"There are people who have been living with an eating disorder for thirty years; that's why we need to investigate"

"In the treatment of eating disorders, our clinical practice shows that the effectiveness rate is no more than 60%—and in some cases lower—across all age groups. If we don't conduct research, we are destined to maintain the same levels of effectiveness for decades to come."

Generally, 90% of research on eating disorders is clinical . So when we talk about research, we're talking about strategies or contributions, some more or less novel, that can be effective for individuals or specific groups of people. And it's not just about innovation, although that's important too, but also about generating self-criticism about what we're doing. We conduct research with the individual in mind, considering effectiveness, our own limitations, the treatment itself, and the fact that we don't want to remain stagnant, but rather strive for improvement. Otherwise, we'd be where we were thirty years ago, with a recovery rate of 20 or 25%, whereas now we can say it's between 50 and 70%, depending on the type of eating disorder. Our goal is to reach 90%, and for that, we need research. Otherwise, we'll continue doing the same thing, and everything will depend on the individual, their motivation, the therapist's ability to motivate, and the family's support.

"If we look at the effectiveness of current treatments, a significant advance (though it still needs further development) is the understanding that the affected person is a fundamental part of the treatment , not a passive recipient of intervention. In this regard, the effectiveness of treatments that incorporate family therapy into the recovery process is noteworthy; or, if we consider adolescents, the implementation of strategies involving home-based work and home-based treatment. The effectiveness of cognitive-behavioral therapy has also been consolidated, especially in bulimia and binge eating disorder, and in anorexia when it is in a less acute phase."

If we didn't investigate, we would be like we were thirty years ago, with a recovery rate of only 20 or 25%.

We must also discuss the effectiveness of using new technologies, such as video games ( serious games ) or virtual reality, to address issues such as impulsivity or emotion regulation, for example, which, despite good treatment results, often remain and can contribute to relapses.

On the other hand, unfortunately, there is no first-line treatment for eating disorders, unlike with other mental disorders. We see that there has been little progress in pharmacological or more physical or biological strategies. But there has been some progress—we're not going to be defeatist—especially in transcranial magnetic stimulation, but with limited results so far.

"In terms of diagnosis, the DSM-5 ( Diagnostic and Statistical Manual of Mental Disorders ) has included some disorders within the Eating Disorders category, such as Pica and ARFID , which were previously classified under other categories. In recent years, the characteristics of these cases, their heterogeneity, treatment outcomes, and how they can be implemented have been analyzed in more detail. However, there are still few studies."

And one thing that research has shown is that the severity criteria established in the DSM-5 are inadequate . These criteria are based on eating symptoms, body mass index (BMI) in the case of anorexia, and the frequency of binge eating or purging in the case of bulimia or binge eating disorder; and they minimize the value of other factors that can contribute to severity. What many studies have shown is that these criteria are not valid. That is, a person who is not extremely underweight but has a long-standing disorder can and does present with greater severity than someone who may have acutely reached a low BMI but may be motivated for treatment and may have family support, etc.

What we have seen in many studies is that, more important than the severity of the symptoms, is the duration of the eating disorder.

What we've seen in many studies is that, more important than the severity of the symptoms is the duration . Cases with a long duration tend to be more severe, even if the body mass index is somewhat more stable, than cases with a very short duration. The same is true, for example, with OSFED (another specified eating disorder). Atypical cases may present with mild symptoms, but they are severe because we see that in more than 50% of cases, patients drop out of treatment, exhibit significant general psychopathology, and become chronic. Therefore, these are severe cases that require intervention. How you categorize the severity of a disorder is crucial because of its importance in deciding on the type of assistance offered to the individual. Research helps personalize treatments and inform decisions about when to provide intensive or less intensive treatment.

"When you've worked in this field for many years, you see how those who don't recover get older over time, and those who developed their disorder in adolescence are now in advanced adulthood. You unconsciously gain an evolutionary perspective on the disorder and its accompanying consequences. There's a significant number of people—we could say around 20% —who remain in the healthcare system, with all the difficulties that entails on an individual, family, and social level. Along the way, they've lost job security, education, and a more or less stable family situation that could have helped them move forward, and they've become increasingly socially isolated and less functional. If there are currently 15% of people over 40 in adult units, if we don't address the issue of chronicity, this figure could multiply in a few years." Therefore, it is important to consider what we do with those people who do not respond well to treatment, who lack a minimum level of functional adaptation, who have low self-esteem and a limited quality of life. We cannot forget about them.

