“If I had an hour to solve a problem, I’d spend 55 minutes thinking about the problem and 5 minutes thinking about solutions.”

          Albert Einstein

“Building a community is not a zero sum game in which there are winners and losers; if everyone engages, they and the entire community can all be winners.”

          Brad Feld, American Author and Investor

__________________________________________________________________

The World English Dictionary defines “Zero Sum Game” as a “contest in which one person’s loss is equal to the other person’s gain.”

The eating disorder industry, i.e., research funding, funding for treatment, media attention, clinical care can never be treated as a Zero Sum Game. It is not only counterproductive but harmful to all since it inhibits collaboration, creates divisiveness and results in individualist mentality, an “us versus them” mentality. It is imperative to avoid any type of Zero Sum Game bias at all costs.

Sadly, on September 19, 2019, the eating disorder community was subjected to a Zero Sum Game bias in an egregious and reprehensible manner. To exacerbate the damage, this harm was inflicted by none other than a group which markets itself as a parent support group for families impacted by eating disorders. 

History of F.E.A.S.T.

Families Empowered and Supporting Treatment for Eating Disorders (“F.E.A.S.T.”) came into existence in 2007. Its initial purpose was to focus on parents of family members afflicted with eating disorders. 

F.E.A.S.T.  invited clinicians, researchers and activists in the field to serve as advisers and mentors. They have a Board of Directors and Advisory Panel who live and work in several countries.

From 2008-2010 they were exhibitors at the National Eating Disorders Association (NEDA) annual conferences. In 2018 they held their first “FEAST of Knowledge” at the Academy for Eating Disorders ICED conference in Chicago. A similar event was held in New York City on March 17, 2019. 

F.E.A.S.T. provides online services, such as a live Support Forum for Caregivers and Family Guides which are available at all hours of the day for families seeking information and support. They also maintain a list of support activities and a list of advocacy resources in every region.

They recently announced a collaboration with Project HEAL to start a Communities of Healing with Caregivers. They also recently started a “Tough Topic Thursday” video presentation in which they seek to address difficult or controversial topics impacting the eating disorder industry.

There is no denying that F.E.A.S.T. does some important work.

Ideally, F.E.A.S.T. should represent all persons affected and impacted by eating disorders, be it anorexia, bulimia, BED or the other DSM-V recognized variations and would never emphasize one aspect of the disease over another. Eating disorders are NOT a Zero Sum Game. To attempt to use “Zero Sum Game Bias” would betray the very principles F.E.A.S.T. purports to hold dear and would be sending a clear message to parents that certain sufferers’ conditions need to be deemphasized so that a “Stalinesque utopia of equality for all, quality for none” can be implemented and maintained.

Which makes the discussion on their Tough Topic Thursday held on September 19, 2019, entitled, “Why DO we talk more about Anorexia?” all the more perplexing.

The topic: Why DO we talk more about anorexia?

The first indicator of concern is that the title itself is inartfully worded and presents this topic in a negative manner. A simple change in the title along the lines of, “Let’s Increase and Improve Awareness and Study of BED and Bulimia” would have presented the topic in a nonconfrontational, non-Zero Sum Game, positive manner. However, F.E.A.S.T. chose not to approach the topic in this manner. Accordingly, they have to accept the consequences for this ill-fated decision.

The next indication of justifiable concern arose a few days prior to this event. As part of its Public Service Announcement, F.E.A.S.T’s Founder and Executive Director, Ms. Laura Collins Lyster-Mensh (“Ms. Collins”) published the following statement, “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. I have some thoughts on why that is, and how it can be addressed, and guess what: F.E.A.S.T is having a Tough Topic Thursday live broadcast and we want your thoughts, your participation, your voice. Send us comments in advance, mark your calendars, and tell your friends!” [emphasis added]

Irritated or infuriated … Irritated or infuriated? With regard to attention being given to the deadliest of all eating disorders, the Founder of a family based organization which advocates on behalf of parents whose children suffer from eating disorders is irritated or infuriated because she believes anorexia gets too much attention? And she is supposed to be the voice for parents whose children are suffering and dying from anorexia?

Ms. Collins defines herself as a writer. Accordingly, we can presume that she writes what she means and means what she writes.

And so, I listened to the broadcast several times. [It is left up on F.E.A.S.T.’s Facebook page.] Among the people who appeared and contributed were Courtney Banks and Lauren Mulheim, Psy.D., a psychologist from Los Angeles. Ms. Muhlheim is listed on F.E.A.S.T.’s Board of Advisors.

Ms. Collins also appeared and presented.  

Unfortunately, there was a legion of misinformation and flat out errors  throughout the broadcast which need to be addressed.

The Misinformation

Ms. Collins spoke about some of the “myths” of eating disorders. Unfortunately, some of Ms. Collins’ myths were themselves myths and to call them grossly and factually incorrect would be charitable.

The most egregious example of Ms. Collins’ “Flight of Fantasy” is when she stated, “Another myth is that anorexia is more deadly … It doesn’t seem to be more deadly. The 10% mortality rate seems to be true across all eating disorders including binge eating.”

No, Ms. Collins, it is your statement that is deadly … and horrifically incorrect.

First,  no studies have ever been released indicating the mortality rate amongst all eating disorders is ten percent (10%). It is mystifying from where that number was derived.

With regard to mortality rates among eating disorders, the latest peer reviewed, authoritative study was entitled, “Mortality in eating disorders – results of a large prospective clinical longitudinal study” and was published in the International Journal of Eating Disorders in April 2016. This study addressed Standardized Mortality Rates (“SMR”) with regard to eating disorders. SMR is a ratio  between the observed number of deaths in a study population and the number of deaths that would be expected, based on the age and sex-specific rates in a standard population. If the ratio of observed/expected deaths is greater than 1.0, there is said to be “excess deaths” in the study population.

For eating disorders, this study found the following SMRs:

1.      5.35 for Anorexia Nervosa;
2.      1.49 for Bulimia Nervosa;
3.      1.50 for Binge Eating Disorder, and;
4.      2.39 for narrowly defined ED-NOS

This study also found that patients with anorexia nervosa died earlier than patients with BN, BED, or ED-NOS all of which did not significantly differ.

This study concluded, “Mortality in AN is excessive and considerably higher than in BN, BED, and ED-NOS.” [emphasis added]

An Abstract of this Study is set forth below.

Research Study

To ignore this Study is reckless, foolhardy and irresponsible. Especially since the accuracy of this Study is cited with authority by one of the very experts whom F.E.A.S.T. showcased on this broadcast, Lauren Muhlheim. Ms. Muhlheim, quoted these very same statistics in an article she published on September 23, 2019 … just FOUR days after she appeared on this broadcast. Her article notes that it had been medically reviewed by a board certified physician.

Ms. Muhlheim’s article begins with the statement, “We often hear about the dangers of obesity, but we hear less commonly about the risks of eating disorders.”  Doesn’t this statement, along with the excessive SMR for anorexia contradict the very premise of the ill-fated broadcast?

According to Ms. Muhlheim, after citing the statistics in the aforementioned Study, she states, “In a study by Fichter and colleagues, individuals with anorexia nervosa experienced a standardized mortality rate of 5.0 – that is, they were five times more likely to have died over the study period than age-matched peers in the general population. Individuals with bulimia nervosa and binge eating disorder had a standardized mortality rate of 1.5 (were 1.5 times more likely to die than peers without eating disorders).”

Ms. Muhlheim’s article is set forth below.

Muhlheim Article

If that one study is not sufficient enough, we can consider findings from 36 other studies.

In 2011, a meta-analysis of 36 studies on mortality rates of eating disorders was published. The results? The SMR for eating disorders were as follows:

1.      5.86 for Anorexia;
2.      1.93 for Bulimia;
3.      1.92 for Eating Disorders Not Otherwise Specified

The Abstract from this Study is set forth below.

SMR Meta-Analysis

Ms. Collins’ statement, “It doesn’t seem to be more deadly” is contradicted by all of the relevant facts. It is contradicted by all of the research studies. It is contradicted by the very expert F.E.A.S.T. allowed on the broadcast.

Unfortunately, this misinformation was parroted by another presenter, Courtney Banks, a post-doc therapist at UC San Diego who stated, “ … I think … we are often times so … you know, confronted with this idea that anorexia has the highest mortality rate of any mental illness … which … you know … is not true.”

There are already far too many false mantras in the eating disorder community. This false premise is one that needs to be addressed and refuted. And refuted in the strongest manner possible. Especially since it is the strongest foundational pillar of F.E.A.S.T.’s Tough Topic Thursday broadcast. When that pillar falls, the rest of F.E.A.S.T.’s topic likewise fails.

Certainly not everything Ms. Collins said was inaccurate. With regard to the prevalence of anorexia, in 2017, the National Institute of Mental Health cited the following statistics:

1. The overall prevalence of binge eating disorder in adults was 1.2%;
2. The overall prevalence of bulimia nervosa in adults was 0.3%, and;
3. The overall prevalence of anorexia nervosa in adults was 0.6%.

So, yes, anorexia is not as prevalent in adults.

Another item which Ms. Collins got correct was the need to talk about eating disorders as if it were more on a spectrum and that the “pie needs to be expanded and grown,” instead of shrinking down certain pieces.

Indeed, Ms. Collins briefly attempted to take the topic away from a Zero Sum Game but then, she and her guests jumped right back into the topic of attempting to lessen the attention given to anorexia so that more attention could be given to bulimia and BED. So, let’s attempt to answer the question presented by the topic as succinctly as possible.

“Why DO we talk more about anorexia?”

Assuming arguendo, this premise is accurate, we talk more about anorexia: (1). Because studies show that anorexia tends to get its deadly claws into our children at an earlier age, and; (2). Anorexia is nearly FOUR times deadlier than any other eating disorder! In fact, if you combine the mortality rates of bulimia and binge eating disorder, they still do not equal the SMR of anorexia!

To me, and to many others, the finality and heartache of the death of a beloved child is so much more significant than whatever “privilege” or “stigma” is being trotted out by the Social Injustice Warriors.

Along with Ms. Collins’ initial statement that anorexia gets too much attention and her false statement about mortality rates, she made additional statements of an equally troubling nature.

For example, she stated, “The thought that anorexia is special has caused us problems that we are having trouble unwinding.”

First, I am not sure how anorexia is “special” other than it claims the lives of significantly more victims than the other eating disorders and at a younger age. It is also unclear who the “us” is. Does Ms. Collins mean the militant HAES movement, the Eating Disorder Taliban or the Social Injustice Warriors? Also, it is unclear as to what the problems consist of referenced by Ms. Collins, or what trouble “unwinding” them refers to. However, what is clear is for any parent whose beloved child is suffering from anorexia, or who has died from complications from anorexia, this statement is certainly cause for concern. And is particularly insulting.

Ms. Collins also stated, “There’s a false sympathy that gets associated with anorexia and not with the other eating disorders.”

False sympathy? False sympathy pertaining to a deadly disease, a disease nearly four (4) times more deadly than the other eating disorders? False sympathy? I challenge Ms. Collins to approach any parent whose child has died from anorexia and initiate a conversation about false sympathy.

Ms. Collins also stated, “Why are they only doing research on anorexia?”

No, Ms. Collins. Again, this is inaccurate.

Attached below is a website listing twenty-six (26) clinical trials involving the study of bulimia nervosa:

Bulimia Research Studies

In addition, Drexel University conducted a six (6) year long study entitled, “Bulimia Nervosa: A Biobehavioral Study (The Eating Disorder Study) (TEDS). This Study concluded in May 2018.

