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CTE: Media Continues To Be Ahead Of Science

The prevailing media narrative is that concussions or repetitive subconcussive blows "cause" chronic traumatic encephalopathy (CTE), that CTE "causes" former athletes to commit suicide, and such causal links are proven scientific fact.

The prevailing media message, says Scottish neuropsychiatrist Alan Carson in a 2017 editorial commentary in a British medical journal, is that "concussion is a dangerous condition that causes" CTE, accompanied by mood change, irritability, and suicidal behavior which develops over time into a neurodegenerative disorder and death." What follows is increasing alarm, accompanied by the suggestion that CTE is not just a disorder of elite athletes but a problem for youth sport and that even heading a soccer ball may cause dementia, "a terrifying prospect for parents trying to decide whether to allow their children to participate in sports."

It thus may come as a surprise to many that, despite widespread media coverage and speculation regarding the late-life or post-retirement risks of cognitive impairment or neurodegenerative disease such as CTE in athletes who engaged in sports involving repetitive blows to the head and high concussion risk, and assertions that CTE causes them to be at high risk of suicide, there have been virtually no peer-reviewed, well-designed scientific studies that establish, much less quantify, such risks.

The problem is that, while some scientists who have in the past appeared most willing to push the envelope by arguing that such a cause-and-effect relationship exists in public, may be exercising more caution in reporting the results of their research in scientific journals, that caution is often be lost in translation when their research is reported by the mainstream media.

No consensus on causation

Rejecting the blanket conclusion that there is a definitive causal and effect connection between repetitive head trauma and CTE, most peer-reviewed scientific papers, including the most recent quadrennial international consensus statement on concussion in sport ("Berlin 2016")caution that, while there is clearly a link between CTE and concussions and/or exposure to repetitive head trauma in contact and collision sports, the precise relationship is not yet known.

The conclusion by the head injury researchers in the Zurich 2012 statement put it succinctly: a "cause-and-effect relationship has not yet been demonstrated between CTE and [sports-related concussions] or exposure to contact sports. As such, the notion that repeated concussion or subconcussive impacts cause CTE remains unknown."

The view that the football=dementia meme is scientifically premature has long been espoused by some researchers, including Christopher Randolph, PhD. a now retired professor at Loyola University in Chicago. In a 2013 study of retired NFL players - who largely comprise the highly limited, self-selected universe from which the case studies of brains showing the presence of CTE have been drawn (what scientists call a "convenience sample"), and who the media have widely reported as being at high risk of CTE - Randolph lamented that "the media attention to this issue continues to far outweigh any meaningful results from sound experimental science."

Randolph found that, when compared with healthy controls and with non-athlete patients with a clinical diagnosis of mild cognitive impairment (MCI) commonly presumed to reflect the earliest stage of Alzheimer's disease, the patterns of impairments of the retired NFL players in the study were virtually identical to those exhibited by non-athletes with MCI. The finding lead him and his colleagues to conclude that CTE might not be a distinct neurodegenerative disorder at all.

Randolph's 2013 study appeared to lend support to his theory, first proposed in a 2009 paper, that a long history of repetitive head trauma in contact sports does not cause CTE, but might eventually result in a diminished cerebral reserve leading in some unknown percentage of cases to an earlier-than-normal expression of other common, age-related neurodegenerative diseases,such as Alzheimer's Disease (AD) and Parkinson's (PD). His theory was that the ways in which such diminished cerebral reserve would be expressed (e.g. mild cognitive impairment (MCI), AD, PD, ALS) would not differ from individuals with those diseases who lacked such a history of head trauma, which is precisely what his 2013 study suggests. A 2015 meta-analysis of 153 published cases of CTE, and a 2017 study by Canadian researchers (see discussion below) suggests much the same.

Push-back

The Randolph study, co-authored by no less a concussion authority than Kevin Guskiewicz, Kenan Distinguished Professor, Director of the Matthew Gfeller Sport-Related Traumatic Brain Injury Research Center at The University of North Carolina at Chapel Hill and Director of UNC's Center for the Study of Retired Athletes, was heavily criticized at the time as being flawed by those who identified CTE as a distinct condition and saw a clear cause-and-effect relationship between repetitive head impacts and CTE.

Chris Nowinski, co-director of the CTE Center at the Boston University School of Medicine and co-founder of the Concussion Legacy Foundation (f/k/a Sports Legacy Institute), told PopSci.com in 2013 that it was "preposterous" for Randolph to conclude that CTE might not be its own disease because the retired football players had impairments similar to those of other patients with mild cognitive impairment.

