New CTE Study Categorizes Stages of Degenerative Brain Disease in Veterans, Athletes

By Brenda L. Mooney

BOSTON – For the first time, researchers have categorized chronic traumatic encephalopathy (CTE), the degenerative brain disease associated with repeated brain trauma in military combat and contact sports, into four stages of severity.

In a recent study from the Veterans Affairs Boston Healthcare System, Boston University Center for the Study of Traumatic Encephalopathy (CSTE) and the Sports Legacy Institute (SLI), 68 cases of CTE were identified among deceased athletes and military veterans whose brain and spinal cords were donated to the VA CSTE Brain Bank. The study, which was published in this month’s issue of the journal Brain, represents the largest case series of CTE published to date.

Co-Directors of the BU CSTE include, in order, former wrestler Chris Nowinski; Robert Stern, PhD, professor of neurology and neurosurgery at BUSM; Ann McKee, MD, professor of neurology and pathology at BUSM and director of VA CSTE Brain Bank at VA; and Robert Cantu, MD, clinical professor of neurosurgery at BUSM.

Of the 68 cases of CTE found in males between 17 and 98 years old, 64 were athletes, and 18 of those were also military veterans. Of the athletes, 34 were professional football players, nine only played college football and six had only played high school football. The group included three additional veterans who did not have a sports background.

Evaluation of one of the study subjects — for whom self-injurious head-banging behavior was the sole environmental exposure — underscored the view that repetitive brain trauma alone is sufficient to trigger CTE in some cases.

“This study extends our knowledge concerning the spectrum of the clinical and pathological abnormalities associated with CTE, although further studies are needed to investigate critical aspects of trauma-induced neurodegeneration, including the incidence and prevalence of CTE; whether the symptoms of CTE are distinctive from other conditions; how genetics influence susceptibility or resistance to CTE; and whether other environmental exposures also play an additive role in the development of CTE,” said lead author Ann McKee, MD, director of the Neuropathology Service for VA New England Healthcare System, professor at Boston University School of Medicine (BUSM) and co-director of the CSTE.

McKee also is director of the CSTE and the Brain Banks for Boston University’s Alzheimer’s Disease Center, which are based at the Bedford, MA, VA Medical Center.

CTE, which appears to be slowly progressive in most individuals, is characterized in early stages by the presence of abnormal deposits of a protein called tau in the form of neurofibrillary tangles, glial tangles and neuropil threads throughout the brain. These tau lesions eventually lead to brain-cell death. Currently, CTE can only be diagnosed postmortem.

Among the veterans found to have CTE were marines, soldiers and sailors from World War II, the Vietnam and Gulf wars, as well as the wars in Iraq and Afghanistan. Researchers also found evidence of the condition in 50 football players, including 33 who played in the National Football League (NFL), one in the Canadian Football League (CFL), one semi-professional player, nine college players and six high school football players. CTE also was identified in four National Hockey League (NHL) players, one amateur hockey player, seven professional boxers, one amateur boxer, and one professional wrestler.

“While it remains unknown what level of exposure to brain trauma is required to trigger CTE, there is no available evidence that occasional, isolated or well-managed concussions give rise to CTE,” explained co-author Robert Cantu, MD, co-director of CSTE and co-founder of SLI.

The new study provides specific pathological criteria for the diagnosis of CTE and divides CTE into four stages of disease (Stages I-IV). Based on interviews with families of the deceased donors, researchers were able to develop a list of symptoms common to stages of the disease:

• In Stage I, headaches and issues related to attention and concentration were common;

• In Stage II, the symptoms expanded to include depression, explosivity and short-term memory impairment;

• In Stage III, reported symptoms included cognitive impairment and problems with executive functions, specifically planning, organization, multitasking and judgment.

• In Stage IV, there was evidence of full-blown dementia (i.e., memory and cognitive impairments severe enough to impact daily living).

While CTE appeared to be slowly progressive in most of the study subjects, it may not progress or progress at the same rate in all patients, study authors noted. Overall, however, 89% of those diagnosed with CTE through pathological studies had demonstrated clinical symptoms involving cognitive, behavioral or mood impairments before death, according to the report.

In addition, one-third of the CTE cases were diagnosed with additional neurodegenerative disease, including:

• Motor neuron disease (12%);

• Lewy body disease (16%;

• Alzheimer’s disease (11%); and

• Frontotemporal lobar degeneration (6%).