Bulimia was specifically included in an extensive research project undertaken by UC San Diego in which over 5000 participants contributed information.

The University of Chicago conducted a study on adolescents with bulimia nervosa and their families and included participation in a 6-month outpatient treatment research study.

Stanford University conducted a 5 year NIH sponsored study examining the effectiveness of 3 outpatient therapies for bulimia nervosa (BN).

The Johns Hopkins Eating Disorders Program conducted a study which sought women 18-40 years old with bulimia nervosa interested in a research study funded by the Klarman Family Foundation. The study included a health assessment, blood testing, and pictures of the brain taken using a medical scanner.

In 2016, a team of researchers at the Stanford University School of Medicine sought adults with either bulimia or binge eating disorder to participate in a study assessing whether a new combination of medication lessens symptoms of these illnesses.

A list of these studies could go on page after page.

Ms. Collins continued to dig her grave ever deeper by also stating, “Weight stigma is an enormous part of our problem with the centering of anorexia.”

Again, who is the “Our” in “Our problem?” And the “centering of anorexia” is not justified since it only has the highest death rate by far? Further, what authoritative legislative, medical or corporate body has rendered the opinion that anorexia is being centered? However, this statement begins to show Ms. Collins’ true colors. Weight stigma may be your perception. The excessive mortality rate of anorexia and the fact that it impacts our children at an earlier age is the basis of the “centering of anorexia,” assuming that premise is even accurate.

She followed that statement with this remark, “Weight stigma, I believe to be an enormous part of why we like to talk about anorexia more than we are comfortable talking about the other eating disorders.”

No, Ms. Collins. Had you done your research, you would know that families tend to talk more about anorexia: (1). because studies show that anorexia tends to get its deadly claws into our children at an earlier age, and; (2). anorexia is nearly FOUR times deadlier than the other eating disorders!

On September 19, at 2:01 p.m., the F.E.A.S.T. Facebook page contained the following language: “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?”

“Join F.E.A.S.T. for another Tough Topic Thursday live discussion to explore why anorexia nervosa gets the attention: the history, the controversies, the harms, and some interesting ways we can change this problem as a community.” [emphasis added]

I, along with the thousands of families who mourn the death of their beloved child from anorexia are unaware that drawing attention to a deadly disease was a “problem.” Those same families most assuredly are also unaware that a fringe element of the eating disorder community wants to change this. And beginning with F.E.A.S.T.’s broadcast and continuing during the subsequent Weight Stigma Awareness Week sponsored by HAES/NEDA this horrible “Parents’ Club of Death” claimed two more families.

Less than one week after F.E.A.S.T.’s Tough Topic Thursday live discussion to explore why anorexia nervosa gets too much attention, I was made aware of two more deaths … due to anorexia. Two, more beautiful daughters. Two more families who will be forced to live with the agony of overwhelming grief. Two more sets of parents left to endure pain that no parent should ever have to carry. I am sure these two families would have embraced the opportunity to join this tough topic discussion … to take F.E.A.S.T. to task for their ill-advised, irresponsible conduct. Instead, they are left mourning their beloved daughters being taken.

Nonetheless according to F.E.A.S.T., anorexia gets too much attention, which in and of itself, is a problem and it must be eradicated. It is incredible to believe that a responsible, parent based organization would hold such irresponsible thoughts to be true. It stretches the imagination that they would then attempt to support that false premise with blatantly incorrect statistics, statistics which were disproven by one of their very own panelists four (4) days after this event! 

Any rational person would hope that this article would make F.E.A.S.T. think twice before putting out any additional inaccurate and dangerous misinformation. But unfortunately, F.E.A.S.T. probably will never read these words. In the past year, Ms. Collins requested me to stop posting articles like this on F.E.A.S.T. social media sites. I send these articles to all of the leaders in the eating disorder industry and community especially when the topic of the article pertains to any specific leader.

Information and knowledge are power. And parents have a right to know everything that is going on in the industry. Nonetheless, I acquiesced to her request. Then, last week, Ms. Collins requested that I stop sending articles directly to her.  I understand that sometimes past articles have had an aggressive “tone.” But, the facts have been solid. And, I do meticulously research before posting. When I have been wrong, I have publicly stated I was wrong and printed a retraction and correction. Accurate information and knowledge are crucial.

And so, if the tone of the articles is displeasing to Ms. Collins, I make no apologies. The revelation that far more people are suffering from eating disorders than originally believed is a reality. More children are dying. Whatever the industry and community are doing is not effectively working. My beloved daughter is dead. Two more daughters of whom I am aware, were taken in the past month. Our beloved children are dying and parents have a right to know all facts which impact the community.

And F.E.A.S.T.’s “Tough Topic Thursday” did nothing but insult the parents of children who were ripped from life by anorexia and insult the very names, memories and legacies of our beloved children.

Finally, if you are a parent and your child is suffering from anorexia, you need to think very carefully about whom you support and who is standing up for you … and the life of your child … and who is not.  

On September 13, 2019, United Behavioral Healthcare through its servicing arm Optum (“UBH”) made a stunning announcement regarding new level of care guidelines for treatment of mental health disorders.

UBH’s Announcement

To this end, on its own website, UBH announced, “Optum is adopting the Level of Care Utilization System (LOCUS), the Child and Adolescent Service Intensity Instrument (CASII) and the Early Childhood Service Intensity Instrument (ECSII) for guidance on clinical criteria decisions for the treatment of behavioral health conditions across most Commercial and Medicaid membership.”

They also announced, “Please note, we will continue to use The ASAM Criteria, developed by the American Society of Addiction Medicine, as the clinician criteria for substance use disorder services.”

The effective dates for the implementation of LOCUS, CASII and ECSII (“L/C/E”) are as follows:

“In the following states, the adoption of LOCUS will begin December 13, 2019, with CASII/ECSII becoming effective on January 31, 2020:

A copy of UBH’s announcement is set forth below:

UBH Announcement

UBH’s announcement was nothing short of remarkable. It was also done as quietly as possible with no major press release or media involvement.

UBH is implementing and presumably will be enforcing guidelines developed by third parties to guide payment/treatment decisions for their insureds. Every clinician and provider of mental health services who accepts UBH will have to develop a greater awareness of these standards and guidelines. Coverage for treatment of mental illnesses, be it admission standards, IOP and PHP standards, requests for on-going care will become more predictable if these guidelines are adhered to by UBH. The Peer Review process arguably will dramatically change since UBH’s internal and outside peer review professionals will now have to comply with objective criteria instead of criteria vetted by the financial and accounting departments at UBH. Certainly, good news. But, this announcement also opens the door to questions.

For example, if UBH is just now embracing these guidelines, what “guidelines” were they using before? Were their prior guidelines deficient? If payment for treatment was denied using their prior guidelines, does that open the door for reconsideration of prior claims which were denied using those guidelines? Does the fact that they are adopting those particular guidelines definitively establish them as setting the benchmark criteria for generally accepted standards of care?

They attempt to answer some of these questions on their FAQ page, a copy of which is attached below:

FAQ to UBH’s Announcement

According to UBH, they changed their prior level of care guidelines because the L/C/E “guidelines have been externally validated; that common language drives improved care and the six dimensions provide a more holistic view of acuity and chronicity of behavioral condition, thereby promoting more appropriate care for patients and a better overall experience.”

For some reason known only to God and broccoli, UBH failed to mention that they also presumably changed their guidelines because a federal court decision held their prior guidelines were grossly deficient if not outright fraudulent.

What this means for UBH’s insureds

As these guidelines are phased into UBH’s business structure, on the surface it could mean more objective, more certain, more reasoned decisions to pay for mental health treatment. It should result in fewer claims being denied. Treatment providers have direct knowledge of the guidelines being used to make payment/treatment decisions. They have their patient’s medical records and mental health condition at hand. Providers can assemble and present a more compelling case for treatment to UBH. This potentially means greater access to more life saving treatment being made available for their insureds.

On the surface.

Whether UBH will actually in good faith follow through with good faith evaluation of claims made under their new guidelines is another matter. Is it reasonable to believe that UBH received a message from God and now intends to comply with those objective guidelines and pay for life giving treatment whereas in the past, they implemented policies designed to not only evade the Mental Health Parity Act of 2008 but which inflicted actual harm upon their insureds?

The $64,000 Questions

UBH’s bad faith was exposed by the court in the Wit case. Are we now to believe that they have “turned over a new leaf,” and are ready to put the needs of their insureds over corporate profits? The answer to this question could lie in looking at the Announcement and the FAQ page on the Optum website.

To begin with, on UBH’s Announcement, it states, “Please note, we will continue to use the ASAM Criteria, developed by the American Society of Addiction Medicine, as the Clinician criteria for substance use disorders.” The problem is … the Court in Wit specifically found that UBH did NOT comply with the ASAM Criteria! The Court specifically held:

“UBH’s Guidelines deviate from these [ASAM] standards in a multitude of ways, as set forth above. This has been the case throughout the Class Period, including before and after the 2013 publication of the ASAM third edition. Indeed, in an internal UBH email exchange in 2012 with the subject line “Use of ASAM criteria poll,” one of UBH’s regional medical directors opined that the ASAM Criteria “usually will result in more authorization as they are more subjective and broader than our LOCG/CDGs.” See, Wit Order at paragraph 150.

UBH claims they are adopting the new guidelines because those guidelines have been externally validated, the common language drives improved care and, ” … The six dimensions provide a more holistic view of acuity and chronicity of behavioral condition, thereby promoting more appropriate care for patients and a better overall experience.”

In essence, UBH claims that these changes were done out of a magnanimous sense of obligation to their insureds. The insureds with whom they have a fiduciary relationship. The insureds with whom they have a duty of good faith and fair dealing. The insureds whom the Wit court found they betrayed. The insureds they lied to in their Announcement.

In the last day, I have spoken with a number of people insured by UBH. I asked if they have heard of, or received anything from UBH about this incredible advancement. Each person said “no.”

If this decision was made solely because it was in the best interest of their insureds, that UBH was only thinking about the mental health of their insureds, isn’t this news that UBH would trumpet on all social media sites? With the PR machine that a multi-billion dollar conglomerate like UBH owns and controls, you could have news stories in every major newspaper and on every major network. Imagine the positive press you could engender from this type of announcement. And yet, nothing. Nothing reported on the Optum social media sites. Nothing on the UBH social media sites. No news stories. No internet stories. Just one story on UBH’s own website. Why? Don’t your insureds have a right to know this information? Don’t the doctors and treatment professionals fighting with UBH’s peer review doctors on a daily basis have a right to know this information?

UBH certainly did not simply undertake this change and unprecedented conduct out of the goodness of their hearts or for philanthropic reasons. So, why did they undertake this action and why now?

The obvious answer is that their conduct came about because of the Wit case.

A Brief Recap of Wit

On March 5, 2019, Magistrate Judge Joseph C. Spero of the United States District Court for the Northern District of California [San Francisco] issued a 106 page Findings of Fact and Conclusions of Law [Judgment] in the case of David Wit, Individually and on Behalf of Others Similarly Situated, et al v. United Healthcare Insurance Co., et al, Civil Action No. 3:14-cv-02346.

Judge Spero eviscerated United Healthcare not only for the manner in which it operated its guidelines, policies and procedures, but the very manner in which it formulated those guidelines. Each of United Healthcare’s expert witnesses were deemed not credible or only partially credible.

