F.E.A.S.T. – Friends Exasperated at Anorexia’s Special Treatment

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

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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.  

One thought on “F.E.A.S.T. – Friends Exasperated at Anorexia’s Special Treatment

  1. Well done and explained. I was horrified and insulted when i watched Ms. Collin’s group on her broadcast say what they were saying. It was so disrespectful to those of us who have lost our child to anorexia saying what she and the others were spewing. The whole topic as you explained, (and I posted to their site) could have been titled and discussed not to be insulting and disrespectful, but saying “other eating disorders need to be explored and brought to attention” etc., instead of degrading Anorexia as “getting too much attention” ” glorifying anorexia” (sattments I heard there). So insulting to those who suffer with this deadly disease and those who died like your Morgan and my Heidi. Thank you for pointing out what is factual and for this article.~! F.E.A.S.T. should apologize, but don’t think that will happen.

    Like

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