Years before the onset of cognitive and behavioral symptoms, most of the individuals with CTE and motor neuron disease (CTE-MND) had suffered symptoms of motor weakness, atrophy and fasciculations, or muscle twitches, the study notes.

The next goal of researchers is developing methods to diagnose CTE during life, according to co-author Robert Stern, PhD, Boston University professor of neurology and neurosurgery.

“The ability to diagnose CTE while someone is alive is an important next step to allow us to address some of these important issues, as well as develop and test treatment and prevention strategies for the disease,” he said.

In addition to raising troubling questions about the safety of contact sports, the research underscores that CTE could have devastating implications for military veterans and the VA’s ability to care for them.

A study released this summer also found CTE indications in brain tissue from blast-exposed military personnel. That study noted that as much as 20% of the 2.3 million troops deployed to Iraq and Afghanistan since 2001 could have suffered a traumatic brain injury (TBI) as a result of exposure to IEDs. In a worst-case scenario, 460,000 veterans could be at risk for CTE.

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  1. jennifer says:

    Is there currently any organizations raising awareness and funds for research to diagnosis while someone is alive? Partically veterans with TBI injuries. Currently too many veterans arhaving issues with Dr. Differentiating what is PTST relates and TBI related but display large characteristic of CTE without assistance or understanding.

    • Zach S says:

      Great question, my dad in the last 6 months has gone downhill quickly. he is exhibiting signs of CTE and so far the VA hasn’t even labeled him bipolar. Best way to proceed?

  2. Nathan says:

    Being seen for TBI and repeated blast exposure (currently on active duty) I am acutely aware CTE may already be playing a role in my life. But until further research is done and Army decides that CTE can be confirmed in soldiers not much will be done in the way of treatment. Military and va have to find way to determine it while one is alive before they will recognize soldiers who actually have CTE and many of its symptoms. Will continue to be labeled as TBI, PTSD or array of other things for now, many symptoms shown are one in the same. Out reach to neurologists and medical professionals is the only hope in recognizing it while alive and forming groups of support.

  3. Bob says:

    I am a retired Navy vet and I played football in high school. I have had 8 concussions with lose of conscience. I have had two concussions with permanent memory loss. I don’t recall the three days prior to one of my concussions. I have had seizures after one concussion when I was in high school. I have since had what I would say were smaller more subtle and I could hide the fact they were happening to me. Now i’m in my fifties and the symptoms are much more acute and they change all of the time. All of my sensor functions don’t always work. Hearing, seeing, smelling, tasting are all things that I have just recently learned to question all of the time. Anger came come on so fast and for no reason at all. For the first time ever about three days ago I felt something that I only can describe as a flush of anger, I mean i could actually feel myself turn from standing and meditating in my yard to this rush of anger. I stood there and thought to myself why am I so angry and I got even more angry just questioning myself. I also have what I would call active dementia. I can go to a store and be in isle looking at a product and forget I’m in the grocery store. I’m an engineer and I’ve realized that there is noway i can concentrate to work. It took me 10 or more years of frustration, not being able to concentrate or try to plan or organize to realize I couldn’t continue working. I have motion sickness nearly everyday now. It used to be once or twice a week but now it’s everyday or multiple time during the day. I’m not sure how this progresses but in the last two months I have been living in hell in my brain

    • Matt says:

      Bob, i am 44, ten years out since my lasf TBI of 4. I identify and experience much of the same my brother, you are not alone. with me the anger would also stay with me for 3 – 4 days. A very small dose, 15 mg’s of Cymbalta helped tremendously with the anger. i am know with a new doctor who seems to be guessing and he recently took me off the Cymbalta and the anger and rage came roaring back within days, it is a horrible existence. I am currently applying for VA benefits. Boston VA Healthcare is currently conducting trials of using a spectrum of some colored light directed at the skull. it was succesful in mice and healed brain injury and ceased progression of CTE in mice. My only hope is to get approval and beg whoever i have too to get into the human trials. I have friends who have found trenendous comfort from God via prayer. I have been trying to find him but he eludes me to date. I really wanted to let you know your not alone my brother.