In determining the generally accepted standards of care, the court in Wit relied upon the following criteria:

1) The American Society of Addiction Medicine Criteria (“ASAM Criteria”) [now adopted by UBH];

2) The American Association of Community Psychiatrist’s (“AACP”) Level of Care Utilization System (“LOCUS”) [now adopted by UBH];

3) The Child and Adolescent Level of Care Utilization System (“CALOCUS”) developed by AACP and the American Academy of Child and Adolescent Psychiatry (“AACAP”), and the Child and Adolescent Service Intensity Instrument (“CASII”), which was developed by AACAP in 2001 as a refinement of CALOCUS, and [CASII now adopted by UBH];

4) The Medicare benefit policy manual issued by the Centers for Medicare and Medicaid Services (“CMS Manual”).

Is it a mere coincidence that UBH announced it was going to utilize LOCUS, CASII, ECSII and ASAM? These are the very criteria relied upon by the Court in Wit in determining generally accepted standards of care. Only after being pushed against the wall did UBH finally acquiesce and undertake conduct which should have been taken many years ago.

Generally accepted standards of care for mental health. Objective third party criteria establishing generally accepted standards of care for the treatment of mental illnesses. Adopted by a federal court and now being adopted by the United States largest provider of payment services for mental health claims. The importance of this announcement and its ramifications cannot be understated.

And yet, something is missing. What about eating disorders?

The Eating Disorder Industry’s Lack of Generally Accepted Standards

We previously set forth that in the international eating disorder industry, seven (7) different organizations had published seven (7) different standards in seven (7) consecutive years. So, which of the (seven) 7 various standards did the Court adopt?

None.

Now, consider the lost opportunity. Had the eating disorder industry put aside its collective egos, and silo mentality, and ivory towers, and insular private equity financial reality, standardized criteria leading to generally accepted standards of care could have been thoroughly vetted and adopted by the industry. In all reasonable likelihood, the Court would have adopted these standards and guidelines. And it is likely that UBH would now be adopting those standards as well. But now?

It very well could be that the Court, through the Special Master it appoints may take the position since the eating disorder industry could not get its collective act together, it will appoint its own experts and devise its own standards and guidelines for eating disorders and enforce those.

And if that happens, and those guidelines are drafted and adopted by the Court and enforced against UBH, the ramifications for the eating disorders industry could be extreme. Assuming this fact scenario comes to fruition and the case survives the inevitable appeals including through the United States Supreme Court, the eating disorder industry would then be faced with the reality that its generally accepted standards of care were drafted and implemented without input from some of the greatest minds in the eating disorder industry.

And yet, because they survived judicial challenge and were enforced against the largest behavioral health insurer in the United States, the treatment centers, doctors, counselors, and organizations will in essence be forced to adopt those same guidelines. Failure to do so could result in accusations that the generally accepted standards of care are not being followed and as a result, malpractice claims will spike and centers which do not comply will be looked upon as “rogue” clinics placing their own confirmation bias above the needs of the patients as defined by the generally accepted standards of care.

That is the reality the eating disorder industry faces today. The clock is ticking. The Hering case filed in Florida tracks the Wit case and if it proceeds like the Wit case, the court in Florida could, and in all legal probability, will adopt and enforce the rulings from the federal court in San Francisco.

The clock is ticking.

The eating disorder industry can no longer hide and play the safe, wait and see game. Universal guidelines will be adopted in the very near future. The biggest question the eating disorder industry faces is, “Will we bit a part of it?”

J.D. Ouellette is a bleeding-heart, tree hugging, egghead liberal. We disagree on practically everything … education, the extent of gun control, school prayer, defense spending, taxes, political issues and many aspects of the eating disorder industry.

(JD [far left… how fitting!] on Nancy Pelosi’s office balcony.)

And yet, there are very few people in the eating disorder community whom I respect more.

To those who may be mystified by this statement, one need only review the close friendship which existed between Supreme Court Justice Ruth Bader Ginsberg and the late Supreme Court Justice Antonin Scalia.

During their time together on the United States Supreme Court, Justice Scalia, a staunch conservative, and Justice Ginsburg, a staunch liberal, rarely found themselves on the same side of controversial issues. More often than not, their written rulings were polar opposites since they looked upon application of the Constitution to our laws through very different lenses. However, even this brought a greater depth to their friendship, as they were known for their respect, deep admiration, and mutual exploration. 

Often standing on opposite sides of arguments, Justice Ginsburg admitted that she “disagreed with most of what he said” but “loved the way he said it.” More importantly, Justices Scalia and Ginsburg demonstrated that it is possible to separate a person from his or her ideology or political views.

Today, that sort of mature professionalism and respect seem to be sorely lacking in the eating disorder community. Division on professional and intellectual issues rapidly denigrate to a division on a personal basis which drive people and organizations apart. Needlessly so.

 I first got to know Jennifer Denise after my daughter Morgan died and I began to get more involved in the eating disorder community. Through groups on Facebook and other social media, JD posted her strong opinions. I remember reading some of the posts on her Facebook wall and thinking, “this woman has a crazy gene coursing throughout her body!” But, I continued to read. Then, I began to respond, more often than not, disagreeing with her post.

This led to our first telephone discussion. I remember this call distinctly because JD talked, uninterrupted for 44 minutes straight. After the call concluded my thoughts were, “I like this person. And, I admire her passion.”

I discovered that JD’s involvement in the eating disorder world was cemented due to her family’s circumstances. In 2012, the youngest of her four children, while a senior in high school had anorexia nervosa enter their lives. She experienced this disease first hand as a mother. She studied voraciously. And her daughter survived and is on a good path. And so too, JD’s path was set.

We continued to have communications and a greater understanding between us began to emerge. I saw her in Chicago at the ICED 2018 Conference held by AED. Then, in October 2018, the Morgan Foundation held a screening of the documentary, “Going Sane.” This documentary features Joan Riederer and her daughter Erin’s story. The producer of the documentary, Lisa Sabey graciously agreed to come to Dallas to talk after the screening. Elissa Myers, the Executive Director of AED likewise appeared. JD reached out to me and stated she would love to attend and appear as well. When I stated that funds for the Foundation were still very tight, she said she would appear at her own expense.

JD appeared and spoke to the attendees that night. She took time from her busy schedule to fly to Dallas and support my family, a family who forever will suffer the scars inflicted by eating disorders. And that is a special gift that will be cherished.

Since that time, JD and I continued to disagree on many topics. But once again, her character and strength were demonstrated this past year. The college at which she was an administrator abruptly closed. And so, facing an uncertain future, JD boldly persevered. I am not surprised by this perseverance.

Just before she decided to stop applying for jobs and open her own peer coaching practice, she applied for her dream job as a Program Manager for the UC San Diego Extension School running their Lactation Educator workshops.  When she did not hear back from the university for some time, she embraced that soulful quality which points us in the direction our lives are intended to journey. She started the process to utilize all of the experience she had learned and began to form a peer coaching practice. But again, life happened.

UC San Diego offered the position to her, a dream job. And undoubtedly, sleepless nights ensued as she wrestled with a life altering decision. Naturally, I again was not surprised when she chose the most difficult path of …

She negotiated the UC San Diego position to twenty (20) hours a week which she could do while building her own peer coaching practice.

One may very well wonder how she is handling an overwhelmingly busy schedule. So, in her own words, JD lets us know:

“I am loving life! The coaching business is really amazing – helping support my family by helping other families is so fulfilling. I am developing a niche in working with families to get young adults to “voluntarily” admit and so far I am batting 100%. Working with parents and then parents and child on Skype and with shared documents to collaborate on plans is so helpful. I’ve had 3 young women tell their parents I make them feel safe and hopeful – can’t ask for more than that.

She also stated:

“Fighting an eating disorder is a fearsome task; you are literally fighting to save your loved one’s life. For me, it was the hardest thing I have ever done and it rocked our family to the core; the overwhelmingness of it is huge, and that was when our experience included the best treatment possible, almost immediately. It taught me much about what is needed to get a loved one well and the awesome power of cutting edge education for parents plus specific skills training and support.

I can provide that via Skype, phone, and text. I believe having a trained peer support coach/mentor will save you time, energy, money and quality of life as you navigate this as my testimonials support. I look forward to connecting with and helping you.

As an informed, educated, experienced international peer support provider, I understand the spectrum of hurdles a family faces and the variations among systems and with insurance, as well as being cognizant of cultural norms. I have dealt with many iterations of family dynamics and diagnoses and co-occurring conditions, and I have a personal library of books, articles, videos, and podcasts I curate and add to daily so I can target your resources to your individual needs. I have connections with professionals and peer supporters and advocates across the world who are as eager to help families as I am.

I use a lot of analogies and visualization in my coaching, so think of yourself as learning to ride a bike with my help – I am going to explain to you how a bike works, spend some time running alongside you holding onto the handlebars and seat, cheer you when you take your first wobbly solo spins around the parking lot, help you dust yourself off if you fall, and be available if the bicycle needs a tune-up.”

Strong, intelligent, independent and fiercely passionate. All that and she is a bleeding-heart, tree hugging, egghead liberal!

At the funeral for Justice Scalia (whom Justice Ginsberg at times referred to affectionately as “Nino”) Justice Ginsberg stated, “Once asked how we could be friends, given our disagreement on lots of things, Justice Scalia answered: “I attack ideas. I don’t attack people. Some very good people have some very bad ideas. And if you can’t separate the two, you gotta get another day job … How blessed I was to have a working colleague and dear friend of such captivating brilliance, high spirits, and quick wit.”

How blessed indeed. And what high praise.

As for praise regarding J.D., if anyone ever posed the following question to me, “If my daughter were still alive, would I be comfortable with J.D. being a mentor to her?”

My response? “Damn straight I would.”

J.D. lives in the San Diego, California area and can be found at http://www.jdouellette.com

On September 19, 2019, Chase Bannister, the President of the Board of Directors of the Eating Disorders Coalition (“EDC”) appeared before the National Institute of Mental Health National Advisory Mental Health Council. This was an open policy session.

Some of Mr. Bannister’s more poignant remarks were as follows:

“This mortality rate underscores the severity of this illness, as it is common for individuals with eating disorders to have co-occurring medical and behavioral health conditions, increasing the complexities of proper intervention and treatment.”

“And these disorders seem to be on the rise, both here and around the world.”

“Proper intervention and treatment for any condition requires an investment in research.”

“Amongst all psychiatric conditions, … funding for eating disorder research remains among the most discrepant from the burden of illness they represent.”

“Meaningful progress in eating disorders treatment and intervention will only by realized to the extent we meaningfully invest in its science.”

“On behalf of our 56 member organizations and the millions of Americans we serve, I urge the Council to advise NIMH to increase research funding for eating disorders.”

That same day, the Eating Disorder Coalition issued its press release which quoted Mr. Bannister in material part, as follows: “For too long, research funding for eating disorders has been an order of magnitude away from what’s necessary. Meaningful progress in eating disorders treatment and intervention will only be realized to the extent we meaningfully invest in its science. We call upon NIH – and all who make or shape policy – to invest in eating disorders research. To do what’s necessary.”

Strong, noble words. Words worthy of concerted action. Words for which one should be held accountable.

I wholeheartedly applaud Mr. Bannister for these sentiments. I agree with the substance of these statements. Truly for progress to happen, for lives to be saved, we must emphasize investment in scientific research. This is the true life blood which will result in improved treatment protocols, in establishing industry-wide generally accepted standards of care and in saving many, many lives.

