GET IN THE GAME

We can either watch life from the sidelines, or actively participate … Either we let self-doubt and feelings of inadequacy prevent us from realizing our potential, or embrace the fact that when we turn our attention away from ourselves, our potential is limitless.

Christopher Reeve, Actor

We can either continue to collectively stand on the sidelines and debate what is causing autism and if it is an epidemic or we can get on the field and start addressing the real problem – a generation of children with autism. We are not focusing enough on prevention, treatments and support services.

            Jenny McCarthy, Author and actress

You don’t make progress by standing on the sidelines, whimpering and complaining. You make progress by implementing ideas.

            Shirley Chisholm, First African-American Woman elected to Congress

In many weddings today, the officiant speaks the following words, “Should anyone present know of any reason that this couple should not be joined in holy matrimony, speak now or forever hold your peace.”

The origin of that statement is believed to go back to Medieval times. Communication between areas of a country was often slow and erratic, and record-keeping was anything but organized. This led the Christian church to establish the phrase as a way to give time for any legal issues in the marriage to come to light. Wedding experts have opined that legal issues included a bride or groom who were already married, or the couple was … related. At times, news of the impending wedding was posted publicly for a few weeks to give word time to travel to outlying areas. Saying ‘speak now or forever hold your peace’ during the wedding day was like giving one last chance before this new marriage was legally binding.

In the parlance of modern society, we hear a similar phrase, “Get off the sidelines and get in the game … or quit complaining!”

In the eating disorder community today, people who are defined as “marginalized” have been presented an incredible opportunity. An opportunity to not just get in the game, but to control the rules of the game. But first, we should review who the “marginalized people” are in the realm of eating disorder treatment.

In general, people who define themselves as “marginalized” are anyone other than thin, Anglo girls or women with anorexia nervosa. Foundations, organizations, militant activities and advocates have questioned why girls and women with anorexia are allegedly “centered” by research doctors and treatment centers. One leader of an organization said, “Eating disorder advocates, clinicians, researchers, does it irritate or infuriate you that so much of the attention in the media and research and the public is all about “anorexia? Yeah, me, too.”

That same organization posted the following on social media: “Anorexia nervosa is the rarest of the eating disorders but gets most of the attention: Why? What is the history? How can we change it?”

Another advocate on a social media site posted the following: “We must also be centering and supporting BiPOC, LGBTQ+, fat therapists and professionals. This is not [sic.] space for white, straight and thin folks to jump in.”

With regard to research being conducted on eating disorders, a number of fringe groups and advocates are making a number of demands regarding research. A former ambassador to an organization recently resigned and among other statements, said, “I implore [this organization] to do better – reinstate [a former employee], recommit clearly and publicly to centering the voices, stories, and needs of People of Color, Trans and Non-Binary people, Higher Weight people, and other marginalized populations, and then prove those commitments in your actions, and the allocation of your resources.”

On July 22nd 2020 Trans Folx Fighting Eating Disorders published an open letter to eating disorder treatment centers and other organizations. Amongst the list of demands made in this letter was the following:

“Fund research for and by people with under represented identities in eating disorder research (BIPOC, NBPOC, LGBTQIA+, fat, disabled, neurodiverse, low socioeconomic status, etc).”

Two other advocates issued a joint statement demanding, “Fund research by and about Black and Brown people. Advocate for funding for Black and Brown researchers. End the application of research with a majority white sample population. Require poster presentations to be about marginalized clients.”

That same group continued, “The stereotypes and biases of what an eating disorder looks like (young, thin, white, wealthy, etc) are preventing us from doing the research we need to care for the people who actually comprise the majority of people with eating disorders.”

Still another organization included this statement in its list of demands, “Fund research examining disparities in who receives ED treatment and the efficacy of various treatment methods in under-represented populations. Specifically, we ask that you conduct research examining how EDs manifest in intersex populations, transgender populations, QTBIPOC, and amongst sex workers with investigators being of those identities.”

Today these “marginalized groups” are presented with an incredible opportunity to not just participate in an international research study on eating disorders, but to have their voices amplified in that study by submitting by the thousands, their participation. And it can be done at no cost and from the sanctity of their own homes. The marginalized groups have the chance to “get off the sidelines and get into the game,” safely and conveniently from their own homes.

On October 13, 2020, a research team led by Professor Cynthia Bulik at the University of North Carolina Chapel Hill Center of Excellence for Eating Disorders launched the United States participation in the Eating Disorder Genetics Initiative (EDGI).

EDGI is an international research study designed to understand how genes can influence the risk for developing an eating disorder. It is funded by the National Institute of Mental Health.

The purpose of EDGI is to learn more about how genes influence risk for bulimia nervosa, binge-eating disorder, and anorexia nervosa. If you have ever had one of these three eating disorders, they invite you to participate by taking their survey. To make this step even easier, this survey can be found here: our survey.

That is all it takes. Click the link. Take the survey. Participate

For those organizations and advocates who market themselves as being the champion for marginalized people, this is your opportunity to lead marginalized people through your actions.

Click. Participate. our survey.

Click. Participate. our survey.

In the meantime, if you would like to read about eating disorders from Black writers, here are some articles and books:

If you would like to support therapy resources for Black girls and women, you may wish to learn about this organization: Therapy Fund for Black Women and Girls

In the meantime,

Click. Participate. our survey.

Click. Participate. our survey.

Participate now … or forever hold your peace.

THE POWER OF THE MESSAGE

The 2020 Edition of Weight Stigma Awareness Week (WSAW) took place between September 28 and October 2. The Binge Eating Disorder Association (BEDA) under the leadership of Chevese Underhill Turner, started the WSAW in 2011. WSAW is intended to bring much needed attention to the issue of weight stigma and weight discrimination as they impact eating disorders.

With regard to weight stigma, The Strategic Training Initiative for the Prevention of Eating Disorders (STRIPED) at Harvard’s T. H. Chan School of Public Health’s published a clear and direct message:

“Weight stigma and the discrimination it is used to justify are common, negatively impact the health of all people, and are particularly harmful for those living in larger bodies. Experiencing weight stigma contributes to depression, anxiety, and suicidality. Weight stigma in healthcare and physical activity settings impedes access to these settings, leading to their avoidance. Weight stigma also creates the conditions that render people vulnerable to exploitative marketing tactics. For example, marketing of tobacco, diet products, and highly processed foods with low nutritional value is designed to drive up profits while driving down the health of struggling communities.

Weight stigma is also a significant risk factor for eating disorders. The more a person takes negative messages about body weight to heart, the more likely they are to develop an eating disorder, regardless of how much that person weighs. Stigmatizing messages about body weight come from mass media, educators, bullies at school, fitness professionals, prospective employers, landlords, and businesses. And they can also come from public health and healthcare professionals.”

STRIPED’s position is direct. Intelligent. To the point. It provides a common rallying point. An issue to be embraced by all. A vision, a mission, a reality bigger than any one person. And yet, embracing this vision is so elusive.

WSAW 2020 epitomized 2020 in a nutshell. It will be remembered for its divisiveness, rancor and emotional, reactionary messages. WSAW 2020 will be known as the time when the important message behind weight stigma took a back seat to a significantly lesser issue. The Power of the Message behind weight stigma was not only completely lost, but was not even articulated by people who claim to have been most impacted by weight stigma. As a result, the eating disorder community was cheapened.

The failings of WSAW 2020 centered on the eating disorder community’s failure to recognize that we as a society can only make progress, that we can only accomplish great and mighty things when we embrace the Power of the Message, and not the Image of the Messenger.

Chevese Turner, who occupied the role of Chief Policy and Strategy Officer for NEDA after the merger of BEDA and NEDA in 2018, was let go by NEDA in the weeks leading up to WSAW 2020. And NEDA, as it was expected and entitled to do, carried forward with WSAW 2020.  However, neither NEDA nor Ms. Turner issued a public statement on the ending of this employment relationship.

Since no statement effectively addressing the termination of Ms. Turner’s employment was issued, the confusion, rancor, anger and push back from a number of people was not surprising and was not unexpected. Some of the reaction on social media included the following:

Kaylie Bucaro Is anyone going to answer our questions about your lack of inclusivity? And lack of credit to the creator of WSAW (aka the reason this event was created)?

Meghan Cichy Looking forward to NEDA’s response on how they plan to address their organizations weight stigma.

Hanna Boleman Why did you fire Chevese Turner and then take over her project???

Hanna Boleman Why did you unjustly fire Chevese Turner?

Beckie Hill Is this ED prevention in ALL bodies? Including fat, BIPOC, LGBTQ+ etc? I’m confused. You have yet to respond to my, and hundreds of other people’s requests around Chevise. Joslyn is now gone, as is your ambassador (Ragen). Which bodies are you asking US to request for? Given your continued silence, I am left to assume it is not my body or bodies like mine.

Lisa Jennette Du Breuil Continued silence about why you fired Chevese Turner is sending a crystal clear message about who you really value, NEDA. So disappointed.

Ellyn Silverman Linnetz Will not be doing anything unless you are transparent. All bodies are meant to be included. Not fired and bullied like you have. Lost credibility in my eyes.

Bethany Constien Wheeler How can we prevent eating disorders if organizations, like NEDA, aren’t willing to take responsibility for perpetuating body oppression of marginalized bodies?

Hanna Boleman Can you explain more about how you support bodies in all sizes and shapes experiencing eating disorders? Why did you fire Chevese Turner?

Eating as a Path to Yoga NEDA, please deal with your internalized fat phobia.

Maeve Fickes NEDA are you going to address what happened with Chevese Turner? If not, this is the most hypocritical video

Rebecca Scritchfield NEDA…. As a thin cis het helping pro, I am trying to find ONE fat person who supports your recent firing of Chevese Underhill Turner without explanation and using #WSAW2020 without crediting her or BEDA as originators. It’s sad because people deserve activism but it must be authentic, and led by the people you purport to help. What you’re doing is hollow and hurtful.

