Science and Anorexia

I read this article last night and cried – bawled my eyes out. I am dying for everyone to know what I read. I need everyone to believe that Addy’s anorexia and the anorexia that becomes a monster in the brain of people with anorexia is real and biological. Anorexia is not cultural. Culture and experience can play a role in the development of the disease but biology drives the development of anorexia.

Rethinking Anorexia by Jennifer Couzin-Frankel- click here to read the article in it’s entirety

As a young adult, Timko shared the prevailing view of the disease: that it develops when girls, motivated by a culture that worships thinness, exert extreme willpower to stop themselves from eating. Often, the idea went, the behavior arises in reaction to parents who are unloving, controlling, or worse. But when Timko began to treat teens with anorexia and their families, that narrative crumbled—and so did her certainties about who is at risk. Many of those young people “don’t have body dissatisfaction, they weren’t on a diet, it’s not about control,” she found. “Their mom and dad are fabulous and would move heaven and Earth to get them better.”

The author starts by exploring her societal belief that anorexia is a reaction to the culture of thinness and parents who want control of their adolescent daughter. She relayed the first hand experience of doctor Timko. I don’t know if you have first hand knowledge of anorexia. I’m not talking about your crotchety old aunt who won’t eat at Thanksgiving. I mean you child in your home dying of starvation and depression due to the malnourishment of her body because of a monstrous disease.

Scientists pursuing those new ideas face a challenge, in part because of money: For fiscal year 2019, anorexia got $11 million in funding from the National Institutes of Health (NIH), a figure that hasn’t changed notably in many years and that researchers decry as shockingly low given the disease’s burdens. By contrast, schizophrenia—which has a similar prevalence and also surges during adolescence—garnered $263 million. The dearth of funder interest, many say, springs from the view that anorexia’s roots are cultural, along with shame and stigma still clouding the disease. But evidence is mounting that biology is at its core.

And this is when the tears started flowing.

The CDC said in 2020 that **An estimated 5,437,988 (2.21%) adults in the United States have ASD.** I am not here to pit us against each other, Some of us reading may be in more than one of these groups. I look at these statistics and I doubt the validity and when I look up the numbers it appears correct. I could argue the prevalence of autism being higher- closer to 5 million adults and a growing number of children. But, even if we deflated the number of people with eating disorders to a number similar to the other groups depicted- the money doesn’t work out.

What is wrong with us Americans?

We can’t share wealth.

It is shameful.

The above graph showed 2017. 2019 was worse. Anorexia got 11 mill. Schizophrenia got 263 million. The controllers and bankers of research are making some really ugly assumptions to assign such a paltry amount for anorexia. My blood boils. My heart breaks in new pieces and re shatters parts tentatively healed. I swear the powers that be sit around a mahogany table and shift on their swiveling chairs and think to themselves I would rather have a daughter with anorexia than schizophrenia. They are underestimating the fury of anorexia. My mom brain sees the flaw. I do not wish my children had schizophrenia or any disease. And yet I see the power of a disease that shuts down or alters one of the basics of life. What does a newborn do right after they are born? Latch on to their mama. Take nourishment. Drink her warm milk full of fat to grow her baby’s brain and body. In anorexia we have a disease that destroys that foundational fact of life. The essence of anorexia is deadly. It separates a person from the nourishment necessary to survive. If a disease can turn off a basic involuntary hunger to feed one self everything else is messed up.

You picture the cheerleader losing weight and still cheering every game and getting her honor roll grades and being the Homecoming queen while she slowly loses more weight- she gets as skinny as the models we see on the runway. Moms stop and tell her mother at half time, she is beautiful- she should model.

I see the soccer player who got kicked off the team because she faints a lot and can no longer defend against girls with muscle. She isn’t going to homecoming because her heart rate is dangerously low. Her heart is being eaten by the her own body. It is good that she is missing school because the bullies were ruthless. The bullies saw that she was weakened and they capitalized. And she can’t hold her head up to read her books and studying is non existent because her attention has diminished with her body focusing on warming her starving organs. She sleeps alone in a hospital in Wisconsin while her family cries in Georgia. Moms stop me on the sidewalk and can’t believe she was hospitalized. She is such a beautiful girl- she should model.

50% to 60% of the risk of developing anorexia was due to genes, implying DNA is a powerful driver. By contrast, family studies suggest the heritability of breast cancer is about 30%, and that of depression is roughly 40%. “I was shocked,” Zeltser says.

I’m not shocked to see that biology is driving the development of anorexia. As discussed in the article, tons of people want to be extremely thin. Society tells all of us that thin is the ideal. We spend billions of dollars on diets and weight loss- non fat food, pills, apps, gyms, wraps, cosmetic surgery… It blows the mind of a mom whose child has anorexia. It is pervasive. It permeates our days even for babies- too much milk, too much weight gain. It creeps into every holiday or it stomps into every holiday like a giant. No matter what we spend or how much we want to be extremely thin, most of us do not develop anorexia. The thin ideal, our culture does not drive the development of this disease. Biology drives the development of anorexia.

An antipsychotic drug, olanzapine, which causes profound weight gain as a side effect, had little to no effect on weight when tested in people with anorexia. Something in people’s biology prevented olanzapine from causing weight gain, Zeltser believes. “That is not just [mental] control.”