It was not surprising that the conclusion of the Fourth International Consensus Statement on Sports Related Concussions in March 2013 - a conclusion left essentially intact in the Fifth Consensus Statement issued in March 2017 - that the causal link between repetitive brain trauma and CTE had not been established - was met at the time with a sharp push-back from the research group at Boston University's CTE Center, the group most associated with the position that CTE is a distinct neurodegenerative disorder suffered only by athletes in contact and collision sports, and that repetitive trauma can in some cases be the sole cause of the disease.

Typical was the reaction of one of Zurich 2012's co-authors, Dr. Robert Cantu, the CTE Center Director, who told NewJersey.com at the time that, "When I saw that [it said] we need more data in terms of CTE, I wrote to the other authors, in essence, ‘What the hell do you mean that we need more data?' The whole breadth of the document is large, and 99 percent of it I strongly support. But that part of it, I don't support at all. Frankly, it stunned me."

Dr. Cantu's colleague, Dr. Ann McKee, likewise expressed befuddlement at the Zurich 2012's treatment of CTE, telling NewJersey.com, "This is a time that calls for immediate action to reduce the amount of head trauma experienced by athletes in all sports to prevent CTE."

Dr. McKee asserted that it would be "irresponsible to justify inaction by requesting a level of scientific proof that will take decades to acquire," expressing the fear that, to suggest that CTE "may not be part of the impact exposure, but rather due to other yet unidentified factors," could give tacit permission to those who play collision sports to proceed as if there is no urgent problem when concussions arise. (Interestingly, Dr. McKee said much the same thing when interviewed by The New York Times four years later for its article on her 2017 study reporting on the results of her team's examination of all brains donated to the Concussion Legacy Foundation to date: "It's no longer debatable whether or not there is a problem in football - there is a problem.")

The Zurich 2012 statement wasn't intended to have such an implication, argued Dr. Rosemarie Scolaro Moser, Director of the Sports Concussion Center of New Jersey and MomsTEAM.com's sports concussion neuropsychologist, when interviewed by NewJersey.com in 2013. Instead, she cautioned that it would be jumping to conclusions to say, ‘If you play football, you're probably going to get CTE.' Which is not the case. So what differentiates those with CTE from those who don't have it? That's what we need to know."

Skepticism growing

The number of those in the medical, scientific, and concussion research communities voicing serious doubts about whether a direct cause and effect relationship between repetitive brain trauma and CTE existed, as Drs. McKee and Cantu initially claimed, or that proving scientifically that it can be caused solely by such trauma is inevitable, has been growing, even in the face of thousands of media reports reporting the purported link as scientific fact.

"Her study of brains with CTE appear to be all former NFL players, 1 from high school and 1 from college, but what about soccer players?" wondered Scott L. Bruce, MS, ATC, co-author of the 2004 NATA Position Statement on Sports-related Concussions and Founder of the Chattanooga Concussion Prevention Initiative, after viewing the 2013 PBS Frontline documentary "League of Denial" featuring Dr. McKee.

"Or what about athletes from other sports? What about females vs. males? What about those players who play college football, but never go on to play in the NFL? Of the number of high school players who never play college football? Are any of their brains examined for CTE? If so, what were the findings?"

(It should be noted here that some of Bruce's questions, at least with respect to football, were answered four years later. Dr. McKee's most recent study, published in the Journal of the American Medical Association in July 2017,while focused exclusively on American football, reported on the autopsies of 2 pre-high school, 14 high school, 53 college, 14 semi-professional, and 8 Canadian Football League football players, in addition to 111 NFL payers. Of those, Dr. McKee and her team diagnosed CTE in 0 of 2 pre-high school football players, 3 of 14 (21%) of high school players, 91% who played football through college, 88% of those who played in the CFL, and 64% who played semi-pro football.)

Significantly, though, other researchers have not been able to replicate Dr. McKee's findings in other autopsy studies. In a 2013 study, researchers in Canada autopsied the brains of six former CFL players with a history of multiple concussions and significant neurological decline. Only 3 of the six had post-mortem neuropathological findings consistent with CTE. The other 3 had pathological diagnoses of AD, ALS and PD. Even in the athletes whose brains post-mortem showed signs of CTE showed evidence of cancer, vascular disease, and AD.

The case studies, said lead author, Lili-Naz Hazrati of the Tanz Center for Research in Neurodegenerative Diseases in Toronto, "highlight that not all athletes with history of repeated concussions and neurological symptomology present neuropathological changes of CTE." In other words, "a history of participation in professional football and a history of multiple concussions, combined with positive clinical signs and symptoms of progressive neurodegenerative disease, were not inevitably associated in each of the 6 cases with a post-mortem diagnosis of CTE." (emphasis supplied).

