It’s been one shock after another.
After raising a few questions about CTE last summer and incurring quite a bit of wrath upon doing so, I started looking into it in more detail. What I’ve found has both surprised and alarmed me. In this post, I share issues I’ve come across as well as suggestions for fixing each situation. Hopefully changes can be made to address these issues. Read on!
1) There doesn’t seem to be much to Stage I.
Just like everyone else, I’ve seen all the news articles and stories about people that had CTE. Because of all I had read and seen, my impression was that it was awful, for any stage. I also assumed that it would be widespread throughout one’s brain at any stage. As it happens, that’s not the case. I was surprised to find that there really isn’t much to Stage I. These are the characteristics:
- It’s found in only one or two locations in the brain. If CTE is found in three locations, it bumps up to Stage II. [1]
- It’s classified as “Very Mild” in the McKee staging criteria, which is used by pathologists to diagnose CTE. [1]
- In images I’ve seen of Stage I, there are often visual aids to help readers locate it. Otherwise, it would be more difficult to find in the images. [1] [2]
- In some graphics I’ve seen in news articles, Stage I is not included. Stage II is instead included as an example of “Mild” CTE.
The images of Stage I left me with a question for scientists: how does such a small amount of tau cause all the problems to which CTE Stage I is attributed in news articles? I’m not questioning the existence of CTE or Stage I; I’m questioning how it works, exactly, to cause issues in what appear to be very minimal amounts. Look at the images yourself. What do you think? Keep reading; there’s more.
Articles don’t always mention what stage was diagnosed. However, marketing efforts by brain banks and others always mention stages.
Solution 1: In news articles about a person that has been found to have had CTE, always include the stage diagnosis. Blanket statements saying that a person was found to have CTE with no further detail do not provide enough information. I went back and ran a quick review of news articles from over the past several years, and found that many just stated that a person was posthumously diagnosed with CTE without stating what the stage was. However, brain banks and others are always identifying stages in marketing materials and other information. Brain banks should stop marketing early stages until more information about those stages are provided to the public.
Solution 2: In graphics that include images of different stages, use the actual stage for labels instead of a term. For instance, use “Stage II” instead of “Mild.” That is a much clearer label that leaves no question about the stage. Most readers probably don’t realize that Stage I is termed “Very Mild” and not “Mild.”
Solution 3: On a related note regarding labeling, I suggest that people stop labeling brain images as “Normal” because that does not provide enough information. Also, it’s difficult to state what a “normal” brain is. [3] At a minimum, it would be better to always identify age and sex of the individual from whom the sample was obtained. [4] In samples labeled “Normal” the reader has no idea if the sample is from a “normal” 10-year old, 20 year-old, 50 year-old, 65-year old, or any age, for that matter. I posit that we have moved beyond the question of whether or not CTE is real. The time has come to provide more detailed information. Labeling brain samples more accurately is one place to start.
Update 11/14/19: At the NIH CTE Workshop held November 6-7, 2019, attendees raised the same question I have here. Scientists don’t know much about the early stages yet. I highly recommend that you watch video recordings of the workshop. Links are in the update section for item 2.
Update 5/14/20: As noted in the CTE Workshop held this past November, CTE research is getting moved over to Alzheimer’s. This is also evident in the recent NIH award of $10 million to BU over five years to look at CTE combined with Alzheimer’s and other issues, not as a standalone issue.
2) At the NIH Consensus Meeting to determine criteria that pathologists use to diagnose CTE, samples of Mild Stages I and II were omitted.
Back in 2015, the National Institutes of Health (NIH) held a consensus meeting to determine criteria to diagnose CTE and to determine if CTE was a unique taupauthy. [5] Sixteen pathologists participated from a variety of institutions. Participants selected a variety of samples of varied neurodegenerative issues for the study. It included brain samples for Alzheimer’s, other brain diseases, and CTE. For the CTE samples:
- There were only ten CTE samples included in the study.
- Early stages were omitted. There were only samples of Stages III and IV, and none of Stages I and II
- Only one person selected the brain samples for CTE.
- All CTE samples originated from the Boston University (BU) Brain Bank.