Rachel Millner NED it is important for your readers to know (and you should be stating this) that weight stigma awareness week was created by Chevese Turner founder of BEDA and taken over by NEDA only after the merger.

Weight stigma should matter to everyone- including NEDA- and you need to take accountability for the weight stigma you perpetuated by firing Chevese and now promoting WSAW as if it were your own.

As an organization, you need to do your own workaround weight stigma. If you eliminated weight stigma in your organization, it would go a long way in eliminating it in the field.

Megan L Mills Fat babe here saying: Check yourselves for weight stigma in YOUR OWN ORGANIZATION NEDA!

Ellyn Silverman Linnetz NEDA …. unfortunately I do not associate this Awareness Week with your organization. You do not represent those that are oppressed. When you do… you will need to earn back trust and loyalty.

Megan L Mills Until a statement is issued with full transparency on how they intend to address the weight stigma in their own administration, I cannot and will not support NEDA.

Kristen A. Hardy An event on bias against fat people, featuring all thin people? Sounds like NEDA!

Julie Duffy Dillon Until NEDA provides more transparency on what happened with the firing of Chevese Turner—the person who created Weight Stigma Awareness Week—I consider it a harmful organization and will not recommend it.

Lisa Jennette Du Breuil Until NEDA offers a public explanation for why Chevese Turner was let go from the organization, I’m not participating or promoting #WSAW. Do Better NEDA

Meghan Kacmarcik Seconding the comments above – we demand transparency. It is it deeply troubling to me that NEDA has decided to become to ambassador for WSAW when they chose to let Chevese (the creator of WSAW!) go, still with no explanation or answers. Even more troubling is the fact that most people on the panel about weight stigma next week are in smaller bodies. Who is leading the charge on this? Is it a person in a larger body? Is it a person who has had the lived experience of weight stigma? Considering the lack of people working for NEDA who live in larger bodies (one, if I’m not mistaken), the answer is probably no. I no longer feel safe recommended NEDA as a safe resource for clients and I will no longer be referring anyone there until we have answers. It feels like NEDA cares about using buzzwords but not actually doing anything to combat the deadly impact of weight stigma.

Beckie Hill This is NOT YOURS!! This event was started by someone you parted ways with and have yet to issue any statement about. I’m disgusted and angry at you NEDA!

Angela Meadows How dare you take credit for WSAW? This was Chevese Underhill Turner’s labour of love that she built up from nothing. WTF NEDA? This is a disgrace.

Amy Blackmore How do you expect anyone to take you seriously with your dismissal of the very person who started this event, Chevese Turner? You have done so much damage with this move. Unbelievable.

This was an outpouring of anger, of indignation, of recrimination, of fear, of resignation. And this articulation of negative energy was not even directed at society’s ignorance of weight stigma. No. The very week when the Power of the Message regarding weight stigma should have been elevated to one all powerful, unified, “we stand together as one and shall be heard” voice, it was drowned out by a cacophony of crowd noise regarding one person. The Power of the Message was forgotten. The Power of the Message was lost. And People who Lead do not allow that to happen. In fact, for People who Lead losing the Power of the Message is inconceivable.

Consider John F. Kennedy’s Inaugural Address and his knowledge that a democracy thrives only when citizens contribute their talents to the common good. Persons who Lead inspire citizens to acts of sacrifice. When President Kennedy exhorted us to “Ask not, what your country can do for you,” he appealed to our noblest instincts. He was voicing a message that we were eager, and needed to hear. He lifted our spirits. He recognized that it was the importance of the message that speaks to us.

In 1987, President Reagan, in his famous “Tear Down This Wall” speech extolled a message far greater than him, “We welcome change and openness; for we believe that freedom and security go together, that the advance of human liberty can only strengthen the cause of world peace … Yes, across Europe, this wall will fall. For it cannot withstand faith; it cannot withstand truth. The wall cannot withstand freedom.”

Admiral William McRaven, who in a commencement speech given at the University of Texas said these powerful words, “So, if you want to change the world, start each day with a task completed. Find someone to help you through life. Respect everyone. Know that life is not fair and you will fail often. But if you take some risks, step up when the times are the toughest, face down the bullies, lift up the downtrodden, and never ever give up, if you do these things, the next generation and the generations that follow will live in a world far better than the one we have today. And what started here, will indeed have changed the world for the better.”

Powerful messages and righteous causes appeal not just to our intellect, but to our hearts, our souls, and the very essence of our life. Those messages and causes inspire us to take action, to improve society, to help those who cannot help themselves. True persons of wisdom and insight recognize the power of the message and have the ability to remove themselves from the equation. They instinctively know it is not about them. And they act accordingly.

On the first day of WSAW 2020, the following message was posted on social media:

 (9/28/20) “NEDA just sent out an email to its list that talks about Weight Stigma Awareness Week.

I want to be very clear that Wendy advocated for BEDA to take on weight stigma as one of its pillars and had the idea for WSAW. I acknowledged her for this reason — it was her continually advocacy to have the organization begin telling the story about weight stigma and eating disorders.

But I also want to be clear that the board of directors and I founded the week. I did the programming and did the labor. It was an important effort between me and the board of directors. [emphasis added]

I’m sorry that NEDA feels it has to try to minimize my role because it is getting negative feedback from the community who knows who I am and what I stand for. [emphasis added]

Its author? Chevese Underhill Turner.

The remainder of WSAW 2020 was defined by acrimonious messages, demands, threats, resignations of both paid and volunteer positions and naïve calls for reinstatement. The social media posts previously referenced represent but a taste of the acrimony.

Now, imagine if the message on September 28 had been different. Imagine if that message was more along the lines of:

“Weight Stigma Awareness Week is upon us. And collectively, we must come together as one. We must speak with one mighty voice. Weight stigma is bigger, much bigger than any one person. Weight stigma has hurt so many in our community. And unless we find a way to put our differences aside, unless we find a way to send a powerful, impactful, passionate message that resonates not just within our community, and not just within the medical and mental health community, but mainstream society as a whole we will continue to fail. Whatever differences which may currently exist between NEDA and me are insignificant when compared to the seemingly insurmountable challenges which lie ahead. Embrace the message! Write the person who represents you in Congress. Send our powerful message to every school board, every city council, every medical and mental health association. Send our powerful message to every parent organization. Send our powerful message to every governor and mayor. Send our powerful message to every political group and to all media outlets. Our voices must be heard. Our powerful message … weight stigma must and will be eradicated will echo across our great land.”

Two very different messages. And those messages illustrate the differences between “a leader,” and “a Person who Leads.” A leader is merely a person who holds a position of authority. They are a “boss.” It is the spot in the hierarchy of the workplace providing authority. In essence, a leader is an authority figure because of a title. A leader leads through bullying or by excluding people who do not agree with him/her. Anyone can be a boss.

On the other hand, a “Person who Leads” receives his or her authority from within, an internal place. A title doesn’t make anyone a Person who Leads and those persons can show leadership even if they are lower in the workplace hierarchy. It is inherent. People follow a Person who Leads because they believe in that person’s innate ability to take charge and change things in a positive, direct, progressive manner. A Person who Leads assumes a place of authority because they are able to communicate their vision honestly and with transparency and inspires others to follow. Persons who Lead do not demand authority. To the contrary. Persons who Lead not only listen to, but welcome voices who disagree with him/her. Authority is bestowed upon them through acclimation. Humility and a servant mentality are their sword and shield. Persons who Lead understand the Power of the Message.

The eating disorder community just missed another incredible opportunity. An opportunity to bring collaboration and healing from the depths of despair and acrimony. An opportunity to learn, to understand that the Image of the Messenger is more often than not, an impediment to growth and progress.

The Power of the Message is about humility. The Power of the Message is about love.  The Power of the Message is pure and open, honest and transparent. The Power of the Message overshadows pain and anguish, jealousy and greed, ego and self-absorption.

The Power of the Message.

THANK YOU

What an honor it was to appear with Dr. Stephanie Setliff, the Regional Director of Eating Recovery Center Texas as we made a joint presentation to Apple on September 30, 2020. Apple broadcast the presentation on their internal network to their employees. At the end of this post, I will include some of the slides incorporated in the presentation.

Over the course of sixty minutes, we spoke about all aspects of eating disorders and their impact on society. In the numerous hours of preparation leading up to the event, I was struck by the reality that events like this do not happen in a vacuum. They require participation from so many people with varying and different talents and skills.

An isn’t that the case with any cause or effort that is just and true? And whereas along with Dr. Setliff, I may have technically “given” the presentation, in truth, I was merely the conduit for a greater message. And it is only because of the input of all of the persons who also believe in this cause, that the event was a success.

Going back as far as Biblical times (or for those of you who do not believe in God), then going back as far as at least 2000 years, the maxim, “It is the power of the message and not the image of the messenger” rings just as strongly today.

THE POWER OF THE MESSAGE … NOT THE IMAGE OF THE MESSENGER

And so, a special thank you to:

Gina Suescan and Tamara Forsyth on Apple’s Wellness Team.

My friend, Diana Sudduth, an Apple employee for 21 years who showed such grace, courage and strength as she fought cancer this past year.

Dr. Stephanie Setliff, a great doctor and now, close friend.

Employees of the Eating Recovery Center who put time and effort into this event.

Elissa Myers, CEO and Executive Director, Ex Officio – The Academy for Eating Disorders.

Dawn Gannon, Deputy Executive Director, The Academy for Eating Disorders.

Dr. Walter Kaye, University of California San Diego.

