder that you’ve probably heard the most about is anorexia nervosa, and this is a type of eating disorder where there is a lot of food restriction and significantly low body weight, and accompanied by a severe fear of weight gain. You’ve likely also heard of bulimia nervosa, which is recurrent episodes of binge eating followed by compensatory behaviors. These compensatory behaviors can be things like purging, laxative use, it can be excessive exercise in response to the binge eating episode. Binge eating disorder is one of the newer eating disorders, though highly prevalent, and it consists of eating large amounts of food in a short amount of time, but without the compensatory episodes. And, then last, we have other specified feeding or eating disorders, which is essentially any other type of eating disorder that doesn’t fall into either anorexia, bulimia or binge eating disorder. And, OSFED is actually the most common type of eating disorder. Prevalence rates are around 10 percent, and it is as impairing and harmful as the three major subtypes of eating disorders.
So, there are giant physical risks of eating disorders. First, I just want to mention that there is a heightened risk of death. So, we know that somebody dies from an eating disorder every 52 minutes, so somebody will die while we are here doing this news briefing. In addition to risk of death, there are many complications across all of the systems in the body. So: heart health; bone and hormone impacts; we’ll see lots of osteoporosis and osteopenia, sometimes in adolescents when we just really shouldn’t be seeing any of this; gastrointestinal problems; metabolic changes; and, of course, impacts on the brain that come along with starvation and irregular eating. The way that I like to explain it is that no matter what type of eating disorder, there is disordered eating and irregular eating, and when you think about it, for our bodies to have optimal functioning, we have to be eating regularly and feeding ourselves. That’s how we get energy. And, when you start to mess with that system, your entire body starts to respond with physical and medical complications.
So, I was also asked to explain a little bit about the difference between disordered eating and clinical eating disorders, and what I want to say is that eating disorders and disordered eating exist on a continuum. So, it’s really kind of a gray area between what is disordered eating and what is a clinical eating disorder. When we’re talking about disordered eating, we’re talking about any of these behaviors and thoughts that come along with clinical eating disorders, so, things like skipping meals, counting calories, having really extreme obsessions about food, lots and lots of body dissatisfaction, over evaluation and focus on weight and shape, and those compensatory behaviors that I talked about. One other thing that’s really important to keep in mind is that disordered eating is highly prevalent. Some estimates put it around 40 percent of the population engage in disordered eating. And, disordered eating is just as impairing as clinical eating disorders. It also has many of those medical and physical complications that I talked about. We also want to be really clear that somebody that has an eating disorder does not have an eating disorder alone. So, really about 99 percent of people with an eating disorder also have a co-occurring psychological illness. Most often we see people with anxiety disorders, mood disorders, post traumatic stress disorder, and obsessive-compulsive disorder. And, so when you’re treating an eating disorder, you really are treating not just an eating disorder, but also all of the co-occurring psychological issues that come along with an eating disorder. And then, just another note here that death by suicide is significantly more prevalent in eating disorder populations compared to the general population. So, in addition to all of these comorbidities, there’s also an increased risk for death by suicide.
And, then last, I just wanted to talk a little bit about the role of media in eating disorders and weight stigma. So, one thing that we know that has really contributed to the rise in eating disorders in our society is that there is a lot of anti-fat bias and weight stigma, and really an emphasis on trying to be thin that perpetuates these stereotypes of eating disorders. And, we do also know that 90 percent of people with an eating disorder are actually either normal weight, overweight, or in the obese category. So, people of all body sizes get eating disorders. And so, I think the media has a really important role here. So, instead of doing things like focusing on diets or weight loss challenges or commenting on people’s body sizes or shapes, instead talking about bodies in neutral terms, and also thinking about all of the really cool things that bodies can do for us. They let us hug our family members, they let us pet our pets, they take us on walks, they breathe for us and keep us alive. So, all of these things we really as a society should be focusing on instead of what somebody’s body size is or making value judgments on people’s appearance. And, then I have some resources that I think will get sent out, and that is it for me.
RICK WEISS: Thank you, Dr. Levinson. That was a fantastic overview and really important points at the end there, that this is about more than just physical and mental health. It’s about language, it’s about thoughts, it’s about how we think about each other and our bodies. Let’s move onto Dr. Nagata next.
Eating disorders in diverse populations
JASON NAGATA: Thank you so much. I’m just pulling up my slides. So, eating disorders can affect people of all genders, sexual orientations, races, and ethnicities—but this diversity is often overlooked by the media and due to stereotypes. Similar to what Dr. Levinson just mentioned, almost 30 million Americans will have an eating disorder at some point in their lifetime and that equates to about 9 percent of females and 4 percent of males. And, in the past year, 2.6 percent of females and nearly 1 percent of males will have experienced an eating disorder. However, eating disorders are often underrecognized and underdiagnosed in diverse populations, and today I want to highlight special considerations for eating disorders, particularly in boys and men, LGBTQ populations, and racial and ethnic minorities.