I am re-reading the article from Science and I am finding nuggets of wisdom – support for the theory that anorexia is biological. And if it is biological why the substandard monetary contributions to research for this disease compared to others? Which leads me to a million regrets and doubts and wishes- why isn’t Addy well? Why is our unhealthy obsession with thinness allowed to interfere with science? Why is Addy’s disease not important to people?

At Columbia, psychiatrist Joanna Steinglass wanted to understand how the brains of people with anorexia guide their food choices. In two studies, she and her colleagues recruited inpatients with eating disorders along with a control group. In people with anorexia, both during and after hospitalization, MRI scans showed the region of the brain associated with selecting foods was the dorsal striatum, which is key to forming habits. In people without an eating disorder, a different brain region guides choices. The work first appeared in 2015 in Nature Neuroscience, and the team presented more findings at a conference last year.

“They’re using different circuits when they make decisions,” Steinglass says. This jibes with her idea that as people repeatedly restrict eating, the behavior moves to a different brain region and becomes less amenable to change. That could help explain why many recovered patients relapse.

This makes sense to me. Anorexia erodes the pleasure of food choices. Anorexia makes food choices a habit.

Walter Kaye, a psychiatrist who directs the eating disorders program at the University of California (UC), San Diego, led a study looking at how the brains of people with anorexia behave when their bodies are hungry

Kaye knew hunger activates brain circuits that in turn motivate eating, making food desirable. That relationship was clear during brain imaging of the control group volunteers: When they were offered sugar water after 16 hours of fasting, their reward and motivation circuits lit up. But in people with anorexia, those circuits were much less active after fasting. “They could identify being hungry,” Kaye says, but their brains couldn’t convert that into a desire to eat. The patients also experienced heightened anxiety and inhibition, along with diminished reward signaling in their brains. That effect may further impair their drive to eat. Kaye suggests people with anorexia “miscode food as risky rather than rewarding.”

Addy was a patient of Dr. Kaye at UCSD. He and his program were the reason we needed Addy to be in California. Our family moved across the country in the hope that Addy would believe and recovered from this awful disease. He is the first person to explain the idea the idea and visual t hat I use to explain Addy’s disease to family, friends and strangers when they ask or when they happen to mention a recent fast or cleanse or diet.

He gathered parents in one room and drew on a white board. Your child is standing on a cliff. Your child has a brain that has the genetic makeup to make it amenable to developing anorexia. If your child loses weight and goes under their personal set point for any reason- the flu, a diet, a new desire to be the fastest on the cross country team- then that child’s brian has fallen off the cliff and into anorexia. Another child who stood on the cliff that did not have the genes to develop anorexia and loses weight, they do not fall off the cliff and develop anorexia. A child could have the genetic make up for anorexia but doesn’t go under their personal set point- doesn’t lose weight, they stay at the top of the cliff and don’t have anorexia either.

Walter Kaye is a leader in anorexia treatment. UCSD eating disorder recovery hospital kept Addy alive. The approach that they use is FBT. The most studied and most effective strategy to date is called family-based treatment (FBT), which originated at the Maudsley Hospital in London. It was later refined by Lock and psychologist Daniel Le Grange, of UC San Francisco, who trained at Maudsley.

FBT asks parents to set aside many of their family’s day-to-day activities—scaling back school, work, hobbies—to sit with their children, requiring them to eat. Faced with food as a form of medicine, and with their world having contracted, many young people do start to eat again despite the fear and anxiety it causes them. Researchers are working to understand how FBT is intertwined with the biology of the illness, but for about half who try FBT in adolescence—and perhaps 70% who try it early in the disease—the treatment is effective.

But many families aren’t told about that therapeutic strategy, even though decades have passed since it first showed success in a randomized trial, in 1987. Practitioners may not be familiar with FBT, Timko says, they may believe the family played a role in anorexia’s onset, or they may feel that adolescents must want to get better before starting FBT—a view she disputes.

Scientists are looking at other treatments that might help those for which FBT is not helpful. Is cognitive behavioral therapy promising? Other ideas are a psychadelic drug useful in addiction to interrupt the habit links in the brain and brain stimulation used in OCD treatment.

“Most families are so burned out, crushed, guilty, that they don’t want to come forward,” she says. “There are still these myths out there—that these are chosen illnesses and parents somehow failed to prevent, or caused, or exacerbated the problem.” Still, she hopes that as researchers doggedly track the disease’s biological roots in genes and the brain, those enduring myths will fade.

A mother and author of a book Eating with Your Anorexic, Lyster-Mensch talks and writes our truth. We are exhausted families. You saw the best treatment is FBT which relies on families setting aside their lives to re feed and nourish their child back to health. This process last years. Or for us a decade.

Addy knows she has anorexia and Addy knows more about the disease than anyone I know. Addy knows people who have died and people who have fully recovered. She wants to be recovered fully. And yet the insidious nature of anorexia in her brain and the amount of time that this disease has malnourished her brain and body is extremely difficult to overcome. (I have written other pieces about Addy and her experience with this disease and our family’s struggle. The what ifs appear easily and I panic to push away the negatives.) Addy is alive. Addy is amazing. Addy is stronger and more empathetic and more compassionate. Her struggle and her life experience has been different than her peers and she has shined.

No more people should die of anorexia. I wish I could explain how unfair this disease has been on our lives. I wish I could inspire people to give research dollars to anorexia. I wish I could make Addy well.

If you want to read more about eating disorders and our experience, click below. Thanks.