12 lessons learned from people with long-term eating disorders

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"Initially, chronic cases were called severe eating disorders that persist over time, and it was established that these were cases with a duration of more than three years; but those of us who worked with adults felt that this didn't reflect reality , because we were treating people who had already been struggling for eight or nine years and who had been through child and adolescent treatment units with limited success. Later, the concept was questioned, and it was extended to seven years. While this change was more coherent and better reflected the empirical evidence, it wasn't without a certain degree of arbitrariness: why seven years and not six or eight? And it also had a personal and economic cost , in terms of treatment, for families... People who were considered chronic by the age of 23 meant that their attitude, and that of their families, toward treatment was not appropriate."

A high percentage of people can recover fully or substantially if they receive specialized interventions at the right time.

So what we did was try to objectify it. Who will have the most difficulty recovering from the disorder? Those with less than a 50% chance of successful treatment. And after what duration of the disorder does this premise begin to hold true? We conducted a study with more than 1,200 cases we had treated and found that the number of years the disorder had been present had a decisive impact on the response to treatment. We found that the critical period, in the case of anorexia and bulimia, was after twelve or thirteen years, and in binge eating disorder, we found it was longer, after twenty years. But the important thing is that in the case of atypical eating disorders, it was after six years. For the first time, this study establishes a temporal criterion for the risk of chronicity of symptoms for the different subtypes of eating disorders. A high percentage of people can recover completely or substantially if they receive specialized interventions at the right time. In other words, we cannot neglect the less severe cases and must dedicate efforts to early interventions that can improve outcomes, especially in atypical cases, but also in typical ones."

The long-standing eating disorder

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"The challenges are, once again, closely linked to clinical practice. There are cases that are difficult to treat, and we must focus on those cases, those with higher rates of neglect or comorbidities , especially substance abuse or personality disorders. We also need to improve communication between units and specialists to ensure smoother transitions, for example, from adolescent to adult care."

But above all, we must address and control the issue of obesity . Of the 400 new cases we see each year in our unit, 25% have anorexia, but the rest have bulimia or binge eating disorder. Obesity will be present in around 35% of these individuals at some point in their lives. We have recently started a European project, which we coordinate from here, and we have observed that people with obesity , whether pre-existing or resulting from an eating disorder, have poorer treatment outcomes and a higher dropout rate. This is a situation that requires a comprehensive approach and close monitoring.

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We must focus on cases with greater neglect or comorbidities, especially substance abuse or personality disorders, and we must work on and control the issue of obesity.

Another future challenge in the field of research is the detection of neurobiomarkers . Thanks to the collaboration of those affected, we conduct many neuroimaging studies and studies of hormonal markers, examining the factors that may be influencing the disorder, not only by looking at clinical, personality, and biological variables, but also by seeing how these impact treatment. We need to do much more research and allocate more resources in this area, keeping in mind that there are no drugs or medications that can help.

"It impacts you first and foremost on a personal level. It generally affects teenagers or young adults who are studying. If an eating disorder enters your life, it will affect your daily routine, disrupt your studies and social life , and you will begin to isolate yourself. Your family will understand you for a few years, but then the situation will become more complex and incomprehensible to them. And the stigma will appear: 'They don't recover because they don't want to.' And the disorder continues to progress: you will begin to isolate yourself, and if you have a supportive environment, perfect, but if not, you will isolate yourself even more and experience feelings of loneliness , sometimes due to misunderstanding and helplessness. At this stage, people tend to become increasingly less functional, and they generally experience a sense of loss and inadequacy , which can lead them to attempt suicide. In general, communication with those around them diminishes, and family life becomes strained."

At a socioeconomic level, we are losing competitiveness , leaving successful people with great abilities and worth behind, whose career and professional prospects are cut short as a consequence of their disorder. And this entails a great social, economic, and, above all, human cost.

Marta Tena Briceño

Person with personal experience in eating disorders

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