So, in terms of eating disorders in boys and men, most eating disorder and body image research has focused on thinness and weight loss, particularly in females. However, we know that the masculine body ideal has become increasingly large and muscular. And, in fact, a third of teenage boys across the U.S. report that they’re trying to gain weight or bulk up and this equates to about 22 percent of young men who engage in some form of muscle building behavior in order to achieve this. But the traditional questions that we ask in terms of screening or assessment for eating disorders—like fasting or skipping meals, severe restriction of food intake, vomiting, laxatives, and diuretics, or the other behaviors that Dr. Levinson just mentioned—are all mostly based on the comments that people want to become thin and lose weight. However, so many men who are trying to gain muscle will engage in muscle building behaviors such as protein over consumption while restricting their carbs and fats or muscle building drugs and supplements like anabolic steroids, androstenedione or creatine, as well as excessive or compulsive exercise. While engaging in muscle building behaviors alone may not necessarily constitute an eating disorder, it may put young people at risk for one. And, one recent diagnosis that may capture this phenomenon is muscle dysmorphia, also known as bigorexia or reverse anorexia. Muscle dysmorphia is characterized by a preoccupation or obsession with insufficient muscularity, though in many cases, the individuals build is objectively normal or even muscular. However, muscle dysmorphia’s official classification is a subtype of body dysmorphic disorder may contribute to the under recognition of muscularity concerns in people with eating disorders.
So, to summarize, why are eating disorders underrecognized in boys and men? First, it may be related to the gender stereotypes that eating disorders are a feminine disease, and even reflect on the diagnostic criteria like prior medical guidelines and psychological guidelines required that loss of periods be a requirement for anorexia nervosa, and a lot of the questions that we ask are focused on thinness or weight loss and often don’t screen for excessive exercise or muscle building behaviors. And, while people with eating disorders experience immense stigma disclosing their struggles, men may experience a double stigma given the feminized associations with the illness.
In terms of LGBTQ+ populations, we know that in general in society, these are really marginalized populations who can experience stigma, discrimination, and have significant barriers to healthcare overall. And so, they are already significant barriers to general healthcare which could lead to underdiagnosis. And, then I also wanted to mentione that—particularly in transgender youth and young people—there may be additional distress secondary to gender norms. As we mentioned, there are really significant masculine norms for muscularity versus feminine norms for thinness, and one’s sex assignment at birth is mismatched with one’s gender identity that can exacerbate some of the struggles with these gendered norms in society. Also, I wanted to mention that there are reasons for weight loss goals and behaviors in both transgender men who were assigned female sex at birth who may use that to try to suppress menses, as well as transgender women who were assigned male sex at birth due to body image and gender norms ideals. Overall, eating disorder diagnoses are quite elevated, particularly in transgender populations, including non-binary people, transgender men and transgender women, but this is really an area that is in need of much more research.
Finally, eating disorders are also underrecognized in racial and ethnic minority populations and may also be secondary to discrimination and racism which can lead to stressors and body dissatisfaction. There are also significant barriers to care—and particularly mental healthcare services—for people of color, and for those who’ve experienced immigration, there may be additional culturation stress and enculturating to the U.S. culture, and there are also diverse cultural attitudes towards eating, weight and body image which may present differently and may also lead to underrecognition by healthcare providers.
So, just to summarize, if you only take home two points from this, I think it’s important to realize that eating disorders can affect people of all genders, sexual orientations, races and ethnicities, and so therefore, it’s important for the media to represent this diversity when they cover eating disorders. And, here are some references that will also be available afterwards. Thank you.
RICK WEISS: Fantastic. Thank you, Dr. Nagata for really opening the aperture there—this is a much bigger and more complicated story than maybe a lot of people presume. And, we’ll move now to our third speaker, Dr. Jean Doak.
Eating disorder treatment options and efficacy
JEAN DOAK: Pulling up my slides as well. OK. So, what I’m going to touch on—and I hopefully will not repeat what’s already been described before—is just eating disorder treatment options and efficacy. And, in general, I’m going to review these topic areas: so, the types of treatment and levels of care available; populations seeking treatment, or more specifically populations served, because there is a difference; and accessibility and efficacy of treatment.
So, in general when I talk about treatment, I describe overarching goals for treatment and often times, it really starts out with a priority of medical stabilization. Eating disorders can be an acute illness and an have some significant medical complications as Dr. Levinson indicated. We also target behavioral stabilization and symptom interruption. Those are three very broad categories in which there are goals to find for treatment. And, in general, and I’m not going to go into great detail about the types of therapies that are offered, but as clinicians, some of the things that we think about with regard to the therapies that are offered are first line therapies and those are evidence based. So, as an example, for adolescents who are diagnosed with anorexia, the first line treatment would be something called family based treatment, or FBT, and that involves getting the family together to start the refeeding process for their child. Whereas for adolescents, I mean, for adults perhaps diagnosed with binge eating disorder, the front line or first line treatment would be cognitive behavioral therapy for eating disorders. And, in that regard, the initial goal is to return or learn how to incorporate regular eating patterns. And so, again, I’m not going to go into great detail about that and I do have some references where individuals can find out more information about those treatments.