      • Stephen says:


        i am sad to read about what you’re currently experiencing… but am very, very relieved to read that an anti-depressant has helped you with your TBI-induced anger/rage. I too am suffering from multiple TBI’s (8+ concussions in a 12 year period. all alcohol-violence/accident related. i am now sober, thank god)…but my life is a living nightmare – to the point where i might just pick up the bottle again (if it’s CTE, what difference does it make anymore?). I become enraged for no reason. Depressed/suicidal for no reason. Emotional (crying) for no reason. Panic-y for no reason. sometimes all at once (worst). I hope that an anti-depressant will help me with this, otherwise I don’t know how much longer I can go on…
        they need to at least find a biomarker for this monster in the living, and soon. in a perfect, compassionate world the NFL/NHL/Boxing Federation would be throwing millions upon millions at these researchers.
        anyway, I am contacting my psychiatrist so i can get on cymbalta. i’m desperate to do something…
        thanks. take care (all of you).

    • Kevin says:

      Bob – I am 59 and have a very similar concussion history from high school and college. All I can say is that I know what you are going through because I live it also. I am just hoping that science catches up to help before it is too late. The best thing that has helped me is to learn to manage and avoid triggers for that ‘flush of anger.’ I will be praying for all of us. Take care.

  4. Brett says:

    I have had 4 and 2 were sports related 2 other from car accidents. But was diagnosed with 2 at the hospital and 2 other by an RN. Age 10, 18, 25, and 30. I am now 40 and have been experiencing what some describe as stage 2 CTE. I could be wrong, but I’ve noticed localized headaches that come and go but also memory loss, social instability & erratic behavior. I’ve also notice while very rare, trouble with the right side of my mouth making words. Wonder if those concussions are triggering this?

    • Chris says:

      I am a graduate student at Columbia University, researching CTE in the military and veteran communities. Would you mind if I speak with you further about your symptoms? I can be reached at [email protected].

      • Beau says:

        I’ve had around a dozen concusions in my life, played semi pro football until 2007 (7 years after a year of college ball and all through school) and that is around when symptoms started and I began to look for answers. I joined SLI (now concusion legacy foundation) around 08 and have been going through the yearly interviews tied to my brain donation. To date I’ve noted every symptom associated with CTE. Memory loss and depression were the first but now I have regular confusion, ringing in my ears, occasional blurred vision, night sweats, muscle spasms, mood swings in every direction both provoked and unprovoked. I have been experiencing vertigo, nausea , paranoia, massive anxiety, occasional loss of spacial awareness, random exhaustion, light sensitivity, noise sensitivity…….and I’m sure there are a few more I’m not remembering. Would be willing to answer questions if your still looking.

        • Susan says:

          Beau, mu symptoms are nearly identical to yours. I am 59 year old army veteran but suffered a TBI when I crashed my motorcycle 4 years ago not wearing a helmet. Non responsive for 4 days and not expected to survive. In the 4 years my symptoms have only increased and I wish I had not survived. I am not living, I am enduring and my husband suffers unfairly. I am not the person he married. I took part in a VA study using ketamine infusions to treat PTSD. I volunteered because I hoped to find relief from depression that I had read ketamine being a marvel cure. Sadly it seems to have made things worse rather than better and cymbalta did not provide relief for me either. Chronic pain from the broken back and severe anxiety that my insurance is beginning to make impossible to get meds for. I have been taking 100mg oxycontin 2X daily with 20mg oxycodone for breakthrough pain. Clonazapam for anxiety that I hoped to get a dose increase but just learned Blue Cross will no longer approve the combination. Why is the suicide rate so surprising? And why is it better to put a hopelessly despairing person in a psych hospital where they will be kept alive against their will and not provided the medication that has helped make existence tolerable? Not sure what to do if Blue Cross really is going to make my monthly cost for pain med $700. It does not seem the medical profession or the health insurance providers are at all concerned with an individual patients actual existence. What is a person to do?

  5. Carrie says:

    I am a 50 year old female, non-military, have had a fractured skull and 7 concussions throughout my life and was finally diagnosed with the aftermath of a life full of brain injuries. I lost count of the number of times I was told by doctors and medical professionals “Just don’t get another head injury!” and not taken seriously. I understand it is difficult for people who have not experienced what we are all experiencing to understand, but frustrating when much of the medical profession is unaware of the recent progress in diagnosing and treating brain injuries, and give you antiquated care or direction.
    I am very sorry to hear of all the problems all of you are having, I can relate completely!
    Does anyone know of any studies for non-military and non- football/boxing/hockey people?