With such noble, strong words, let us explore how Mr. Bannister, the Eating Disorder Coalition and the other eating disorder organizations which help shape policy and which have a presence on Capitol Hill are backing up these words with equally bold, affirmative action.

It is unfortunate that no written expression is as effective as the sound of crickets in the background to fill those times of awkward silence. For that is the most accurate description of the inaction undertaken by the eating disorder industry on this critically important issue. No action at all.

The three eating disorder entities paying a lobbyist on Capitol Hill are the EDC, our friends at the Residential Eating Disorder Consortium (“Consortium”) and the HAES Movement f/k/a the National Eating Disorder Association (“NEDA/HAES”). Using EDC’s own words, these three organizations are entities which clearly, “… make or shape policy.” They collectively employ a small lobbying group named “Center Road Solutions.” And they pay that lobbyist very well.

In 2019, the EDC has paid Center Road Solutions $60,000.00.

In 2018, the EDC paid Center Road Solutions $120,000.00.

In 2017, the EDC paid its former lobbyist $120,000.00.

In 2019, the Consortium has paid Center Road Solutions $80,000.00.

In 2018, the Consortium paid Center Road Solutions $140,000.00.

In 2017, the Consortium paid its former lobbyist $70,000.00.

In 2019, NEDA/HAES has paid Center Road Solutions $40,000.00.

In 2018, NEDA/HAES paid Center Road Solutions $80,000.00.

In 2017, NEDA/HAES paid its former lobbyist $70,000.00

This combined total is $780,000.00.

So again, Mr. Bannister’s own words, “Meaningful progress in eating disorders treatment and intervention will only be realized to the extent we meaningfully invest in its science,” provide ample justification to speculate as to the amount that that $780,000.00 was utilized to pursue scientific research on new eating disorders bills in Congress. These three entities clearly help shape policy on eating disorders. Pursuant to a public statement made by Mr. Bannister, the president of one of those entities, they have the duty to seek funding for scientific research since this is the only manner in which meaningful progress in eating disorder treatment will be realized.

And yet, how much of that $780,000.00 was utilized to introduce new bills establishing Centers of Excellence in Eating Disorders? How much of that $780,000.00 was utilized to introduce a bill which addressed the need to establish and define the most effective, scientifically based treatment for eating disorders? How much of that $780,000.00 was utilized to establish a collaborative academic and corporate based center where generally accepted standards of care based on scientific and clinical evidence could be established?

It is unfortunate that no written expression is as effective as the sound of crickets  in the background to fill those times of awkward silence. For that is the most accurate description of the answers to those questions. That is, none.

The only thing that saved Mr. Bannister from public humiliation was that no one on the National Institute of Mental Health National Advisory Mental Health Council had conducted sufficient research on this issue. If so, the following question surely would have been proffered:

WHY SHOULD THE NATIONAL INSTITUTE OF MENTAL HEALTH INCREASE SCIENTIFIC RESEARCH FUNDING FOR EATING DISORDERS WHEN YOUR INDUSTRY’S OWN ORGANIZATIONS RESPONSIBLE FOR THE DIRECTION OF ITS LOBBYISTS ARE NOT PURSUING THIS SAME FUNDING?

Why indeed.

Sometimes, the sound of crickets can become a mighty cacophony of noise drowning out all other sound … even the sound of awkward silence.

Most people know the term “a red herring.” A red herring is a diversion, something that misleads or distracts from a relevant or important question. In a literal sense, there is no such fish as a “red herring.” Instead, it refers to a particularly strong kipper, a fish (typically a herring) that has been cured in brine or heavily smoked. This process makes the fish particularly pungent smelling and with a strong enough brine, turns its flesh reddish.

The term was popularized in the early 1800s by English pamphleteer, William Cobbett. He wrote a story about dragging a kipper (a strong-smelling smoked fish) across trails to divert hounds from chasing a hare.

A red herring may be a logical fallacy or a literary device that leads readers or audiences toward a false conclusion. And we must be particularly careful to know the difference between a “red herring,” and actual issues which confront us.

On September 5, 2019, the case of Susan Hering, on her own behalf and as the representative of her beneficiary daughter, and on behalf of others similarly situated vs. New Directions Behavioral Health, LLC and Blue Cross Blue Shield of Florida, Inc., Civil Action No. 6:19-cv-01727-RBD-DCI was filed in the United States District Court for the Middle District of Florida.

The case was assigned to the Honorable Roy B. Dalton, Jr. Judge Dalton was nominated to the bench by President Barack Obama in 2011. He is the 2019 recipient of the Chief Justice’s Distinguished Federal Judicial Service Award. This award recognizes an active or retired federal judge for outstanding and sustained service to the public, especially as it relates to the support of pro bono legal services. In addition, Judge Dalton was recognized for his work in assisting plaintiffs pro se, that is those litigants who cannot afford an attorney and who represent themselves.

So why are those facts significant? Judge Dalton is the type of judge who is looked upon in the legal community as being more “plaintiff friendly.” Initially, this bodes very well for the plaintiffs in the Hering case.

And why is this significant and what does this have to do with the eating disorder industry?  The Hering case in many ways mirrors the Wit case filed in San Francisco by the Zuckerman law firm. The same law firm represents the plaintiffs in the Hering case. Brian Hufford, who spoke at the 2019 AED ICED Conference in New York, upon being admitted for the Hering case will be one of the lead attorneys. And this time, Blue Cross is the prey.

Briefly Revisiting Wit

On March 5, 2019, a federal district judge in San Francisco issued a sweeping judgment holding that United Behavioral Healthcare/Optum (“UBH”) on a class wide basis violated its fiduciary duties and improperly denied payment for treatment. The ramifications and remedies for this bad faith conduct have yet to be finalized.

The judge in the Wit case found that UBH implemented guidelines which did not comply with any applicable standards of care, that UBH sought the input of their accounting department to lessen the benefits they would be forced to pay and they acted in bad faith toward the persons, their insureds, with whom they have an absolute duty of good faith and fair dealing.

Assuming the court grants Plaintiffs’ request for remedies, a Special Master will be appointed to create treatment guidelines with which UBH will be forced to adhere. UBH will be forced to comply with those standards of care. Its employees involved in the claims process, from the lowest claims reviewer to its management staff to its outside peer review doctors will all be required to be retrained by a Special Master regarding those guidelines, ERISA and bad faith refusal to comply with ERISA. Its accounting and finance departments will be banned from having any input. This Special Master will oversee the claims process and the guidelines. UBH will be prohibited from utilizing its former, unfair and biased guidelines. And the eating disorder industry has been shut out from drafting those guidelines.  

The rules will be changed. Fairness and equity will be mandated. And the class members, the people insured by UBH will finally receive what they have been paying for; fair, objective insurance benefits.

There will be literally hundreds, if not thousands of eating disorder claims resubmitted by the 50,000 plus class members. (Recall the daughter of one of the named plaintiffs suffers from eating disorders and was denied admission to Monte Nido) And yet, no eating disorder specific guidelines will be utilized in assessing eating disorder claims. And why is that?

Because there ARE no eating disorder specific guidelines generated by the eating disorder industry which were looked upon as being authoritative enough to establish the applicable standard of care.

The eating disorder industry in the United States has not been able to collaborate and devise generally accepted, authoritative guidelines. Guidelines which establish generally accepted standards of care. Guidelines that could have been utilized in the Wit case. Guidelines that could have been imposed upon the largest provider of behavioral healthcare benefits in the United States. Guidelines that could have been utilized to battle insurance providers and to contradict their “toady” peer review doctors who unfairly deny requests for coverage. Guidelines that could have saved lives.

It is too late for the eating disorder industry with regard to the Wit case.

So, a Special Master will be tasked to do what the eating disorder industry has not been able to do in its entire existence, that is, to craft generally accepted eating disorder guidelines with which an insurance benefit provider will have to comply.

Let that sink in.

A Special Master, presumably one or more people who do not have a lifetime of training in treating eating disorders will be tasked by a United States District Court judge to draft treatment guidelines for eating disorders. Guidelines with which UBH will have to comply.

And if each and every person and organization who claim to have the expertise, desire and ability to craft guidelines designed to save the lives of those suffering from eating disorders do not have overwhelming and incredible feelings of shame, they damned well should.

YOU have failed the eating disorder community.

YOU have failed each and every person whose lives were ripped away by eating disorders.

YOU have failed each and every family who had a loved one taken by eating disorders.

YOU have failed each and every person who struggled, fought with and were scarred and damaged by eating disorders.

YOU … HAVE … FAILED!

And while Rome  burned, what has the eating disorder industry been doing? At the end of August, a group which calls itself either the ED Organizations Reunion or the Eating Disorders Leadership Summit conducted a virtual meeting. [Never mind the fact that the name was purloined from a group which held meetings in 2016 and 2017 and then dissolved because of a lack of consensus and vision.] AED, EDC,  Alliance for Eating Disorders, NEDA, REDC, ANAD, IAEDP, and F.E.A.S.T. met [virtually] for a “semi-regular meeting of organizations.” “Among the topics were a talking points project and how to productively address controversial issues in our field.”

One of these so-called leaders issued a statement that, “The project to agree upon statistics and talking points has been in the works for a few years, and led by informationist Millie Plotkin from the Eating Recovery Foundation’s Eating Disorders Information Gateway. (EDIG). A draft copy of the talking points is being circulated and vetted by experts in the field and we hope it will be published jointly and housed on the AED website. Having good numbers on who are affected by eating disorders that is well-sourced is an important milestone for the field.”

The final statement of this group quoted herein states, “The eating disorders community has historically avoided both conflict and collaboration, but there is too much suffering that is going unaddressed and no time to waste,” one person said after the meeting. “Where there are differences of opinion we need to face them directly. Where there are opportunities to do good work together we need to support one another.”

After decades of in depth study and research are we left with the reality that the “fearless leaders” of these organizations have finally agreed to a talking points project and how to productively address controversial issues in our field? That is it?

Nothing about pushing for funding and additional grants for research? Nothing about emphasizing treatment for those who cannot afford treatment? Nothing about recognizing the lives of those who have been taken by this disease? Nothing?

YOU HAVE FAILED US. Even our court system recognizes that you have failed us.

And yet, is it too late? Can things be salvaged?

The Hering case … a second bite at the apple

Months ago, we stated that there are other cases pending in the United States in which insurance providers’ baseless guidelines are at issue. And now, we present to you the Hering case.

Like the Wit case, Hering is a text book example of an insurance company and its servicing arm being out of control, drunk with power and concerned exclusively with increasing their profit margin.  And similar to Wit, when the Hering plaintiff pleads that Blue Cross’s medical necessity criteria are inconsistent with generally accepted standards of care, no reference is made to eating disorder industry generated guidelines as constituting generally accepted standards of care. The same can be said about:

1. Admission criteria for residential treatment;
2. Residential continued treatment criteria;
3. Medical necessity criteria, and;
4. Medical necessity criteria development and adoption processes;

The closest the Hering lawsuit comes to referring to eating disorder criteria is a passing reference to the American Psychiatric Association Practice Guidelines for the Treatment of Eating Disorders, Third Edition.

The Hering case makes reference to the eight (8) generally accepted standards of care relied upon by behavioral healthcare professionals adopted in the Wit case.

In short, the eating disorder industry is on the brink of losing the ability to determine and dictate the applicable standards of care to treat eating disorders. If the plaintiffs are successful in the Hering case and the Court through a Special Master implements generally accepted standards of care and treatment guidelines which insurance companies are required to adopt and comply with, then the eating disorder professionals will have completely lost their way. Treatment will be dictated by the court system … and not by medical, mental health and research professionals.