In addition to the types of treatments, there are various levels of care, and this print is small. There’s a lot of information, but that’s not the essential information I want you to get out of this. What I want you to get out of this is that there is a continuum of levels of care starting from the lowest level of care, which is outpatient. That’s that blue column. And, outpatient traditionally is about one time a week, maybe one hour with each provider that they might be seeing. And, this moves progressively up in intensity to the highest level of care, which is inpatient. And, inpatient is the red column and that is 24/7 care for an extended period of time. In between those extreme levels of care would be intensive outpatient, which constitutes maybe three to five hours a day a couple days a week, the next one is partial hospitalization, which is several more hours a day, many more days a week, and then residential, which is often – which is also 24 hours a day 7 days a week, but doesn’t have the same medical acuity or monitoring that the inpatient does.
And, then as far as population served or those seeking treatment, one of the things that we know often is that patients typically don’t self-refer. As Dr. Levinson indicated and Dr. Nagata indicated, eating disorders can present with a great deal of shame, stigma and guilt, and sometimes individuals don’t even know that they may be struggling with an eating disorder, so that’s important for clinicians and most everyone else to be aware of. Those who do present for treatment of an eating disorder sometimes are those who have families who identify some significant behavioral changes or have noticed something significantly shifting within their child or adolescent or young adult. Patients—what we do see more often—present for the medical consequences related to their eating disorder. Sometimes they describe feeling dizzy or lightheaded, sometimes individuals present with weight loss, weight gain, or just weight fluctuations. Often times, individuals can even present with some feelings of a loss of control over eating and not understanding why or how it’s going on.
And, then accessibility and efficacy for treatment, what we do find that improves prognosis to treatment is early identification, and in addition to early identification, early treatment: receiving the full course of treatment, access and engagement in multidisciplinary evidence-based treatment, insurance coverage for all eating disorders at all levels of care, and then having a support network, which could include family, social network or recovery support network. And, what we do find—and this is one of the reasons why it’s critically important that these protective factors are improved—is that recent research has indicated that only about 20 to 50 percent of individuals with an eating disorder ever received treatment, and that means a significant amount of individuals do not receive any identification or treatment related to their eating disorders.
What impacts prognosis—so often times what we see are barriers to care, and these lead to poorer prognosis and treatment—are missed opportunities or delayed screening. And, as Dr. Levinson and Dr. Nagata indicated, there are many individuals who don’t look like the stereotypical individual who might present with an eating disorder. And, often times, practitioners, clinicians of all types, may think there’s no need to screen that individual for an eating disorder, don’t even think to screen that individual for an eating disorder, don’t know how to screen that individual who has an eating disorder. And, then there are also missed opportunities or delayed referrals to treatment. Again, as I mentioned in the previous slide, one of the better prognosis opportunities is earlier access to treatment. Lack of access to all levels of care. Some of us live in areas of the country or some areas of a state that have all access to all levels of care. The majority of Americans in the U.S. do not and that’s a significant deficit in our treatment care landscape. Lack of evidence based treatment, accessibility, those who are under insured or have a lack of insurance coverage for either specific eating disorders or levels of care, premature discharge from treatment, whether it’s by the patient themselves, but more often it’s usually by insurance determining that they are well enough to discontinue treatment, stigma misinformation about eating disorders, and then impact of diet culture and weight bias.
These are my references. As I mentioned earlier, everything that’s mentioned on all the slides is referenced here. I just want to have a highlight of two resources. One is that for individuals who are looking for treatment options in their area can access the National Alliance for Eating Disorders. They have a link there where individuals can filter out information around eating disordered treatment options, and then the National Center of Excellence for Eating Disorders has a whole host of resources that are evidence based.
What is being done well in press coverage of these issues, and where is there room for improvement?
RICK WEISS: Thank you Dr. Doak. Some shocking statistics there about the low level of treatment for something that is so wide spread in society and has such serious medical implications, so really worthy of the kind of attention we’re giving it today. I appreciate that. OK. We’re going to go into the Q&A now. I’ll remind reporters you can go to the Q&A icon at the bottom of your screen and insert your question there, but we like to start these briefings with one question from the moderator and I’ll ask that of each of the three to get us started, and that is, if you could just direct something to the reporters themselves who are attending and talk about from your vantage point as a news consumer what have you seen that you think actually reporters in general are doing well with regard to covering this field, or maybe not so well and maybe could use some attention and some improvement. And, why don’t I go through the three of you to answer that question. First, I’ll start with you, Cheri.
