A few years ago when completing my M.Ed. degree I chose eating disorder misinformation as the subject of my Masters thesis. This was important to me for several reasons, including that it involved several of my longstanding interests such as myths and misinformation (a typical skeptical subject); eating disorders (a subject I first became involved with when helping an ex-girlfriend deal with bulimia); and the news media (the subject of my 2003 book Media Mythmakers: How Journalists, Activists, and Advertisers Mislead Us).
I wanted to understand and explain the processes by which valid scientific information about these important health disorders got translated (and often mistranslated) between the clinical researchers and the public, mediated by eating disorder information clearinghouses (such as the National Eating Disorder Association, or NEDA), news journalists, and activist filmmakers (such as those who appear on prestigious PBS television shows such as Nova and Frontline).
Misinformation about eating disorders is not like misinformation about a car’s gas mileage, or the weather. Eating disorders are mental illnesses with potentially lethal consequences. Sufferers and their loved ones deserve accurate, up-to-date information about the diseases, but trusted sources of information–such as PBS television, ABC News, and even organizations such as the National Eating Disorders Association–turn out to be not so trustworthy upon closer inspection. This important topic has received little or no attention in the mainstream media, nor, to the best of my knowledge, in academia. Part of this may be due to the fact that the topic of eating disorder misinformation is multidisciplinary, and includes journalism, public education, media literacy, science literacy, medicine, and psychology.
In Part 1 I presented one case study of flawed and misleading information about eating disorders presented in the respected PBS series Nova, titled Dying to Be Thin. In Part 2 I explore some of the reasons for why the flawed Nova writers got the information wrong and, tragically, helped spread misinformation about anorexia nervosa and other eating disorders.
Innumeracy, which statistician John Allen Paulos (1998) describes as the mathematical counterpart to illiteracy, is a serious impediment to effective science communication. Paulos discusses “the gap between scientists’ assessments of various risks and the popular perceptions of those risks, a gap that threatens eventually to lead either to unfounded and crippling anxieties or to impossible and economically paralyzing demands for risk-free guarantees. Politicians are seldom a help in this regard since they deal with public opinion and are therefore loath to clarify the likely hazards and trade-offs associated with almost any policy” (p. 5).
No one expects all journalists and activists to be statisticians, and it is inevitable that mangled numbers and data will be reported and perpetuated now and then. But sometimes the numbers are so obviously incorrect that anyone with a grasp of basic math should know that they are problematic. Take, for example, the statistic that aired on the Nova program: “anorexia has been increasing by 36 percent every five years since the 1950s.” That statistic doesn’t make sense on the face of it: The period between 1950 (the earliest date stated in the statistic) and 2000 (the year Dying to be Thin aired), covers 50 years- about 10 increments of five-year periods during which cases of anorexia are claimed to have increased by 36%. This is an exponential growth: the base rate X + 36% in 1955, then a 36% increase over (X + 36%) for 1960, then a 36% increase ([X + 36%] + 36%) for 1965, and so on. If this statistic is true as written, anorexia incidence should be much higher than the widely-accepted estimates of approximately 1%. This is grade-school mathematics, and it is surprising that no one–from the writers to the editors and PBS producers–noticed that the statistic highlighted in the program and promotion copy cannot be correct.
Emphasis on Anecdotes Over Statistics
Paulos notes that “innumerate people characteristically have a strong tendency to personalize-to be misled by their own experiences, or by the media’s focus on individuals and drama” (p. 6). Indeed, we often find exactly this tendency in the work of journalists, activists, and journalist/activists (such as Larkin McPhee, the writer/producer/director of the Nova documentary Dying to be Thin). They often seek to “put a face on the statistic” by focusing on one person’s struggle or experience, to make it relatable to the audience.
There is nothing inherently wrong with this–it is a fundamental element of good storytelling. Human interest and personal drama will always be more evocative and compelling than a series of talking head experts and impersonal, abstract statistics. However it is important to remember that the scientists’ goal is not to tell a story; their goal is to provide accurate information upon which to guide further research (and perhaps public policy), and help people understand the world.
The two demands are not necessarily mutually exclusive: it is quite possible to carefully select one person’s personal narrative story and present it as one part of a larger informative piece, providing accurate information about the larger picture and emphasizing to the audience when the person’s anecdote or personal experience is atypical. It is also much more work, and requires a high level of research, fact-checking, and devotion to accuracy. Faced by time and money constraints and under pressure to bring in audiences, it is no wonder that many journalists take shortcuts that compromise the accuracy and integrity of the science. Unfortunately this often leads to eating disorder misinformation.
