by Irvin Muchnick
(PREVIOUSLY: “Introducing Our Coverage of Bennet Omalu’s CTE Discovery Authenticity Mess,” https://concussioninc.net/?p=10599.)
In May 2011 Boston’s Sports Legacy Institute (since renamed the Concussion Legacy Foundation) and the Boston University Center for the Study of Chronic Traumatic Encephalopathy had just released the brain autopsy findings on retired NFL star Dave Duerson, who committed suicide. And I was trying to put heat on the group’s Chris Nowinski and Dr. Robert Cantu.
The New York Times this week has a report on another controversy, which I’ll get to later, on the Duerson family’s unhappiness over his portrayal in Concussion. For now, let me emphasize that what I felt was most important about Duerson then, and still feel is most important today, is not a judgment of his late-life erratic behavior, which we now know was likely a byproduct of football-inflicted brain injury. The key to the Duerson story, rather, was its illustration of the breakdown of fiduciary duty: at the very time his behavior was getting out of control — both in his previously successful business career and at home — he was serving as an NFL Players Association appointee of the joint labor-management retirement and disability benefits review board,. And at that job he was incompetent, almost by definition. I tried, unsuccessfully, to get the Boston people to bite on the notion that the facts of Duerson’s impairment supported a call for a Labor Department audit of rejected disability claims of other players during his time on the board.
A couple of different readers, with a couple of different viewpoints, have told me that my coverage of the announcement of Dave Duerson’s chronic traumatic encephalopathy maligned Boston University’s Dr. Robert Cantu by stating that he had vaguely backdated the definition and naming of the disease in a way that disrespects the work of Dr. Bennet Omalu.
On this point, I think the critics are right and I was wrong, so let me correct the record here.
After that, I’ll proceed to explain why I believe exposure of my error only deepens the suspicions that the sports medical establishment fell down on the job and that the National Football League was none too eager to see that a better job be done.
What Cantu said in Boston a week ago Monday was that CTE was identified in boxers as “punch drunk syndrome” in the 1920s, and “since the sixties and especially the seventies it has been known as chronic traumatic encephalopathy, with multiple case reports in the world’s clinical and neuropathological literature.” (The press conference video is at http://www.bu.edu/buniverse/view/?v=1GIhOEcN.)
That is accurate. Nor is there any reason to dispute this fuller chronology by the Sports Legacy Institute at http://sportslegacy.org/index.php/science-a-medicine/chronic-traumatic-encephalopathy:
The term “Chronic Traumatic Encephalopathy” appears in the medical literature as early as 1969 and is now the preferred term. Through 2009 there were only 49 cases described in all medical literature since 1928, 39 of whom were boxers. Many thought this was a disease exclusive to boxers, although cases have been identified in a battered wife, an epileptic, two mentally challenged individuals with head-banging behavior, and an Australian circus performer who was also involved in what the medical report authors referred to as “dwarf-throwing.”
CTE remained under the radar when a Pittsburgh medical examiner named Bennet Omalu identified CTE in two former Pittsburgh Steelers who died in his jurisdiction in 2002 and 2005. He published his findings, drawing the attention of SLI co-founder Chris Nowinski, who worked with families to deliver three more cases that Dr. Omalu and others diagnosed with CTE, including SLI’s first case, former WWE wrestler Chris Benoit.
In my several lengthy conversations with Dr. Omalu, he has taken credit for the term CTE; on one occasion, Omalu even gently reminded me that he had been the sole, and not merely a major contributory, coiner of it. To the extent that I ran with Omalu’s assertion, bad on me. If I’ve somehow misinterpreted what Omalu has been telling me (but I don’t think I have), then double-bad on me. (Omalu declined comment in an email this morning.)
Now that that piece is out of the way – again, apologies to Cantu, Chris Nowinski’s SLI, and the Center for the Study of CTE for the implication that they were deflecting due credit to Omalu by fudging history – what does all this mean for the story of the national head injury crisis in sports?
The answer is that it is, if anything, even less flattering to the powers-that-be.
Bennet Omalu didn’t discover CTE or even attach the most widely recognized handle to it. He was just the first to identify CTE in football players.
CTE was wending its way through the medical literature throughout the 1970s in association not just with boxers, but with battered women and circus performers as well. Meanwhile, as concussions took a skyrocketing toll on football players over the next 30 years, no one made the connection.[…]
Let’s stipulate that any controversy over the origins of the naming of this brain disease is a sideshow in comparison with the substance of what Omalu brought to the table – unfortunately, it was literally the autopsy table – over the last decade. I would summarize it thusly:
– For many years, there was an understanding that boxers suffered various symptoms resembling Parkinson’s Disease, accompanied by dementia.
– There was also an escalating appreciation that people in all walks of life who suffered major traumatic brain injury could develop a disease that resembled Alzheimer’s.
– Beginning with Mike Webster in 2002 and continuing through to the Nowinski group’s initial and breakthrough finding, on pro wrestler Chris Benoit in 2007, Omalu put what we now call CTE on the map. Omalu determined that minor blows to the head, over time, with or without documentation – notably in football, hockey, lacrosse, and wrestling – could result in a disease distinct from Alzheimer’s. Omalu is publishing an overview on all this in the journal Neurosurgery; it is available in advance in electronic form, and I wrote about it here on March 9. See “Concussion Research Pioneer Bennet Omalu Returns to ‘Neurosurgery’ Journal,”http://wrestlingbabylon.wordpress.com/2011/03/09/concussion-research-pioneer-bennet-omalu-returns-to-%E2%80%98neurosurgery%E2%80%99-journal/.
