The Queens Square 13: CTE?
For the last month, I thought I had found the only two documented cases of Female CTE, but thanks to a tip by the NFL Objectors I learned of 13 additional cases of possible Female CTE from the October 2015 paper, Histological evidence of chronic traumatic encephalopathy in a large series of neurodegenerative diseases. These 13 women were from a study of brains from the Queen Square Brain Bank for Neurological Studies in London and thus I have named them the Queen Square 13.
Histological evidence of chronic traumatic encephalopathy in a large series of neurodegenerative diseases
Helen Ling1 · Janice L. Holton1 · Karen Shaw1 · Karen Davey1 · Tammaryn Lashley1 · Tamas Revesz1
Received: 3 September 2015 / Revised: 8 October 2015 / Accepted: 11 October 2015 © Springer-Verlag Berlin Heidelberg 2015
I emailed with the paper's lead author, Dr. Helen Ling, to learn more about the women who were found to have CTE in this study and summarized our exchanges below.
Katherine: Dr. Ling, how many cases of Female CTE did you find in your study?
Dr. Ling: In our study, we found 13 cases of Female CTE and 19 of Male CTE (Total of 32 positive CTE cases, all with early stages of pathology) among 268 screened cases with neurodegenerative diseases and healthy controls.
Katherine: Do you know how many female to male brains were in the original 268?
Dr. Ling: I am sorry I will not be able to provide these figures for you. The 268 screened cases were the most recent consecutive cases that reached the Queen Square Brain Bank and they were not selected according to gender. Therefore, the gender distribution would have been even and I am sure of the 268 cases, at least 100 cases were female.
Katherine: Can you tell me more about the cases of Queen Square 13?
Dr. Ling: These 13 cases have mild focal histological evidence of CTE. From retrospective review of the case notes and telephone interview of the next-of-kin, it seems that they did not have any clinical symptoms related to CTE. This group of cases were obtained from those with neurodegenerative diseases such as Parkinson's disease and related conditions and some were healthy elderly individuals (included as controls). Most had history of different types of head injury.
Ann McKee's paper in 2013 showed that up to a third of autopsied confirmed cases had concomitant histological findings of other neurodegenerative disorders such as Alzheimer's disease changes. That was also our experience that a proportion of CTE cases may have other pathologies in the brain.
Katherine: Can you review the individual case histories not included in your paper and tell me more about the individual women’s risk factors?
Dr. Ling: Here is the additional data from our series:
1. There are 32 positive CTE cases (male: female = 19: 13) among 268 screened cases with neurodegenerative diseases and healthy controls
2. ‘Positive CTE’ in these cases means focal scattered histological changes compatible with early CTE pathology
3. Among the 13 female, their other pathological diagnoses are: Multiple system atrophy (1), Parkinson’s disease (1), healthy elderly (4), corticobasal degeneration (1), progressive supranuclear palsy (6)
4. Mean age of death of the 13 female with positive CTE: 84 years
5. Potential risk factors and related info of the 13 female with positive CTE: excessive alcohol (2), suicide attempt (1), risk sports (2 – gymnastic, cycling, horse riding), falls and related traumatic brain injury in old age (11), fractures resulted from falls (8), motor accident (2), domestic abuse (1). Some cases have more than 1 of these factors.
Katherine: Why do you think there have been so few cases of Female CTE reported in scientific papers and the press?
Dr. Ling: I think the small number of female with CTE is mainly due to sampling bias in that most brain donors with a history of repetitive traumatic brain injury happened to be male and there are more male athletes in high risk sports. Whether genetic factor of the female gender plays a protective role is not known.
Katherine: Could you look at new study, Chronic traumatic encephalopathy pathology in a neurodegenerative disorders brain bank, and tell me what you think about what can be concluded about gender and female CTE?
Chronic traumatic encephalopathy pathology in a neurodegenerative disorders brain bank
Kevin F. Bieniek1,2 · Owen A. Ross1 · Kerry A. Cormier3 · Ronald L. Walton1 · Alexandra Soto‐Ortolaza1 · Amelia E. Johnston4 · Pamela DeSaro4 · Kevin B. Boylan4 · Neill R. Graff‐Radford4 · Zbigniew K. Wszolek4 · Rosa Rademakers1 · Bradley F. Boeve5 · Ann C. McKee3,6 · Dennis W. Dickson1
Received: 28 September 2015 / Revised: 23 October 2015 / Accepted: 25 October 2015 / Published online: 30 October 2015 © Springer-Verlag Berlin Heidelberg 2015
Dr. Ling: In this paper, they looked at all cases with history of risk sports in men and checked if there was CTE pathology in the brains. The finding was: 32% male athletes had CTE pathology. Women were excluded from the screening so no female athletes were included. Non-female athletes were also screened for CTE as control subjects but 0% had CTE.
Katherine: I am most grateful to Dr. Ling and the time she made to answer my many questions and really expand our limited knowledge of Female CTE.
Dr Helen Ling, PhD, BMedSc, BMBS, MSc, FRCP(T), MRCP(UK)
Senior Clinical Research Associate
Dr Helen Ling completed her medical training at the University of Nottingham, UK. After her Neurology training, she joined the Reta Lila Weston Institute and Queen Square Brain Bank for Neurological Studies, Institute of Neurology, University College London, UK since 2008 and was awarded a PhD in neuroscience research in 2014. Dr Ling’s main research interests include clinical and pathological features of progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and chronic traumatic encephalopathy (CTE). Dr Ling is currently funded by the CBD Solution Grant to study the pathological staging of CBD.