Vivian Lau, Outreach Coordinator, University of California San Diego

Dr. Cindy Bulik, University of North Carolina Chapel Hill.

Dr. Christine Peat, Director, National Center of Excellence for Eating Disorders.

Jillian Lampert, President – Residential Eating Disorders Consortium.

Bonnie Harken, Managing Director, International Association of Eating Disorders Professionals.

Dr. Anna Scelzo, Chair of Italian Membership, International Association of Eating Disorders Professionals.

Dr. Michael Genovese, Medical Director, Acadia Healthcare

Chris Goetz, Regional Field Trainer, Acadia Healthcare

Nicole Morgan, CEO, McCallum Place

Rachel Levi, Clinical Director, Shoreline Center for Eating Disorder Treatment.

Alexia Mowry, Director of Clinical Outreach, Reasons Eating Disorder Center.

Drew Connell, Clinical Outreach Representative, Center for Discovery.

Tamara Pryor, Executive Director, ED Care.

Grace Fliss, Manager of Community Relations, EDCare.

Helene Simons, Simons Therapy.

Mary Anne Morrow, Director of Communications, Timberline Knolls

Don Blackwell, Of Counsel, Bowman and Brook, LLP

Damian Skinner, Videographer with the patience of Job

Last and certainly far from least, the incredible Patti Geolat of the Something for Kelly Foundation for her daily inspiration, and ability to kick my ass.

We must continue to grow and expand our outreach and impact on mainstream society.

One Life … Two Voices

“In our sleep,

Pain which cannot forget

Falls drop by drop

Upon the heart, until

In our own despair

Against our Will

Comes Wisdom

Through the awful grace of God”

            Greek poet, Aeschylus

            (as quoted by Robert F. Kennedy on the night Martin Luther King, Jr. was assassinated)

Undoubtedly, one of the most difficult and daunting challenges presented to a therapist is when they are confronted with a parent whose beloved child has been taken.  Perhaps it is the ultimate test that pushes to the very limit, that therapist’s training, education, experience, wisdom and insight. That therapist may have been trained at the most elite institutions of higher learning, have decades of experience, and have read countless journals and treatises. But, even that does not fully prepare the therapist for the daunting challenge.

Recently, on social media, a friend posted an article in the Atlantic entitled, “Dear Therapist: I Blame Myself for My Son’s Death.” This article is attached here:

https://www.theatlantic.com/family/archive/2020/09/dear-therapist-i-blame-myself-for-my-sons-death/615982/?utm_campaign=the-atlantic&utm_medium=social&utm_source=facebook&fbclid=IwAR1HEYsor6CN0f2-s8BwcVtgguP1VNwNQwVMoB7jc002HwXHJdqV4IlmvyM

For a parent whose child has been taken, the title alone grips the heart. And yet, the article called to me. And so, I read. On more than one occasion. Then, I attempted to gain some insight into the author. She is a psychotherapist and is well-published. She received her education at among other institutions, Yale and Stanford. She believes there is no “hierarchy of pain.” A topic upon which I agree with her. She believes that therapists must look for the “music under the lyrics” where the therapist looks for underlying reasons as to why the patient is seeing them. Again, we are on the same page. She appears to be reputable, erudite, and compassionate.

She also appears to be attempting to address that one, unique topic with almost a form book, template-like response. A parent’s grief. When it comes to a parent’s grief, certainly remember your education, your experience, call upon all of your wisdom. And know that those elements, those issues will let you do just one foundational thing … and that is, have an open mind and open ears. For there is one fundamental reality when you are confronted with a parent’s grief. And that is … A parent’s grief is as unique as their fingerprints. And uncharted waters can be dangerous waters.

There are certainly some general truths upon which a therapist can rely. After my daughter was taken in October 2016, a friend gave me a card. A card which I cherish today. It read: “When one is faced with unspeakable tragedy, one of three things tends to happen:

1. It destroys them;

2. It defines them permanently in a negative way, or;

3. It fills them with incredible resolve and passion.

By way of example, Brian Loncar was a well-known attorney in North Texas. He specialized in personal injury work and he was financially successful. He appeared to have a blessed life especially after working through some of his own mental health issues. But, his world came crashing down when on November 26, 2016, his beloved daughter Grace, then 16 years old, took her own life.  Less than one month after Morgan had been taken.

On the surface, Grace had it all. On Friday, December 2, 2016, the Celebration of Life for Grace was conducted to a packed church. On Sunday, December 4, 2016, just 2 days later, Brian was found dead in his car in his office parking lot. Although the cause of death was listed as “accidental cocaine overdose,” those who knew him best said he died of a broken heart.

As for the second category, we have all met that grieving parent who has been defined by their tragedy. Although 25 years may have passed, they still speak of their beloved child as if the event had happened the day before. It has crushed their spirit. That type of grieving parent causes us discomfort. They cannot grasp the reality that the world, life itself has moved on. And whereas it remains with them a personal tragedy, the world is just too big to notice after a passage of time. That is a reality that we, as grieving parents need to understand.

I believe that before a therapist can even start to scratch the surface of a parent’s grief, they must first try to determine which of the three categories most likely define their patient. Destruction? Definition? Inspiration?

Those qualities are so very difficult to determine. A skilled therapist must find a way to draw back the veneer of emotions which often exist and hide the substance within. That requires incredible will, insight, compassion. You must look that parent in the eyes. And listen. Listen with your ears. Listen with your heart. Listen with your soul. You are being tested to the absolute height of your abilities and gifts.

For, we grieving parents make so many others uncomfortable. In the eating disorder community, we represent the very worst failure of the industry and community. We are living the manifestation of your failure. And as such, we are generally ostracized. Ironically, we should be embraced. Because for those of us who have the courage, and resolve, and strength, we are your greatest sources of information.

We could provide you with information on what prescription drugs seemed to work and which did not; what types of counseling worked and which appeared to be meaningless; what treatment centers were most responsive; what discharge plans were most proactive; which insurance providers were most responsive; transitional mood swings. A veritable treasure trove of bountiful information. Instead? One recent incident illustrates the contrary reality.

There is one eating disorder organization which holds fundraising walks throughout the year. At their last walk in Las Vegas,  which took place on November 10, 2019,  one grieving mother, a long time eating disorder advocate, raised approximately $1,200 for this organization’s Las Vegas Walk. This mother is also passionate about making sure the eating disorder community remembers those who have been taken.

This mother asked for permission to carry during the Las Vegas Walk, a banner which had the faces of some of those who had died as a result of eating disorders and to read aloud their names. The names of those who have been taken. To Say Their Names. The organization did not allow this.

Now, I understand this organization’s decision. And whereas I strongly disagree with and do not like that decision, this organization has the absolute right to make that decision. If a person does not like the decision, they can invest their time and money elsewhere.

But, that is not the end of the story. In a recent email exchange with that grieving mother, which such exchange was made public, a former officer of that organization engaged in communications which could be construed at best as clueless, at worst as insulting and which resulted in triggering action of the trauma experienced by parents when their child has been taken by this disease. The material parts of this communication include the following from that former officer:

“It has nothing to do with excluding you from walks, but rather is about keeping everyone safe in an environment that promotes recovery. I can tell you for sure, at the height of my eating disorder, if I would have shown up to a walk and heard people talking about their loved ones who died, I would have freaked out and probably given up. I would have thought there was no reason for me to try to find recovery because it was impossible. THIS is why we worry. We need to keep safe the people in attendance who may be teetering on the edge.” [emphasis added]

That mother’s reply was expected, “How disrespectful is that ~ … [this organization], according to our conversations we have participated in here via email, has defined those of us who have lost our child and their memory as outcasts, as dangerous to others, and that we can offer zero in helping anyone. Due to the fact that we lost our child. And we must be silenced… not good.” [emphasis added]

I wish I could say that this type of exclusion of  grieving parents in the eating disorder community is rare. Sadly, it is not. Not one of the eating disorder organizations today have dedicated any permanent place on their websites for remembering those children taken by eating disorders. No grants. No funds. No recognition. No commemoration. We are outcast even though we were forced to pay our dues with the dearest blood possible. We make people feel uncomfortable.

The voices of our beloved children have been silenced. Now, the community seeks to silence the parents’ voices.

That is the type of information, the measurement of the soul, that a therapist so needs in order to best help a grieving parent. No superficial platitudes. No catch phrases. No pity wrapped in false sympathy.

Therapists, a grieving parent presents to you the greatest professional challenge you will ever face. Why? Because you are not just listening to one voice … you are listening to two voices.

And one of those voices is echoing from beyond.

READ THOSE WORDS

On September 1, 2020, complications from anorexia nervosa claimed another life. Keltia Annette “Tia” Franke was taken at 37 years old. In her sleep.

I didn’t know Tia Franke. She had some common friends in treatment with my beloved daughter, Morgan. We were friends on Facebook. I didn’t know Tia. But, walk with me now as we come to know Tia through her many friends on Facebook. Read Those Words. Honor Tia Franke by reading every word … and gaining an insight into her life, her soul.

“It is great sadness and with a very heavy heart to share the sudden, unexpected death of my sweet daughter, Keltia Franke. She was so caring. She had a job that she loved, she was so happy, eagerly living life and excited about the future. The unexpectedness of her death is exceedingly difficult for the Franke family and we are heartbroken to have lost our dear Tia.”

“So heartbroken to hear of my friend Tia Franke’s passing 💔if you’re suffering from an eating disorder, please know you’re not alone and you deserve help. I’ll miss our convos and your constant encouragement. Love you, girl. 💔💔

“I’m HEARTBROKEN to read that a sweet friend I was in treatment with has passed away unexpectedly. Tia Franke you were always so sweet to me and I was so proud of how hard you tried, even when it was impossibly difficult. Ugh I can’t even think straight right now.