Likewise, a study by a different group of Canadian researchers published in December 2016 reported that 35% of the adult population less than 60-years old who underwent a medicolegal autopsy were found to have at least minimal CTE-like changes in their brains, which were usually, but not always, associated with histories of head injury and/or substance abuse. The authors, pathologists at the University of Manitoba, viewed their findings as "broaden[ing] the susceptibility to CTE beyond athletes and military personnel toward the general population" and "raise[d] the possibility that CTE might represent a public health issue in vulnerable populations (e.g. those with chronic substance abuse).

Causal link ‘scientifically premature'

The absence of cross-sectional, epidemiological, prospective or longitudinal studies on CTE has thus led many of the most respected experts and researchers in the concussion community to part company with Drs. McKee and Cantu, at least on the conclusions that can - and can't - be drawn so far from the science.

Like Randolph and others, Hazrati said that the preliminary findings of the Canadian study of CFL players "support the need for further research into the link between concussion and CTE as well as the need to expand the research to other possible causes of [tau deposits in the brain] in athletes," and "point to a critical need for prospective studies with good sampling methods to allow us to understand the relationship between multiple concussions and the development of CTE."

Indeed, it appears that even Dr. McKee and her colleagues have become more circumspect in jumping to scientific conclusions. In discussing the possible causes of CTE in football players, their most recent study makes frequent use of qualifying language ("may"; "suggest"; "unclear") in connecting CTE to a variety of possible contributing causes.

Indeed, they essentially concede that the picture, if anything, is even less clear: Our findings, they write, only "suggest that CTE may be related to prior participation in football"; that a high level of play "may be related to" CTE; and that "[s]everal other football-related factors may influence CTE risk and disease severityincluding but not limited to age at first exposure to football, duration of play, player position, cumulative hits, and linear and rotational acceleration of hits." (all emphasis supplied)

Just as remarkable was the backpedaling by McKee on the significance of a 2015 study, widely publicized at the time and prominently featured in a New York Times article (which, interestingly, seems to have since vanished from the Internet), which found that former National Football League players who began playing tackle football before the age of twelve were more statistically more likely to experience long-term neurocognitive impairment than those who began playing after age 12.

Interestingly, nowhere in her 2017 CTE study does Dr. McKee cite to a 2016 study - which, perhaps because it didn't fit the football=CTE meme, received virtually no attention from the media - in which researchers were unable to replicate the findings of that 2015 study. The 2016 study found no association between age of first exposure to football (i.e. playing football prior to high school) and neuroradiological, neurological, or neurophysiological outcome measures, thus pouring cold water (at least temporarily) on the notion that the earlier an athlete starts playing football, the more likely are their chances of developing later-life cognitive impairment.

In her 2017 CTE study, McKee and her colleagues now admit that it is "unclear" that such later-life cognitive impairment is related to CTE pathology. They also concede that is "unclear if symptomatic hits (concussions) are more important than asymptomatic hits resulting in subconcussive injury", and that it will be "important for future studies to resolve how different measures of exposure to football and age influence outcome."

But just before this article went to press, a new study by researchers at BU was published which, like the 2015 study, reported increased risk of long-term neuropsychiatric and cognitive impairment in a convenience sample of 214 former football players (not just those who played in the NFL, but those who played up through high school or college) who began playing football before age 12. Once again, in sharp contrast to the reporting - or, more accurately, lack of reporting - on the 2016 study finding no link between age of first exposure to football, the media's take on the new study, which suffers from the same self-selection bias as all of the McKee CTE case studies, has been that playing tackle football before age 12 dramatically increases the risk of later-life emotional and cognitive impairment.

Attention to the science

Until fairly recently, the fact that the mainstream of the concussion research community did not share the views of the Boston group, or that many scientists see conducting the debate over CTE in the mainstream media rather than in scientific journals as highly problematic, had not been widely reported.

Some in the media, however, including MomsTeam Institute, have been paying attention to the science all along. In a 2013 interview, for instance, a leading concussion researcher, Dr. Michael McCrea, singled out for criticism a statement by Dr. McKee in League of Denial in which she "really wonder[ed], on some level, if every single football player doesn't have [CTE]."

