ONCE EVERY SIXTY-TWO MINUTES …

The psychological fact of suggestion is the fact that if statements are made again and again in a confident manner, without argument or proof, then their hearers will tend to believe them quite independently of their soundness and of the presence  or absence of evidence for their truth. More particularly will the listeners tend to accept the suggestions of a speaker if they have what we may call ‘prestige’.

                   Robert H. Thouless, British Psychologist

“Increasingly, we become so secure in our bubbles that we accept only information, whether true or not, that fits our opinions, instead of basing our opinions on the evidence that is out there.”

                        President Barack Obama

Bias

“Illusory truth effect” is a mechanism by which one comes to believe something is true when it is not. It can be a powerful mechanism. A mechanism many people embrace. In fact, not only do many people embrace it, but they defend it as true. At times, the thought that a person’s belief may not be true is so inconceivable and unleashes such unfathomable personal ramifications that many people will not even look for balance nor  objectivity and when confronted with the truth, they readily dismiss it.

Similarly, “Confirmation Bias” is the tendency to search for, interpret, favor, and recall information in a way that affirms one’s prior beliefs or hypotheses. It is a type of cognitive bias and a systematic error of inductive reasoning. People display this bias when they gather or remember information selectively, or when they interpret it in a biased manner. The effect is stronger regarding desired outcomes, emotionally charged issues or deeply held beliefs.

When one combines illusory truth effect with confirmation bias, blatantly incorrect and potentially damaging information may be regarded as an absolute truth no matter what reason, logic and facts exist to contradict that faulty misinformation. And sometimes with tragic results.

In the realm of eating disorders, one of the biggest, if not “the” biggest perceived “truth” may be anything but … and this should shake the eating disorder industry and community to their very core.

Once Every Sixty-Two Minutes, someone dies as a direct result of an eating disorder.

Like most people who have been impacted by eating disorders or who are involved in the eating disorder industry and community, I embraced this statistic as an absolute truth. Because it had been repeated so many times by persons perceived as authoritative, I presumed that it must be true. I used this statistic in TED talks. I impactfully utilized this statistic in presentations to adolescents, caregivers and parents.

This statistic, perhaps more than any other, defines the deadly nature of eating disorders. By its very nature, it frightens us. It sobers us. It brings home the pain and suffering endured by loved ones. It forces us to grimly acknowledge the mortality rate of this disease. Doctors, professionals, advocates, and counselors all, hold on to and quote this horrendous statistic as gospel chapter and verse. Organizations have quoted this statistic before Congress and other legislative and administrative agencies.

We use this statistic to bolster representations that Eating Disorders have the highest mortality rate amongst all mental illnesses save opioid addiction.

And yet?

After conducting extensive research, I could not locate even ONE research paper or analytic study indicating that this statistic is accurate. Even an originating paper or study where it is cited for the first time could not be located. But, we are not left without any probabilities.

In 2011, two studies were published back-to-back  in the Archives of General Psychiatry. The first study was entitled, “Prevalence and Correlates of Eating Disorders in Adolescents. Results from the national comorbidity survey replication adolescent supplement.” It was authored by Sonja A. Swanson, ScM, Dr. Scott J. Crow, MD and Dr. Kathleen R. Merikangas, PhD. It is cited at Arch Gen Psychiatry, 2011; 68(7): 714-723. For simplicity, we will refer to this study as the “Swanson/Crow Study.” A copy is attached here:

Swanson/Crow Study

The second study was entitled, “Mortality rates in patients with anorexia nervosa and other eating disorders. A meta-analysis of 36 studies.” It was authored by Jon Arcelus, PhD, Alex J. Mitchell, MRC Psych, Ms. Jackie Wales, BA, and ; Soren Nielsen, MD. It is cited at Arch Gen Psychiatry, 2011; 68(7): 724-731. For simplicity, we will refer to this study as the “Arcelus Study.” A copy is attached here:

Arcelus Study

I could not locate any research papers prior to 2011 in which the “Once every 62 minutes” statistic was utilized. It appears this statistic has its genesis in the 2011 Studies mentioned above. Sadly, the “Once every 62 minutes” statistic does not appear to be based upon an accurate analysis of these Studies. In fact, this 62 minute statistic appears to be merely a “guestimate,” albeit a good faith guestimate.

So, to determine whether this statistic is legitimate, we must turn to both 2011 studies.

The Swanson/Crow Study

The Swanson/Crow study was limited to adolescents suffering from eating disorders. It was based on face to face interviews with 10,123 adolescents aged 13 – 18. It focused on prevalence of eating disorders in adolescents.

Its major finding indicated that the full spectrum of eating disorders and disordered eating was likely to be considerably higher than previously estimated, a possibility that may have major public health implications. Whereas the Swanson/Crow Study touched upon suicide ideations, plans and attempts, it did not delve into this factor and did not include mortality estimations or statistics.

The Arcelus Study

On the other hand, the Arcelus Study focused on mortality rates. The Arcelus study is an analysis of data collected from 36 different studies published between 1966 and 2010. After mortality rates were adjusted for sample size, Arcelus researchers calculated the following:

  1. 1 deaths per 1,000 people with anorexia per year. Anorexia increased the death risk 5.86 fold.
  2. 7 deaths per 1,000 people with bulimia per year. Bulimia increased the death risk 1.93 fold.
  3. 3 deaths per 1,000 people with EDNOS per year. EDNOS increased death risk 1.92 fold.

