CTE: Discovery of a New Disease

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    Mike Webster's Legacy

    Dr. Bennet Omalu   Forensic pathologist who discovered CTE

    A forensic pathologist, Omalu conducted the autopsy of Pittsburgh Steelers center Mike Webster, which led to his discovery of a new disease that he named chronic traumatic encephalopathy, or CTE. He is currently the chief medical examiner of San Joaquin County, Calif. and a professor in the UC Davis Department of Medical Pathology and Laboratory Medicine. He spoke to FRONTLINE’s Michael Kirk on March 25, 2013.

    Doctor, when you looked at Mike Webster's body, when you look at any body but especially the body of a football player, do you start at the feet, and did you see injuries all over his body, his hands?

    No, no. Ironically, in fact I will tell you later, they don't have any injuries externally. They don't have any injuries externally.

    In fact, when I opened up his skull, in my mind I had a mental picture of what his brain would look like based on my education. I was expecting to see a brain with Alzheimer's disease features, so a shriveled, ugly-looking brain.

    But upon opening his skull, Mike's brain looked normal. It looked normal. So when I saw it -- and again, there was so much commotion outside I was oblivious of; I was focused on what I was doing. When I saw his brain, I was actually disappointed, and I'm like, "No, this is a joke."

    So the technician took out the brain, handed it over to me. For autopsies we examine the brain in the fresh state unless there is something unusual, then we fix the brain in a chemical called formalin so we could analyze it later.

    So I picked up the brain to cut it. I was thinking -- a lot was going on through my head. ... So I stopped. I said: "No, let me fix this brain. Let me spend time with this brain. There is something. Something doesn't match." ...

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    Mike Webster's Legacy

    Dr. Bennet Omalu   Forensic pathologist who discovered CTE

    A forensic pathologist, Omalu conducted the autopsy of Pittsburgh Steelers center Mike Webster, which led to his discovery of a new disease that he named chronic traumatic encephalopathy, or CTE. He is currently the chief medical examiner of San Joaquin County, Calif. and a professor in the UC Davis Department of Medical Pathology and Laboratory Medicine. He spoke to FRONTLINE’s Michael Kirk on March 25, 2013.

    OK, so you fixed the brain. They section it, they stain it, and they send you back slides. Is that --

    I fixed the brain, and because I did not understand what was going on, I chose to forget about it. It was causing me such distress, if you could call it that.

    Really?

    Yeah, because I couldn't explain it. So what I did was I went to the library and I started ordering papers. I remember one of the librarians called me, said he simply wanted to confirm I was who I was, because I was ordering too many papers, because I wanted to read, to find out is there some disease entity I wasn't aware of. But I kept on going.

    In the literature, everybody was giving it descriptive names, like nobody gave it generic names. Nobody had the, I could say the courage to give it a specific disease, identify it as a specific disease entity, describe the pathology, OK, so that eventually it would have its own international Classification of Diseases number. ...

    So I processed the brain; I examined his brain. There were no features of Alzheimer's disease. I kept it very quiet, because I was afraid. My youthful exuberance was manifesting itself -- I was aware of that -- so I kept it very quiet. I could be wrong. So I did this.

    I sent the tissues to the University of Pittsburgh brain lab to Dr. [Ronald] Hamilton, who was my teacher, a very good guy. So they ran the tests. Nobody knew whose brain it was. So one day I stopped over for a conference, and I stopped over at the lab to pick it up. I got it. I was afraid to look at it. So I left it on my desk for maybe another couple of months, because I was, you know --

    What were you afraid of?

    Of the unknown. I was afraid of letting Mike down. (Laughs.) I was afraid. I don't know. I was afraid I was going to fail.

    So one day I had a very busy day. It was I think a Friday night. I was single, was at work around 7:00, was in my office. … So I saw his slides. So I said, "Oh, Mike Webster." So I pulled them down.

    While munching on my apple I put the slides in and looked. Whoa. I had to make sure the slides were Mike Webster's slides. I looked again. I looked again. I saw changes that shouldn't be in a 50-year-old man's brains, and also changes that shouldn't be in a brain that looked normal. …

    I saw abnormal proteins in his brain, so-called neurofibrillary tangles, threads. But I looked at several, you know, the topographic distribution. It was different from Alzheimer's disease. Again, that complicated my disposition, my state of mind. So I took the slides home, said, "This is something I need to spend time with." ...