Ironically, Dr. McCrea's criticism was proven right by Dr. McKee herself. While the vast majority of the reporting on her 2017 study focused on her finding that 99% of the brains of former NFL players she and her team examined showed signs of CTE, lost amidst the hoopla was the fact that not every football player whose brain was subjected to pathological scrutiny at the BU CTE Center had CTE, with neither of the two brains of players who stopped playing before high school, and just 3 of 14 (21%) of the brains of those who stopped playing football after high school diagnosed with the disease.

"This is one of those situations where the story has really raced out in front of the science," McCrea told a reporter for the Milwaukee Business Journal in 2013. He agreed that concussion is a serious injury and the sports industry should take it seriously. But McCrea had a problem with League of Denialusing what he considered speculation that had yet to be proven in clinical research

In an October 2013 article in Deadspin, Matthew McCarthy, a physician at New York-Presbyterian Hospital, wrote about the "puddles of ink" that will be "spilled linking head trauma to chronic traumatic encephalopathy ... written by sportswriters who, frankly, don't understand the science and have long overstated what is actually known about the condition."

About Zurich 2012's conclusion (which was essentially carried over unchanged to the Berlin 2016 statement) that no cause and effect relationship had been demonstrated, Dr. McCarthy pointed out that the statement "runs counter to almost everything you have read about CTE, but it received virtually no media attention in the United States when it was released. In part, that's because it speaks to the far higher burden of proof in the scientific community than the one in the public consciousness. But that's the point. The popular consensus has far outstripped the science."

As for Dr. McKee's statement to NewJersey.com, McCarthy observed that she admitted that, while there was not scientific proof, there was enough evidence to start thinking about making changes. But he wondered whether it is the right thing for scientists to choose "to bang the drum, loudly, even if they can't be sure of the exact message once we're listening."

Not alone

McCrea and McCarthy were not alone in urging caution.

In a June 2013 meta-analysis of the scientific literature on CTE in the prestigious British Journal of Sports Medicine, Andrew Gardner, MD, of the Centre for Translational Neuroscience and Mental Health in Callaghan, New South Wales, Australia, and two highly respected colleagues, Grant Iverson of Harvard and Paul McCrory (the lead author of the last four international consensus statements on sport-related concussion, including the Zurich 2012 statement that prompted the expressions of outrage by Drs. McKee and Cantu), characterized the "strongly presented causal assumptions in the literature relating to concussive and subconcussive brain impact exposure" as "scientifically premature."

Before such a conclusion could be reached, wrote Gardner and his colleagues, systematic research was needed to address five specific unanswered questions:

First, whether similar, or even identical, neuropathological findings are observed in other samples that share clinical characteristics with CTE, such as patients with drug or steroid abuse, alcohol abuse histories, chronic psychiatric problems, cardiovascular/cerebrovascular disease or other health conditions.

Second, the extent to which the reported underlying neuropathology contributes to the reported clinical features (e.g., cognitive deficits, psychiatric features).

Third, whether and to what extent genetics may contribute to the observed neuropathology.

Fourth, whether there are other possible mediator or moderator variables for the association between the neuropathology and the clinical features of the disease.

Finally, whether a methodology can be developed for identifying individuals who are at future risk or might currently have CTE.

"Psychiatric problems and cognitive impairment," wrote Gardner and his colleagues, "usually have multifactorial, not unitary causation - this will require further attention in future studies." He said that the important next step in the process of potentially answering some of the unresolved issues associated with CTE was to conduct large-scale, prospective, longitudinal, clinicopathological studies.

Both Drs. Cantu and McKee have also called for such studies, of course, and their group is leading a multi-center study led by the CTE Center's clinical research director, Dr. Robert Stern, and backed by a $16 million grant from the National Institutes of Health, to gain a better understanding of CTE, its clinical symptoms, and the course of the disease.

But, in the meantime, it appears that the prevailing media narrative continues to be that those that play contact and collision sports in general, and football in particular, are at serious risk of developing a frightening, degenerative, irreversible disease, even though, as noted above and by Dr. McCarthy, "the study of head injuries is a lot more confusing and murky than once suspected - that some very good researchers are now suggesting CTE might not even be a unique disease."

Note of caution

"The interpretation of causation in the modern CTE case studies should proceed cautiously," urges a 2013 review of the scientific literature on CTE, whose authors included such pre-eminent concussion researchers as Willem H. Meeuwisse of the University of Alberta, and neurologist Jeffrey S. Kutcher, MD of the University of Michigan, a co-author of the 2013 American Academy of Neurology's concussion guidelines, and co-author of a 2016 book, Back in the Game, in which he repeatedly and pointedly criticizes the media for "irresponsible" reporting on CTE.