  6. Erik says:

    I hope the inclusion of VA personnel into these efforts is more than a token gesture or simple curiosity on their part. This work needs to be taken very seriously and it’s finding need to be disseminated into the regional hospitals and used and not buried in the bureaucracy where it never reaches the patient, This has been my experience thus far with this issue and I hope it gets better over time. Much time and data has been lost as veterans have been cast off when their symptoms did not fit into the neat little boxes the VA had ordered for them or proper lesions did not show clearly enough on CT scans, Said solders were often tossed out of TBI clinics and sent to mental health treatment due to the elusiveness of the physical evidences that were avalaible to demonstrate CTE. Once there these soldiers were not to be taken seriously for their symptoms and often ridiculed for them. As I stated.. much data is lost forever on the early stages of this as these were people who had sustained often catastrophic injury from massive blast pressures and were in a position to give good account of what they were percieving as that progression was occuring on a rapid scale and they were ignored completely as they were trying to tell people about it. This data could prove very useful in it’s early stages just as data in the late stages can be. Patient care does matter and the people that live with this stuff need to know early on what they are dealing with and how to handle it. Identifying these people is not rocket science and taking them seriously is a simple matter of respect and neither of these things is happening in the VA system to date.

  7. Fox says:

    I am a survivor of a brutal life of DV. Which thank god is over. I made it to stage IV with PTSD in the dark. I have had it for ar least 7 years. Every doctor and hospital missed it. They thought it was every mental illness going. Gave me meds that made it worse. Then they all, including my family, accused me of being on drugs because of my behavior, it was heartbreaking as I do not use drugs. I was treated like an idiot and constantly put down at work for being a bimbo. I did have a very high IQ and my neurologist attributs that to my ability to have survived without even knowing. I only found out I had it this year when I noticed a big change in my athletic ability. My left side did not move with my right, it was getting confused, slower. I lost my children, my family, my home and mind. I am 35, beautiful and wasrobbed of a good long healthy life. I fight it everyday just to see my children again. They have been told what is wrong but because of the lack of understanding of CTE in medicine let alone court system, I must wait till February to see them. I knew there was something really badly wrong but no one listened. We need, deserve more attention, funding and treatment not in mental institutions…CTE wards with respect. Regardless of who we are or how much money is in our wallets. We are survivours that live not even knowing what is going to really happen or even when. I have started having seizures and pray to see my children before time runs out for me. My tau is spreading through my whole brain. The worst part is, it is most dense in the front right temporal lobe. It is cruel and slow. My prayers for all of us. I attribute my survival to the love I have for my children. Be strong and don’t give in. I believe there is a cure xx

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  9. Kelly Doyle says:

    I too would like to see some studies of non athletes and veterans.
    I’ve had two concussions and after the last one six years ago I was sent back to work WITH a TBI working with packs of dogs on a daily basis. The daily body jolts from just dogs pulling on leashes and body slamming me/jumping, etc. has caused my concussion symptoms to worsen over the years to the point of losing my business, unable to work, and now having difficulty just taking care of daily needs. It feels as if my brain is deteriorating and going downhill fast. Unable to remember how to make breakfast most days now. Every day is a haze of confusion and often with the inability to hold my body up. Doctors need to get educated about this and NOT send patients with traumatic brain injures back to work! Finally got an appointment for another doctor but my faith in doctors regarding this issue is very minimal due to previous experiences with uneducated doctors, I am suspecting CTE as I have all of the symptoms except for the rage they speak of. I hope I’m wrong!

  10. Deb says:

    Were seizures a part of any of the symptoms experienced? My son 23, played 2 years junior high, 4 years high school, 1 year college and had a lot of hard hits but no diagnosed concussions and in 2015 after no longer playing started having tonic clonic seizures upon awakening if he consumes alcohol the night before. He is also having issues with impulse control and risk taking behaviors.

  11. Susan says:

    I have read many articles that one way to help those with any level of CTE or Dementia is through your diet and exercise. Eating certain foods and taking certain supplement can help reverse the symptoms. Vitamin A, C, E, Niacin, B3, B6, B9 and B12, D3, Magnesium Calcium, Flaxseeds, Omega Fish Oil, Eat Whole Grains, Nuts, Eggs, Fish, Berries, Apples, Grapes, Concord Grape Juice, Onions, Tomatoes, Dark Chocolate, Beans, and Coconut oil is another excellent brain food. In one exciting study, adults with mild cognitive impairment showed significant improvement in memory recall within 90 minutes of taking a single dose of MCT oil. There are foods as well.