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    Dr. Bennet Omalu   Forensic pathologist who discovered CTE

    A forensic pathologist, Omalu conducted the autopsy of Pittsburgh Steelers center Mike Webster, which led to his discovery of a new disease that he named chronic traumatic encephalopathy, or CTE. He is currently the chief medical examiner of San Joaquin County, Calif. and a professor in the UC Davis Department of Medical Pathology and Laboratory Medicine. He spoke to FRONTLINE’s Michael Kirk on March 25, 2013.

    The next step in epidemiology is to have your peers confirm it. When you find a sentinel case, you show it to your peers who confirm it, you publish it, you look for a second case. Then with the third case it becomes a case series. You publish the case series. The next thing now, is a cohort. You look for a cohort; you describe the cohort. These were the phases I learned in epidemiology.

    I chose to show it to Dr. Hamilton, and I called Dr. Hamilton, stopped over. I said, "Look at these slides." He looked at them, said, "Oh, Alzheimer's disease." He said: "Wait a minute. How old is this patient?" I said, "50." He said: "Really? What were his symptoms?" I said, "That's Mike Webster."

    He looked at me. He was like -- you could see he was puzzled, and I just asked him: "This is what I think. Am I crazy or not?" He said: "No, you're not. This is something." He said, "OK, why don't you go show it to Dr. DeKosky?" Dr. Steven DeKosky is a big, established name in Alzheimer's disease research. He is a prominent neurologist. He is now the dean of the University of Virginia Medical School. ...

    So I came. He said, "Oh, Dr. Hamilton said you have an interesting case." I said, "Yes." So I showed him, said, "This is Mike Webster." And he confirmed, he said, "No, this is not Alzheimer's disease. This is something else. This may be similar to dementia pugilistica." I said, "Yes."

    Rather than spending two minutes in his office, I spent two hours. We were talking. When I left his office that day, such a prominent, established guy, me, a nobody, and he gave me two hours of his time, I knew I was onto something. ...

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    Dr. Bennet Omalu   Forensic pathologist who discovered CTE

    A forensic pathologist, Omalu conducted the autopsy of Pittsburgh Steelers center Mike Webster, which led to his discovery of a new disease that he named chronic traumatic encephalopathy, or CTE. He is currently the chief medical examiner of San Joaquin County, Calif. and a professor in the UC Davis Department of Medical Pathology and Laboratory Medicine. He spoke to FRONTLINE’s Michael Kirk on March 25, 2013.

    After I looked at it over and over and over, I was convinced this was something, I said: "OK, it's something, but don't make the mistake other people make and just publish it and give it a descriptive name. Name it a disease, give it a name, present it as a disease. Package it. Develop a pathogenetic concept for it."

    And again, then I was attending business school at Carnegie Mellon University, so I had taken classes in brand management: How do you create brand equity? How do you commoditize information or equitize information, add value to something that has no value? I know in branding, a name is very important, and not just a name, a name people can remember, a name that has a good acronym, OK?

    But at the same time, I was thinking of the possibility that I could be wrong. So rather than boxing myself into a corner, give it a descriptive name that has a good acronym, so if you're proven wrong you could hide under this descriptive terminology. "Hey, that is nothing. 'Chronic' means long-term, 'traumatic' means it's associated with trauma, 'encephalopathy' means a bad brain." So I had both ends covered. ...

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    Dr. Bennet Omalu   Forensic pathologist who discovered CTE

    A forensic pathologist, Omalu conducted the autopsy of Pittsburgh Steelers center Mike Webster, which led to his discovery of a new disease that he named chronic traumatic encephalopathy, or CTE. He is currently the chief medical examiner of San Joaquin County, Calif. and a professor in the UC Davis Department of Medical Pathology and Laboratory Medicine. He spoke to FRONTLINE’s Michael Kirk on March 25, 2013.

    So I was excited. I thought the football industry would be happy with our new discovery. I thought naively that discovery of new information, unraveling new information, redefining concepts, I thought the football industry would embrace it -- again, about my business experience -- utilize it, turn it into some type of utility, some type of utility function to enhance the game.

    And save lives or something?

    Yes, just like, enhance the game and enhance the lives of the players, and save, on a macroeconomic level, eventually save money for the entire country, because there are tangible and intangible costs of CTE in terms of family's lost income, so much. It is a multidimensional disease.

    So I thought it was something of great utility function, something of value that will enhance the brand of the football industry, some type of equity. That was what I thought in my naive state of mind. But unfortunately I was proven wrong, that it wasn't meant to be that way. ...