So, if the Arcelus statistics are considered accurate, the mortality rate would equal 10.1 deaths per 1000 individuals in the United States.

Maths is hard.

Homer

This is where the dreaded math aspect comes into play. And so, we will attempt to simplify and clarify complex equations as much as possible.

In 2011, the population of the United States was approximately 311,600,000 people. Divided by 1000 individuals [the Arcelus research study constant], this results in 311,600 people as our control group. Of these 311,600 people, 1.01% people [10.1 deaths per 1000] will suffer and perish from eating disorders annually … or 3,147.16 fatalities per year.

Next, we compute the mortality rate per minute. To do this, we know the following:

For an average year in the complete leap cycle of the modern Gregorian calendar (365.2425 days) there would be 525,949.2 minutes (60 minutes per hour, multiplied by 24 hours per day, multiplied by 365 days per year).

If the current belief of one death every 62 minutes is to be believed, we would take the average of 525,949.2 minutes per year divided by 62 minutes which then equals 8,483 fatalities per annum.

However, if we go by the more generally accepted, accurate and respected Arcelus statistics, this number would be 3,147.16 deaths per year… not 8,483!

Therefore, if the math, logic and  underlying assumptions in the Arcelus Study are correct,  a more accurate statistic would be one death as a direct result of eating disorders every 167.1 minutes. [525,949.2 minutes per annum divided by 3,147.16 = 167.1 deaths per annum]

One death every 167 minutes … as compared to … One death every 62 minutes.

Make no mistake, the mortality rate is still horrendous. And yet, how could we be so wrong? And, why has this statistic been unquestionably accepted and not more thoroughly vetted, researched and explored?

Other Variables

Naturally, other variables exist which further cast doubt upon the accuracy of the one death every 62 minutes statistic. For example, eating disorders are rarely listed as the primary cause of death on death certificates. [Personal experience with that one.] Heart failure or multiple organ failure are more commonly listed as the cause of death. Co-occurring addictions are more frequently cited as causes of death. Thousands of deaths which could be related to eating disorders do not occur in treatment centers or hospitals, but instead in the quiet solitude of one’s home. [Something for Kelly has experience with that one.] The lack of training of our healthcare professionals to identify and treat eating disorders. The limited number of autopsies performed. Inexperienced coroners incorrectly attributing deaths  to eating disorders.

These factors and many others, which all speak to variables which are not constant and relatively unknown when taken into account, cast additional doubt upon the previously believed statistic of “once every sixty-two minutes.”

No valid research paper or study could be located which establishes, let alone verifies that the one person every 62 minutes statistic is accurate. To the contrary.

In short, the once every 62 minute statistic is as unsubstantiated as other medical myths such as: we only use ten percent (10%) of our brains; you need to stay awake immediately after sustaining a concussion; sitting too close to a television ruins your eyesight; fingernails and hair continue to grow after death; ulcers are caused by stress.

But why?

People have asked why I would expose the myth of 62 minutes. Why not just leave well enough alone? After all, my own daughter was one of those souls taken by this disease. Why?

The answer is both complex and simple.

First, there is an undeniable crisis within and about Eating Disorders. Eating Disorders are the unwanted, unloved “ugly stepchild” of mental illnesses. Eating Disorders receive very little federal funding for research especially when compared to other mental illnesses.

The eating disorder community (organizations, foundations, advocates, and activists) is fractured, dysfunctional and unable or unwilling to collaborate on a centralized, powerful message.

The eating disorder industry (research scientists, professionals and medical doctors and clinicians) is unable or unwilling to collaborate to develop generally accepted standards of care which are both effective and reliable and which would save many lives.

A cacophony of banal noise is coming from a miniscule, militant sect of social engineering activists who seek to turn this deadly genetic, biological and medical disease into a social injustice classroom experiment.

The families who bear the brunt of this dysfunctionality, who live with the pain and anguish of their loved ones suffering and dying from eating disorders are entitled to receive and rely upon properly vetted, accurate information.

To obtain research grants and funding that eating disorder patients and their families require, we will be called upon to testify truthfully and openly in state houses, before Congress and before administrative agencies. “Guestimated” statistics do not lend credibility to the verifiable evidence which exists, that is, eating disorders are deadly genetic, biological and medical diseases.

To finally obtain necessary research funding, funding that will lead to intelligent, fact-based and scientific breakthroughs in our understanding and treatment of this disease, we must demand accountability and accuracy from all … scientists, professors, doctors, clinicians and advocates.

“Once Every Sixty-Two Minutes” makes a very compelling sound bite. But, unlike our children who hang on to bed time fairy tales as exciting stories to give them peace and comfort, we do not have that luxury. We must make our case to strive forward with confidence, armed with fact based statistics in order to save many more lives.

We must say, “Good night and good-bye to Once Every Sixty-Two Minutes.” You served us as well as you could. But now, you must stand aside for clarity, truth and accuracy.

 

 

 

 

 

 

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