- The inclusion of only late-stage CTE samples is noted as a limitation of the study. [6]
That last item about the late-stage samples is an important note. The actual study writeup is the only place I’ve seen mention of this fact, or that it’s considered to be a limitation. I’ve also not yet found an explanation as to why only late stages were included in the study.
This has created more problems than perhaps most people realize. There are ongoing battles in social media about the CTE diagnosis of Todd Ewen, an NHL player. His brain was checked by one brain bank in Toronto, which found no instance of CTE. Later on, the brain bank at BU found that he had Stage II of CTE. [7] Accusations are flying with regard to the different diagnoses. I don’t know anything about that and have no intention of looking into it further. Something that comes to mind for me is this: maybe if samples of early stages of CTE had been brought to the classification meeting, there would be more information available for all pathologists at all brain banks to use. Was that a problem in this instance? Also, if it’s Stage I and is in only one or two locations in a brain and is small in size, could it be easily missed? How prevalent is Stage II in a brain? Would it be easy to miss? How often are scientists reviewing milder stages in comparison to late stages of CTE?
Solution 1: In any future meetings where pathologists gather to determine criteria for everyone to use for diagnosing CTE, be sure to:
- ALWAYS bring multiple samples of each stage of CTE.
- Ensure there are more than ten samples.
- Have a team determine which samples to include, not just one person.
- Ensure that samples are brought from multiple brain banks, not just one.
Solution 2: If this hasn’t happened yet, all brain banks and CTE specialists should document procedures for identifying all stages and share said documentation publicly for all pathologists and brain banks to use. Many millions of public funding have been spent on CTE research. Doesn’t the public have some ownership of that information? It’s been four years since the consensus meeting, so some documentation might exist. If so, make it more freely available so situations such as the ongoing contentious debate about a prominent diagnosis can be avoided in the future.
Solution 3: The NIH Consensus Meeting was held in 2015 (four years ago) and the report states that “Future consensus meetings will address validation of the criteria among a wider group of neuropathologists using cases submitted from multiple sources.” [6] I’ve not yet found any indication or writeup of such a followup meeting. It’s time for a new consensus meeting – and this time, use the criteria I listed in Solution 1 here and as noted in the meeting report. Or, since the mild stages were omitted, focus on just those two so we get some good information about those early stages. At this point, I think it’s important to move forward. Let’s see where things stand now and ensure that more samples are included. I think that this should happen within the next few months. Public discourse is reaching a boiling point. Something needs to be done, and soon.
Update 11/8/19: Re Solution 3 – the NIH hosted a “CTE Workshop” on November 6th and 7th at the NIH in Bethesda. This was not announced to the public in time for me to prepare or adjust my schedule to be able to attend or watch live proceedings. I’ll review the videos once they’re published. Here’s a link to the event information and (hopefully) video recaps: Neuropathological Diagnosis of Chronic Traumatic Encephalopathy (CTE): Next Steps
Update 11/14/19: Re Solution 3 – Here’s a link to the two videos of the CTE Workshop held on November 6th and 7th. I highly recommend that you take the time to review them. I’ve watched the proceedings of a good portion of the first video, and I think attendees raised many of these same issues I’ve noted in this post. There are also more discussions about the earlier consensus meetings and it’s clear more is needed. Take the time to review the videos. If you don’t have time to do so in one sitting, spread it out over a course of days. I still have more to review myself, so may have additional information after doing so. However, I recommend that you find the time to review the workshop videos if you have any questions about CTE.
Day 1: The Neuropathological Diagnosis of Chronic Traumatic Encephalopathy (CTE): Next Steps
Day 2: The Neuropathological Diagnosis of Chronic Traumatic Encephalopathy (CTE): Next Steps
3) In writeups about the NIH Consensus meeting, the fact that early stages were omitted is never mentioned.