If nothing else Tia… I’m so glad you’re at peace now. And thanks for all the times you encouraged me. 😢

Praying hard for your family to feel comfort today and in the days ahead. 💔

“THERE IS LIFE OUTSIDE OF AN EATING DISORDER. Please please PLEASE if you’re struggling, talk about it. Please. You are NOT a burden and there is hope and healing. I freaking hate eating disorders! They keep taking the most precious souls from us!!!”

“I am absolutely devastated to hear that my dear dear friend Tia Franke has passed. I am feeling so many emotions right now. I am currently sobbing, feeling shattered, angry at Eating Disorders, and at a loss for words. I love you so much Tia. Oh what I would give to hug you one last time.”

“Tonight I just found out I lost a very dear friend Tia Franke whom I spent long hours with in treatment in Denver last year. We stayed in touch since and our last contact with one another was late August on messenger… Tia was a real asset in my life.. I’ve been struggling lately with my Eating Disorder and I openly shared with her when she asked me how I was doing. I would usually say I am fine but because was so authentic and easy to love, I was straight forward about myself her. Tia’s response to me was that I can share anything with her. She spoke to be that she will always be there to support me. Then she shared with me that she was starting a new job working from home in Denver how thrilled she was.. Meanwhile, I read just a mother while ago a very devastating post from her dear mother that Tia unexpectedly passed away.. I’m sharing this because I’m needless to say I’m devastated and saddened. And to share with anyone out there that early disorders are real a silent killer… And every person struggling with one, looks different There’s no one way to look with an EATING DISORDER. I’ll tell you though they have the highest mortality rate…I will really miss my friend!!!!”

“Tia Franke was like a big sister to me in treatment. I’m sure everyone from pine remembers her DEMANDING I finish my plate from across the room. What a devastating loss. Eating disorders are EVIL.”

“I can’t believe I would ever have to write these words. It is with overwhelming grief that I relay the sudden, unexpected death of my baby sister, Keltia Franke. She was the funniest, goofiest, most lovingly kind person. I am just so lost and heartbroken. I am so blessed for all the memories you gifted me with, TT.”

“I can’t believe the news I just saw. Tia Franke you will be so terribly missed. You were such a great friend. I will cherish every memory I got to make with you. I am heart broken. I pray for your family and friends and everyone we both knew and hung out with together in treatment. You were so sweet and caring and always in a good mood. I loved talking to you and watching you make blankets. I will never give up fighting in honor of you. 💜💜💜💜I promise you this. I can’t believe this. I am so heart broken.”

“Just found out that my friend from treatment at ERC in Denver, Tia Franke, passed away. Our rooms were right beside each other and she was like my treatment older sister by looking out for me. Tia was always so kind and helped advocate for my health needs. I still remember watching dog videos with her in the med line to pass the time. Eating disorders suck. 💔

“My heart is so sad right now. Tia Franke, I can’t stop thinking about one of our last process groups together in treatment. you had been struggling so much and opened up to all of us. it was one of the strongest, most beautiful and powerful things i’d witnessed. you were always kind to me no matter how much you were struggling and were one of the first people to make sure i felt welcomed and not alone when i first got there. sending so much love and prayers to all of the many people who got the chance to know and love you.”

“I honestly don’t even know where to begin. My heart is broken as I just received the news my dear friend and past roommate Tia has passed away. Heaven gained a strong, beautiful, & compassionate angel.”

“Tia Franke you were truly like a sister to me. I’ll never forget your kindness, love for the specific Charmin commercial, contagious smile even during the hardest days, love for coffee (especially Starbucks instant), morning chats, great sense of humor, and genuine compassion. You are so so so loved. 💗My thoughts and prayers go out to Tia’s family. 💗


“Oh Tia Franke  … my heart hurts. You fought so hard and taught me so much. You were so sweet. Can’t help but remember the time when I was sitting in a room alone sad and you came up to me and basically forced me to color with you even though I insisted I hated coloring, because you knew I shouldn’t isolate. Fly high sweetie, the fight is over and you can be free ❤️

“I’m absolutely devastated and shook to hear a beautiful soul, Tia Franke, was taken too soon. She was light in any room she stepped in and always knew how to make others laugh. My thoughts and prayers are with the Franke family and with anyone affected by eating disorders. They are truly evil illnesses. Rest In Peace, my friend 💜You were inspirational and you are missed”

“At a completed loss for words. My heart just broke. Tia Franke, you will truly be missed. You were an incredibly bright light and such a joy to be around. No matter what you had going on, you always made sure to help others. You talked me through countless breakdowns, as we met my very first time in treatment. I was scared, and you helped me through so much. I miss you, I love you, and RIH.”

“Oh Tia, where do I even begin. I am heart broken to hear of the news of my dear friend’s passing. Over the years you have helped me through some of the darkest moments with your endless compassion, boundless humor and gentle kindness. I will always cherish the matching acorn bracelets we bought together as a token of new beginnings. And laughing together and finding joy in even the most difficult of moments. You epitomized strength and grace and hold an incredibly special place in my heart love. I know you would’ve wanted me to include this so, where is SE and always stay on your left side.

You spread light to all the lives you touched, and my thoughts and prayers go out to Tia’s family💓 Rest easy my friend, you will be greatly missed💛

“My heart is heavy tonight. I found out someone I was in treatment with Tia Franke and was a great support to me passed away. I’m just saddened and without words. Eating disorders steal lives.”

“So sad to hear of the passing if my old friend Tia Franke!! She was always such a bright light! You will be so missed, sweet friend! Tia and Trina Tequila forever! 💔

“I just heard and my heart squeezed. So many truly amazing souls escaping this reality. All Hail the Traveler Tia Franke. A funny, silly, lively and lovely woman. Be blessed and rest in power.”

“Tia Franke every single day in treatment, you always had a bright smile on your face. I know you were struggling, but you continued to be a light for others. You are a wonderful human being and you will be missed dearly. I’m so sorry that this disease took you too soon. Sending love to your family💖

“Tia Franke, I’m not sure how to feel other than shocked and utterly heartbroken. To fight as hard as you did, spend years in treatment centers fighting for your life, just to die suddenly, feels so unfair. Two weeks ago we spoke and you told me how good you were doing and how you were eating 3 meals and 3 snacks every day. And I jumped for joy for you. Tia, you’re my partner in coffee crime, putting fake beetles in offices, Harry Potter weekends, dirt pudding dates, and always having something perfectly clever and hilarious for that moment to say. You’ve been such a good friend over the years. You taught me so many funny things, and lead by example. We discovered together (after getting caught) that eating the tea inside the tea bag isn’t worth missing out on tea the next night. But most of all you showed me that recovery from an eating disorder is possible even for the sickest. You have been the sickest person I have known, and you recovered. How is this fair at all?”

“My heart is broken tonight in hearing about my dear friend’s passing. Tia had a heart of gold and always knew how to bring a smile to everyone’s face. Eating disorders are cruel illnesses. Please keep her family and friends in your prayers❤️ I am so grateful that God crossed our paths. You will be so missed.”

“I am completely heartbroken you are gone Tia.  Such a beautiful soul, a light in the darkness, and a kind friend. You’ve touched so many lives with you beautiful smile, kind words of encouragement, and perseverance in the fight of your life. I am thankful you are at peace, the fight is over sweet angel and you can rest in God’s arms.

Eating Disorders are insidious and claim too many precious lives. To all of my friends still struggling (myself included), I love you and you deserve a life free of this disease ❤️

“How lucky am I to have met someone that makes saying goodbye so hard.” Tia Frank. Thank you for being so caring and listening to me (or just sitting with me even when I was trying to push everyone away) when I was struggling but also helping me play pranks when I needed a laugh. (My favorite one with you was setting all of these different alarms and putting the clocks in the ceiling to later go off for other people to have to find…) I needed someone like that in my life during that time. Thank you for that. You made such an impact on everyone around you. You will be missed so much. Eating disorders suck.”

“My heart is heavy today. Heaven received a beautiful angel. Tia, you were such a sweet and caring woman and an amazing friend. When we were in treatment together you always made sure to check in with me and find a way to make me smile. Every time I see that Charmin commercial I smile because it reminds me of you. You are loved by so many people and will be missed so much!”

“Heartbroken at the sudden and unexpected loss of one of my dearest friends from high school, Keltia Tia Franke.”

“We lost yet another beautiful soul and bright spot in this world. I have so many words and memories I would love to share in honor of Tia, but once again, my words escape me. I couldn’t do her justice even if I tried. I am just at such a loss. This needs to stop happening.  I love all of you more than I can say, and I’m here if anyone needs anything at all. Take care of yourselves, lovelies. It gets better. It has to. 💜

“I generally don’t post about things such as this. I can’t even believe I am typing this. My dear dear dear friend Tia Franke passed away very suddenly. Tia was not someone who I just spent time with in the hospital, she was always alive and full of life. I am so so beyond grateful for the time I had with her outside as well. I wish I hadn’t missed our last drink, It will be one of my biggest regrets. I miss you more than you can imagine, I can’t bring myself to believe any of this is real- I am still waiting for another text to appear. Whomever knew it didn’t know Tia- she was the most genuine hard working sincere kind person I have known. She would always and did go beyond any length to help others. She made me laugh – always- she was both the best roomate i could have asked her, the best person to get a coffee with, she was like a mom to me many times when I needed to, as well as a very close confident and true true friend. I love you, and will never forget you.”

“Tia Franke, you deserve more than a facebook post, you deserve more than words can describe.”