Six Blind Men and the Elephant: The Challenge of Concussion
What is a concussion? Currently there is no MRI or CT scan that can create an image which shows what a concussion looks like (I saw some technology last week at RSNA that is getting close).
When I had breast cancer two years ago, I was shown a white spot on a computer screen, and that spot defined my cancer. It was 2 cm in length and width. After the cancer was removed, more details were filled in about what kind of cancer I had. No one ever asked me again if I was sure I had cancer?
With a concussion, there is no visual image or scan to show the effects of this trauma on the brain. (Yes, there are functional MRIs and high tech tools in research labs, but they are showing function and no high school kid has access to them.) Doctors rely on patients to describe their own personal experience of the concussion... "How does your concussion feel to you?"
Because concussions are such intensely personal experiences, there is no one right answer for what a concussion looks like or feels like. This challenge of description can be seen in the old fable of the six blind men and the elephant.
Six blind men were asked to determine what an elephant looked like by feeling different parts of the elephant's body. The blind man who feels a leg says the elephant is like a pillar; the one who feels the tail says the elephant is like a rope; the one who feels the trunk says the elephant is like a tree branch; the one who feels the ear says the elephant is like a hand fan; the one who feels the belly says the elephant is like a wall; and the one who feels the tusk says the elephant is like a solid pipe.
A king explains to them: All of you are right. The reason every one of you is telling it differently is because each one of you touched the different part of the elephant. So, actually the elephant has all the features you mentioned.1
In the same way, "what is an elephant" is defined by different people according to their personal experience of touching one part of his body, a concussion feels different to every person as each experiences a different combination of symptoms.
And we question people who have concussions, "Are you sure you have a concussion because it doesn't sound like a concussion to me?" We have our own experiences of what a concussion was like for a family member or a sports star and we use this to judge the concussion in front of us.
This is always interesting to me since no one ever questioned if I really had breast cancer? I wasn't asked probing details what it felt like or had to listen to a story how my case didn't sound like someone else's.
According to the excellent model by Mickey Collins from his paper, A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion, a concussion has six possible trajectories/areas or (if we can stick with the elephant model) six possible parts one can feel/experience.
Source: "A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion"
Starting at the bottom with the green circle and going clockwise in layman's terms: headache, neck, mood, balance, eyes, thinking/processing.
In the same way the elephant is experienced so differently by six blind men who only feel one part, with a concussion, some people will just feel symptoms in one area and others a different combination of two, three, four, five or six symptoms areas. And research is showing that women in general experience concussion in a different combination of symptoms than men.
If a concussion is experienced by one person as injury which causes "neck and headache" issues, and by another person as an injury which causes "eyes and thinking" issues, we ask "which is a real concussion?' or "which is the more serious concussion?'"
With so much variety, it is no wonder why parents, teachers and coaches -- even some untrained doctors -- get confused what is a concussion, and what is not. We want to know what a concussion looks like - show us a photo, please!
Then there is also confusion on how to treat concussions and what is the "right way" to help someone heal from a concussion in school and at work. Well, according to the Collins' model which I personally support, the treatment depends on which of the six areas in which the patient is experiencing the concussion. Once the medical provider can figure out which of the six areas are affected then that combination of areas will determine the proper treatment and/or recovery plan. One size fits all does not work here.
I think this chart again from Mickey Collins' paper is an excellent summary as it shows that risk factors combined with the specific details about injury combined with trajectories involved = lead to which type of treatment and/or rehab is needed. I suggest reading Mickey's paper and please don't forget the story of the six blind men and the elephant when discussing concussions.
Source: "A comprehensive, targeted approach to the clinical care of athletes following sport-related concussion"
PINKconcussions is 501(c)3 OFFICIAL!!
Just in time for FC Giving Day...
We are so excited we are now an official IRS Public Charity 501 (c) 3!
Just in time so PINKconcussions can participate in Connecticut's Fairfield County’s Giving Day on March 5 – and we need your support!
Hosted by Fairfield County’s Community Foundation, Giving Day is a 24 hour online event to Give Where You Live and celebrate the work of local nonprofits.
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Report: CONCUSSIONS: NOT JUST ABOUT MALE ATHLETES
A new report summarizing facts and research on Female Concussion was published in February by Womens' Sports Foundation. The report was excerpted and adapted from the larger study by Staurowsky, E.J., DeSousa, M.J., Miller, K.E., Sabo, D., Shakib, S., Theberge, N., Williams, N., & Veliz, P. (2015). Her Life Depends On It III: Sport, Physical Activity, and the Health and Well-Being of American Girls and Women. East Meadow, NY: Women’s Sports Foundation.
This two page report states that research on the incidence of concussions generally shows higher rates among female athletes at both the collegiate and high school levels.
"Particular attention has been given to analyses in soccer and basketball, where men and women play by similar rules and ice hockey, a sport that is largely similar in the men’s and women’s game with the important difference that intentional body checking is prohibited in the women’s game." Data for all three sports show higher rates among females at both the high school and collegiate levels (Hootman, Dick & Agel, 2007; Dick, 2009; Rosenthal et al., 2014).
The trend that worries me the most was the "emerging evidence that indicates that female soccer players playing elite or select soccer before high school sustained concussions at a rate higher than their high school and college counterparts, most continued to play despite experiencing symptoms, and less than half sought medical attention." And this mirrors the results in my own study of female athletes who reported playing through their concussions.
We need to address the female concussions in Youth Sports - in soccer, hockey, cheer, basketball... wherever girls, along with boys, are getting concussions with untrained coaches and an absence of athletic trainers.