"Studies examining a connection between sporting head injury and outcome are necessary," writes Alan Carson of the University of Edinburgh in August 2017 in the British Journal of Medicine, "but it's unhelpful when the results are rushed to mainstream media outlets before proper consideration to interpretation, limitations, and replication." He argues that it is "unfair" to a public unfamiliar with the technical problems with these studies, such as reproducibility. "Researchers should exercise appropriate caution and responsibility in how they present, and more importantly disseminate, results."

The authors of the Canadian study of CFL players agreed: "Our findings," they said, "advocate caution in the clinical diagnosis of CTE in patients with histories of contact sports and neurocognitive decline, as other diagnoses of neurodegenerative diseases are also possible."

It is important to note that these researchers are not saying that such a causal link 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."

"Until the risk factors for developing CTE are better defined," says Steven Broglio, PhD, AT, of Michigan NeuroSport and Director of the NeuroSport Research Laboratory at the University of Michigan, strategies designed to reduce those risks will necessarily remain "an educated guess, at best."

"Ultimately, a comprehensive approach that includes, but is not necessarily limited to, modifications of head impact exposure, equipment modifications, rule changes and enforcement, and changes in game culture may all be needed to reduce injury risk," Broglio concludes.

Real world consequences

Also largely lost in the sensational reporting about CTE - and, some have argued, in part because of such reporting - are the real world consequences of the football=dementia meme, one in which anyone who ever played football, regardless of level, and even those who played other contact or collision sports such as hockey, soccer, or lacrosse, may be, to a greater or lesser degree, considered "collateral damage."

In his Deadspin article Dr. McCarthy wrote of an encounter with an unidentified former NFL player in the psychiatric ward of a New York hospital who told him he 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.

Dr. McCarthy's thoughts were echoed in a 2016 article by Dr. Iverson in the Journal of Neuropsychiatry and Clinical Neurosciences in which he suggested that, "given the thousands of media stories relating to contact sports and CTE, it might be important to examine whether repeated exposure to news stories elicits or reinforces suicidal ideation in some at-risk athletes," and, pointing to studies relating to the influence the media on suicidal behavior, that "there are several mechanisms by which the media coverage reporting a causal relationship between contact sports, CTE, and suicide could be contributing to psychological distress in former athletes."

Exhibit A of those real-world consequences, say the authors of a 2016 editorial in the British Journal of Sports Medicine, 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.

How, asked the 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, they assert, the media, ably aided and abetted by Dr. McKee, Boston University's CTE Center, the Concussion Legacy Foundation, and the PBS series, Frontline, has used the results of autopsies of the brains of a small, self-selected group of former athletes, a staggering 96% (now 99%)* of whom were found post-mortem to have 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 and CTE=suicide narrative, and labels anyone who dares to challenge that narrative or call for further study a ‘CTE denier' or a ‘shill' trying to advance their own vested interests, confuse the public and conflate the issues.

Taking its toll

In interviews for this article, a number of clinicians who routinely treat athletes with post-concussion syndrome (i.e. patients whose symptoms after suffering a sports-related concussion persist for months or years) were worried that their patients, hearing media reports about athletes suffering symptoms associated with CTE (such as depression), were losing hope of a full recovery. "As a clinician, I see patients that come to our clinic at months and years after they've been diagnosed with a concussion," said Shannon Bauman, MD, director of the Concussion North clinic in Toronto, Canada. It is "very concerning," she says, "when her patients share their story and fears that they will not recover, and are being told by physicians and other health care providers that they trust that they will likely not get better and that living with lingering symptoms was likely to be their ‘new normal.'"

"Without hope, patients begin to believe that they will not recover," Bauman said. "For young athletes, this can be devastating. Without hope, they begin to believe the messaging from media focusing on professional athletes who have died and been found to have CTE. This takes a great toll on the mental health of a patient recovering from a prolonged concussion leading to increased anxiety and depression, and even thoughts of suicide."

The problem, says Bauman, is that too many media stories focus on professional athletes, CTE, and poor outcomes of prolonged concussion (or sports exposure to repetitive head traumas), and too few stories about athletes who make full recoveries and improve (even after years of concussion symptoms). This unbalanced media coverage further fuels the mind-set of the public and patients who are now believing that they, too, may not recover. We need to restore hope and share positive stories of the many patients who do recover and the importance of having medical treatment and care provided by those who have an interest in managing cases of persistent symptoms."