“I keep and asking god why, and to take it back. I spent the entire day yesterday holding onto that stupid corny shell. Without you even knowing it you saved me- I don’t have the words to say nothing can suffice

You helped me feel whole when I wasn’t able to. You taught me how to laugh again, you taught me things I can’t put into writing. And yes you spoke with me, we held each others truths- knowing that no matter what we wonton were somewhere awake at the same time.

Im not going to talk about my memories and moments- I wish I could trade places with you, because the world needs you. I wish I answered your text last week.”

“You deserve the world to stand up together in your name, you deserve to continue to live in in the hearts of others- and you will always always continue to live in mine”

“I am so sad! Tia Franke, you were an amazing human. Always kind and sweet even when you were struggling. You got me though my first awful, unexpected day at IOP. I loved to see you smile, your smile was contagious! I cannot believe you are gone! Love you friend!! We lost one of the most amazing people I have ever know, and Heaven received an angel!!!”

“Tia Franke, you were such a light and comforted me and so many others during our time in treatment together. I am devastated by the news of your passing and will never forget you. I miss you already, angel.”

“To the one & only most beautiful Tia Franke…

Remember when we would play the game “Essence” during group at ERC!?…

This is how I experienced your Essence:

– Your aura is a shimmering iridescent!

– Your smile lights up the world!

– If you were a bumper sticker it would read “Stay Charmin Strong”!

– Your preferred mode of transportation is by the wings of an angel!

– Your not so hidden talent is crocheting!

– If you were an article of clothing you would be an infinity scarf!

– If you were a party favor you would be a kazoo!

– If you were a Dr. Seuss book you would be “Oh, The Places You’ll Go”!

I am so lucky to know you & experience your kind heart & beautiful soul.

Until we meet again…

XOXO

– Mallory Ives — with Tia Franke”

“Hearing the rain this evening has my heart feeling super heavy. Tia Franke,  you were such an Angel in my life and helped me through some really dark moments I wasn’t confident I would get out of. You were the best roommate I could of asked for while in Colorado. I hope your resting easy Angel ❤️

“The world lost a beautiful soul.

This is unfair.

She fought so hard.

This world, my world will never be the same.

I love you, Tia”

“Yesterday I received news that my dear friend, Tia Franke was taken from this earth far too soon. I can hardly believe it’s true…Tia, you were a Godsent through both of my stays at ERC. I will always remember your spot in the rocking chair, plotting ways to get a second cup of terrible coffee, your clever daily pines, our shared love for lulu, deep conversations in my room after HS snack, sitting in line together at the med window, bitching when the boys went over spa time in the morning, bonding over 90s fashion faux pas, your blue eyeliner, your contagious smile and laughter, drinking tea with you at your apartment while talking about our hopes and dreams, your loving bluntness when my ED was raging, and your kind, compassionate, and beautiful soul…

It was so evident that you continued to fight despite tremendous suffering and I am heartbroken that I couldn’t have done more to prevent this from happening. I find peace knowing that you are finally at peace and that ED no longer plagues your mind with his toxic lies. I am comforted in knowing that you are free of pain and suffering that held you captive for so many years. You were like a sister to me and I will forever cherish the memories we made together and hold them close to my heart. I hate Eating Disorders with my entire being and if you are struggling with an Eating Disorder, please, please, please reach out to me. I can’t keep losing people I love to this horrid disease. My thoughts and prayers go out to your family Tia during this difficult time. You will forever have a piece of my heart. ❤️

“Tia, I will never forget your beautiful presence and gentle soul. I’m so angry that anorexia has taken another person, far too soon. Rest In Peace, the suffering is over. You are inspiring so many to keep fighting for their lives ❤️

“Words cannot express the pain and heartache I’m feeling, Tia Frank. I remember the first day I came to treatment you were the first person to comfort and calm the anxiety of all this change. I remember you’re glimmering smile and contagious laugh , I hear it still lingering the halls of pine and you’re warm hugs and kind eyes seeping through the windows of my soul, momma tia is what we used to call you…you truly are a nurturer at heart. Yes I miss you, yes I’m mad that this disorder took you but I’m also aware that you’re not in pain anymore you’re at peace. It gives me more motivation to keep fighting it really opens up my eyes to how evil this Ed really is. I love you Keltia,

Revelation 21:4

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

When you lose someone you love ,

You gain an angel that you know 🕊❤️

“In the past decade, 17 friends lost to eating disorders, the most recent one being the beautiful Tia Franke. And I almost became a statistic as well. I was lucky enough to be a small percentage of those struggling to get treatments and help. I hope that one day, more people are able to have access to treatment and hope.”

“Tia Franke! Keltia (because you know how I love to use full names!). Nooooooo. No. No. No. No. You were sunshine. You are sunshine. This cannot be.

“I am shocked. I am speechless. This cannot be. Send your father my greetings- a man I never met but have no qualms revering based on your words.”

I may not have said it often enough, but you were a ray of light to guide me through some of my darker days. How you smiled and tried even when I knew that, inside, you were far from it. I treasure and will always treasure the intimate conversations we had after lights out. Whispering as I occasionally ducked out as lookout. In the Bonsai Cafe, how I loved sitting next to you or across you to get through some rather dramatic times. Our “late night” tea, glad another day was over. Starting what little shenanigans we could. Dragging you to our lovely group gatherings. Our matching Burberry specs! Our birthdays, so close; I will cherish the fact that we were able to spend them together last year.”

“I do not feel like I have fully accepted this yet. I cannot grasp the concept that your beautiful face, your bright smile, is not a video away; your soothing voice a call away; your precious hugs a flight away. It was mere weeks ago that you told me things were looking up. How my heart lifted, knowing you were finally beginning to get everything you have long deserved. No. You. were. right. there. I refuse.”

“Oh. This is that thing Elizabeth Kübler-Ross teaches us. Well, before I start more aggressive ranting, please take this haiku as a token of my love, respect, and veneration for the magnificent woman you were (on the day we made introductions- you having merely woken up and likely overwhelmed by me being my usual loud and vivacious), are (wherever that may be- free and at peace at last), and always will be (because I assure you that none of us girls will ever forget you)!

with her quiet grace,

absolved and released from pain,

beloved evermore.”

“Tia Franke, I don’t even know where to begin…we were just talking the other day about our dreams, how much you loved your job and as always, encouraging me on my walk through pregnancy while fighting against ED. You were one of my first friends I made at treatment, you had such confidence and strength that radiated from you. We shared so many laughs, tears, inside jokes, and I couldn’t wait for you to meet my son 💙my heart hurts as you were taken far too soon but rejoices that you are no longer in pain ❤️💙you are free my sweet friend 🌻

“Oh, Tia Franke, my heart just shattered 💔I can’t believe you’re gone. When I think of you I remember about all the games you and I would play at ERC Evergreen and how just sweet, beautiful, soft spoken and funny you were 💗we had a lot of laughs and were there for each other on the tough days. You and your family will be in my prayers and you in my heart and memory forever. Fuck this disease for taking you away but knowing the torture of it, I know you fought as hard as you could and I’m grateful for every second you got. You left an impact on me and many many people and I’m a better person after having the privilege of getting to know you. I love you beautiful lady. you can rest now, it was a hell of a fight.”

READ THOSE WORDS!

Read every single word. Every word defining the life of an incredible soul who brought strength, resolve and faith to so many others. Read those words.

To those so-called advocates who are still caught up in their own eating disorders, whose views, advice and advocacy are colored and overshadowed by their own pain … Read those words.

To those organizations who once espoused mighty ideals but who now embrace a dark path of self-righteousness, self-importance and exclusion … Read those words.

To those eating disorder professionals imprisoned by their own egos, inflated self-worth and fear … Read those words.

To those entities and persons who have embraced non-sensical theories and ideas out of their own self-loathing, political agenda and guilt … Read those words.

To those who wallow in the incredible dysfunctionality of the eating disorder industry, amongst its pettiness, its self-interest, its greed, its incompetence, its being infected by irrational, militant activists more interested in assuaging their own guilt and pain at the expense of others … Read those words.

Read those words. Because in doing so, you are not just reading those words. You are instead observing a life. A substantive life. A loving life. An inspirational life. A life which made a permanent, indelible marks on the hearts and souls of those who are still here. A life. An incredible life.

A life. Not a black life, nor a brown life, nor white, nor blue, nor any other color. For a life has no color. A life is incorporeal. A life is the very essence of who we are. A life defines not just us but the impact we leave on others. A life.

The eating disorder community and industry failed you Tia. We failed your incredible life. You are part of that Army of Warrior Angels. But make no mistake, we failed you.

Tia, you are not a statistic. You never will be. You are a life. A life that lives on in each of those persons who knew you, who you inspired, whose lives you filled with hope, strength and faith.

Tia, you are not mere words.

You are a life.

An incredible, endearing, strong, inspirational life.

CELEBRATE, COMMEMORATE AND REMEMBER

 

guardian angel

Today, August 10, 2020 is my daughter’s 27th birthday. Wherever her soul is currently soaring, I am confident she is reveling in the limitless joys and wonders in the universe far beyond our comprehension … and in a far greater capacity than her old man. You see, parents like me make some people uncomfortable.

The issue of how we remember and honor our loved ones who are taken by a mental illness, especially on days usually marked by celebration, is incredibly complex and fraught with peril. In part, because a parent’s grief can be boundless and all encompassing.

With regard to that type of grief, Deborah Carr, PhD and Chair of the Sociology Department at Boston University, stated, “The death of a child is considered the single worst stressor a person can go through … Parents and fathers specifically feel responsible for the child’s well-being. And they’re not just losing a person they loved. They’re also losing the years of promise they had looked forward to.”

Fiona MacCullum, a professor at the University of Queensland explained, “The death of a child brings with it a range of different and ongoing challenges for the individual and the family. Everyday questions such as ‘How many kids do you have?’ can trigger intense distress … Some people do find ways of living with the loss. Others struggle to find meaning in life.”