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    Dr. Bennet Omalu   Forensic pathologist who discovered CTE

    A forensic pathologist, Omalu conducted the autopsy of Pittsburgh Steelers center Mike Webster, which led to his discovery of a new disease that he named chronic traumatic encephalopathy, or CTE. He is currently the chief medical examiner of San Joaquin County, Calif. and a professor in the UC Davis Department of Medical Pathology and Laboratory Medicine. He spoke to FRONTLINE’s Michael Kirk on March 25, 2013.

    But within two years of Mike Webster's death, I came to work one morning, and everybody there said: "Hey, there is the brain guy. We have another case for you." I said, "What are you talking about?" They said, "Oh, Terry Long died." I'm like, "Who is Terry Long?" He said: "Oh, he's another NFL player. He died. You were not on duty so Dr. [Abdulrezak] Shakir who did the autopsy saved the brain for you. His brain looked normal." I said: "Really? Another football player?"

    To be honest with you, back then I didn't know about football. I didn't even know what a quarterback was. I didn't know about line of scrimmage. I did not know nothing about football.

    So I chose to speak to Terry Long's wife, because I wanted to see if Terry Long's symptoms were similar to Mike Webster's, and of course they were similar. Mike Webster attempted suicide multiple times. Terry Long attempted suicide multiple times. Terry Long ended up succeeding in killing himself. How? He drank ethylene glycol, antifreeze. ...

    Well, you looked at Terry Long's brain, or I guess slides, the sections, the stained sections of where they had the slides, and you saw CTE. Then what? I mean, did you feel --

    When I saw Terry Long's case, I became more convinced that this was not just an anomaly, a statistical anomaly. But with a second case, again, my epidemiology, my knowledge in epidemiology, a second case may still be a statistical anomaly. ...

    Mike Webster was CTE Part I, Terry Long CTE Part II. I was waiting to get to the third case to make it a case series, because once you see a case series, that means this is less likely to be a statistical anomaly. You're seeing a trend.

    A cohort.

    Yes. So that wasn't the -- I published it, the second case. I didn't face so much challenge. And then the third case, I think it was Andre Waters.

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    Dr. Ann McKee   Neuropathologist at Boston University

    Dr. Ann McKee is the director of neuropathology at the Department of Veterans Affairs in Bedford, Mass. In her research, McKee has discovered the disease in dozens of former football players. This is the edited transcript of an interview conducted with FRONTLINE's Michael Kirk on May 20, 2013.

    OK. So what are you seeing, as you get closer and closer and more and more brains that's different than what Omalu saw with Webster, [Terry] Long, and --

    Well, I think the main thing is that you don't have to be at a professional level to be getting the kind of trauma that leads to this. Owen Thomas was an amazing case. Personally, it was probably one of the most -- you know, I don't know. What do you call that, the case that changes your concepts, the case that -- a pivotal case.

    Here is a 21-year-old, played college football. How many people play college football? And, you know, he dies of suicide. We don't know if that's related. But in his brain, he has unmistakable changes of this disorder. And not just in one or two spots like Eric Pelly, but in like, 20 spots, in a lot of spots in his frontal lobe. He's 21. He's so young. You know, that changes the game to me.

    And then, that he -- you know, that he took his own life, I don't know. Again, maybe I read something into that, but it says something to me about his awareness of his condition, and that it breaks your heart, you know, that we could have athletes who are doing something that they love, because they love it, and it could be really damaging themselves in a way that's so destructive. ...

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    Dr. Ann McKee   Neuropathologist at Boston University

    Dr. Ann McKee is the director of neuropathology at the Department of Veterans Affairs in Bedford, Mass. In her research, McKee has discovered the disease in dozens of former football players. This is the edited transcript of an interview conducted with FRONTLINE's Michael Kirk on May 20, 2013.

    So it's the summer of 2010. How do you hear about Owen Thomas, and how do you get the brain? What are the facts of the case, and what do you find when you look?

    Yeah. I don't remember exactly how we got the brain. I know in retrospect that the family wanted to donate the brain because they thought he would be a control, because he had loved football. They had heard about the work. They knew how important football was to Owen, and they thought he would be -- if they could contribute to the work in any way, they wanted to.

    I remember looking at the brain, expecting -- I knew it was a 21-year-old that had committed suicide, and I was fully prepared to see nothing. I remember late at night looking at the brain and thinking, just going to knock this one off. And I just -- it just floored me. It just -- I just couldn't believe what I was seeing, that in the brain of a 21-year-old, you can see damage.

    And it wasn't just one spot; it was 20 spots. It was eating away at multiple areas of his brain. And a 21-year-old. Honestly, even now, it just -- it's something I couldn't conceive of before, you know. To see a process that's destroying brain cells and looks like it's spreading in such a young kid, I don't know, it just -- it just floored me.

