Sports Concussion Research, CTE, and the Media: Can The Disconnect Ever Be Repaired?
The public’s perception that a direct causal link exists between repetitive head contact and chronic traumatic encephalopathy (CTE) is largely the result of one-sided, sensationalized, and biased reporting, argue four head injury researchers in a provocative editorial in the British Journal of Sports Medicine.
Exhibit A, say the authors, is the tragic case of a former NHL player, Todd Ewen. Suffering from bouts of depression, which he was convinced were the result of CTE, and terrified at the thought of a future living with an untreatable neurodegenerative disease, Ewen committed suicide at age 49.
Before an autopsy could even be performed, however, the media’s verdict was in: his depression and suicide were most likely the result of a career in the NHL, repetitive head trauma, and the inevitable onset of CTE. A subsequent autopsy, however, found no evidence of CTE. [November 2018 update: Two subsequent autopsies of Ewen’s brain, one by Dr. Ann McKee, the chief of neuropathology at the VA Boston Healthcare System and director of the Boston University C.T.E. Center, and the other at the Mayo Clinic, diagnosed Ewen as having a less severe case of CTE].
How, asked the editorial’s authors – three researchers at Vanderbilt and an epidemiologist at the University of North Carolina – Chapel Hill – did an athlete with treatable depression come to believe that he had an untreatable condition and commit suicide?
Because, according to the editorial’s authors, the media, ably aided and abetted by Dr. Ann McKee, chief of neuropathology at the VA Boston Healthcare System and director of the CTE Center at Boston University, the Concussion Legacy Foundation, co-founded by Chris Nowinski and MomsTEAM’s first concussion expert, Dr. Robert Cantu, and the PBS series, Frontline, used the results of autopsies of the brains of a small, self-selected group of former athletes, a staggering 96%* of whom were diagnosed post-mortem with CTE, to create a “sensationalized state of fear” about CTE. To make matters worse, the authors argue, the media ignores and/or severely criticizes research findings that don’t fit the football = dementia narrative, and labels anyone who dares to challenge “the ‘status quo’ and demand that further study is needed are labelled as conspiring ‘deniers’ or ‘shills’ with other vested interests, trying to confuse the public and conflate the issue.”
What can be done to repair this obvious “disconnect” between the science on CTE and the way the subject is reported by the media? The authors propose a three-pronged approach.
To begin with, they say, scientists and members of the media need to begin by acknowledging three biases they bring to the discussion of sports-related concussion and CTE: a ‘belief bias,’ causing them to stubbornly hew to the most intuitively attractive conclusions and their own beliefs, rather than attempting to reconcile conflicting or contrary evidence; an ‘illusion of validity’ bias, which falsely equates research quantity and quality; and, finally, the tendency to see oneself as less biased than others. (what they term the ‘bias blind spot’) Only by acknowledging such cognitive biases, they argue, can both scientists and journalists entertain and reconcile the empirical evidence about sports-related concussions (SRC) in its entirety.
Second, given the crucial role the media play in providing information to the public, the scientists call for researchers and medical professionals to spend more time educating the media and encouraging members of the media to attend and actively participate in large academic meetings or conferences.
Third, acknowledging that some of the blame for the biased and one-sided media reporting on head injuries rests with some members of the scientific community who issue one-sided press releases and feed cherry-picked results about their findings to selected members of the media, the authors look to a day when the “harsh division and polarization” in the research community (an almost inevitable byproduct, unfortunately, of the intense competition for grant money in Concussion, Inc.), gives way to greater collaboration among researchers and a more “cordial discourse” between scientists via letters and responses to journal editors and back-and-forth debates at large academic conferences.
Publication of the editorial came on the same day as two other events of note, first, the release of a new book, Back in the Game, in which sports neurologist Jeffrey Kutcher and award-winning journalist Joanne Gerstner repeatedly and pointedly criticize the media for “irresponsible” reporting on CTE, and second, the filing of a class action lawsuit in federal court in Los Angeles against Pop Warner, USA Football, and the National Operating Committee on Standards For Athletic Equipment (NOCSAE) which assumes as scientific fact that repetitive head impacts sustained in youth football “exposed” the plaintiffs’ sons to CTE, and led one to engage in “erratic and reckless behavior” resulting in his untimely death, and the other to take his own life.**
Not at all surprising is that the only one of the three to receive widespread coverage, including a story in The New York Times, was the class action lawsuit. Why? Because it was the only one to advance the football = dementia and CTE = suicide narratives.***
The number of scientists and clinicians who have called over the last several years for more accurate reporting by the media on concussions and CTE, criticized the reporting of strongly presented causal assumptions relating to concussive and subconcussive brain impact exposure as “scientifically premature,” and highlighted the negative real world consequences to such one-sided reporting, has grown to consensus proportions, but have largely flown beneath the media’s radar.