A strong willed and inspired parent of a child who has been taken by an eating disorder has the potential to make the eating disorder community uncomfortable, nervous, afraid and wary. Not just because a parent’s grief can be incomprehensible. We can summon strength and resolve far exceeding anything the community could possibly imagine. And perhaps most importantly, we are the living manifestation of the industry’s failure. Preventing the death of our beloved child or loved one should be the first, second, third and final goal to achieve in the treatment of eating disorders. And yet, with each death of another beloved child, the industry and community are reminded of their collective failure.

In an article published on June 29, 2020, Laura Collins Lyster-Mensh, the Founder of F.E.A.S.T. phrased it very well: “The F.E.A.S.T. community lost a child today. It could have been any of us. … The loss is immeasurable. Unfathomable. … It could have been any of us. … We failed this person, as a society and as a field. We failed this family. We failed, but this family endures the loss.”

So, how do we honor and remember our fallen children, how do we take a parent’s grief and sorrow and turn it into a message of hope, faith, strength, resolve and inspiration for others?

Both the eating disorder industry and community are at a loss for responding to this need. After a time, most parents who suffer this soul-crushing loss are shuffled to the side, to not only not be heard but not even seen.

So, how do we remember? How do we honor those who were sacrificed on the altar of eating disorders? How do we let those parents know that their sons’ and daughters’ names will be remembered with respect and love? There is a way.

Well written articles are not enough. Memorial quilts are not enough. Banners are not enough. Remembrance, respect and inspiration demand much more. And from these attributes, grow opportunity.

And what an opportunity eating disorder organizations have before them. An opportunity to heal some of the divisions which exist in the community. An opportunity to recognize those whose lives have been taken respectfully and with dignity. An opportunity that turns collective failure into hope for the future.  

An opportunity for the Academy for Eating Disorders, the National Eating Disorder Association, the International Association of Eating Disorder Professionals, any of the private equity owned treatment centers, the National Center of Excellence for Eating Disorders, any of the other associated organizations.

Any or all of these entities, on their website and social media page could dedicate a tab, a hyperlink entitled, “In Memoriam.” Parents or surviving spouses or children could send in up to a thirty second video clip of their loved one to be posted on those organization’s website. A permanent, positive message of hope for the future. A message of remembrance. A message that we all must do better.

But, our fallen children and loved ones demand and deserve much more.

When a loved one is taken, those who are left inevitably face numerous financial matters. Funeral costs and expenses. Unpaid medical bills. Bills, invoices, demands for payment, each one a grisly reminder that a parent’s pain is only beginning.

Any or all of the aforementioned entities could institute an annual “Profile in Courage” honorarium. Any or all of those entities could grant $10,000 to a family who have experienced the ultimate loss, the loss of a child, a parent, a spouse being taken by an eating disorder. Presented at the national or international conference hosted by these entities, the family receiving this grant would know that in a very open, tangible and loving way, their loss is not going unnoticed. Their loss is not being entirely forgotten. And maybe, just maybe, the healing process for them can begin.

We have failed. And with each death, we continue to fail.

But, that failure does not have to be that which defines us. From the ashes of loss can rise inspiration. From the ashes of despair can rise hope. From the ashes of  sorrow can rise love.

Failure is merely the starting point of success. A new path beckons. Let us heed that call.

And … Happy 27th Birthday my beloved Morgan.

MOMO

Thank you Jerry

Jerry

The day started much like any other. Tuesday, July 21, 2020. A brisk, morning power walk. Healthy breakfast. Working on yet again, another legal issue for my younger brother. (That in and of itself, seems to be a forever and on-going thing. On the other hand, it has provided for some past, enjoyable trips to Las Vegas and Southern California before the 2020 Zombie Apocalypse happened!)

Then, the unexpected happened. At 12:54 p.m. Central time, I received a call on my cell phone. “No Caller ID” was listed. That is not all that rare, so I accepted the call.

The person asked if I was Steven Dunn of the “Morgan Project.” Even though he got the name of the organization incorrect, naturally I said yes. He said he had seen my TEDx talk and needed to reach out to me. He identified himself as “Jerry.” Jerry said his daughter was suffering from anorexia and tried to kill herself. Well, previously, he had my curiosity. Now, he had my attention.

I asked where he lived and how old his daughter was. After a brief pause, he said Houston and she was 21. He then said, “He had not been around very much for his daughter when she was growing up, he had had a number of affairs, was not home that much, that he had a Ferrari.” [At this, a yellow flag began to wave. He had described some of my sordid past … except that I had been home and very involved. And yes, I once owned a Ferrari 348TS.] He started saying that he had read so much on the internet about eating disorders and that it seems like the parents are to blame! He said if he had been home more, his daughter would not have had an eating disorder.

I immediately told him that is not the case, it is a biologically based disease with genetic and societal components. He asked how can I possibly believe that since he had read that if a parent is not around, or had affairs, that caused eating disorders. [At that, the Yellow Flag turned Orange]. And how could that parent ever live with themselves knowing they caused his child to have an eating disorder. Again, I assured him that the information he had was not correct and that we know so much more about the disease.

Trying to get him off that track, I asked how long ago his daughter had tried to take her own life. He said 2 weeks. I asked him where she was currently,  he said the “UH Medical Center Hospital.” [Now, there was a full blown Red Flag Alert. The University of Houston does not have a medical center/hospital open to the general public].

I still needed to tread carefully and with compassion in the event he was legitimate and simply had some facts incorrect. I asked him what the next steps were. He said he didn’t know because he and his wife were divorced because of his affairs and they don’t get along. He also asked me if I knew of a Dr. Backal. I briefly hesitated and told him I had a friend named Tom Backal but I had not spoken to him in years. I asked if he meant Dr. Ed Tyson and he said, “No, it’s Backal.” [Tom Backal and I had been very close. But, I have moved away from him in the past 2 years as we were on different life paths. I still hold Tom in high regard.]

I mentioned that Acute Hospital in Denver was the next logical step with ERC here in Texas was a very good place for treatment. He asked if those places were good. I told him that Morgan had gone to each a number of times. He then asked, “If they are so good, why couldn’t they save your daughter?” [Hurricane Warning Sirens are going off by now.] I explained to him the biological aspect of the disease and that Morgan also had a high risk gene in her brain which impacted her oxytocin level which made her recovery so much more difficult.

He came back to, “So it sounds like they really aren’t that good which kind of proves that parents are to blame.” He then asked how can I even function knowing my daughter is dead. 

I told him, sometimes your soul finds you in the hardest, harshest way possible. And when tragedy strikes you, your soul finds a way to strengthen your resolve, to fill you with a purpose in your life that had been forever missing. His reply was, “Surely you must be in great pain every day knowing that you may have had something to do with your daughter dying.”

Even before that statement, it had become clear what this call was about. And clarity was in my mind instead of raw emotion. I told him that some types of pain you never get past completely. But, if I can continue to help get young people into treatment, if I can help identify bad actors and misconduct in the community, if in my daughter’s name, I can save some lives, I told him that that was a pretty good legacy.

I then asked him to give me his email address so I could send him information about Acute, ERC and other providers. He hesitated and then sputtered a bit and said.. uh… Jerrydftbkl@gmail.com. [dft is short hand for Defendant. Bkl? Obviously, an abbreviation for Backal] I told him I would get information to him immediately and he should take quick action on this.  He paused and then said… uh… ok.

Naturally, I sent a test email to that email address and it was returned, no such known email address.

Interesting. Very interesting. He knew quite a bit about me, my less than completely soulful past and he knew my daughter’s name, Morgan. He was obviously trying to get a big, over the top, emotional reaction and trying to inflict some emotional pain. He, or the people behind him, did not receive that satisfaction.

It is sad that in our world today there are people who would plot to cause such pain. I believe in being open with issues and addressing directly those with whom you disagree. That seems to be becoming an almost non-existent quality especially in the eating disorder community. More’s the pity.

I hope that people like the mythical Jerry become even more rare. People like this “Jerry” do not understand, they cannot possibly understand, that through pain sometimes comes clarity of purpose and focus. Those types of people cannot possibly understand that a personal tragedy can build an incredible suit of armor around you while increasing the size of your heart, allowing your soul’s purpose to be revealed to you and giving you incredible strength.

It was a test today. A test of one’s heart. A test of one’s soul. A test to see if the pain, which will always exist within me, has become my master. I will remember fondly today and the test given to me. What an opportunity was given to me to self-reflect and to grow.  To heal. To embrace the hope that exists within me.

In the event “Jerry” was legitimate, I sincerely hope he seeks the help his daughter so desperately needs. I also sincerely hope that he finds help for himself. The sole emphasis of a “parent being at fault for an eating disorder” is so false, so damaging that Jerry will undoubtedly need significant, and expert assistance to help him get through the battles which lie ahead.

In the very likely event that Jerry and his handlers were attempting to damage another fellow human in one of the most inhumane ways possible, I sincerely hope that one day they too seek out and receive the assistance they so desperately need. The damage to their soul has to be so grave to cause them to engage in such hate-filled conduct. I hope they seek such help.

I hope.

And I devoutly hope that the persons like the “Jerrys” out there, find a way to obtain peace in their life.

Shire, Vyvanse and NEDA/BEDA

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Shire Pharmaceuticals (acquired by Takeda Pharmaceutical Company, Ltd in January 2019) is the only pharmaceutical company which manufactures Vyvanse. Vyvanse is at its core, an amphetamine and as such, can be highly addictive. It was initially used to treat ADHD.

But then after years of lobbying, on January 30, 2015, the FDA approved Vyvanse to treat binge eating disorder in adults.