    Had he had lots of concussions?

    He had never had a concussion, as it turns out. He only played football.

    Ergo?

    Ergo those subconcussive hits, those hits that don't even rise to the level of what we call a concussion, or symptoms, just playing the game can be dangerous for some people.

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    Chris Nowinski   Co-director, BU Center for the Study of Chronic Encephalopathy

    A Harvard football player turned professional wrestler, Nowinski’s experience following a debilitating concussion led him to found the Sports Legacy Institute, a nonprofit dedicated to research and education around head injuries. He spoke to FRONTLINE’s Michael Kirk on June 12, 2013.

    ... How is what Ann is discovering evolving? I think the Owen Thomas case happens. Let's talk about Owen Thomas for just a second. ...

    As an advocate, what was great about Ann's work at the brain bank was not just these amazing scientific discoveries that are sometimes hard for people to understand, but also that we were again putting more faces to the disease and showing that it exists in more places than we thought it did before.

    I mean, if there's anything I've learned about this [it] is that a sport will not take this seriously until you show CTE in their specific sport. And then the age groups won't take it seriously until you show it in a specific age group. So one of the more important cases along the way was finding CTE in Owen Thomas.

    Owen Thomas was a very well-respected kid. He was a defensive lineman at University of Pennsylvania. He had just been elected co-captain of the team after spring football, and then seemingly out of nowhere, he decided to take his own life. Never been diagnosed with a concussion, never had a problem in the world -- you know, great family, etc.

    So when CTE was found in his brain, and not just in a couple of spots, like in the 18-year-old Eric Pelly, but really throughout -- it was there, and it was, from what we understand about progressive nature, going to just keep going -- that was important, because you realize how it was affecting very beloved people, very well-respected people, and showing that frankly it existed in, again, young people, that they were getting it before they ever got to the NFL, before they ever made any money. They were paying a significant price to play this game.

    And in terms of your public relations battle, as you say, it's another bell to ring; it's another cohort to wake up.

    Right. It's a story that I want everyone in the football world to know, that one of the brightest shining stars already had this. Whether or not it contributed to the suicide, he already had this. He was going to be one of those guys maybe in 20 or 30 years that we were then wondering what happened to him, what's wrong with him. And make people think about whether that price was worth it.

    Again, the other place where there's a ton of money being made off this sport is at the college level. We complain about the NFL's work, but they are still taking care of the guys with dementia. And one thing that's not happening is that the colleges are not taking care of their former players with dementia, but are reaping enormous profits from the game. ...

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    Dr. Joseph Maroon   Team neurosurgeon, Pittsburgh Steelers

    As team neurosurgeon for the Pittsburgh Steelers, Maroon and his colleagues developed a now widely used test to determine whether a football player should return to play after a concussion. He is a consultant to the NFL’s Head, Neck and Spine Committee. This interview was conducted by FRONTLINE’s Jim Gilmore on April 17, 2013.

    Let's talk about CTE [chronic traumatic encephalopathy], because it's the most confusing element of all of this and of the arguments that are out there. CTE to some extent brought a lot more attention to the issues. When you saw the CTE debate coming up, what were your thoughts? Is there a positive/negative side of what has been said and sort of what the debate has been about so far?

    I think that they're both positive and negative. Clearly, the papers by [Dr. Bennet] Omalu, by [Dr. Ann] McKee and others now have brought a focus and a heightened awareness of the potential problem of multiple concussive or subconcussive blows.

    Initially, not only I but other independent, non-NFL affiliated individuals commented on the papers and thought that there was overreaching, overstatements, extending the observations too far. And I think clearly as it's evolved with more cases, we're learning more about it.

    But there still is no consensus on the clinical diagnosis of this prior to an autopsy. And there's also discussion on both sides of the fence on the neuropathological substrate that is indeed purported to be CTE.

    Explain. What do you mean by that?

    Neuropathology is the study, looking at the brain tissue, in this case with special dyes and special stains. In the first case reported, for instance, there are two criteria for the diagnosis of Alzheimer's disease, if you would: the beta amyloidal plaques, which are proteinaceous sticky things that cause inflammation in the brain, and the neurofibrillary tangles, which are the disintegration of the tubules, the microtubules in the axons of the brain that die and cause inflammation.

    Some brains have a lot of amyloid with CTE; some have a lot of neurofibrillary tangles. And there's no uniform pathological substrate underlying diagnosis that's uniform in all of these cases. There's no uniformity in it, which is debated by neuropathologists in the various papers recently published.