If the eating disorder industry does not find a way to expeditiously  create and implement generally accepted criteria and guidelines for treating this deadly disease, then they would have once again, failed us, failed the patients, failed the families and failed the survivors. Time waits for no one.

The clock is ticking.

The time for bold action is passing us by.

And the cost for this inaction is being paid once every sixty-two (62) minutes.

On August 13, 2019, WW (“Weight Watchers”) launched its WW/Kurbo app, an alleged free nutrition and weight-loss app for children as young as eight (8) years old. Issues and questions were immediately raised concerning the release of this app. And with regard to the eating disorder industry, the initial inquiry must first be, why should the heart and soul of the eating disorder industry care about this particular app? Shouldn’t the criticism and complaints be left to the fringe elements in the industry? Yes, we understand that this app could possibly lead to disordered eating. But, isn’t this the bailiwick of the HAES movement, the neo-NEDA and the militant anti-diet and weight loss movement? Isn’t this really their monkeys?

The Background of the App

WW acquired the nutrition app Kurbo in 2018. It then spent a year purportedly developing it, allegedly consulting with experts and adding features like breathing-exercise instructions, a Snapchat-inspired interface and multi-day streaks to encourage “regular” activity. The app was designed to allow children (or parents on their behalf) to enter their height, weight, age and health goals, then begin logging what they eat.

The WW/Kurbo app ranks food choices using a purported, Stanford University developed “traffic-light” system: Green items are “go foods” that can be eaten freely; yellow foods should be consumed in moderate portions; and red foods should make kids “stop and think.” For a fee—starting at $69 for a month—weekly video coaching is also available. Coaches employed by WW/Kurbo are allegedly trained to pick up on signs of disordered eating or unhealthy weight loss.

WW/Kurbo explained that the app was designed to be a new tool for the millions of “obese” children in the United States struggling with their weight. They also anticipated outrage for potentially furthering unhealthy body standards and eating behaviors. With regard to the latter issue, the eating disorder community did not disappoint.

Eating disorder counselors, dietitians, nutritionists, advocates and activists grabbed their pitch forks and burning torches and aggressively spoke out against it. An eating disorder treatment center based in New York reinstated its campaign against WW. It generated a petition demanding the WW/Kurbo app be taken down. (The petition currently has in excess of 110,000 signatures). It is planning a demonstration at 8:00 o’clock a.m. on Friday the 13^th of September at WW’s corporate headquarters in Manhattan just south of the Design District.

Demands are being made that all eating disorder organizations issue statements condemning the WW/Kurbo app. And in all circles, the statistic that 95% of people who go on diets will regain all of the weight they lost on that diet within one (1) to five (5) years is being bandied about as the “gospel truth.”

And yet, there is so much more to these issues than that which meets the eye. So, let’s address some of the myths and parochial thinking which are so prevalent and which continue to haunt the eating disorder community and industry today.

The Myth of the 95% Failure Rate

The Anti-Diet and Weight Loss crowd spearheaded by the HAES movement trumpet the statistic that 95% of people who go on diets will regain the weight they lost, if not more, within one (1) to five (5) years. That statistic has been quoted widely over the last four decades in Congressional hearings, diet books, research papers and seminars. 

And yet, according to Dr. Thomas Wadden, a professor of psychiatry at the University of Pennsylvania,  “That 95 percent figure has become clinical lore … There is no basis for it, but it’s part of the mythology of obesity.” [emphasis added]

So, one must ask, what is the origin of this number? According to Dr. Kelly D. Brownell, the former director of the Yale Center for Eating and Weight Disorders, and now the Dean of the Sanford School of Public Policy at Duke University, “The number was first suggested in a 1959 clinical study of only 100 people. The finding was repeated so often that it came to be regarded as fact.”

Research indicates the oft-quoted, 95% figure does not come from random sampling, but instead from a very limited study of 100 patients treated for obesity at a nutrition clinic at New York Hospital in the 1950’s. In this study, there was no oversight, no laboratory conditions, no control group, no objective reporting and obviously, no credibility. In 1959, its authors, Drs. Albert Stunkard and Mavis McLaren-Hume, published a paper in which they concluded, ”Most obese persons will not stay in treatment, most will not lose weight, and of those who do lose weight, most will regain it.”

However, years after the study was released, Dr. Stunkard revisited the study and remarked, “… the study has little relevance to the current understanding of how to control weight … The 100 patients in the study were ”just given a diet and sent on their way.” [emphasis added]

He also stated “That was state of the art in 1959 … I’ve been sort of surprised that people keep citing it; I know we do better these days.” These statements come from the architect of and primary author of the study!

Before he passed away in 2014, as part of his on-going research, Dr. Stunkard stated, “The intervening years have brought significant changes to the treatment of obesity, the most important of which, has been the introduction of behavior modification techniques.”

Nonetheless, the Anti-Diet and Weight Loss crowd led by the HAES movement use this statistic to suggest that sustainable weight loss is wholly impossible and trying to lose weight is simply an exercise in futility. Other groups attempt to use the statistic to suggest that the only way someone with obesity can ever succeed is by means of drugs or surgery.

The HAES movement claims the Diet and Weight Loss Industries are conducting a “War of Obesity.” HAES further states that “We’ve lost the war on obesity.” That, “The war on obesity has taken its toll.”  And then it characterizes itself as, “Health at Every Size is the new Peace Movement.” But, if HAES and the Anti-Diet crowds are using outdated, inaccurate statistics to support its arguments, then it is attempting to fight a 21^st Century war utilizing 17^th Century weapons.

If an individual’s goal is to lose every last ounce of fat they want and then keep it off, undoubtedly, that goal is unrealistic and mostly unattainable. But, losing weight and keeping it off is not. By way of example, one can study the Look AHEAD trial. The Look AHEAD trial is considered one of the more personalized, involved and lengthy weight management studies ever conducted. Purportedly, after eight years, nearly 50 percent of participants were reported as maintaining losses of greater than 5 percent of their presenting weights, and more than a quarter of them were maintaining losses of greater than 10 percent. Of greater significance is the fact that all BMI groups in that trial had comparable improvements in fitness, physical activity, LDL cholesterol, triglycerides, blood pressure, fasting glucose, and HbA1c at 1 year and continuing thereafter.

Further, if the “War on Obesity” is over and a failure, people would not be investing vast amounts of money, and gambling with their very health in the Diet and Weight Loss Industries. And yet, we know that that is not the case.

So, how prevalent and financially viable are the Diet and Weight Loss Industries?

The Diet and Weight Loss Industries

The diet and weight loss industries sustain financial growth on an annual basis.  On a global scale, the Global Weight Loss and Obesity Management Market is forecast to exceed more than $253.1 Billion [US] annually by 2024. ONE QUARTER OF ONE TRILLION DOLLARS ANNUALLY.

The total U.S. weight loss market grew at an estimated 4.1% in 2018, from $69.8 billion to $72.7 billion. The total U.S. market is forecast to grow 2.6% annually through 2023.

Commercial chains as a group posted an 18% increase in revenues in 2018, to $3.74 Billion. However, this segment of the market is forecast to grow not quite as strongly—8.6% in 2019, and 6.0% per year through 2023.

With regard to weight loss surgeries, an estimated 239,000 bariatric surgeries were performed in the U.S. in 2018, constituting a $5.98 billion market. The number of surgeries continues to grow about 5% per year.

Companies like Weight Watchers, Jenny Craig, Nutrisystem, Medifast, Noom, continue their financial growth and advertising blitzes.

Millions of people in the United States and throughout the world, the publicly traded corporations, the medical profession and the United States government recognize that obesity is a serious health issue and must be addressed. This is also proven by the vast amount in research dollars spent on studying Obesity.

Research funding regarding Obesity

In 2015 alone, the NIH spent an estimated $900 million on obesity research.

In 2016 alone, the NIH spent an estimated $965 million on obesity research.

In 2017 alone, the NIH spent an estimated $999 million on obesity research.

In 2018 alone, the NIH spent an estimated $1.055 billion on obesity research.

In 2019 alone, the NIH is estimated that it is going to spend $1.097 billion on obesity research.

By way of comparison, from 2015 through 2019, the NIH will be spending an estimated total of $169 million on eating disorder research.

To summarize, Obesity research garners $5.016 BILLION during this time period.

Eating disorders garners $169 million during this same time period.

This amount of financial expenditure by the NIH alone bolsters the reality that the Diet and Weight Loss Industries are flourishing. They are addressing a very real health problem according to the United States government. And the eating disorder industry is left sitting at the kiddie’s table while the grown-ups talk about life and death issues.

The eating disorder industry has a very large, very real problem. And that problem is only growing and will not be going away any time soon.

“Houston, We Have a Problem”

The reality is the eating disorder industry is a multi-billion dollar industry. And the only entities which appear to be treating it that way are the private equity firms and the insurance companies. Even the National Institutes of Health are treating it as of relative unimportance. To this end, the NIH spent a comparable amount of money on eczema research, Caregiving research, breast feeding, lactation and breast milk research, back pain research, and headache research. Again, breast feeding and lactation research receives approximately the  same amount of NIH funding as eating disorder funding!

To exacerbate this calamity, up to this point, it appears as if the eating disorder industry has not embraced collaboration with or partnering with “Big Pharma,” the “Diet and Weight Loss Industries” or the insurance entities. The impact of this short-sightedness, unwillingness or inability for collaboration is being felt to the greatest extent by the patients and victims of this insidious disease. And we must question why this collaboration is not being aggressively pursued.

If the WW/Kurbo app is as ill-advised and misinformed as the eating disorder counselors, dietitians, nutritionists, advocates and activists would have us believe, at what point does at least part of the blame fall upon the eating disorder industry as a whole? Why haven’t the eating disorder organizations actively reached out to the Diet and Weight Loss Industries and convinced them that they have a large and ever-growing public relations problem? That they can salvage their integrity (and increase their profits) by openly embracing collaborating with eating disorder professionals. That through such collaboration, health and wellness apps which include substantive, authoritative information regarding food, the impact food has upon the brain and general health and wellness can be generated. Instead of being confronted with burning torches and pitchforks, they would have substantive and well-researched information originated by medical and mental health professionals.

At the same time as a result of this collaboration, eating disorder organizations and professionals would have access to greater and different avenues of funding, marketing, advertising and information. The very manner in which society thinks about and looks upon eating disorders could evolve. Additional avenues of funding for research being conducted by the National Center of Excellence for Eating Disorders and other reputable professionals would be possible.

But, in order to be treated as serious professionals conducting serious research into this serious, life threatening disease, the eating disorder industry must first start to comport itself as if it was a professional, knowledgeable, diverse multi-billion dollar industry.

This is our circus. These are our monkeys. We need to embrace that reality. The reality that we must collaborate … or our loved ones will continue to die.

White Privilege. White Male Privilege. White Supremacy. White Male Supremacy. Capitalism. Colonialism. Weight Stigma. Thin Privilege. Weight Discrimination. Weightism. Racism. Ageism. Healthism. Homophobia. Transphobia. Classism. Ableism. Christian Privilege. Cisgender Privilege. Cis-boom-bah privilege. Heterosexual Privilege. Upper Class Privilege. Middle Class Privilege. Male Privilege. Female Privilege. First World Privilege. Point of Personal Privilege. And many others.