CHERI LEVINSON: Yeah, I think that’s a great question. I’ve been thinking about it. I think that there’s been a lot more attention lately in the news on atypical anorexia nervosa, which is essentially anorexia but without the low weight criteria, and research shows that there are really very few differences between anorexia nervosa and atypical AN. I’ve seen quite a few articles recently on atypical AN and I think that’s really raising awareness on the point that eating disorders come in all shapes and sizes and that the stereotypes that maybe we traditionally think of as eating disorders are not really very accurate. So, I think that that there’s been huge improvement in just the type of coverage that’s happening. In terms of things that I think that the media can improve, I think a lot of it is very similar to what they’re doing well now, which is that I think there still needs to be much more size diversity portrayed in the media. When it comes to eating disorders—but really everything that’s out there—I was actually like doing this project with my 6 year old and we were looking for media images and we found all of these great images of people with different ethnicities, with different sexual orientations, and every single person that we found was thin. We couldn’t find anybody in larger bodies. And, I just think about the message that that’s sending our kids and adolescents that people are supposed to be thin and that we’re all supposed to have these thin bodies, and that’s just not reality. Bodies are supposed to have the same type of variation and the same type of diversity that we see in really all human characteristics. And so, I think that the more media can portray images of all shapes and sizes and especially getting that message across that eating disorders are not just something that happens to thin people. I think that’s something that could really be improved upon.
RICK WEISS: Fantastic. Thank you. Jason.
JASON NAGATA: Yeah, just building upon that, I think that one of the really important things is to really demonstrate the diversity across people with eating disorders. And so, in addition to size diversity, I do think that recognizing that eating disorders can affect boys and men and that some of those presentations may not be what the classic or stereotypical eating disorder looks like. Boys and men may have really significant muscularity concerns that can still lead to very significant medical and mental health consequences. And so, I think just making sure that in the stories that you’re telling, the people you’re interviewing, you try to include that diversity in all areas in terms of gender, sexual orientation, race, ethnicity, class or socioeconomic status, size and even age.
RICK WEISS: Thank you. And, Jean.
JEAN DOAK: Yes. I’ll start off with things that the media are doing really well right now, and I will say that over the last 20 plus years or so, there’s been a significant increase in just talking about eating disorders and presenting information on eating disorders, and not just seeking that information when a celebrity is identified as having an eating disorder. So, I will say although it’s been slow, it has been greatly improved over the last couple of decades, so I am very hopeful for the forthcoming decades that we’ll continue to improve in that regard. I think relatively, areas of improvement are probably continued or decreased glamorization of eating disorders. I think it presents such an easy opportunity to glamorize it. I think many people have a stigmatized view or stereotypical view that there are only benefits with an eating disorder, and as we discussed today, there’s so many significant negative consequences, really, really acute medical consequences in sequela that can come with an eating disorder and that’s really serious. And, I think the seriousness of eating disorders often gets overshadowed by the glamorization of eating disorders. So, I think that would probably be one area that I think would be an opportunity for improvement.
Why are inpatient or residential care programs important for people with eating disorders? Which states have them?
RICK WEISS: Yeah. It seems like so many movies today take advantage of this just as a plot line for some reason and belittles it really in a way, so great, great to bring attention to. Okay. Let’s get into some questions coming in from our reporters. And, this one, actually might be most relevant to you Jean since you mentioned treatment facilities. This is from Darby Beane from WDRB News in Louisville, actually. What states have freestanding residential care programs to help people who struggle with eating disorders, why are these important to have for patients, and do you believe these should be available in all states?
JEAN DOAK: That is a pretty amazing question. First and foremost, I will say that I think all levels of care should be available in every single state in the country. That is not the reality. And so, I would be hard pressed to identify the states who do have that, but I think if you click on the link that is on my references and resource slide where it lists the National Alliance for Eating Disorders, it is a not for pay play website, which means that identified eating disorder facilities and institutions don’t have to pay to be listed on this treatment seeking link. Individuals can go to that link and select states or can select levels of care and be provided with a listing of what treatment facilities are available in their area.
RICK WEISS: Great. Cheri, anything for your hometown reporter?
CHERI LEVINSON: Yeah. Hi WDRB, glad you’re here. So, just to follow up on that, I actually saw this nice graphic at a conference recently which I wish I still had that showed the concentrations of treatment centers. And, unsurprisingly, most of them are on the east coast, the west coast, and then Colorado. And so, when you’re looking at rural states like Kentucky, out west and Wyoming, places like that, there is really a huge lack of access to treatment care. So, at least in Louisville in Kentucky, our closest residential center is really like three hours away and further if you’re further out in the state. And, what I’ll add to that is that the problem is parity issues. So, insurance providers—so, I run the only personal hospital intensive outpatient program in the state of Kentucky and it took us four, five years to be able to get coverage and open our partial hospital program because of parity violations, essentially, where health insurance companies will not cover programs at a sustainable rate. And so, that leads to this huge lack of access. And, I think another thing that’s really important to think about and then I’ll stop blabbering, is that most of the treatment centers out there are private. And, so example in Kentucky, there is no facility in the entire United States right now that will take Kentucky Medicaid. And so, if you have state insurance or you don’t have commercial insurance and you have an eating disorder, it is very, very, very difficult to get residential or inpatient treatment.
