CTE: Media Continues To Be Ahead Of Science

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.