The list is endless and exhausting. Words and concepts. Political and societal issues. They all portray and represent division, the blame game, finger pointing and victimization. At the same time, they all minimize personal accountability and achievement. As our children continue to die from eating disorders, Social Injustice Warriors seek to utilize these political or societal issues to infiltrate the eating disorder industry to spread their messaging.

Nearly every aspect of the human condition can be classified as some sort of “privilege.” So, how does one sort out and address privilege with regard to eating disorders being treated by mental health care professionals? And how does one relegate the vast majority of “privilege” which pertain to the human condition and have nothing to do with eating disorders?

First with regard to “Obesity,” last month a question was posed as to whether “Obesity” should be included as a mental disorder when the new DSM is released in the future. The reaction was swift, sure and expected. One would have thought I premiered the anti-Islamic film, “Innocence of Muslims” before the Supreme Leader of Iran. Although I did not take a stand either way and instead, merely recited what university-based professors had opined, accusations of “White Privilege!” “White Supremacy!” “Typical White Stigma,” and even, “Racist!” were spewed forth by the Social Injustice Warriors. The hatred was obvious. The empathy and understanding were conspicuously missing. The Social Injustice Warriors assembled the kindling and were prepared to “burn all who disagree with them at the stake.”

Due to the universal and uniform outcry that “Obesity” is not a mental disorder and with the firm understanding that “Obesity” is certainly not an eating disorder, Obesity and the privileges and stigma associated with it clearly do not belong in the realm of eating disorders and are beyond the realm of this article.

Contrarily, weight stigma has been shown in peer reviewed research papers to be a consideration when diagnosing and treating binge eating disorder. As such, weight stigma as it pertains to binge eating disorder is included.

“Privilege” Defined

Before proceeding further, we need a firm, workable neutral definition of “privilege.” Stella Morabito, an author and columnist defines it as, “Privileges — whether material, social, or professional—come from being male, healthy, prosperous, safe, white-skinned, heterosexual, non-gender-dysphoric, or any number of things that may cause you to experience the world in a different way than somebody who comes from a different category in today’s social matrix.”

If that definition and explanation can be accepted as being evenly remotely accurate, it would appear that lack of individual accountability, divisive conduct, victimization, finger pointing and blame are all inextricably intertwined with most “privilege.”

Social Injustice Warriors would have us believe that “privilege” must first be identified, then eradicated root and stem so that we may achieve equal results for all. Social Injustice Warriors embrace the belief that equal opportunity means equal results. Further, a number of Social Injustice Warriors have brazenly stated that if you do not fully embrace their mindset and admit your own ‘privileges” then you are a bigot.

This is the all too familiar plaintive cry of a weak and unsubstantiated hypothesis. If a person does not have facts, logic or reason supporting their position, then attack the character of those persons who oppose you until they bend to your will. There is no room for compromise. Dissenting voices must be quashed. You must ostracize and separate from them on all social media. Your view is the only viable view!

Despite no support in research or peer reviewed studies, Social Injustice Warriors are attempting to bring their misguided views into the eating disorder industry. They insist that perceived “privilege” and social injustice ills must be included and addressed in the therapeutic, counseling process in treating eating disorders. Their thinking is not only misguided, but detrimental and potentially dangerous to those suffering and damaging to the treatment of eating disorders.

Why Social Injustice Cannot be Included in the Counseling Process

No Peer Reviewed Studies or University Based Research Support the Inclusion of Social Injustice Issues

I could locate no peer reviewed studies supporting the view that Social Injustice issues should be included in the therapeutic arena or counseling to treat eating disorders. Similarly, I could not locate any peer reviewed studies or university supported research indicating that an effective counselor must first recognize and embrace their own “privilege” in order to be the most effective counselor possible.

Certainly, there are articles which indicate weight stigma can be a consideration in the causation or exacerbation of binge eating disorders. But, those articles are silent on the manner in which weight stigma should be addressed in the sanctity of the counseling room.

But that does not deter Social Injustice Warriors from beating their drums of “privilege.” So, we must continue to refute.

White privilege can trace its roots back to at least 1988 when activist Peggy McIntosh published her essay, “White Privilege: Unpacking the Invisible Knapsack.” All of the alleged “privileges” set forth in the first paragraph of this article have been bandied about by the liberal arm of society for a number of years. And yet, no authoritative, independent peer review studies nor university-based research exist indicating its importance and recommended inclusion in the treatment and recovery from eating disorders. The DSM-V does not include any mention of racism, bigotry or prejudice, let alone the various “privileges,” in its text or index. Nor does the American Medical Association address “privileges” in the treatment of eating disorders. When one questions the reasons for this, one inescapable conclusion is manifest.

And that is, “privilege” is a set of political and social issues championed by social liberals alone. Mainstream society cannot even agree as to the definitions nor the application of privileges. It is axiomatic that ethical mental health providers would not include “privilege” or whatever the “stigma de jour” may be in the counseling process.

Quite simply, the treatment of eating disorders must be free from the political agendas spewed forth by Social Injustice Warriors. Privilege and “stigma de jour” in the context of counseling is not supported by university programs, ethical researchers or respected, objective eating disorder professionals.

The reasons for this are legion.

The Brain of the Eating Disorder Patient cannot process the complexities

Numerous studies and research exist indicating that eating disorders are biologically based and certain areas of the brain tend to be impacted the most.

Research professionals examining the brains of people with eating disorders indicate that the Hypothalamus, Pituitary Gland and Amygdala (“the HPA Axis”) release vital neurotransmitters, or chemical messages which regulate mood and appetite. Researchers at the University of Maryland Medical Center sought to understand the abnormal levels of serotonin, norepinephrine and dopamine present in persons suffering from eating disorders.

This study further found, “Serotonin is involved with well-being, anxiety, and appetite (among other traits), and norepinephrine is a stress hormone. Dopamine is involved in reward-seeking behavior. Imbalances with serotonin and dopamine may explain in part why people with anorexia do not experience a sense of pleasure from food and other typical comforts.”

Dr. Walter Kaye of UC San Diego writes, “… ill persons with AN (anorexia nervosa) tend to perceive their actions as incorrect or flawed and are highly sensitive to criticism, rather than being able to appropriately proportion reward and punishment in order to learn from experience.”

Taken together, these studies suggest a complex interplay between weight status, brain structure, and optimal brain functioning. Brain matter actually shrinks during anorexia nervosa and takes time to recover. Six months after full weight restoration the brain often is not yet structurally back to normal. These studies indicate that persons suffering from anorexia nervosa are typically cognitively impaired and require sustained time at a healthy weight for cognitive impairment to fully restore.

With the subtle and complex issues present in understanding “privilege” and “stigma,” at what point is a person in treatment for eating disorders able to full grasp all of these concepts? What objective brain tests can the Social Injustice Warriors point to indicating that cognitive impairment in the brain of a person suffering from eating disorders has been restored to a level that “privilege” and “stigma” can be full understood and included as part of a recovery program?

In fact, without the restoration of sufficient cognitive impairment, the potential for harm and perpetuating the cycle of treatment, lapse, treatment, lapse increases.

Insurance Companies Will Not Pay

It is a fundamental tenet that insurance companies do not and will not pay for “experimental or investigative treatment.” Courts are universal in holding that where insurance policies contain a “no payment for experimental treatment clause,” insureds/patients do not have the right to receive payment for this type of treatment.

The obvious reasons insurance companies use exclusions to restrict experimental procedures are to limit their financial risk, cost containment, and to ensure the practice of safe and effective medical approaches and treatment and the elimination of uncertain and untested procedures.

Ordinarily, a medical device or treatment or mental health treatment is considered experimental if: “Reliable Evidence shows that the consensus of opinion among experts regarding the drug, device or treatment or procedure is that further studies or clinical trials are necessary to determine its maximum tolerated dose, its toxicity, its safety, its efficacy, or its efficacy as compared with the standard means of treatment or diagnosis.”

Reliable Evidence means “… published reports and articles in the authoritative medical and scientific literature; the written protocol or protocols used by the treating facility or the protocol(s) of another facility studying substantially the same drug, device or treatment; or the written informed consent used by the treating facility or by another facility studying substantially the same drug, device or treatment or procedure.”

These standards can be so strictly interpreted that treatment for eating disorders in free standing eating disorder centers are not covered by Tricare. On its website, Tricare states that it only covers services that are medically necessary and are considered proven. If treatment in freestanding eating disorder centers is not covered by Tricare and is not considered “proven,” is Tricare, let alone any insurance provider likely to pay for counseling involving “privilege” or “stigma especially when led by a counselor who believes that he/she must first identify him/herself as “a cisgendered, non-binary, historically oppressed person?”

As previously stated, no peer reviewed studies or university-based research exist supporting the view that Social Injustice issues should be included in the therapeutic arena or counseling to treat eating disorders. If a counselor or treatment center is fool hardy enough to include those issues on a substantial basis within its treatment regimen there is a substantial risk that the insurance provider will not approve payment for any future treatment. Treatment will not be obtainable.

And a greater number of people will suffer … suffer and die … and this time, in the name of Social Injustice.

Multitude of Additional Reasons

There are a number of other significant reasons why the Social Injustice Warriors should not be allowed to impose their ill-fated agenda in eating disorder treatment.

For example, does social injustice indoctrination apply to those who suffer from bulimia and binge eating alone? Or should those suffering from the other eating disorders also be subjected to this indoctrination? Is there any evidence that the effectiveness of social injustice indoctrination is dependent upon the sex and age of the patient and whether they come from a nuclear family unit?

What of the the most maginalized people in the eating disorder community, boys and men? Since certain divisive parts of the industry, led by the “neo-NEDA” place social injustice above all else, and have, for the most part turned its back on boys and men who suffer from this disease, should boys and men also be excluded from social injustice indoctrination? After all, aren’t men, particularly white men, the cause of many of the “privileges” the Social Injustice Warriors decry? In fact, as part of “privilege” indoctrination, will fingers be pointed and blame assessed against the fathers of those who suffer from this disease? After all, aren’t those fathers, especially the white fathers the root cause of the many ills the Social Injustice Warriors march against?

Despite all of this evidence, the Social Injustice Warriors will forever continue to misunderstand, disregard and deny the true, irrefutable obstacle to their rantings. That is, the power of the family unit.

The power of a strong, family structure. The foundation for building healthy personal relationships are the true source of all power and privilege. Only through these healthy personal relationships can a person learn deeply about the world, exchange ideas, get inspired, invent things, accept personal accountability and create independent communities. These are the surest paths to knowledge and joy. But, Social Injustice Warriors would even denigrate that reality.

The Roman philosopher, Plato urged that families should be abolished, replaced by Guardians appointed by the state. He opined that this was the best way to insure a unified, cohesive society free from favoritism [or privilege as we refer to it today.] One cannot help but believe that the Social Injustice Warriors embrace that philosophy and place society over the family.

Who are the Social Injustice Warriors and What Do They Stand For

Despite all of the evidence to the contrary, the Social Injustice Warriors will continue on their path to bring chaos to the eating disorder industry. When apologies are not expressed toward men who were belittled and ostracized by an ill-advised, pedantic social media post on Facebook and the only apology issued was to their fellow militant, slavish followers of HAES for having to remove the post, you realize these militant Social Injustice Warriors will stop at nothing to spread their poison through the eating disorder industry.

And so, who are these Social Injustice Warriors and what do they believe?

Social Injustice Warriors believe that eating disorders are disorders of systemic oppression.

Social Injustice Warriors believe that public health campaigns and individual healthcare providers who reliably target individual behavior as the pathway to help actually limits the impact that these interventions can have on health, while increasing the risk of shame and stigma being experienced by people who do not align with culturally defined acceptable behaviors or physical presentation of “health.”