Omalu has defined CTE as a disease entity. He also has confirmed that what we used to think of as Parkinson’s or Alzheimer’s or their offshoots are not these diseases in victims of CTE, which has distinct pathognomonic diagnostic features.
Nomenclature aside, there was no media attention given to CTE until after the publication of the Mike Webster paper in 2005.
About that nomenclature:
On May 11, 2011, Omalu emailed me:
Thank you Irv. I seriously want to keep away from any political or public debate. I sincerely do not know why the Boston group wants to delegitimize me. Together with Alan Schwarz they have even given Dr. McKee the credit for “discovering” CTE J. I seriously do not understand that. You should also research into what role racism has played in the way Boston treats me. I have learnt that the Boston area does not have an admirable race-relations history J, sadly. Ask Dr. Cantu, if any football player was diagnosed with CTE before Dr. Omalu identified, named and described it in Mike Webster. If you may recall, the NFL doctors actually wrote a letter requesting that my paper on Mike Webster be retracted since there was nothing like CTE J. Please keep me away from the public debate. Every sane individual gives me credit for my contribution to the advancement of science, and I remain deeply grateful.
Cheers and good luck.
And later the same day:
I have received so many enquiries from physicians across the world why the Boston group does not give me credit for my work and recognize that I was the first to describe and name the disease CTE. Like I have told everyone who has contacted me, I do not know. However, I remember vividly when Chris Nowinski and Dr. Cantu were begging me to speak to them to explain what this disease was about. I remember vividly when I traveled to Boston upon their request to show Mike Webster’s slides to one of their “top” neuropathologists, who did not even understand what I was showing him. It is the same Chris Nowinski who has pronounced to the world in a radio interview that I am incompetent and called my integrity to question. As a devout catholic and Christian, mundane issues like this one do not bother me, by the Almighty’s grace, my latter days shall be greater that the last. J Anyone who claims that Dr. Omalu did not coin and name post-traumatic taupathy Chronic Traumatic Encephalopathy [CTE] should neither be trusted nor respected. I will appreciate it if you can keep me out of these public debates. They are not necessary. The truth will always prevail. Thank you my friend.
And the next day:
Prior to my work, there had been an understanding that boxers suffer from a variety of symptoms, which resembled “Parkinson’s Disease”, accompanied by dementia symptoms. This was called Dementia Pugilistica for Dementia for boxers. Also there had been a general understanding that people who have been exposed to major traumatic brain injury may develop a disease that resembled Alzheimer’s Disease. There were several reports of abnormal accumulations of proteins in the brains of some boxers. It was all about boxers, period. Before my work, and before Mike Webster, there was no disease called Chronic Traumatic Encephalopathy [CTE]. I was the one who made the link that minor blows to the head, over time, with or without documentation, in sports like football, ice hockey, Lacrosse etc can result in a disease, which I called CTE, and not Alzheimer’s Disease. I was the one who first described CTE as a distinctive disease entity and gave it a name. This was why, in my last paper, which has been e-published and will soon be published in Neurosurgery, I have defined CTE as a disease entity. I have also confirmed that what we used to think as Parkinson’s Disease or Alzheimer’s Disease are not these diseases. CTE is distinct from Parkinson’s Disease and Alzheimer’s Disease. I have also been the one to confirm the pathognomonic diagnostic features of CTE. And guess what, we would be announcing another ground breaking work very soon.
If you may notice, there was no media attention on CTE until after Mike Webster’s case was published. I was also the first to link CTE to suicides, and in fact we have submitted a grant application for research work on suicides in relation to CTE. My work has prompted other researchers to advance the CTE concept and develop ways we can diagnose the disease in living patients.
Every college of medicine gives me the recognition for discovering CTE in football players. There is a gigantuan gulf between describing findings in medicine and developing a disease concept, which includes underlying pathology, patho-genesis and patho-etiology, which is what I have done. In a broader perspective, my experience with Boston, in my opinion, is part of the broader contemporary racism quagmire. Delegitimization has become a modern racism tool. I have always wondered why many blacks like me are not fully recognized for significant contributions they make to the advancement of our society. This is simply my personal opinion, and this is why I do not want to become part of the public debate. I know what this is all about, and sadly, there is almost nothing I can do about it except to keep on doing what I do and excel in whatever I do, always turning to the almighty for His Grace and Love. We will all die someday soon, and realize that all is vanity. For after death comes judgment.
On May 13, 2011, Omalu emailed:
Thank you Irv, but it was not the Nowinski group that identified Benoit, I did. Thank you so much.
I responded: “Thanks, Bennet, but here I think you’re being ungenerous. A fair reading of that sentence [from my article] is that I am giving you credit for the Benoit finding during the period before your split with Nowinski, who had just started SLI and procured the brain for your study.”
Omalu then closed the exchange:
Thank you Irv. You are a good reasonable guy and I like you J.
Three months later, we discussed this and other topics over lunch in Stockton.