And yet, it was a number of events leading up to January 30, 2015 that are particularly perplexing … and disconcerting.

In 2008, the United States Justice Department sued Shire. The allegations arose from two lawsuits; the first filed by a former Shire executive, the second filed by former Shire sales representatives.  Both lawsuits were filed under the False Claims Act’s whistleblower provisions.

An attorney in these lawsuits stated that, “…a claim Shire made was saying their drug Vyvanse was non-abusable. That turned out not to be true. It turned out that kids could abuse the drugs, and were doing so.” The government contended that no study Shire conducted had concluded that Vyvanse was not abuseable, and, as an amphetamine product, the Vyvanse label included an FDA-mandated black box warning for its potential for misuse and abuse.

Finally, in September 2014, Shire reached a settlement with the Justice Department. The settlement included resolving allegations that Shire sales representatives made false and misleading statements about the efficacy and “abuseability” of Vyvanse to Medicaid committees and to individual physicians. Shire also purportedly made unsupported claims that Vyvanse would prevent car accidents, divorce, arrests and unemployment.

Shire also agreed to pay $56.5 million to settle these false marketing, whistleblower lawsuits.

Four months later, the FDA approved Vyvanse. And yet, there is more.

In the approximate 18 month period before gaining FDA approval, Shire donated $450,000 combined to the Binge Eating Disorder Association (“BEDA”) and the National Eating Disorders Association (“NEDA)” to fund “awareness activities.”

In 2014 alone, Shire made a $250,000 donation to NEDA.

And questions must be asked as to why, especially when one considers …

While Shire was negotiating to resolve the claims regarding its egregiously false marketing, it was paying both NEDA and BEDA to engage in marketing and thereby increase awareness for Vyvanse.

Even still, the money train for NEDA and Shire continued.

In 2015, Shire funded NEDA to the tune of $500,000.

In 2016, Shire made another $500,000 donation to NEDA.

In 2017, Shire increased its funding to NEDA to $950,000.

In 2018, Shire made another $950,000.00 donation to NEDA.

The amounts contributed in 2017 and 2018 constituted approximately 25% of NEDA’s annual gross operating budget.

Which begs the question, why would a multi-billion dollar pharmaceutical company, on the heels of paying a $56.5 million dollar settlement to the Department of Justice pay NEDA/BEDA large amounts of money to market a drug the FDA had not yet approved?

We know that our friends at the National Eating Disorder Association do not conduct scientific research into eating disorders.

We also know that our friends at the National Eating Disorder Association do not establish nor amend treatment guidelines let alone generally accepted treatment guidelines for eating disorders.

After its merger with the Binge Eating Disorder Association, our friends at the National Eating Disorder Association are centering binge eating disorder and bulimia nervosa. Binge eating disorder … the only eating disorder for which Vyvanse is indicated.

So, who financially benefitted? And what services were NEDA/BEDA required to perform for that money?

Certainly the adage, “Follow the money” has never been more enlightening.

The 2018 third quarter earnings report for Shire disclosed sales of Vyvanse of $595 million.

Fierce Pharma, an industry watchdog group, issued its latest special report findings on July 13, 2020. Takeda/Shire was included in the pharmaceutical companies being analyzed. Fierce Pharma estimated that sales of Vyvanse in 2019 alone was $2.55 billion.

Meanwhile, the recent United States Deloitte Economic Report indicated the mortality rate for eating disorders is worse than believed.

As for NEDA/BEDA, it was able to acquire office space in Midtown Manhattan. The lease for that office space was renewed in 2019 resulting in an annual, year-end rental rate of:

2020 –          $324,732

2021 –           $330,757

2022 –           $337,517

2023 –           $377,554

2024-           $817,504

2025-            $817,504

Funding from Shire/Takeda and other large donors allowed NEDA/BEDA to compensate their current officers, directors and key employees approximately $259,000 [pre-BEDA merger] It allowed NEDA/BEDA to pay “other” salaries and wages in the amount of $1,375,110. It allowed BEDA/NEDA to pay their lobbyist approximately $178,545. And their results?

If an organization is making significant breakthroughs in the area of research into this deadly disease, perhaps those numbers could be justified. If an organization was working with doctors and clinicians, attorneys and insurance executives to finally draft and incorporate generally accepted standards of care, again, perhaps those numbers could be justified. If an organization is successfully pursuing lobbying for bills which will result in millions of dollar in research so that we may better understand and treat this deadly disease, perhaps those numbers could be justified. If not?

In any event, in Part Two of this series, we shall investigate what BEDA/NEDA does, what their focus is, and the direction they appear to be going.

Covid-19 or Eating Disorders… Which has the better claim for a Social Justice Component?

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Recently, the CEO of one eating disorder group stated,  … “ … we just want you to know that our commitment to anti-racism and dismantling systemic oppression in the eating disorder community is ongoing and will continue to permeate every aspect of our work.” [emphasis added] Good Lord.

More facts, tangible evidence, including scientific evidence, exists establishing that Covid-19 is a social justice virus than exists showing eating disorders are a social justice illness let alone systemically oppresses some segment of those who suffer from this deadly disease.

Dr. Anthony Stephen Fauci, an American physician and immunologist, has served as the director of the National Institute of Allergy and Infectious Diseases since 1984. He is generally regarded as the foremost authority on Covid-19. With regard to Covid-19, Dr. Fauci stated the following:

“Social inequalities are among the factors behind why the black community in the United States has “suffered disproportionately” from Covid-19.”

“African-Americans have suffered disproportionately from coronavirus disease. They’ve suffered in that their rate of infection is higher because of the nature of the economic status that many of them find themselves in where they’re outside working, being unable to physically separate.”

“And then when they do get infected, given the social determinants of health which make it for them, have a higher incidence of diseases like hypertension, obesity, diabetes.”

“They are at much greater risk of suffering the deleterious consequences including death.”

If you consider some of the initial statistics, you will see that nationally, African-American deaths from COVID-19 are nearly two times greater than would be expected based on their share of the population. In four states, the rate is three or more times greater.

In 42 states plus Washington D.C., Hispanics/Latinos make up a greater share of confirmed cases than their share of the population. In eight states, it’s more than four times greater. 

A study conducted by NPR finds that in 32 states plus Washington D.C., blacks are dying at rates higher than their proportion of the population. In 21 states, it’s substantially higher, more than 50% above what would be expected. For example, in Wisconsin, at least 141 African Americans have died, representing 27% of all deaths in a state where just 6% of the state’s population is black.

According to Dr. Marcella Nunez-Smith, the Director of the Equity Research and Innovation Center at the Yale School of Medicine, “African-Americans have higher rates of underlying conditions, including diabetes, heart disease, and lung disease, that are linked to more severe cases of COVID-19.”

Nunez-Smith also stated, “They also often have less access to quality health care, and are disproportionately represented in essential frontline jobs  that can’t be done from home, increasing their exposure to the virus.”

Latinos and Hispanics test positive for the coronavirus at rates higher than would be expected for their share of the population in all but one of the 44 jurisdictions that report Hispanic ethnicity data (42 states plus Washington D.C.). The rates are two times higher in 30 states, and over four times higher in eight states. 

The non-partisan group, American Public Media (“APM”) Research Lab recently released new figures and information under the title, “Color of Coronavirus.” This study provided further evidence of the staggering divide in the Covid-19   death rate between black Americans and the rest of the nation. That study found, “Across the country, African Americans have died at a rate of 50.3 per 100,000 people, compared with 20.7 for whites, 22.9 for Latinos and 22.7 for Asian Americans.” The study later held, “More than 20,000 African Americans – about one in 2,000 of the entire black population in the US – have died from the disease.”

Those grim numbers and statistics paint a picture illustrating the ramifications of long term societal neglect. And if “Social Justice” is defined as “Equal rights, equal opportunities and equal treatment for all,” those forbidding numbers and statistics reflect the results when true, social injustice is present. True social injustice does not exist in a vacuum. The ultimate consequence of social injustice is often a disproportionately higher mortality rate. A direct correlation between social injustice and mortality rates.

To exacerbate the reality of this situation, those persons who attempt to refute those numbers, statistics and talking points are forced to argue against the scientific evidence, facts and logic supporting those numbers. Because scientific research does not support their argument, they must find a way to attack science. And this too, is a problem.

On this issue, Dr. Fauci stated, “One of the problems we face in the United States is that unfortunately, there is a combination of an anti-science bias that people are — for reasons that sometimes are, you know, inconceivable and not understandable — they just don’t believe science and they don’t believe authority.”

He also stated, “It’s amazing sometimes the denial there is. It’s the same thing that gets people who are anti-vaxxers, who don’t want people to get vaccinated, even though the data clearly indicate the safety of vaccines.” “That’s really a problem.”

Social justice issues inextricably intertwined with a higher mortality rate. Scientific evidence supporting the correlation between the two. Some of the foremost experts in their fields linking the two together. That constitutes direct correlation between social justice issues and adverse consequences of not addressing them. And yet, in the eating disorder community?

And meanwhile, in the Eating Disorder World

In the eating disorder realm, we are facing the antithesis of this reasoning. A very small group of advocates is trying to elevate their voices to become a mighty cacophony of noise. They are attempting to elevate the alleged social injustice encountered mainly by women in larger bodies to “the” ultimate place of prominence in the eating disorder community.

Despite reams of scientific research to the contrary, they claim that eating disorders are social justice issues. It is not enough to say, “Eating disorders are complex medical and psychiatric illnesses that can have serious consequences for health, productivity and relationships. Eating disorders, including anorexia nervosa, bulimia nervosa, binge eating disorder and OSFED (other specified feeding or eating disorder), are bio-psycho-social diseases.” That yes, with certain eating disorders, there is absolutely a societal component which must be included and addressed.