Social Injustice Warriors believe that our current systems and institutions perpetuate a structure of privilege, status, and access to some bodies while restricting it from others. They believe that this is not health promoting. It is actually causing mental and physical harm and worsening the health of our society and its individuals.

Social Injustice Warriors who have infiltrated the eating disorder community believe in loving the eating disorder community but hating all aspects and opinions which do not kowtow to their views.

Social Injustice Warriors believe that anyone who disagrees with them has sinister and oppressive motives, are bigots and are “privileged.”

Social Injustice Warriors never seek a compromise or collaboration with reasoned, intellectual people in the eating disorder community.

Social Injustice Warriors who carry within them, deep pain because they have been scarred, bullied or hurt by society, have become the bullies, as they lash out in rage in order to seek revenge for the self-perceived injustices perpetrated against them.

What is even more remarkable is that the sensible, smart strong leaders in the eating disorder industry, the very persons who should be standing up to radical extremism while they are dedicated to protecting their patients and trying to save their lives, are so frightened of the loud, emotion-fueled pablum spewed forth by the Social Injustice Warriors that they have thrown in the towel on sanity.

Social Injustice Warriors stand for:

Ideological purity.

Compromise as weakness.

A fundamentalist belief in their own crusade.

Denying science.

Unmoved by facts.

Undeterred by new information.

A hostile fear of progress.

A demonization of the intellect.

Tribal mentality.

Intolerance of dissent.

Pathological hatred of all those who oppose their radical views.

They may can call themselves Social Justice Warriors. They may even call themselves militant HAES activists.

Although progressive, intelligent advocates shouldn’t call them that.

We should call them exactly what they are …

The Eating Disorder Taliban.

And the Eating Disorder Taliban cannot survive if we stand up to them with facts, reason, logic, intelligence and the strength, passion and love which can only exist within the family.

Continue reading →

August 10, 2019 would have been Morgan’s 26th birthday. Ordinarily, I am not one to post about”Angel-versary” dates. 

Was Morgan an angel? Oh Lord, No! In life she was more of a warrior. And in death, she remains a Warrior. Like her father, she was flawed. Yet, strong and resolute. She inspired while she was with us. Young people with whom she was in treatment have approached me as recently as last month saying how much Morgan inspired them.

August 10 passed quietly. A lunch with close friends. We laughed and told stories. And Morgan’s birthday would have stayed in that context. Then, life got in the way … again.

This past week, I was made aware of two more young people being taken long before their time. A beloved daughter in Colorado named Sarah. Tabitha Farrar, an eating disorder counselor and advocate in Colorado presented a heart wrenching podcast about Sarah and what her being taken meant to her. And lest we forget about why we continue to fight …

I was then contacted by a mother in the United Kingdom who had heard of the Morgan Foundation. Her beloved daughter, Kayleigh was taken at 29 years old after fighting eating disorders for 16 years. Her mother is now starting her own advocacy journey in the United Kingdom to honor her daughter. The following link shows Kayleigh’s fighting spirit … it also shows pictures which could be triggering.

Kayleigh

In the midst of 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, we must never forget who is truly fighting the battle.

Fighting … and dying.

Most people toiling in the eating disorder industry have never heard of Kelly Burk. Most eating disorder advocates do not know who she was. How she lived. How she loved. How she died. And yet, ten years ago, on August 7, 2009, Kelly breathed her last. And a mother’s, and father’s, and husband’s, and brothers’, and aunts’ and uncles’ hearts were broken. A parent’s greatest fear manifesting itself in a cruel, unrelenting way. Ten years ago.

Similarly, most people toiling in the eating disorder industry have never heard of Michelle Fulkerson. Most eating disorder advocates do not know who she was. How she lived. How she struggled. How she died. And yet, ten days ago, Michelle breathed her last. A sister’s and mother’s hearts were broken. A sister left behind asking her beloved sister to “Give daddy a big hug for me in heaven.”

Ten years ago. Ten days ago. And both inextricably intertwined.

So, who was Kelly Burk? A mid-western girl, the oldest of three siblings, lording over and protecting her two younger brothers. She obtained her college degree and still strived for more. Vivacious and smart. She walked into a room with presence. She loved mightily. She fell in love and married. And yet, she fought her own battles, her demon.

By then, the demon had begun to leave its mark upon Kelly. It devastated her to the point that she could not have children. But, she and her husband spoke of adoption.

And yet, she did not receive treatment in an eating disorder treatment center. This was at a time before the “Gold Rush of Expansion” had taken the eating disorder industry by storm. And yes, her friends and family were concerned … and afraid. But, she was strong. She was formidable.

And then one night, in the still of the night, a quiet, unremarkable night, in her home, her heart could take no more … and it beat its last.

Her death certificate did not mention eating disorders, as they rarely do. But everyone knew. And this poor soul would have been simply one more soul taken before her time, taken before she had a chance to make an everlasting mark on society.

But as it happens on rare occasions, Kelly’s family was lifted up and inspired by her. While she was struggling, her family often said that they must do something … they must do something for Kelly. And from the ashes of despair, the Something for Kelly Foundation was born.

Ten years. Ten long and yet, in some ways, very short years. Ten years since Kelly last embraced her loved ones. But, the foundation named after her is carrying on, more vibrant and alive than ever.

Compared to ten years, ten days is but a blink of the eye.

Indeed, ten days is by almost any stretch of the imagination, a short period of time. 

I was contacted by a fellow dad and advocate on Monday night, August 5. He  told me that a young girl had very recently succumbed to her eating disorders. Now, I did not know who Michelle Fulkerson was. But, I discovered that she had fought this insidious disease as well as severe depression for at least three (3) years. And she breathed her last ten days before. I also learned that her father had predeceased her. This broke that incredibly important bond between a daddy and his daughter. And I can’t help but wonder if he had been here, would that have made a difference?

I don’t have to imagine the depth of the agony, the feelings and emotions her mother must surely be feeling … we belong to the same tragic, unfortunate club that no parent should ever belong to.

I also don’t know if Michelle inspired others or helped others. That is not important. What I do know is that Michelle deserves to be known, to be recognized, to make us remember what we must surely continue to fight for.

For some reason, the tragic news of Michelle hit my heart very hard. I received this news about 12 hours before I was to make remarks on behalf of The Morgan Foundation before nurses and health care coordinators for the schools in the Catholic Diocese of Dallas. I then had the privilege of introducing Dr. Tyler Wooten, Psychiatrist and co-medical director of the Eating Recovery Center of Dallas. Dr. Wooten spoke with, interacted with, and engaged everyone in the room.

The nurses in attendance were concerned about only one thing, that is, how to best help their students. How to identify at an early stage and then work with the parents of these students to give them the greatest chance to recover. How to make sure there were fewer Kellys and Michelles.

There was no talk of whether a counselor was “cisgendered, or in a paranormative relationship, or how you are required to admit whatever “privilege” you may have or you are labeled a bigot, or the evils of healthism or ageism or any other type of “ism.” The community was unified in their firm determination to better learn how to recognize eating disorders at an early stage, how best they can help their students and how best they can save their lives.

Saving lives. The fight for life or death. And yet, Kelly was taken. Michelle was taken. And many thousands of other lives are being taken. And somewhere along the line, we have lost sight that that is what the fight is about … this is a fight for life or death.

Look one last time at the faces of Kelly and Michelle. And don’t forget. Certainly, their families will never forget. Let them be a reminder that they are the souls you are fighting for. Don’t cheapen their legacies, their lives and their deaths, by your own misguided or personal agendas.

“A society concerned with shalom will care for the most marginalized among them.”

            Randy S. Woodley, Author, Activist

“The individual has always had to struggle to keep from being overwhelmed by the tribe.”

            Fredrick Nietzsche, Philosopher

July was National Minority Mental Health Awareness Month. It was first established in 2008 by the National Alliance on Mental Illness (“NAMI”). It largely went unrecognized, unacknowledged and unremarkable.

And it should not be surprising that the eating disorder industry is a microcosm of that reality. The eating disorder industry is at a dysfunctional crossroads as it continues to plummet down a rocky path of chaos, silo mentality, voodoo treatment regiments and parochialism.

Nonetheless, in recognition of the month of July and National Minority Mental Health Awareness, let us shine a beacon of light on the largest group of marginalized members in the eating disorder industry, for they are in the greatest need of understanding, support and assistance. Those marginalized members who are overlooked, misunderstood and trampled upon … and sometimes whose existence is not even acknowledged.

I speak of course … of boys and men.

Prevalence

According to the British eating disorders charity “BEAT,” about twenty-five percent (25%) of people diagnosed with an eating disorder are male. According to Eating Disorders Hope, a US based eating disorders organization, forty percent (40%) of those who suffer from Binge Eating Disorder are male. According to the National Institute of Mental Health, 1.2% of all United States adult citizens suffer from binge eating. If this number is accurate, that translates to approximately 3,024,000 adults who suffer from Binge Eating Disorder. Of these, approximately 1,210,000 are adult men. Of course, this does not take into account the many adolescent boys suffering from this disease.

According to the National Eating Disorder Association (“NEDA”) an often quoted statistic states that approximately 30 million people in the United States suffer or will suffer from eating disorders – 10 million of whom are male.

Ten (10) million souls. Equal to the combined populations of Los Angeles, Chicago and Houston. With this many boys and men suffering from eating disorders, one would naturally think the eating disorder industry has rushed to include boys and men in the treatment of eating disorders especially with the unique cultural and societal stigma encountered by males with eating disorders.

Outside Societal and Cultural Issues Encountered by Boys and Men

Boys and men with eating disorders face unique societal and cultural challenges, beginning with the factually incorrect, but widely held misconception that eating disorders are a “rich, white girl’s illness.” That “real men” do not get eating disorders. And young men are supposed to be able to overcome adversity through shear strength of will and determination. Treatment and counseling are for women folk!

And yet, if men do not enter treatment programs, they do not give researchers the chance to understand their stories, their risks, and their successes. Dr. Ralph Carson, a doctor specializing in eating disorders stated: “ … leaning on published statistics does not always tell the whole story of men with eating disorders. Since eating disorders are not typically associated with being male, and since there are not many published articles about how these disorders impact men, those males who do have eating disorders could be struggling in silence.”

The cultural expectation of beauty for men involves a body that is well-defined and muscular. A V-shape, packed with muscles in the shoulders, well defined arms and a torso tapering to slim, yet muscular legs is society’s definition of beauty for men. And it goes back thousands of years. One   need only to look to Michelangelo’s masterpiece, “David” and you realize that he captured the quintessential expression of what “a man” is supposed to embody.

Men who participate in sports like wrestling, ice skating, swimming, boxing and gymnastics are particularly susceptible to eating disorders to become stronger with more endurance.

Even still, body dysmorphia impacts a large percentage of males. A male with this condition wants to gain muscle mass so he looks stronger and more virile. The modern day version of “David.”

Dr. Carson goes on to state, “For so long, eating disorders have been considered a female condition, so males shy away from it. They aren’t females, so they think it can’t happen to them, or they don’t want to be given a female label or a female disease.”

Even clinicians may overlook signs of eating disorders in men. Dr. Carson relates, “In the past, the clinical reference books didn’t even mention men. Up until recently, the DSM defined anorexia with a lack of menstrual periods. Men were just invisible.”

With these societal and cultural views to fight and with the number of males impacted, one could presume that the treatment of boys and men with eating disorders would be of paramount importance. And yet, if one held those views, they would be wrong.