RICK WEISS: Interesting.
JASON NAGATA: And, I’ll just add, from the perspective of boys and men is that many programs unfortunately actually don’t even accept boys and men, and so it can be really challenging for these populations or transgender youth to get care. And, even the programs that do accept them, sometimes they may be the only participant who’s a boy or man and then they can feel more isolated if they can’t relate to some of the certain behaviors, other issues that other people are experiencing. So, I do think that’s a big barrier, particularly for diverse populations.
What are some warning signs of eating disorders in athletes?
RICK WEISS: Great answers. We have a question here from Donna Raskin who is a health and fitness editor at Hearst Publications. We are interested in how to recognize eating disorders in athletes, both in yourself and in others, and in particular, the obsession with numbers and metrics that’s often involved, such as obsessing over weighing yourself or being weighed or counting calories. Obviously, an athletic second span, the whole gender spectrum, but I’ll start with you, Jason. Maybe this sounds relative to some of the topics you were touching on.
JASON NAGATA: Yeah, I think definitely athletes can be at higher risk of eating disorders, and so I think it’s especially important to get education for coaches and teachers to really know warning signs of eating disorders. And, particularly sports that have weight cutoffs like wrestling or crew. A lot of the disordered eating behaviors that Cheri mentioned are basically normalized in these settings because people actively are engaging in these behaviors to make certain cutoffs. And, I will say that there was – there is a phenomenon called the female athlete triad, which the three points are disordered eating, loss of periods, and low bone density, which is recognized, and I think everyone should really be aware of. And, because, again, this is in evidence of sort of the feminization of this—it was traditionally called the female athlete triad, but boys can also be affected by this too, so now it’s been renamed to relative energy deficiency in sports or RED-S, and I think that just really shows, especially people who are working out a lot. Some of the patients that I care for with muscle dysmorphia or eating disorders who present with excessive exercise will exercise for five to ten hours a day. So, even in the absence—even if you’re eating a “normal” diet for a teen, like a 2000 calorie diet, if you’re exercising that much—you can still have these huge energy deficits that can lead to the same medical complications that have been mentioned earlier, and I think that’s another reason why eating disorders may be missed in athletes is because it may appear to anyone that they’re eating a normal amount, but given the amount of energy they’re expending during their workouts, they can still run into some of those significant deficits and medical complications.
RICK WEISS: That’s fascinating. Anyone else on athletics before we move on? Okay.
CHERI LEVINSON: I can just add that we know that eating disorders are elevated in dance and gymnastics and all of the sorts of performing sports as well. One thing I think I can add on is that of obsession with numbers. So, that is really, really commonly seen in eating disorders, so we know that eating disorders co-occur with obsessive compulsive disorder, very, very commonly, and they share a lot of the same features of OCD. But actually that sort of calorie tracking, fitness tracking is really problematic and can really maintain eating disorders, it can spur eating disorders. We published a paper a few years back on My Fitness Pal, which is a fitness tracker for counting calories, and just the percentage of people with eating disorders that use it is very, very high and it’s perceived as contributing to eating disorders. So, I do think that’s one thing that the media can and should be aware of and think about is that when you’re covering things like calorie counts or diets under a certain amount or tracking your steps, that can be really, really harmful. And, it’s much better to do things like focus on joyful movement and making sure that you’re appropriately fueling your body rather than counting those sorts of metrics.
Are there links between disordered eating and orthodontic treatments?
RICK WEISS: Great. Thank you. Question here from Rashida Anderson-Abdullah from the Medill News Service based at the great journalism school at Northwestern University. Have any panelists noticed trends linking disordered eating and orthodontic treatment such as clear aligners or braces? Is an obsession with ones eating functions, I guess, eating morphology related to this at all? Interesting question. Anyone noticing a link there?
JEAN DOAK: Actually, I was going to share that sometimes what we do see is that individuals who are struggling with an eating disorder may use the orthodontic procedures as an opportunity or the eating disorder sees it as an opportunity to further restrict food intake, so it’s not uncommon, especially with adolescents. They do have braces and they go in for a procedure, whether it’s tightening or replacing a bracket or something. There is a tenderness that is normative and is expected to occur immediately after the procedure. And, unfortunately, it is a great opportunity for the eating disorder to flourish even more. I don’t necessarily see that the preoccupation with orthodontics is correlated to developing an eating disorder, but I see it in the reverse direction how individuals with an eating disorder may find that there are increased opportunities post procedures to use that as increased food restriction.
CHERI LEVINSON: And, I’ll add to that that one thing we do know is that there are a lot of dental complications from having an eating disorder. So, for example, purging is terrible for your teeth. It just basically strips the enamel off of your teeth. And so, often times, dentists may be very much on the frontline in terms of identification of eating disorders. The Academy for Eating Disorders just recently put out a book or like a guideline for dentists on what to look for, because that really is—there may not be many other signs, but if you start to notice that an adolescent or an adult is having all this enamel, cavities, etc. that doesn’t seem normative, that is a sign of an eating disorder.