Activists are likely to trivialize and dismiss misinformation they present than journalists, suggesting an ends-justifies-the-means approach. Even though some of the anorexia numbers they provide regarding the incidence, mortality, and etiology of the disease may be exaggerated (or completely wrong), it does not, they suggest, take away from the fact that the disease is a serious and legitimate problem. If the erroneous statistics help raise public awareness then it’s pedantic hair-splitting to quibble with a misplaced decimal point, or point out that incidence of the disease has remained stable since 1970, instead of increasing by 36% every five years since 1950, as claimed.
It is interesting to note that even when the scientists and institutions are aware–or should be aware–that they have been widely misquoted or their research mischaracterized, they may not care. For example in my research of the information on anorexia presented in Nova’s Dying to be Thin program which had been attributed to the Mayo Clinic, a representative acknowledged that the erroneous statistic “has been widely quoted, and apparently first appeared in a Nova production of ‘Dying to be Thin’ on PBS, in 2000″ (Erwin 2013). In other words, the Mayo Clinic was aware of the misinformation and had correctly identified the source of it, but (apparently) never challenged the misinformation publicly or contacted the Nova producers to correct the mistake. This may be understandable, since there is not likely to be a designated person at the organization whose job it is to monitor references to Mayo Clinic research in the media and contact the sources of that information to request a clarification or correction. (The lead researcher whose conclusions were apparently mangled by McPhee on the Nova show, Alexander Lucas, has si
Still, one would hope that someone at the Mayo Clinic who was aware that a respected, high-profile PBS series broadcast had presented misinformation attributed to the clinic would have taken steps to address the situation. It is likely that most eating disorder researchers, like many scientists in general, are so used to being misquoted and misinterpreted by the news media that they don’t bother to complain. This cynicism is understandable, but contributes to a situation in which even glaring, high-profile instances of misinformation about eating disorders remain easily available to the public searching for accurate information.
In my research I found many examples of flawed, misleading, and sometimes completely wrong information and data being copied and widely disseminated among eating disorder organizations and educators without anyone bothering to consult the original research to verify its accuracy. While this tendency is understandable and common, in many cases the information is made available through prestigious publishers. Peer-review and academic editors help minimize glaring errors by authors in scientific and medical journals, but mainstream book publishers are another matter. Editors for publishers like Knopf and Random House are far more likely to employ fact-checkers for books on topics such as hard science than on social science or feminism. As with many subjects, eating disorder misinformation tends to creep into the public sphere where editorial vigilance is the lowest. Because expectations for factual accuracy and thorough scholarship may be relaxed for books written by non-specialist writers about popular culture, opinion, and activism, misinformation is more likely to appear there than in eating disorder textbooks written by researchers and experts.
Many sources of eating disorder information feel that the responsibility to fact-check the information they provide falls in someone else’s purview: Scientific researchers, for example, rue the fact that journalists often misquote them, but make little effort to correct the record. Writers and documentary filmmakers plagiarize statistics from other sources, assuming that someone somewhere must have verified the information. Because of this, the task of ensuring the accuracy and validity falls through the cracks.
A larger problem is authors referring to articles they haven’t even read. As one writer noted, “Academics do a lot of research. The pressure to perform research in order to earn tenure generates, by some estimates, about 1.5 million new articles a year. Some scholars have critiqued the quality of this research, pointing out that only 45 percent of the articles published in top journals are cited within the first five years after publication, but scholars are supposed to build on existing knowledge and use that to develop their own thinking. Except it turns out that most of the cited research probably isn’t read. In fact, most of the research academics actually cite in their own papers they likely haven’t looked at. That’s according to a paper by scholars at University of California, Los Angeles indicating that some 80 percent of authors include citations to articles they probably haven’t read” (Luzer 2013). That research, published in the journal Complex Systems (Simkin and Roychowhurdy 2003), used a modeling system analyzing repeated errors appearing in the citations scientific papers and concluded that “only about 20% of citers read the original.”
Eating disorders are serious diseases, and those suffering from them deserve valid, accurate information. The respected TV series Nova, in its show Dying to Be Thin (which is advertised as suitable and available for use in schools) failed spectacularly in its educational mission and not only failed to give accurate information about anorexia nervosa but actively spread misinformation and myths about it. It is not a failure of the science or the researchers; instead it is a failure of journalism and activism.
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