Lack of Treatment Options

Treatment has been overwhelmingly and almost universally focused on girls and women. In fact, there are numerous treatment centers which do not admit boys or men suffering from eating disorders. Timberline Knolls in Lemont, Illinois; Clearview Women’s Center in Los Angeles; Center for Hope of the Sierras in Nevada; Magnolia Creek Treatment Center in Alabama; Oliver-Pyatt Center in Florida; Princeton Center for Eating Disorders in New Jersey; The Renfrew Center in Pennsylvania; Carolina House (*Correction. Thank you to Leanne Raiford who contacted me and pointed out that Carolina House opened a gender inclusive house in September 2017) in North Carolina, and; Montecatini Treatment Center in California, to name just a few. 

With regard to treatment, Dr. Carson related, “I’m in the field and there’s not that many places to get treatment. I’ve heard that the number of facilities is increasing, but the facilities are not specific. It’s hard to even find a place to refer men with eating disorders. And finding the right place is so important. Men can feel shame in asking for help, and sometimes, they can even feel shame while in treatment. In some facilities there are 35 women and two men, so those men can feel really disconnected.”

And if a male is self-aware enough to understand he has a life-threatening illness and turns to the eating disorder industry for help, he is likely to find bias, treatment designed for girls and women and very few answers.

Bias Encountered by Males from Eating Disorder Professionals

The International Association of Eating Disorder Professionals (“iaedp”) holds itself out as: “Established in 1985, the International Association of Eating Disorders Professionals (iaedp) is today well recognized for its excellence in providing first-quality education and high-level training standards to an international multidisciplinary group of various healthcare treatment providers and helping professions, who treat the full spectrum of eating disorder problems.”

It also states, “Clearly iaedp has become more than just an organization. It is representative of leadership in the field. The value of the overall iaedp program is perhaps best seen in its annual Symposium. [emphasis added] The conference draws attendees from all corners of the globe…”

Let’s review the iaedp Symposiums from 2015 through 2019 to determine the value of iaedp’s programs with regard to boys and men.

At the 2015 Symposium, which lasted 4 ½ days, there were 48 educational sessions conducted. Only one (1) session addressed men. The topic? It was entitled, “Bringing Men to the Table: Reaching and Training Male Loved Ones to Support Treatment and Recovery.”

At the 2016 Symposium, which lasted 4 ½ days, there were 54 educational sessions and poster presentations. And whereas, there was one session on music therapy and one session on art therapy, there were a grand total of ZERO sessions regarding boys and men.

At the 2017 Symposium, which lasted 4 ½ days, there were 55 educational sessions. The former male owner of Castlewood, who had been the subject of four lawsuits for allegedly implanting false memories and other improprieties conducted a session on, “Eating Disorders … Sexuality and Intimacy.”  However, what you would not learn about is the manner in which boys and men are suffering and dying from eating disorders and how best to treat them because once again, there were no sessions concerning boys and men.

At the 2018 Symposium, which lasted 4 ½ days, there were 58 educational sessions. And YES! There was ONE SESSION entitled, “Dominant, Logical, Unemotional: Deconstructing Male Eating Disorders.” This 90 minute session received the same amount of time as “E.D.ucation through Musical Theater.” However, it received one fewer hour than the session: “Giving Voice to the Hidden Emotions: The Use of Sand Play Therapy in the Treatment of Eating Disorders with Adolescents.” Who could have guessed that “sand play therapy” was of greater importance and needed more attention than boys and men suffering from eating disorders.

At the 2019 Symposium, which lasted 4 1/2 days, there were 60 educational sessions. You could learn about Veganism but you could not learn anything about boys and men with eating disorders.

So, in a five (5) year time frame, at iaedp’s largest annual international conference, attended presumably by thousands of professionals, there were a total of 275 educational sessions. 1 session was addressed to training men to be supportive partners. There was 1 session deconstructing male eating disorders. And that is the totality. On the other hand, you could learn about sand play therapy, musical theater, art therapy and veganism!

If, as iaedp says on its own website, it is representative of leadership in the field and the value of iaedp is best seen in its annual Symposium, then boys and men are in grave peril and not just from this insidious disease.

Perhaps NEDA would prove to be more understanding and would embrace boys and men. But, as pointed out in the last article, we addressed the manner in which NEDA turned its back on boys and men long ago. We outlined that a bold, new program, a “Dad’s Initiative” was brought to NEDA nine (9) years ago. In 2012, NEDA was allegedly going to embrace dads and kick off this program. And then … NEDA did nothing.

To add fuel to the fire, in a controversial post that appeared on NEDA’s Facebook page which took place on Tuesday, July 23, 2019, men who were fighting eating disorders were singled out, bullied and abused:

“John Doe: I don’t dispute the veracity of the post at all, what I would say as a man who lives with ED is we are very underrepresented in discourse, advocacy, and services. Not to take anything away from women who suffer, but we need more visibility about this topic among men so men can learn to talk about it safely too. Thanks.

Jane Doe: This post has to do with men, too.

John Doe: Jane Doe I didn’t say it didn’t. NEDA asked how people reacted to it and that is my personal reaction.

Jane Doe: dude, you’re full of shit. Just listen to yourself. You’re literally saying your reaction to this post is that we need to talk more about men. Though this post has to do with men, then you say you didn’t say it didn’t, but you reacted to it as such. You’re trying to fucking derail and take over when this didn’t even mention gender.

John Doe: Who are you to try to and silence me? I’m a man who has lived with this crippling disease for decades,. I wouldn’t wish it on anyone, ever I’m talking about my own experience Ever go to a NEDA event? Almost all women. [remaining message lost]

Jim Doe: John Doe I am in the same boat as you John and I am very disappointed with NEDA. Jane has some serious issues of wanting/needing to divide people. I am very sad and disappointed with NEDA. They made me realize there really is no hope [emphasis added]

Kate Doe: Okay, so I thought this was a safe place. I can see politics is in their agenda. I’m out … I’ll recover with my local EDA.”

After a storm of complaints, NEDA took down the post. But, it reappeared on the personal Facebook page of an officer of NEDA that very same day.

Given the harm and discord NEDA’s post caused, one would naturally assume that NEDA would act like any responsible organization and issue an apology.

The next day, NEDA did issue a statement. But, this statement in no way accepted responsibility for its short-sighted and harmful conduct. Instead, in a brazen act of arrogance and intransigence, NEDA did not even apologize … that is to the persons who were harmed. It did however, reaffirm its commitment to social injustice. The post in material part said, “Removing yesterday’s post was in no way a retraction of NEDA’s commitment to important social justice issues, rather it was a response to the harmful discourse in the comments section.”

In fact, the only apology came from an officer of NEDA and was directed toward a closed Health at Every Size (“HAES”) group on Facebook wherein that officer stated: “Folks, I want to apologize for the labor many of you provided that was erased tonight. [emphasis added] I’m disappointed about it being taken down …” And then, “We won’t be deterred in our social justice work, but there is a long way to go – a lot of learning to do to navigate the vitriol that this team [NEDA] is not familiar with.”

No apology to the men on the NEDA thread who were bullied. No apology to the eating disorder community. A recommitment to the message of the Social Injustice Warriors. Perhaps it is time for NEDA to come out of the closet and speak its perceived truth, “No Men Are Allowed.”

As for foundations, Project HEAL is becoming a force in the community. And yet, even within Project HEAL, messages are being sent that boys and men are not included. Full disclosure requires me to state that I started the Project HEAL North Texas Chapter approximately two (2) years ago [but turned over the chapter to others to operate]. I spoke at a gala event in Dallas in May 2018 hosted by Project HEAL. Its founder, Kristina Saffran is nothing short of amazing, a powerful presence. 

And yet, in late September, Project HEAL is hosting an enrichment camp celebrating self-care, body acceptance and empowerment. Camp HEAL is being held at the Angeles State Forest in Southern California. Its promotional literature lists 37 camp counselors, speakers and leaders. Of these 37 leaders, 36 are women. One (1) man. Thirty-Six (36) women.

Would There Even Be Interest in a Boys or Men Program?

Hard questions need to be asked all around. Assuming iaedp had promoted and presented sessions on boys and men, would there be any interest? Would anyone attend? The answer to these questions can perhaps be supplied by the Academy for Eating Disorders. (“AED”)

At AED’s 2018 international conference held in Chicago, there was an educational session entitled,”Unraveling the Enigma of Male Eating Disorders: Conceptualization, Assessment and Intervention.” It was presented by Stuart Murray and Jason Lavender. I was a bit late coming to the session. When I arrived, I saw the room was packed. Every seat was taken and people were standing against the walls. As people continued to arrive, I first offered my chair to them to sit outside of the room looking in through the doors. As even more people arrived, I walked over to a nearby dining table and chair set and started moving over chairs for them to be seated upon.

This session ran long because of the interest and questions asked. Now, would every breakout session involving boys and men be as well attended? Of course not. But, the professional interest is there when the opportunity is presented. This is also demonstrated by the fact that there were no less than eight (8) poster presentations with different topics focused on issues faced by boys and men.

Even still, more difficult questions have to be asked. How did we get to this place? How can as many as 10 million people suffering from this disease be relegated to worse than second class status? Where are the leaders of eating disorder organizations? Perhaps we should look at them as well.

Organizational and Industry Leadership Exclusion

It should come as no surprise that Men have been, as a matter of course, excluded from leadership positions in the eating disorder organizations.

If you look at NEDA’s primary officers, all four (4) are white women.

The Alliance for Eating Disorders Awareness lists a leadership team of thirteen (13) people, twelve (12) of whom are women and none of whom are African-American.

The National Association of Anorexia Nervosa and Associated Disorders lists five (5) staff members. All of whom are white women.

The International Association of Eating Disorder Professionals (“iaedp”) lists four (4) primary officers. Three (3) of the four (4) are white women.

The Academy for Eating Disorders (“AED”) lists five (5) persons on their Executive Committee, four (4) of whom are white women.

The Eating Disorders Coalition list five (5) officers, four (4) of whom are white women.

The Multi Service Eating Disorders Association (“MEDA”) lists five (5) officers, all of whom are white women.

As such, of the forty-one (41) positions listed, the tally is:

1. Zero (0) African- American men;
2. Zero (0) African-American women;
3. Four (4) White men;
4. Thirty-seven (37) White women.

Diversity at its finest? This lack of representation may also explain, given these statistics, why the industry as a whole is ignoring boys and men. 

They may Be Forgotten but They will NOT be Victims

Where are boys and men afflicted with this deadly disease left to turn? Certain elements in the eating disorder community and the more militant advocates advance baseless messaging, social engineering, finger pointing, and victimization all in the name of bringing social injustice inside counseling rooms. Rallying cries of “white supremacy” and “white male privilege,” are being whispered across the eating disorder advocate community, which when extended to their most commonly defined meaning are pointing fingers of oppression and blame against the very people being excluded by the eating disorder industry, boys and men. It has already been demonstrated that if boys or men are hurt as a result of this militant advocacy, one need not apologize. Perhaps boys and men are merely meant to be the sacrifices laid on the altar of social engineering in the eating disorder industry.

To that militant sect who seek to strike back in furious anger against those whom they believe have belittled and stigmatized them, your wait is over. The eating disorder industry is doing your job for you.

But, boys and men, fathers, husbands, brothers, sons, who are afflicted with this disease will not be forgotten. They will not be victims. They have a voice. A voice that should have been heard long ago … a voice which will be heard in the future.