It’s troubling. If you read the writeup about the meeting on the NIH website [5], there’s no indication that the job was only half-done and that there were only ten CTE samples. This is an egregious breach of public trust. It’s not merely misleading. I think that the public assumes that for such an important meeting, samples of each stage were included. Omitting that fact from the writeup looks like the NIH is hiding something. Honestly, I feel as though I and everyone else have been fooled. Now, every time I see the meeting mentioned, I’m irritated because I know it was incomplete. Yet the public deception continues unabated. (Note 11/14/19: this is finally being shared accurately with the public. See my update notes for this item. I did check the NIH site recently, but it still needed an update, and don’t know the state today.)
As of the time I’m publishing this post, there is no mention of the omission of early stage CTE samples in the study on the NIH page about it. The date for the latest update is listed as 1/10/2019, as it was when I submitted a request for an update via the link on the page. That was during the government shutdown, so perhaps there’s a backlog of updates at this point. The page should be updated so the public isn’t misled any longer. (Note 11/14/19: the page was updated in August, but I didn’t see a change for this information. I think it still needs an update.)
Solution: Update the NIH consensus meeting page to note that it included only samples of Stages III and IV, and that there were only ten CTE-specific samples.
Update 11/8/19: In recent months, I’ve noticed several presentations and written materials that clearly describe that only late-stage samples were reviewed at the first consensus meeting, and that there were only ten samples. However, I don’t think that the NIH has yet updated their site to reflect this important distinction. I think it needs to be updated. I did not see such references before I first published this post. I think that pointing it out here made a difference.
Update 11/14/19: In watching the videos of the CTE Workshop held on November 6th – 7th, I saw multiple mentions of the fact that only late stage samples were included in the first consensus conference, and only ten CTE samples. I’m glad to finally see this truth being shared with the public, and by so many. I feel I’ve been vindicated for all the accusations and attempts to discredit me for pointing out this need for clarification. I’m grateful to those at the workshop for being truthful with the public, and to those who have been sharing accurate information in recent months since I first published this post and brought this up.
4) Pathologists diagnose CTE only by looking at tau amounts in brain samples, not any other criteria.
Most articles I’ve read about a person who was posthumously diagnosed with CTE usually include information about their cognitive capacity, state of mind, behaviors, and that sort of background. These are examples of “clinical symptoms” of which you hear. The truth is that pathologists in the studies I reviewed exclude all clinical, history, and symptom information when diagnosing CTE. Medical history, concussion history, years a sport was played (or not) – all that type of information was completely ignored when making a diagnosis. I was completely shocked to see that in the studies I read.
Why then, do news articles include such information about clinical symptoms? Why infer that they’re part of the diagnosis?
Additionally, some studies I’ve read mention that work needs to be completed to identify any clinical symptoms of CTE at various stages. This is an incredibly important fact that is overlooked. The public has marched ahead and assumed that they’re experiencing CTE because of clinical symptoms they’re attributing to the disease. Some medical practitioners are also interpreting this to be the case and are prematurely diagnosing CTE in the living. I think that the disconnect between what is shared in news articles and what is actually occurring when pathologists diagnose CTE is a contributing factor for why many in the public think they have CTE or are diagnosed with CTE, even though clinical symptoms for each stage have not yet been defined.
This is where I draw upon my background as a technical communicator. When writing software documentation (e.g., online help topics) a tech communicator tests each dialog box and fields within it. You can’t make it up. You can’t check the help file to see what to enter because you’re writing the help file. You have to figure it out yourself. So there’s much testing involved. For instance, selecting different radio button options, typing different information into fields to see what happens, clicking Ok, and seeing what works and what doesn’t. Then you write procedures. To be able to write a step in a procedure, I have to be able to complete it. In other words, it has to happen in front of me before I can document it. I can’t make it up. Otherwise, I might as well write about pigs flying to the moon.
Now, applying those basic principles to this CTE situation, I’m left with no choice but to ignore the clinical symptoms at this point. That’s because the pathologists are ignoring symptoms when diagnosing CTE. I equate (a) what the pathologists are actually doing to (b) a software app in development that’s in front of me that I’m testing field by field, dialog box by dialog box. Assigning symptoms to CTE stages is clearly not yet scientifically ready. When it is and symptoms are included in a diagnosis by pathologists or whoever is making that decision, I’ll gladly reconsider. Until then, it’s out of my hands. I simply cannot and will not include CTE symptom information in my docs and my sites.