  12. Ms Marie says:

    Sadly, I feel a lot of the veterans with TBI – and presumably a CTE don’t realize that they’re off. I watched my Air Force JTAC struggle with years of explosive behaviors & ive yet to be able to find help – as living WITH SOMEONE WITH THIS is nearly as debilitating as watching someone with it. Spending hours being screamed at and seeing literally no reasonability, no remorse very little if any conscious and no personal responsibility as to how abusive all of that is. I spend my days living in fear a lot of the time. Even worse I’ve now lost myself and in this person. It’s sad to watch this human literally ripping apart our life by his inability to see the abuse. So what does a person in my place do? I’ve honestly never felt so alone in something. It’s absolutely embarrassing to think of what I’ve “allowed” him to do as far as abuse goes, and with the lack of any sort of responsibility on his part I’m left feeling absolutely insane. Thinking I probably did “deserve” to be screamed at – I’m just at a loss. At some point I’m fairly certain he’ll kill himself as it’s talked about very flippantly & I guess at that point I’ll donate his brain & spend the rest of my life crying about that, not much difference as most of my days are spent recovering from the abuse or waiting for the next explosion. Awesome huh. Real life. We’re not even in our 40’s.

    • Susan says:

      Ms Marie, I have just realized I was doing the same thing to my husband that your husband is doing to you. I knew I was wrong but I was just reacting to what I believed to be a valid anger. I dont know why he stayed but I am so grateful to him because I simply am unable to care for myself. What I have been able to teach myself to do is wait 24 hours to speak or react with anger and I honestly discovered that I cannot even remember what it was that I was so angry about just a few hours ago. Mu husband said he loved me to day, I think the first time in 3 years I have heard that. I have no ide if your husband even knows what he is doing or like myself believes his thoughts are completely valid when they are not. If he can try the 24 hour wait he may see. I understand I have no real idea what he is suffering but I feel certain if he knew what he is making you feel he would want to stop. I dont know how you get through to him but dont let him hurt you physically, because his talk of suicide is probably real and if he hurts you facing what he’s done will push him over. Im not sure stopping someone who is so very unhappy, despairing, knowing he has lost himself, he’s a stranger to himself too, I am certain of that. Im so sorry, its just what has worked for me but my symptoms may not have progressed as far. Best to you……….

  13. Sherri says:

    I recently started dating someone presumably diagnosed with CTE. I say presumably because supposedly they “can’t” diagnose the living. It seems they have already figured out the symptoms and looking at history of the patient can determine the possibility of CTE. SO Why not treat the living based on the assumption of the fact that these people are 98% likely to have CTE!?!? He has many of these symptoms; headaches, balance, depression, overwhelming thoughts, anxiety…just to name a few. Everyday I wonder what I can do to help him deal with this monster, or help eliminate the symptoms. It seems to me, if scientists and doctors are aware of it and know the symptoms, then why the hell hasn’t anyone come up with a medication or procedure to heal the damage that the TAU lesions has caused!?!? What is taking so many years for someone to come up with some form of medication, therapy, or procedure to reverse the effects of the damage?! I read all of this research and studies about CTE, yet no one wants to research and study WHAT can help these people while they are living! That’s what you scientists and doctors need to be doing! There’s a ton of research about how cigarettes cause disease and will kill you, among other things in this world. If that much can be invested into something that a smoker isn’t going to care much about, then why can’t that much effort go into helping the thousands of people suffering from CTE to help them! It’s not like they chose this disease, like a smoker chooses to smoke! (btw I’m not downing smokers bc I use to be one, but making a valid point). I pray someone can help these people soon:(

  14. Dakota says:

    I played two years of youth football a starting at ten years of age. I also played two years of high school football. I feel like I started experiencing the social instability and impulse control problems in high school. I’m extremely apathetic and mildly depressed/suicidal and I’m wondering if this is all attributed to football, or if it’s just my personality. As a kid I wa extremely outgoing and caring, now I’m socially withdrawn and have a hard time processing emotions. Feel free to ask me questions. Any answers would be appreciated. Thanks.

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