Dr. Thomas R. Insel, Director of the National Institute of Mental Health (NIMH), speaking at the NEDA meeting in Bethesda, said it will be important to find the core pathology for an eating disorder, just as it has been for breast cancer, type I diabetes and lymphoma. The hope is that biological markers for an eating disorder can be established before the worst parts of the disease have developed, Dr. Insel noted.

Many eating disorders are in reality brain disorders

“Within the realm of eating disorders, especially anorexia nervosa, we are talking about brain disorders,” he said. Noting that he himself was trained in a more psychodynamic environment, nonetheless, he said, sometimes psychotherapy alone is ineffective. (Dr. Insel was involved in the first studies of dopamine and serotonin and the complex social behavior of animals). “The unhappy story is that we still don’t have all the components,” he said, adding, “We diagnose all these disorders by the presenting symptoms as episodes arise, and usually after they arise.” We cannot preempt the disease, he pointed out, adding, “What we are missing is an understanding of the biology of the disorders and what is really going wrong.” In other words, he said, it is still not known what portion of the brain is abnormal in an eating disorders patient.

Dr. Insel said, “Unfortunately, for a mental disorder, treatment often depends more upon who the patient goes to see than on a specific, established protocol.” Imagine if treatment for breast cancer depended on the individual medical center, he said, noting that just as this approach is not acceptable for breast cancer, it is not acceptable for eating disorders treatment.

Better diagnostic tools have helped individual care

The good news is that diagnostic tools developed in the last decade are allowing clinicians to do what has been impossible before, according to Dr. Insel. “These tools have already transformed the way we have approached so many disorders, such as cancer, heart disease, and diabetes. They have allowed clinicians to individualize patient care,” he said. The second part of what needs to be done is to establish evidence-based practices, to develop dissemination of data and to establish the “generalizability” of research findings, according to Dr. Insel.

There is good reason to think that the prefrontal cortex
is the brain center for some eating disorders.

“We are at an interesting point in time,” Dr. Insel said, and added, “10 years ago dopamine and serotonin and neurotransmitters were discovered and 10 to 12 centers in the brain were known. Now there are 800 to 900 known centers in the brain. We are just discovering which of these may control appetite or body image, for example,” he said.

The changing culture of science

Dr. Insel said there is not just a changing culture of science in research but a “in the way we do patient care.” He pointed to the Human Genome Project, which has identified 23,000 or so genetic addresses and a sequence for every gene. Even so, he added, “What is very clear is that we know very little about the human genome, including what makes us uniquely human. What makes it interesting is not the consensus, but what makes one person and not another develop anorexia.”

Neuroimaging has provided a great leap forward in research and understanding of the brain, he said, noting that what was previously “a black box” is now viewed in high definition, with spatial resolution, so that even small changes can be seen and recorded. Real-time imaging has allowed researchers to see such changes. For example, the tiny lesions in epilepsy, which weren’t visible before, can now be seen.

Research and funding

Dr. Insel, who oversees the NIMH’s annual $1.4 billion budget for research, noted that research into depression has led to finding a brain system that seems to converge on one area—Area 25—that seems to be the central switching area for the illness. For eating disorders there may not be a lesion, but abnormalities in information processing in the brain will help lead researchers to the affected area or areas, he noted. Dr. Insel said, “Most likely for eating disorders this is a pathway in the prefrontal cortex—anorexia and post-traumatic stress disorder, for example, affect different parts of the prefrontal cortex. This is particularly true for the obsessions, addictive disorders, and alterations of body image,” he pointed out, adding “there is good reason to think that the prefrontal cortex is the center.”

Dr. Insel also said that research is changing the culture of science, and that the days of being able to talk about psychology versus biology versus neurology are fading, as is the idea of solo scientists. “We are getting away from the era where scientists do a study, hold onto the data and build their careers,” he said. Instead, there is an effort to build networks and make information publicly accessible as quickly as possible.

Getting more grants for eating disorders research

When a member of the audience asked why it is so difficult to get funds for eating disorders research, even while the mortality rate from anorexia nervosa is higher than for any other mental illness, Dr. Insel said that more and better studies are needed, and that group advocacy does make a difference, as it has for advocates for schizophrenia and autism. He suggested that the eating disorders community could do the same thing, and also look for other sources of funding. Dr, Insel pointed out that advocacy groups for schizophrenia and autism have developed their “own funding arms, partnering with other groups.”

He added that another critical step is to have data to present to Congress—better studies of the brain is one area, he said, where a picture is worth a thousand words. Another reason that research funding is challenging in the eating disorders field is that the overall field is still small and more studies and data are needed. One option for organizations that have smaller budgets is to get grants for pilot studies, he said. Dr. Insel also urged the audience to continue to get the word out about the seriousness of eating disorders and to work to change the perception that such disorders are due to bad parenting and lifestyle choices.