I’m hoping that this situation changes soon. My stance in this matter is no different from me telling software developers that an app is not yet ready for release. Instead, I’m encouraging researchers to bump it up a notch and immediately produce some solid information about clinical symptoms and CTE stages out to people to dispel the confusion that currently persists. Give me something that I can work with.
I’m looking for solid reference material, not videos from an organization or something prepared for the media, and not journal articles that take two years to be published and then might be incomplete or have data grouped in a way that makes it more difficult to analyze. I want actual data that I can review, posted on a site like the CDC or NIH. Where exactly do things stand at this moment? What’s frozen? What’s in development? Get information out from behind the walled garden that is academia and the journals. Give the public access to the data for which we’ve likely already paid. I know that Care Consortium data is being shared, but when I checked previously, the public was not able to access it. That should change so everyone can review the data.
So what’s next? How can this be remedied? What is the current state of knowledge? Some thoughts come to mind.
Solution 1: Continue research to determine what symptoms apply to which stages of CTE.
Good news: this is already underway. This was noted in studies, so researchers are working on it. There are, in fact, two major initiatives underway. One is the Diagnose CTE project, which is to encompass seven years and involves multiple research institutions. The website states the study purpose to be to diagnose CTE during one’s lifetime and to “examine potential potential risk factors for this degenerative brain disease.” Videos on the site encourage brain donations to “help investigators to develop methods of diagnosing CTE during life.” Another study is the LEGENDS study out of BU. The website states that “eligibility to participate in the LEGEND study depends on several factors, including history of playing contact sports, enrollment in the military, and history of severe traumatic brain injury.” [8] I’ve not yet begun to research these two initiatives and won’t have time to for a while, so if you’d like additional information about them, you’ll need to look into them yourself. Also, if anyone knows of other similar projects underway, please let me know and I’ll update this section.
Bad news: these efforts focus only on college and pro football players. Those that played football only during their youth or through high school are excluded. That means that important information for which parents are clamoring might not be in the research pipeline in this instance. Given the current furor over youth sports and particularly youth football, I think this needs some attention. Also: these studies still just focus on sports – and apparently only one sport at that. Non-sports concussees are once again ignored. The Diagnose CTE project is asking for male participants ages 45-74, including those that didn’t play contact sports. That tells me that: oh, they want non-sports folks for controls in the study, not to study on their own. I haven’t seen any CTE research specific to non-sports concussions as of yet. I’ll keep an eye out. This begs the question: if these major initiatives aren’t reviewing non-sports concussees for CTE, is it something about which this demographic should be concerned? If researchers are uninterested or not concerned, then perhaps it’s not a risk or danger or possibility for non-sports concussees? Some information from researchers would be helpful for clarification. Is the omission due to sports always getting most of the focus, or is it because researchers don’t think there’s a CTE danger to non-sports concussees? Or – and this is a new thought given recent developments of the past few weeks: are they planning instead to just ban youth football instead of study it?
Solution 2: Update the NIH Classification study page (mentioned in item 3) to provide information about these other studies underway. That page could and should be used to provide good information about what is currently occurring, not just be a news release that leaves out pertinent important bits of information. It has also been four years since the classification study occurred. It’s time to provide the public with an update on the NIH site as to where everything stands currently. Because this information does appear in other areas of the TBI section of the NIH site, I think this page in particular would benefit from an editor’s review and to provide more links to other information. I also suggest including a link to the CDC fact sheets for CTE, as they include some of this information.[9]
Solution 3: In news articles and other online materials, include more information about the lack of research tying symptoms to stages of CTE.
Although researchers have stated this repeatedly including those from BU [10], the CDC has prepared fact sheets stating those facts [9], and a letter from 60 experts [11] was just released stating that fact as well, this important piece of information is not getting out to the public via news articles. It is imperative that news organizations produce some articles about this for one main reason, which is detailed in the next item here, number 5. Read on!