RICK WEISS: Very interesting.
JASON NAGATA: Yeah, just to add to that. One of the other signs of teeth is actually you can have swelling of your parotid glands, so it can look like swollen cheeks when you have excessive purging as well.
RICK WEISS: Is that also a result of the acid inflammation of the salivary glands?
JASON NAGATA: Yeah.
How do eating disorders affect older adults?
RICK WEISS: Okay. We have a question here from freelance reporter in California, Beth Cone. Can you touch on eating disorders in midlife and among seniors, either newly diagnosed or resulting from long-term eating disorders that have not been treated earlier or have relapsed? Anyone want to jump on that first? Jean, look like—
JEAN DOAK: I was going to defer to Dr. Levinson. I was just going to say that probably over the last decade or so, we have seen an increase in the number of individuals who are considered older adults diagnosed with an eating disorder or referred for the possibility of an eating disorder. I will say, however, still with those individuals, they are predominantly female. And so, it is less common to see older male adults referred for the possibility of an eating disorder, but nonetheless, many of these individuals are 50 plus, 65 plus. Some individuals have never been diagnosed with an eating disorder. Their entire life they struggled with an eating disorder, and perchance they saw a physician or met with a clinician who identified that some of what they are contending with, some of their behaviors, some of their cognitions or their thoughts are eating disorder related. And so, seeking treatment at that age is incredibly commendable. I can’t imagine what it would be like for an older individual to navigate these uncharted waters for themselves. Some individuals, and again, I’m talking about females, one of the things that can either ignite or reignite the eating disorder would be menopause. And so, there is an increase with that population as well. With menopause, there is a decrease in estrogen levels. Usually with that, there’s an increase in weight, and so those two things coupled with a lot of other social changes, again, could either ignite or reignite an eating disorder. And so, we do see many individuals around that age range referred for an eating disorder. I think, again, there’s a great opportunity to acknowledge that it’s not just females in that age range who can be struggling with an eating disorder, and not specific body sizes or specific weight ranges. It’s really anybody in that age range can struggle with an eating disorder.
CHERI LEVINSON: Yeah, I think that eating disorders in older adults is something that the field hasn’t paid enough attention to, and I’m guessing in the next ten years or so, there’s going to need to be more attention on that. Similar to Jean, we have a lot of patients come through who are older adults. Often times, they have had an eating disorder for 50 years, and when you’re dealing with a 50 year old eating disorder, that is a lot more difficult than dealing with a six month old eating disorder. Some things that I have seen for newer eating disorders in older adults have been things like retirement and gastrointestinal illnesses or just medical illnesses in particular. So, for example, I’ve had patients where they were put on diets for medical issues and that restriction spurred the eating disorder and then they just get stuck in that eating disorder cycle. And, that could be very, very impairing. I’ve seen it happen where people have had bariatric surgery in older age and then they go on to develop an eating disorder. And, then I do also want to be clear that one other thing that we’ve seen a lot more of and that I think is really important for the media to cover is that there’s a lot of older women with binge eating disorder, and binge eating disorder is a relatively new diagnosis. And so, with the advent of that diagnosis and more media coverage of it, there have been a lot more people that have come in that have been like oh, I had this eating disorder my whole life, but I didn’t know what it was that was wrong with me and now I’ve heard about this binge eating disorder, can I do something about it. And, binge eating disorder is a very treatable eating disorder. We can treat it in 10 to 20 sessions of cognitive behavioral therapy. And so, really there’s just this whole class of people out there that have had this but had no idea what it was and may end up coming in as an older adult to get treatment for that.
RICK WEISS: Interesting.
JASON NAGATA: And, yeah. I’ll just add along with that, is that older adults are definitely an understudy population for eating disorders, and then in addition, older adults who may be minorities. And, I think there are a couple of studies, certainly not a lot, but that have shown that, particularly like LGBTQ individuals who still may experience stressors, discrimination, adversity through their life course, and particularly people who may be as they were in their earlier or midlife like still we still have very discriminatory laws and may still have persistent body image concerns, even into late life, particularly in transgender adults. And, I think that one thing that in terms of treatment that is also a barrier is that many programs are focused on adolescents and young adults, and so some programs actually won’t take care of people after they reach a certain age. And so, I think one of the challenges is actually the transition to adult care, because many of our patients if they haven’t recovered by whatever age programs stop seeing patients, then they often have a big gap in terms of their care when they transition to adult services.
What can individuals expect out of treatment for eating disorders? Are they effective, and is relapse common?
RICK WEISS: Cheri, you mentioned how treatable binge eating disorder may be, and I’m not sure if we’ve said enough really about what to expect out of treatments. Can one of you actually address something about how effective treatments are if they are pursued, do—is relapse common, is it possible to really just be “cured” and go go along your way, or is it something that tends to sort of follow people and that there needs to be chronic awareness of? Jean, I might start with you since you had responsibility for some of the treatment things we talked about.