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    Harry Carson   Linebacker, New York Giants (1976-88)

    Harry Carson is a Hall of Fame linebacker who played for the New York Giants from 1976-1988. Here, he discusses why he regrets ever having played football. This is the edited transcript of an interview conducted with FRONTLINE’s Michael Kirk on Sept. 4, 2013.

    When you hear about Bennet Omalu and Ann McKee and others who found CTE [chronic traumatic encephalopathy], when you first heard about CTE and the discovery of that stuff, what did you think, Harry?

    Didn't surprise me. When I first found out about it, it just validated what I think I've always known; that if you played the game and if you've hit people and you've gotten hit, you've sustained some kind of damage that you're going to take with you for the rest of your life. So when there was a name associated with the conditions of those players who committed suicide, I was not surprised. ...

    1990 when I was diagnosed, I could have told you then that there would come a time where players would commit suicide, and they committed suicide. And while I've always been saddened with players when they've committed suicide, I know what these guys have gone through, because I went through the same thing. But when I was a player -- I was an active player, and I felt suicidal. It wasn't until life after the game -- I was an active player. I was an active player dealing with depression, so I've learned how to manage my own life in such a way that when I have good days, I know they're good days, and then there are some days when they're not-so-good days that I know how to manage my way through those days and those low periods.

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    Mike Webster's Legacy

    Steve Young   Quarterback, San Francisco 49ers (1987-99)

    Steve Young played quarterback for the San Francisco 49ers and suffered seven concussions before retiring in 1999. A Hall of Fame quarterback, Young told FRONTLINE he worries about the toll that routine head hits are taking on linemen and running backs. This is the edited transcript of an interview conducted with FRONTLINE’s Jim Gilmore on March 27, 2013.

    ... So Mike Webster dies in 2002, I think. There is Dr. [Bennet] Omalu who studies it and finds CTE [chronic traumatic encephalopathy] in the brain, and then there is this big debate going on about whether that means anything or not. The NFL has one position. Some experts come out and sort of say, "Wait a minute; there is something going on here."

    Sure.

    As that debate is going on, when do you tie into it? What is your thinking about it?

    It was later, to be honest with you.

    2007. It really doesn't hit the main media until 2007.

    And I think as players -- now I was working with ESPN. I had followed the game pretty closely. I think that's when it became much more obvious to guys that there was something possibly here, a pattern, because, you know, you play; thousands of guys play. There is going to be anomalies; there is going to be someone has an experience that is an outlier. That's true in our daily lives, too. There is people that have situations, conditions or things that happen that are just outside the bell curve, and that's a truth.

    So I think until it became clear that this might be in the bell curve, you know, that's when I think people started to say, "Holy cow, is this something that I need to really pay attention to?" And I think that's what I'm grateful for, is knowledge is power with anything. And for players today knowledge is, "OK," because to me the fair way to look at this is assumption of the risk. Do you truly understand what that is? And people make that decision all the time. There are people that do, to me, outlandish things -- ride bulls. That's insane. The assumption of the risk is way too high.

    Football for me, I don't -- it doesn't -- that's just my personal experience, but as long as I know the assumption of the risk and I understand it, I can make what can be a rational decision. If I don't understand it, there is something more that is not clear or obvious, then that needs to get aligned. And that's why the league and everyone needs to get as fast as they can alignment on that, because that's the only fair way to let people continue to do it.

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    Junior Seau's Suicide

    Sydney Seau   Daughter of Junior Seau

    Sydney Seau is the daughter of legendary linebacker Junior Seau, whose 2012 suicide shocked the sports world. Seau says football changed her dad, leaving him forgetful, distant and prone to fits of anger. This is the edited transcript of an interview conducted with League of Denial author Mark Fainaru-Wada on Feb. 15, 2013.

    When you guys got the results back and found out that he had CTE [chronic traumatic encephalopathy], what was your reaction to that?

    Honestly I hoped there would be some sort of relief or comfort knowing that it wasn't just him; there was something going on that we couldn't control, and he couldn't control. It wasn't just him taking, I won't say selfishly, but him taking his own life. There was other factors.

    But honestly, nothing changed. Yes, good could come out of studying CTE, and I think it could go so far, but in my life, personally, what is it really going to do? It's not going to bring him back. But in the back of my head I was like, "OK, this can help some part of me, knowing that it wasn't all him."

    And there are other people out there that may have it. And if this research goes well, we can protect other fathers on the field and we can protect these people. They're not just players, they're not just jerseys; they're people. So obviously, that was the second thing that came into mind.

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