Update 11/8/19: The CTE Workshop just held seems to indicate a switch from focusing on tau and looking more at other issues related to neurodegeneration. I’ll share more information after I review the workshop videos. Also, slides I’ve seen really seem to focus on sports and specific demographic groups.
Update 11/14/19: This is a topic of discussion at the CTE Workshop. I recommend that you take the time to watch the videos of the workshop. Links are included earlier in this post, in the update section for item 2.
Update 1/9/2020: Periodically, I see comments online from people stating that they have CTE, although scientists have not yet determined how to diagnose CTE in the living. Also, in October 2019 people in the online CTE group tweeted and shared a tweet which stated that “CTE cannot be diagnosed in the living.” Individuals in the group previously criticized me in the past and this post specifically. Also, a new study was released regarding imaging and CTE regarding a biomarker for tau pathology shows work on the issue, but commentary I’ve seen online from CLF representatives and others infers that there are issues. I’ve also noticed comments that work is also continuing on the Diagnose CTE project; I will look into that further. As of this date, I think that there are efforts underway to be able to diagnose CTE in the living. I think more progress would be beneficial to the public at this point, and I encourage researchers to produce something soon, or clarify and share more widely that it cannot yet be diagnosed in the living.
5) One prominent study found that the highest cause of death for those with Mild CTE was suicide.
Surely you’ve heard of the CTE study where 110 of 111 football players were diagnosed with CTE. It was big news and there were many articles published about it. Unfortunately for everyone, that’s all you often hear about that study. Did you know that there’s much more information in that study? As I read through it, one fact jumped off the page at me and stopped me in my tracks:
“The most common cause of death for participants with mild CTE pathology was suicide.” JAMA [12]
I nearly burst out crying when I saw that. Having been out here since 2011 and offering support in various ways to people trying to get through a concussion recovery, I was completely floored. How was this fact missed? Why wasn’t it reported more? Why focus so much on the NFL players? My thought was: we’ve completely missed it. The demographics for those found with Stage I of CTE lean toward younger men. Now every time I see a news article about a young man in his 20s or a young person who committed suicide, I cringe. I wonder what might have been done to help the person through his or her recovery. Concussion recovery is brutal. There’s no sugar-coating it. The focus on CTE has exposed the vulnerability that all non-sports concussees are too well aware: there’s not much known about post-concussion syndrome. I do think that is steadily improving, but we’re not there yet.
At this point, I know of noone who thinks CTE is not “real.” I don’t see anyone denying that. For the sake of those young men and women considering suicide, for all non-sports concussees, and for all PCSers, keep this in mind: PCS is real. It’s time to treat that more in earnest and help people struggling. Hopefully we can make progress before someone else decides to take their own life.
This is also why it is so critically important to get more information out about the early, mild stages of CTE. When all people hear about are late-stages and everyone thinks they’re doomed and that CTE is inevitable, hope might dissipate.
This is basically why I push for sharing of data and information about the mild stages. Years ago, I dropped everything I was doing to create my big support spreadsheet because I was concerned about things I was hearing and seeing on my various online properties for concussion. I was concerned about suicides. A big reason I’m writing all this now is for the same reason, the same concern. It’s time to take this more seriously.
Here are some examples of news articles about the study. It’s not a complete list, so that’s something you can look for yourself or keep in mind whenever you see references to this study.
- No mention of the suicide rate for mild stages: New York Times, SI, SBNation, ESPN
- Mention of the suicide rate for mild stages: CNN, LA Times
Solution 1: In news articles referencing the study about NFL players, mention the fact about the suicide rate for mild stages as well. Don’t ignore or hide such statistics.
Also, a quick note re the current trend to stop referring to PCS and instead call it “persistent symptoms” – I don’t think that’s going to work. That’s a story for another day, however, and it would require additional research on my part. #PCSisReal.
Update 11/14/19: This is still a problem. It was also a topic of discussion in the CTE Workshop. I think this is a main reason why it’s so important to get information about early stages of CTE.
Update 1/9/2020: The CDC released information in their October 2019 NCHS Data Brief regarding a large increase in overall suicide rates for ages 10-24 for the years 2007-2017. This is an issue that warrants further review and consideration, and to determine how TBIs factor into this.