JEAN DOAK: Sure. Treatment can be very effective. And, again, one of the factors that leads to improved prognosis is starting treatment early and remaining in treatment. So, for binge eating disorder, for example, as Dr. Levinson described, the frontline treatment is cognitive behavioral therapy for eating disorders. And, it’s fairly prescriptive within the context of incorporating individual differences and needs, but it’s prescriptive in the sense that it’s manualized. And so, there is a 20 session process, and some of what we are looking for whenever we start that treatment is motivation for change. Now, motivation for change isn’t necessarily the same as a willingness to immediately let go of all eating disorder behaviors. That’s a process and that’s a journey unto it, so but just having that motivation for change, something to be different in an individual’s life is a great factor that can lead to better prognosis or improved prognosis. And, a lot of it starts with—initially with almost everybody—you want to make sure that you’re not missing any underlying medical sequela that may be going on, and that’s independent of the eating disorder type. So, individuals with anorexia certainly can have medical complications, so can individuals with bulimia nervosa and binge eating disorders. So, we always want to make sure that we rule out any medical complications that might be onboard. And, if there are any, we would want to make sure that we stabilize those first. And, then once as you’re stabilized, or in conjunction as those become stabilized, we can implement the therapy piece of it. And, some of the initial parts are returning to or learning how to eat in a more regular way or more regular pattern. And, what is regular that what is regular is what’s regular for that individual, and that part is not prescriptive and that is not generic across individuals. And so, some of that is relearning to eat all throughout the day, breakfast, lunch, dinner, a couple of snacks in there as well, because what we do find is that individuals who engage in restrictive patterns of eating throughout the day are more susceptible to engage in binge eating behaviors. And so, we want to reduce that susceptibility and the primary way to reduce that susceptibility is to ensure that there’s not extended periods of the day with food restriction.
RICK WEISS: Sure.
CHERI LEVINSON: Yeah. I’ll just add on here that that recovery is 100 percent possible from an eating disorder. For many folks that may end up being a chronic disorder that you need to deal with for the rest of your life, but for many folks, recovery is very real and possible. And, I also want to be clear that our treatments for eating disorders are not good enough right now. So, we know that at best, 50 percent of people respond positively to cognitive behavior therapy. That doesn’t mean that you only have a 50 percent chance of getting better. That means in one course, you’ve got a 50 percent chance of it working for you or not, right. Now, maybe you do it three more times and your chance might go up, right. Maybe you go to residential three or four times and it’s that fourth time that you get better, right. And, we also know that our relapse rate is terribly high, so something like 40 percent of folks will relapse within three months from discharge from a higher level of care. And, our treatments really have not gotten that better within the past 20, 30 years. We’re pretty much using the same things that we have been using, and a lot of this is because funding for eating disorders from the National Institute of Health, the National Science Foundation, is dismally low. If you look at the funding rate, for example, for eating disorders versus something like schizophrenia, it’s something like eating disorders get like 2 cents and they get like $500 a person or something like that. Don’t quote me exactly on those numbers. I have that graphic somewhere. But the point is, is that if we are really going to be serious about making our treatments better, there needs to be a bigger funding investment from our society in eating disordered treatment, and to be able to do that, there needs to be more awareness, that this is a serious issue and that we need better treatments. And, then finally, I’ll just put a plug, we do have three ongoing clinical trials though, developing new treatments at our lab. If anybody’s interested in learning more about those, you’re welcome to checkout our website on those. So, there are new treatments in development, but we need a lot more treatments in development.
JASON NAGATA: I agree with everything that’s been mentioned before. I’m just emphasizing the importance of really interdisciplinary care. So, because eating disorders have such significant mental and physical health consequences, it’s really important that people with eating disorders get care from a clinician – like a physician who can manage medical complications, mental health provider who can help with the mental health components, and a dietician who can help with the nutrition.
How might the new pediatric obesity guidelines from the American Academy of Pediatrics affect disordered eating among children?
RICK WEISS: Great. We have a question here that might be awkward for someone to answer, but let’s see. It’s can any of the panelists comment on the recent pediatric obesity guidelines put out by the American Academy of Pediatrics and whether they may be helpful or harmful in terms of possible impacts on disordered eating among children?
