Late last fall, as the NFL playoff picture began to take shape, I was summoned to the psychiatric ward of my hospital. As an HIV specialist, I routinely encounter patients with mental health issues who have trouble taking their medications, but when I read the page requesting my consultation, I noticed something unusual. The name of the patient I was asked to examine was one I recognized. In the interest of patient privacy I'll only mention that the name matched that of a successful NFL player.
When I entered the patient's room, I found an enormous man in a rumpled mess on the floor. He was barefoot, wearing blue hospital scrubs, and he hadn't shaved in several days. He looked bloated and exhausted, but I could still recognize the man I watched during his NFL playing days. When I sat down on one of the two narrow hospital beds in his room, he flinched and turned away from me.
"I'm Dr. McCarthy," I said softly. "Your medical team asked me to come by to talk with you. Do you have a few minutes?"
We sat in silence—a brief silence that physicians eventually become comfortable with—before the man began to speak. He told me that 24 hours earlier, he had tried to kill himself. He'd made a string of bad business investments; his interpersonal relationships were crumbling; and he was having trouble with his memory. Like many in the ward, he said he couldn't see a reason to continue living this way, and as a result he had stopped taking all of his medications. He also told me he knew he had "that head trauma thing." Because he had not mentioned his days in the NFL, I did not either. But I knew what he was referring to.
"CTE?" I asked. He nodded, and when I saw the look on his face—the fear, the despair—I knew I needed to choose my words carefully.
This season, puddles of ink will be spilled linking head trauma to chronic traumatic encephalopathy, or CTE, explaining how cognitive and behavioral changes continue to occur in current and former NFL players, destroying their once remarkable lives and the lives of those around them. You will see these stories on the front pages of the most prominent newspapers and magazines in the country, written by sportswriters who, frankly, don't understand the science and have long overstated what is actually known about the condition.
Despite what you've read, the cause-and-effect relationship between head trauma and CTE is far from scientifically verified. The direct and seemingly obvious connection tends to be taken for granted by journalists, but it hasn't been established at the highest level of evidence.
As I explained to the ex-NFL player what I knew about CTE, he began to ask questions. I told him I wasn't a neurologist, but as a former athlete, I'd kept up with the scientific literature about head trauma because my former teammates and colleagues had so many questions. I'd recently seen something that made the man perk up. At the 4th International Conference on Concussion in Sport, which had recently taken place in Zurich, world experts gathered to discuss the state of head-trauma science. At the end of the conference, a consensus statement was released that said the following: "A cause and effect relationship has not as yet been demonstrated between CTE and concussions or exposure to contact sports."
Think about that for a moment. 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.
For those of us involved in clinical research and accustomed to the sluggish pace of medical advancement, this is not surprising. Some physicians—including Ann McKee, co-director of the Boston University Center for the Study of Traumatic Encephalopathy—are understandably uncomfortable with this. As she put it to one of the few reporters who covered the consensus statement: "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. And it is now irresponsible to justify inaction by requesting a level of scientific proof that will take decades to acquire." There is no comprehensive body of research into head injuries, but there's enough to start thinking about change. So McKee and others have chosen to bang the drum, loudly, even if they can't be sure of the exact message once we're listening.
But there are also consequences to that. As I tried to explain the scientific controversy to the former NFL player in the psychiatric ward, I thought about all of the others like him. They are the subjects of the head-injury panic and, potentially, its collateral damage, too. My patient knew of CTE only what had been filtered down to him through the popular imagination. How many other ex-jocks similarly believe that a set of possibly transient cognitive difficulties unrelated to their football careers is in fact the first expression of an unrelenting, progressive physical condition that will ultimately ruin their lives? How many saw the headline, "Doctors: Junior Seau's brain had CTE," and started connecting dots between concussions and suicide that scientists aren't even close to connecting? How many know that 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? How many former NFLers think they're walking around right now with a death sentence over their heads?
Common sense tells us that banging our head against a wall, or a lineman, seems like a bad idea. But the truth is that we don't know what the NFL experience really means for our neurons. An aging athlete should not 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.
I hope there is a happy ending for the retired player I met in that psychiatric ward. He was placed on antidepressants and eventually discharged; he made a follow-up appointment to see me in my clinic, but he never showed up. He presumably went back home, wherever that is, and I don't know how he's doing today. On more than one occasion I've had to resist the morbid urge to google his name along with the word "obituary." But to him and to others, I would say this: the next CTE article you read might be taking leaps that the science doesn't support.
This isn't to discount the work being done to pull back the curtain on what's happening to so many former players, or what the findings we have made—which are numerous and compelling—actually mean. We just haven't followed them all the way to the bottom of the well yet.
If there is one thing you take away from this piece, I hope it's that line from the consensus statement. It's worth repeating: a cause and effect relationship has not as yet been demonstrated between CTE and concussions. And the next time you read a story about CTE, remember it, and understand that the author, while well meaning, likely isn't thinking about the collateral damage. But others are. For those wondering if they are suffering from this very real, very complex condition, remember that there is always someone to talk to.
The National Suicide Prevention Lifeline is 1-800-273-TALK
Matt McCarthy is an Infectious Disease Fellow at New York-Presbyterian Hospital. You can follow him on Twitter here.
Image by Jim Cooke