Likewise, in her practice, Elizabeth Pieroth, Ph.D., Associate Director of North Shore University Health System's Sports Concussion Program, says she has seen a number of youth patients (athletes and non-athletes) who have sustained a concussion and believe they now have or are going to develop CTE. "On too many occasions, I have had young people crying in my office that they were going to ‘die of CTE,' even after just one concussion."

As heartbreaking as such encounters are, said Dr. Pieroth, she saw a silver lining: at least they afforded her the opportunity to educate them on the current state of the science on concussions and CTE. "What worries me," said Dr. Pieroth, "are the countless people who have the same fear but are not being seen by healthcare professionals with the appropriate training and experience to adequately address this issue. This worry has become irrational to the point that they are afraid to engage in normal activities for fear of further brain damage, even when it is clear to us that they have recovered. It's as if they have equated the diagnosis of concussion with doom and a sentence of irrevocable brain damage."

The experience of Rosemarie Scolaro Moser, Ph.D., Director of the Concussion Center of New Jersey, was much the same. "In the past year, we've seen more young athletes at our Center who are overly anxious and worried about CTE," she said. "This worry has become irrational to the point that they are afraid to engage in normal activities for fear of further brain damage, even when it is clear to us that they have recovered. It's as if they have equated the diagnosis of concussion with doom and a sentence of irrevocable brain damage." She pointed to one patient, a high school athlete, who had clearly recovered from his concussion - to the point that he was performing in the superior range on neuropsychological testing and getting As in school - who was nevertheless so worried, anxious, and paranoid about hurting his head again that he thought he'd suffered another concussion when he happened to turn his head quickly from side to side! She wondered whether the media frenzy over CTE was creating a new medical condition she dubbed "Concussion Anxiety Syndrome."

Like Dr. Pieroth, she said that it was the responsibility of concussion specialists to directly address the emotional component of concussions and undo the myths to which athletes and their parents have been exposed as result of the "media hype" about CTE. "It's not always easy undoing the misinformation out there. Now, it is my job not only to help manage the concussion and facilitate recovery, but to challenge the myths and educate athletes and parents about the facts. We still do not have clear, medical, scientific data that indicates that concussion leads to CTE. We still don't know enough about it. We do know that most concussions resolve, that we should expect concussions to resolve, and that there are plenty of athletes who have had multiple concussions who do not have the emotional disturbance, brain damage, and suicidality that may be portrayed in the media.

Reductionist formula

In a paper published in the journal Behavioral Sciences and the Lawscientists at the University of Colorado School Medicine (UCSM) acknowledge that, while "it simply makes good clinical sense to continue practices to minimize the number of concussions sustained and that allow for adequate recovery after any concussion" while awaiting the results of further studies on the possible link between contact sports and CTE, it is "essential to avoid embracing preliminary results derived from relatively small case numbers and methodologically problematic studies as undisputed medical fact, and to allow such results to redirect clinical practice away from established standards."

The authors noted 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," wrote lead author Hal Wortzel, MD of the Department of Psychiatry at USCM, "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]."

Other scientists agree. "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 recent 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.

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."

Is There a Doctor in the House?

To counter the misinformation in the media, Wortzel and his colleagues recommended 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 used 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."

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. Similarly, neither the clinicians nor the media should react to only one aspect of a player's presentation.

Following the Berlin 2016 guidelines, better implementation and greater, consistent dissemination should be the areas of emphasis. This will allow the concussion ‘picture' to look more like that on an HD ‘plasma' rather than the isolated ‘pixels' that have been the focus of so much attention. As doctors," they say, "we need to lead in management and broader implementation of the best guidelines we have - Zurich 2012. Social media may be an essential ally in conveying the ‘whole picture'."

Repairing the disconnect

More recently, the authors of a September 2016 BJSM editorial proposed a three-pronged approach to repair the obvious "disconnect" between the science on CTE and the way the subject is reported by the media.

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:

  1. 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;
  2. an ‘illusion of validity' bias, which falsely equates research quantity and quality; and
  3. 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 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.

Troubled by the media's reporting on the 2017 McKee CTE study, Uzma Samadani, an Associate Professor in the University of Minnesota Department of Neurosurgery, would go further. "In my opinion, there should be consequences from the journal (up to and including retraction of the article) when the primary author blatantly encourages and allows the media to misinterpret findings of a paper." Perhaps ineligibility for state and federal research funds, Samadani said, would help curb the current trend towards "rabid sensationalizing" of what she characterized as "biased and uncontrolled studies" on CTE.

Making headway?

Are the years of criticism from the scientific and research community having any effect on the prevailing media narrative about CTE? Some, but not much.