6) Data presentation in published studies is inconsistent, making comparisons very difficult.
I’ve been reviewing multiple studies in the course of my research into CTE. I’ll be sharing information in other upcoming posts. However, it’s difficult to pull information and compare from study to study. Data is labeled or grouped differently, or missing. For instance, one study I reviewed included percentages for CTE and not actual numbers. Another study grouped Stages I and II and Stages III and IV instead of listing data separately for each stage. These kinds of actions have made some comparisons difficult.
Solution 1: In future studies, always break out information by the four CTE stages. Do not group them. Also, always include an actual number, not just a percentage. Journal editors and peer reviewers should reject any CTE-related study that does not meet these two basic requirements.
Solution 2: Make actual data accessible to the public so we can review it as well.
Solution 3: Update the studies that have the issues I’ve mentioned here to provide the additional information that’s missing or issue an addendum. I’ll provide a list in my next post.
Update 4/8/19: I’ve published another post, which provides examples and details about this item. See CTE Studies: Stages Breakdown From a Different Angle
7) It is difficult to find information about the early mild stages of CTE.
The more I’ve looked into CTE, the more interested I have become in the early stages. Why? It’s because it’s so difficult to find information about them in various places. I’ve described several examples already:
- Exclusion of mild stage samples from the NIH classification study
- Grouping of stages in a report instead of breaking out by four stages
- Use of Stage II in graphics instead of Stage I
It’s time to stop hiding information about mild stages of CTE. Researchers, journalists, academics, advocates, and everyone needs to answer a question: what’s most important to you? For me, it’s more important to prevent a suicide of a young person and ensure they get the information and help they need to navigate their concussion and PCS recovery.
To the public, I request that you do your own research and look at the studies, not just review news articles and website posts. I’ll be providing additional information from the studies I’ve reviewed so far in my upcoming posts. It won’t be a full list of all studies published, as I have time limitations. I think it would be helpful to still conduct your own reviews of actual studies.
Stay tuned! Follow along on my social accounts to be informed as to when I publish additional posts as well as other information periodically.
Update 11/14/19: This is still a problem. It was also a topic of discussion in the CTE Workshop. Watch the videos of the CTE Workshop (links in item 2 in this post).
[1] McKee AC, Stern RA, Nowinski CJ, Stein TD, Alvarez VE, Daneshvar DH, et al. The spectrum of disease in chronic traumatic encephalopathy. Brain. 2013;136(Pt 1):43–64. doi:10.1093/brain/aws307 [Note also: Erratum for this study]
[2] Head injury study of 35 former NFL and CFL players finds that 34 of them showed signs of brain disease before their deaths dailymail.co.uk December 12, 2012
[3] Armstrong, Thomas PhD The Myth of the Normal Brain: Embracing Neurodiversity AMA Journal of Ethics April 2015
[4] Nichols, Hannah What Happens to the Brain As We Age? medicalnewstoday.com August 29, 2017
[5] NIH Chronic Traumatic Encephalopathy Diagnosis Conference ninds.nih.gov
[6] McKee AC, Cairns NJ, Dickson DW, et al. The first NINDS/NIBIB consensus meeting to define neuropathological criteria for the diagnosis of chronic traumatic encephalopathy. Acta Neuropathol. 2015;131(1):75-86.
[7] Boston University finds former NHL player Ewen had CTE, contradicting earlier findings ctvnews.ca November 30, 2018
[8] CTE Research – The Stern Lab sternneurolab.org
[9] CDC Traumatic Brain Injury and Concussion – Potential Effects cdc.gov
[10] Current Understanding of Chronic Traumatic Encephalopathy 2014 NIH Public Access Baugh, Christine MPH; Robbins, Clifford BA; Stern, Robert PhD; McKee, Ann MD
[11] Stewart, William; Allinson, Kieren; Al-Saraj, Saffa et al Primum non nocere: a call for balance when reporting on CTE The Lancet Neurology March 2019
[12] Clinicopathological Evaluation of Chronic Traumatic Encephalopathy in Players of American Football JAMA