The media narrative, argues Matthew McCarthy, a physician at New York-Presbyterian Hospital, has real world consequences in which former NFL players, and all those who ever donned a football helmet, may be, to a greater or lesser degree, “collateral damage.” McCarthy writes of an encounter with an unidentified former NFL player in the psychiatric ward of a New York hospital who was paralyzed by the fear that he was “walking around with a death sentence over [his] head.”
“An aging athlete,” he argued, should not have to “assume that a neurologic symptom is from CTE or that his life is about to unravel. There may be an alternate treatable explanation. And, either way, a physician should be making the diagnosis,” not a journalist or even a research scientist.
Harvard neuropsychologist Grant Iverson suggests that, given the thousands of media stories relating to contact sports and CTE, it was perhaps time to examine whether repeated exposure to such news stories “elicits or reinforces suicidal ideation in some at-risk athletes.” Pointing to studies showing that the media influences suicidal behavior, Iverson argues that media coverage reporting a causal relationship between contact sports, CTE, and suicide could actually be contributing to psychological distress in former athletes.
Much the same point is made by the authors of the new BJSM editorial and in Back in the Game, where Kutcher and Gerstner argue that suicide rates among former National Football League players, can be and have been affected by messaging in the media – a phenomenon called the “suicide contagion” – and note how, in its coverage of the suicide of players such as Junior Seau and Dave Duerson, the media has consistently ignored all seven of the recommendations of the Centers of Disease Control on how to avoid spreading that contagion, including not presenting simplistic explanations for suicide, not engaging in repetitive, ongoing, or excessive reporting of suicide, and not sensationalizing suicide.
In a paper published in the journal Behavioral Sciences and the Law, scientists at the University of Colorado School Medicine note that, all too often, the “sensational media attention” surrounding CTE “divorce discussion of CTE from the well-established natural history and typically favorable prognosis of mTBI,” while, at the same time, such reports – and the scientific reports about CTE to which they are connected – imply direct connections between complex, multi-determined behaviors such as murder and/or suicide and mTBIs occurring in the remote past of individuals engaging in those behaviors.”
“The widespread media attention to these reports,” writes lead author Hal Wortzel “appears to have primed the public to accept highly reductionist formulations regarding the neuropathological bases of neuropsychiatric illness and complete human behaviors among persons with remote histories of [brain trauma].”
“What is tempting is to assume a reductionist approach that directly links all collisions in all contact sports with the development of long-term degenerative brain disease,” write Jon S. Patricios, MD and Michael Makdissi, MD in a 2014 editorial in the British Journal of Sports Medicine. “While CTE may be well defined pathologically and some association with sport has been identified – it still needs a significant amount of work to understand who is at risk and why.”
“Moreover,” they write, “too many questions remain before we can fill the aetiological chasm that exists between contact sports participation and CTE. These include the clarity regarding the number of blows, the effects of subclinical impact, the influence of other noxious influences on the brain, potential underlying genetic susceptibility and specificity of such histological changes to sport.
To counter the misinformation in the media, Wortzel and his colleagues recommend, like the authors of the most recent BJSM editorial, that a concerted effort be made to educate medical professionals and the public at large regarding the state of the science of mTBI and CTE in order to avoid “catastrophizing” mTBI, to mitigate the “collective anxiety” that has resulted, and to reduce the likelihood that outcomes after mTBI will be actually be made worse as a result of the media frenzy around CTE.
Patricios and Makdissi use the metaphor of a television screen to make substantially the same recommendation: “What is needed in all sports is to pull the pixels together into a flowing, plasma-quality picture that encapsulates the context of every concussion injury. The challenge in effective implementation is to have law makers, administrators, coaches, referees and players as well as medical staff all understanding that it is NOT acceptable to play while any of the clinically determined parameters have yet to be fulfilled.” In literally focusing the histopathologist’s microscope on the CTE slide, “what is magnified is only one pixel which should not distort the entire concussion picture.”
They answer the question of “How can we constructively harness the heightened mindfulness of concussion albeit as a result of sometimes pixelated and distorted media sources?” by arguing that it is “Medical doctors with an understanding of the evolution of concussion knowledge as well as the research horizon [who] remain in the best position not only to assess and manage the concussed athletes but also to disseminate the information required to facilitate a global implementation of consensus protocols.”