It is a given that some journalists in the popular press - perhaps most - will continue to get ahead of the science on CTE. Typical were news reports in November 2013 by numerous media outlets, including CBS News and The Atlantic, stating as fact that eight former NFL players, including Hall of Fame running back Tony Dorsett and fellow Hall of Famer Joe DeLaumielleure, had been diagnosed with CTE, when it appeared that the tests they underwent, while finding signs consistent with the presence of the disease, made no definitive diagnosis of CTE, because, as TauMark, the company that made the test, itself noted on its website, "A definite diagnosis is only possible with autopsy when tau proteins are found in distinctive brain areas," and all of the 8 were still very much alive.

"Just as the press touts an unpublished, nonexistent study by researchers standing to profit from the claims [that their test has been proven to diagnose CTE in living patients], actual peer-reviewed science clashing with the ... claims ... goes overlooked," wrote Dan Flynn, author of The War on Football: Saving America's Game.

In a lengthy, well-researched, and powerful article in the Spring 2015 issue of the NCAA's Champion magazinemany top concussion experts remained critical that the media narrative about sports-related concussion continued to be dominated by media reports on the work of Dr. McKee. In a classic case of too little, too late, Dr. McKee provided a belated mea culpa, conceding that, "There [was] 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."

Perhaps surprising is that it has been Dr. McKee's colleague, Dr. Robert Stern, appears to be on a one-man crusade to try to get the media not to 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 "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."

Sign of The Times

Most recently, it was heartening to see that the publication in the Journal of the American Medical Association in late July 2017 of Dr. McKee's CTE case studies of athletes participating in American football - a study finding CTE present in 99% of the brains of former NFL players study - prompted a significant amount of push-back from many scientists, clinicians, and researchers to the way in which the media covered the story, accompanied by continued reminders that the facts about CTE are far more nuanced and uncertain that many in the media would have us believe.

Typical was an op-ed in the San Diego Union-Tribune by orthopedic surgeon, sports medicine doctor, and former NFL head team physician, David J. Cho, writing under the byline, ProFootball Doc, who said it was time "to get to the truth about concussions and CTE," to "stop the media and public hysteria," and for both sides to "stop campaigning for their agenda and to let science take the lead."

Pointing to a concussion meeting of the American Academy of Neurology at which researchers and clinicians contradicted the media and public narrative on CTE by stating that the association between trauma and CTE was "unclear" and the association between CTE and symptoms was "unknown" (positions which, even such true CTE believers as Dr. McKee and her BU colleagues, Drs. Cantu and Nowinski, now are on record as sharing), Cho's bottom line was this: "the media/public narrative is much different than the scientific narrative."

In the same vein, Russell M. Bauer and Michael S. Jaffee, professors at the University of Florida, asserted in a recent blog that "the massive attention given to concussion management and prevention has produced a level of public pseudo-awareness about CTE that currently outstrips what is scientifically known about the disorder."

They go on to point out that the results of the McKee study, as reported by the media, lead many people to think that "CTE is an all but inevitable outcome of playing football or other sports." "But is it?" they ask. "And most importantly for parents, coaches, and fans, what is the actual risk to my kids, my players and my team?" The answers to these questions, they argue, while not yet known, are likely to be "considerably less than would be suggested by available research findings."

blog from the Alex Berezow of the American Council on Science and Health noted that, while the headline writers, predictably, went crazy in reporting on Dr. McKee's new study, implying that 99% of football players who make it to the NFL will develop CTE, the implication "couldn't be further from the truth." As for the study itself, Berezow's view was, unfortunately, it added little, "except more confusion, to the current debate."

For her part, Dr. Hazrati continued to be critical of the conclusions being drawn from Dr. McKee's most recent study. In an interview for a lengthy article in the Toronto Sun under the headline, "Conclusions drawn after Boston University CTE study are misleading, troubling", she continued to point to her own examinations of brains of deceased professional athletes, in which she has detected less prevalence of CTE, and less severe cases, than her American counterpart.

"What I'm seeing, in ballpark numbers, is 30% of our cases have some CTE pathology," Hazrati told the Sun. "Most are basically very low-stage pathology. I've got CFL players, I've got hockey players and I've got brains from some other athletes - rugby players, wrestlers, boxers, sports like that. So it's a mix. But they're all professional athletes. We don't see that volume of advanced cases that have been reported (by McKee). Only 30% of our brains have CTE. And about 30% don't have anything."