CHERI LEVINSON: I’ll take that one. The pediatric guidelines that have recently been put out are harmful and they didn’t include any eating disorder perspective, any researchers or clinicians in their development. It’s essentially prescribing eating disorder behaviors to children and adolescents. It’s based—it’s just seeped in anti-fat bias and weight stigma, and I can guarantee that those guidelines are going to add to the already increasing drastically levels of eating disorders in children and adolescents. The way that I like to explain it is that all kids are born and they essentially are on a growth curve that is for their own body. So, you have kids who are a 1 percentile kid and you have kids who are a 99 percentile kid, and that’s what their bodies are supposed to be. And, essentially, what these guidelines do is they stigmatize people in that upper quartile of growth and say that if you’re above an 80 percent, a 75 percent on your growth chart, there’s something wrong with your body and we either need medication or surgery to change it. Kids grow out and then up. They don’t just grow up. You may catch a kid who’s growing out and is about to grow up and you have a pediatrician saying we need to give you surgery that is going to alter their body for their entire life. So, I just cannot stress how problematic those guidelines are and the fact that they are going to create eating disorders in our kids.
How can minority groups and men be more effectively screened for eating disorders?
RICK WEISS: I’m glad we asked. Any others on that? We have just about 5 minutes left. I want to try to squeeze in maybe one more question. I’ve got something here from Emily Mai from Cronkite News at Arizona Public Broadcasting System. If minority groups and boys—men are not always getting properly screened for eating disorders, what options are there for them and what kinds of awareness and attention can we bring to address this issue? Also, is there any legislation addressing these issues that you’re aware of? Jason?
JASON NAGATA: Yeah, thanks so much for that question. I think it really starts with more education for primary care clinicians. I think overall there’s very limited training for internal medicine and primary care pediatricians, family medicines on eating disordered care and training and screening, and then let alone in general populations, but then also for diverse populations. So, I do think that the more that we can train and educate our frontline providers who will be the first to often identify these is super important. And then, actually last year, the U.S. Preventive Services Task Force, which is like an official organization that reviews all types of screening recommendations for medical care, actually reviewed eating disorder screening for the first time ever, and unfortunately, they found that there was insufficient evidence to justify screening, but it wasn’t that there wasn’t efficacy, it was that there just aren’t enough studies to show either way. And, particularly, they noted that there was limited evidence for the use of screening in boys and men and in racial and ethnic minority populations. And, I actually do believe that because of that inefficient evidence recommendation, that actually does lead to more funding specifically on screening so that this can be further revisited.
JEAN DOAK: And, if I may, I’d like to add that one of the grants that we have, the National Center of Excellence for Eating Disorders, has the primary mission of educating primary care physicians on eating disorders and identifying eating disorders, as well as screening eating disorders. And, the beautiful, if I can use that work, thing about when this grant started, it was in the middle of or just after—right before COVID, which means that our platform had to completely pivot to being virtual. So, no longer is it an issue of limited accessibility in disseminating this information and all of our trainings are free and many of them provide continuing medical education. So, we’re trying to entice providers as much as possible. And, of course, if they don’t know that these are available, they won’t seek it out, so we are also increasing our efforts to disseminate our information more widely.
What is one key take-home message for reporters covering this topic?
RICK WEISS: So many great story ideas and the research we’re hearing about in Cheri’s lab and what you’re doing there, Jean, Jason, so I think there’s a lot of possibilities here. I’m going to wrap up with a last question for each of you. Before I do that, I want to remind reporters as you get ready to logoff at the end of the hour, that you will see a brief survey come up as you logoff. It’s easy to ignore these. Please take the half a minute or so it takes to answer three short questions there. It really helps us keep these media briefings on track in to be designed in ways that help you as much as possible. So, please devote that half a minute or so to our survey. But let’s go around one last time. What I like to ask towards the end of these briefings is just in a half a minute each really, one take home message. If you want to have these reporters walk away remembering one thing from each of you, what is it? And, Cheri, I’ll start with you.
CHERI LEVINSON: Yeah, I would just say to really encourage your readers to seek help if they think that they might have an eating disorder or if somebody that they love might have an eating disorder. We know that the sooner someone accesses treatment, the better likelihood they have of recovery. So, anything that I think that the media can do to encourage and destigmatize treatment seeking the better.
RICK WEISS: Great. Jason.
JASON NAGATA: Yeah, I just think it’s important to note that eating disorders can affect people of all genders, sexual orientations, races, ethnicities, sizes, ages, and socioeconomic backgrounds, and you can’t tell that somebody has an eating disorder just based on appearance alone.
RICK WEISS: All right. And, Jean.
JEAN DOAK: Honestly, I was going to say a segment of each of what Dr. Levinson and Dr. Nagata said. I – and I – I’m happy to repeat those because we can’t emphasize them enough. Really encourage individuals to seek out treatment for eating disorders, decrease the stigma and guilt associated with eating disorders. I think those have to be active charges to do so, and then also to always, always keep in mind that there is no look to an eating disorder. Any one of us can be walking around with an eating disorder at any age, any one of us with any ethnicity, race, sexual orientation, just as Jason indicated. So, don’t rely on the stereotypical idea of what an eating disorder looks like.
RICK WEISS: A great ending. So, I want to thank our three panelists today. So much great information, so many wonderful story opportunities here to do what this week is meant to do for National Eating Disorders Awareness Week. Thanks, reporters, for covering this, for paying attention, and we’ll see you all journalists at our next media briefing. So long.