Using only a single tool or drawing conclusions from seeing only one perceptible aspect of concussion management creates a distorted, ‘pixelated’ image, they say. Similarly neither the clinicians nor the media should react to only one aspect of a player’s presentation.
It is important to note that these researchers are not saying that a causal link between repetitive head impacts and CTE won’t ever be established, and it is clear from the evidence so far that there is a link between concussions and repetitive head trauma and an increased risk of long-term neurocognitive problems. Kutcher, for one, admits that, “Ultimately, scientific research might establish that participation in contact sports leads to a distinct neuropathological syndrome, and this neuropathology causes psychiatric, cognitive and physical problems.” Until then, such “cause and effect relationship remains to be shown scientifically.”
A lengthy, well-researched, and powerful article in the Spring 2015 issue of the NCAA’s Champion magazine, not only reports the belief of many top concussion experts that the media narrative about sports-related concussion trace has been dominated by media reports on the work of Dr. Ann McKee, which was the centerpiece of PBS Frontline’s League of Denial, but Dr. McKee’s, however belated, mea culpa that “There’s no question [that her autopsies finding evidence of CTE in the brains of most of the former athletes were] a very biased study,” that they involved “a certain level of … sensationalism”, that there were “times when it’s overblown” and went “a little too far.” Why? Because, Dr. McKee admitted, because “it’s what sells.” (Interviewed by the Times for its July 25, 2017 article about the JAMA study, Dr. McKee again conceded the “tremendous selection bias” of the study, but argued that, “It is no longer debatable whether or not there is a problem in football — there is a problem.”)
Ironically, it appears that Dr. McKee’s colleague, Dr. Robert Stern, may be the scientist who has been trying the hardest to educate the media to not get ahead of the science. Typical of Dr. Stern’s efforts were statements he made to USA Today for a December 23, 2015 article in which he admitted that, “There has been a lot of hype about CTE that has gone beyond the science. We need to have the science move forward so we can answer … important questions like, ‘What are the symptoms of CTE exactly? When someone has symptoms, what can we do to have a better understanding of whether it’s due to CTE or not? Just because someone has depression doesn’t mean it’s CTE. Just because someone has problems with impulsivity doesn’t mean it’s CTE. Just because someone develops memory impairment and eventually dementia, that doesn’t mean it’s CTE.”
At this stage, Stern said, the science shows only that “repetitive head impact exposure is a necessary variable for getting the disease, but it’s obviously not sufficient, because not everyone who hits their head is going to get this brain disease. That’s pretty much all we know. … I’m the one person who says over and over again we have no idea what’s going on yet. People should not overreact and be fearful that they’re going to develop CTE, especially our youth athletes.”
The billion dollar question is, now that the CTE genie is out of the bottle, will efforts to correct the record and repair the disconnect between the science and the media about the disease be a case of too little, too late?
* A new study by the McKee group published in July 2017 in the Journal of the American Medical Association – and dutifully reported in a splashy article in the New York Times featuring ghoulish pathology slides of the brains of every former NFL player in the study found to have had the disease – reported that 99% (110 out of 111) of the brains of former NFL players they autopsied were found to have the tell-tale signs of CTE.
** The suit against Pop Warner was dismissed in May 2012 for lack of jurisdiction and because, the court said, the plaintiffs failed to allege that the organization misled them about the safety of youth football. Not surprisingly, the dismissal was not reported by the Times. In February 2018, the court denied Pop Warner’s motion to dismiss the plaintiffs’ third amended complaint, allowing the case to go forward to the discovery and trial phase.
*** It is widely acknowledged that the origins of the CTE=dementia and CTE= suicide memes can be traced to a single event: the publication on January 18, 2007 of an article in the Times about former Philadelphia Eagle André Waters, who, after committing suicide, was found by trailblazing pathologist Bennet Omalu to have suffered from CTE. Conspicuous by its absence from the Times’ most recent article about Dr. McKee’s pathology findings, as has been the case in almost every article on CTE that the Times has published over the last decade, is any mention of Dr. Omalu, whose falling out with Dr. McKee’s colleague, Mr. Nowinski, is chronicled in excruciating detail in Jeanne Marie Laskas’s book, Concussion (although omitted as a story line in the subsequent movie based on the book). Instead of giving credit to Dr. Omalu for his work, the article notes only that the autopsies of the brains of some other players found to have CTE, including Junior Seau, Mike Webster and Andre Waters (all three of which were performed by Dr. Omalu) were performed “elsewhere.”
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Originally published September 6, 2016; revised and updated August 7, 2017; updated November 6, 2018.