Hazrati's bottom line: "None of these post-mortem brain autopsies are going to solve the CTE (mystery), at all. You cannot solve the cause of CTE by looking at brains of deceased people." Since there is still no way to detect CTE in the living, Hazrati asked, "How can you even think about who's the most susceptible? Who's not? What age is the worst? Just looking at these brains (posthumously), you cannot say any of that. It's just impossible at this point."

Media divide

On the other side of the media divide in reporting on CTE, not surprisingly, continues to be the New York Times, which, it is widely acknowledged, began the CTE=dementia and CTE= suicide memes ten years ago with the publication on January 18, 2007 of a now famous article about former Philadelphia Eagle André Waters, who, after committing suicide, was diagnosed by trailblazing pathologist Bennet Omalu with CTE. As far as the Times was concerned, Dr. McKee's new study didn't add to the debate; it ended it: "It is no longer debatable whether or not there is a problem in football - there is a problem," Dr. McKee said.

Conspicuously absent from the article, however, was any mention of Dr. McKee's concessions in the actual study that several other factors besides prior participation in football may influence CTE risk and disease severity, including factors other than cumulative hits to the head. Nor was there any mention of her startling admission that it was even "unclear" whether symptomatic hits (concussions) were "more important" than asymptomatic hits resulting in subconcussive injury" in CTE risk, disease severity, and progression.

If no one, including Dr. McKee, knows whether CTE is caused solely by concussions, solely by repeated blows to the head, or a combination of both, and there is evidence that genetic factors, use of alcohol, drugs (including opioids and PEDs), and pre-existing psychological problems might affect risk, one might reasonably ask why it was that the Times re-stated for the umpteenth time that scientists "believed [CTE] to be caused by repeated blows to the head," and that what remained to be learned was not whether repeated blows to the head caused C.T.E., but rather "how many blows to the head, and at what levels, must occur for C.T.E. to take hold?" It is hard to draw any conclusion other than that such uncertainty didn't fit neatly into the Times' 10-year-old football=dementia meme.

The value of the study in determining the risk of developing CTE also appears to have been greatly exaggerated. While Dr. McKee admitted to the Times that there was a "tremendous selection bias" and that the brains autopsied were far from a random sample, the article nevertheless viewed 110 positives as "significant scientific evidence of an N.F.L. player's risk of developing C.T.E."

Most scientists, however, take issue with that assessment, including Dr. Samadani, the University of Minnesota neurosurgeon. "McKee saying that 110 of 111 brains she examined from NFL players have CTE is the equivalent of an emergency medicine doctor saying that 110 of 111 patients presenting to the emergency department with a tibia at right angles to a fibula have a fracture somewhere in the bones: she is seeking disease among those who report being symptomatic from it and therefore [she is not in a position to] estimate prevalence in a general population."

Samadani also points out that, "totally lost in this debate are studies investigating the benefits of sports for children in particular. The average American 16-year-old boy who plays football has a BMI greater than 26. What sporting options exist for this child who, by virtue of his body build, is already at risk for premature hypertension, obesity, diabetes, cardiovascular disease, stroke, dementia, and 13 types of cancer? In the vast majority of people, the benefits of playing sports outweigh the risks of associated injury." To Samadani, the focus should be on reducing risk in sports; increasing participation for all children; and understanding benefits.

In his 2017 journal commentary, Carson agrees: if sports governing bodies want to get serious about preventing dementia in their former athletes, he argues that it "might make more sense to follow the existing evidence base for dementia prevention." Given consistent and robust findings on the value of being physically active into old age, Carson believes that "targeting defined risks rather than speculative ones seems a far better place to start."

In the meantime, as the Times article reminds us, repairing the disconnect between the science on CTE and the media is a long way off.

__________________________________________________

Brooke de Lench is Founding Executive Director of MomsTEAM Institute, Publisher of MomsTeam.com, producer/director of the PBS documentary, The Smartest Team: Making High School Football Safer, and author of Home Team Advantage: The Critical Role of Mothers in Youth Sports (HarperCollins) and Director of NCAA-DoD grant winning program Smart Teams Play Safe . Follow her @BrookedeLench Contact her at delench@MomsTeam.com

Lindsey Straus, JD has been Senior Editor of MomsTEAM.com since its launch in 2000. In May 2016, Ms. Barton Straus was honored by the American Academy of Orthopaedic Surgeons with its prestigious Media Orthopaedic Excellence (MORE) award for her article, Counting Pitches Can Save Young Players' Arms But Not Always Used Consistently.

MomsTEAM is a 501(c)(3) non-profit which does not solicit nor accept donations from the National Football League, USA Football, or Pop Warner.

This article was originally published in Medium.com on September 20, 2017.


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