Because they have no scientific research supporting their position that eating disorders are social justice issues, they attempt to attack the research community and question the validity of past studies. When the highest mortality rate is shown to be as a result of anorexia nervosa (which is generally not the eating disorder impacted by societal issues), those voices simply attempt to change the narrative, the facts and statistics, hope that no one notices, and when they are called out on their inaccuracies, refuse to issue retractions. They then attempt to silence the voices who support scientific research and accurate numbers. In Dr. Fauci’s words, “ … [it is] inconceivable and not understandable — they just don’t believe science and they don’t believe authority.”

To exacerbate this reality, the eating disorder industry universally does not impose any consequences for their reprehensible conduct. There are no ramifications for behavior that is harmful or bullying. The eating disorder industry has enabled this reality and now, must live with the consequences of its own inactivity and acceptance of incompetence and misguided leadership.

Deaths in the black community from Covid-19 are the result of generations of social injustice. The mortality rate, facts, evidence, and scientific research combined demonstrate the serious ramifications of social injustice when a society is hit with a deadly virus.

In the eating disorder realm, those clamoring that eating disorders are social justice issues do not have the higher mortality rate, facts, evidence or scientific research supporting their views. They only have the ability to loudly trumpet their own unsubstantiated, uninformed, and uneducated opinions colored by their extreme political and societal views.

And all the while, the horrific death toll that anorexia nervosa enacts continues unabated.

THE UNITED STATES DELOITTE ECONOMIC REPORT

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On November 6, 2019, the Academy for Eating Disorders (“AED”) in conjunction with the Strategic Training Initiative for the Prevention of Eating Disorders: A Public Health Incubator (“STRIPED”) a research and training program based at the Harvard T.H. Chan School of Public Health and Boston Children’s Hospital, announced that they were collaborating with economic consulting giant Deloitte Access Economics to develop the most comprehensive report to date on the social and economic costs of eating disorders in the United States.

On Wednesday, June 24, 2020, the US Deloitte Report was released. A copy of the Report is embedded here:

Deloitte Report

The Deloitte Report is a ninety-one (91) page document. It is broken into seven (7) distinct sections:

  1. Background
  2. Prevalence
  3. Case Studies
  4. Financial Costs
  5. Loss of Well Being
  6. Best Practices
  7. Conclusions

The Report includes ten (10) separate charts and forty-six (46) different tables. In short, the Report is designed to provide an extensive breakdown and analysis of the social and economic costs of eating disorders in the United States.

Because of its length, this article will attempt to succinctly highlight the important aspects of relevant sections. Note that the Report is statistic intensive and requires careful consideration and analysis.

[The language provided below under each section is largely pulled verbatim from the Report.]

Background

The Background section identifies the types of eating disorders studied. It then explained the cost analysis of eating disorders (“EDs”) were estimated from a societal perspective for the fiscal year between October 1, 2018 and 30 September 30, 2019 (referred to as “2018-19” in the report) using cost-of illness methods.

Costs were then estimated using a prevalence approach, where prevalence was estimated based on a combination of nationally representative surveys and modelling studies in the US. Costs were then primarily generated by multiplying prevalence by mean incremental costs for people with EDs across a range of cost components, which included:

  • financial costs to the health system (e.g. costs of providing care in hospital and residential treatment facilities, and visits to primary care provider and other health services).
  • productivity costs from reduced workforce participation and reduced productivity at work, loss of future earnings due to premature mortality, and the value of informal care (lost productive income of caregivers who provide help to people with EDs).
  • other costs, which include transfer costs, and their associated efficiency losses, or reduced economic efficiency, associated with the need to levy additional taxation to fund the provision of government services.

Prevalence and Mortality

Based on current lifetime prevalence, incidence and mortality data, the Report estimated that 28.8 million Americans alive in 2018-19 will have an ED at some point during their life – either in the past, present or future.

The Report states that the overall one-year prevalence of EDs was estimated to be 5.48 million cases. Prevalence was estimated to be higher in females 4.39 million cases compared to males 1.09 million cases. (approximately 80% females, 20% males)

It was estimated that 21.0 million people in 2018-19 have had an ED at some point in their lives, of which 14.4 million cases occurred in women and 6.6 million cases occurred in men. The overall lifetime prevalence of EDs was estimated to be 8.60% among females and 4.07% among males.

Evidence cited in the Report suggests that EDs are associated with substantial excess premature mortality. An authoritative meta-analysis found that mortality rates were 5.86 times higher than the general population in people with anorexia, 1.93 for bulimia, and 1.92 for eating disorder not otherwise specified (EDNOS). When these rates were extrapolated in the Report, it was estimated that approximately 10,200 deaths (ranging between 5,500 and 22,000 deaths) were associated with EDs in 2018-19.

This equates to approximately one death every 52 minutes. And yet, it must be noted that this mortality rate is estimated and includes deaths believed to be associated with ED conditions, NOT directly caused by ED.

Financial Costs and Well Being

The total financial costs associated with EDs were estimated to be $64.7 billion in 2018-19, which equates to $11,808 per person with an ED. In addition, EDs are also associated with a substantial reduction in well being among people with EDs, which resulted in a further (non-financial) value of $326.5 billion.

Of total financial costs ($64.7 billion), health system costs made up 7.0% of the total, accounting for $4.6 billion. Of this expenditure, $363.5 million was paid by Americans in out-of-pocket costs to manage their ED.

Productivity costs make up the largest share of total financial costs (75.2%) while efficiency losses account for 7.4%. Informal care, which is care given free of charge, accounted for the remaining 10.4% of financial costs attributed to EDs in 2018-19 (measured as the caregivers’ forgone labor earnings).

It was estimated that government bore 27.5% of total financial costs, with the remaining costs shared across individuals (29.0%), employers (25.2%), society and other payers (11.0%), and family or friends (7.3%).

Cost Effectiveness of Best Practice Intervention and Prevention

Another primary focus of the Report was to summarize evidence pertaining to the cost-effectiveness of stepped care and integrated care models, which the Report asserts are recognized as best practice in the care of people with EDs.  

Stepped care is an evidence-based, staged system comprising a hierarchy of interventions, from the least to the most intensive, meaning that treatment is available to meet an individual’s needs at the point in time that they require the treatment.

Integrated care is characterized by the comprehensive delivery of health services, designed according to the multidimensional needs of the population and delivered by a coordinated multidisciplinary team of providers working across settings and levels of care.

As the Report notes, often, there is little distinction between stepped and integrated care models in the evidence base. However, stepped and integrated care have been separately discussed in the Report as they can involve different care settings – for example, stepped care for an individual may include residential care following by an intensive outpatient (IOP) program, while a program delivered solely in an outpatient setting could still be integrated care.

The Report acknowledges there is limited literature evaluating the cost-effectiveness of the stepped and integrated models of care. Outcomes have been shown to improve with stepped care treatment compared to CBT alone (although it is recognized that CBT is often delivered as a treatment within the context of stepped care), and the time burden upon caregivers diminished substantially.

The incremental cost-effectiveness ratio (ICER) was $12,146 per person who abstained from BN behaviors for stepped care and $20,317 for CBT, suggesting that stepped care may be superior to single step interventions delivered in isolation.

The integrated care model is likely to provide cost-effective treatment by better offering multiple disciplines (e.g. medicine, nutrition, psychology/social work and psychiatry) to support a patient’s individual needs and their symptoms.

Partial hospitalization programs (PHPs) may also offer significant cost savings compared to inpatient care.

Unfortunately, the Report did not address proactive, prevention strategies and the amount of revenue that would be saved or recaptured by investing in those strategies instead of paying for reactive, treatment costs on the back end. This omission is both curious and glaring since the 2012 Australian Report estimated that for every $1 spent in proactive, preventive care, it saved approximately $4 on reactive treatment care on the back end.

Necessary Research Identified

The Report identified four (4) areas of research which are crucially needed to expand our understanding of eating disorders:

Research to estimate the cost-effectiveness of stepped, integrated care models to reduce the burden of ED in the United States and this research should be undertaken as a priority;

Research to determine the long term impacts of eating disorders and the impact of co-morbidities on the costs associated with eating disorders;

Research to estimate the costs that may be prevented through early intervention and prevention of eating disorders;

Research to understand and estimate the additional costs of eating disorders that may be attributable to structural racism and other structural oppressions in the US.

it should be noted that no lobbyists or eating disorder organizations are currently pursuing any bills which would provide funding for any of these areas of research.

Application in the Industry

The Report is an expansive report and is deserving of careful analysis and research to determine what applicability, if any, it may have to medical providers, mental health providers, insurance benefit providers, large corporations and governmental entities. Potentially, its application and use in the United States could be invaluable. At the same time, some glaring omissions in the Report could undermine its usefulness.

The Report could be the foundation upon which eating disorder bills in the nation’s capital and in state capitals could be based. Long abandoned bills which once emphasized research could be resurrected since they would now be supported by objective, third party information, statistics and facts. Research exploring that aggressive, preventive, proactive measures with possible pharmacological involvement could be pursued. Or, the Report could be lost in the ocean of white noise which seems to define the eating disorder industry.

How will the Report be utilized?

During the seven season run of the television series, “The West Wing,” the fictional character, President Josiah Bartlet [played by Martin Sheen] repeatedly asked his White House staff, “What’s next?”

Bartlet explained his catchphrase’s intent during a flashback to the campaign trail. Bartlet and his team are discussing strategies for securing his nomination for the presidency. When a character belabors a proposal, Bartlet counters, “I understood the point…. When I ask ‘What’s next?’ it means I’m ready to move on to other things. So, what’s next?”

So with regard to the Report and its usage and application in the medical, mental health, legal, corporate and governmental areas, the question needs to be asked, “What’s next?”