Friday, January 11, 2013

Sure, NOW the CTE researchers care about the living - Doc's bark for January 11, 2013

For those who did not watch yesterday's edition of ESPN's Outside the Lines, you missed a very valuable and noteworthy statement by Dr. Ann McKee, a neuropathologist at Boston University's School of Medicine.  During an interview with ESPN's Jeremy Schapp, Dr. McKee stated that perhaps the time has come for some form of medical testing of current players, while still alive, to determine if they are at risk of developing CTE or are indeed suffering from it. To my knowledge, and for the record, this is the very first time I've heard medical scientist associated with the Boston University research group publicly discuss studying the central nervous systems of the living as opposed to the deceased.

Perhaps the recent disclosure that the late Junior Seau's brain indeed had CTE influenced this public statement by Dr. McKee.  Albeit hardly surprising or unexpected, perhaps the harsh reality about Seau, a man who played linebacker for the better part of two decades without ever being diagnosed with a concussion, was the final straw in this never-ending debate about player safety in football.  As hopeful as I am that this is indeed the case and a good step forward in the NFL's evolution and sports medicine, I'm just a tad cynical.

Let me explain why...

On August 17, 2010 I contacted the Boston University research group, where my brain and spinal cord are registered to go after I kick the ol' bucket, and reached out to Dr. McKee after reading this news brief in the New York Daily News:
Boston University neuropathologist Ann McKee says the toxic proteins that form after brain trauma and lead to depression and dementia may also cause ALS, better known as Lou Gehrig's disease.

My primary inquiry was to find out what the "research team" knew about the basis of this article and what exactly Dr. McKee knew that the rest of us didn't.  In case people forgot or didn't know, ALS was a research interest of mine during the mid-1980s while I was at the University of South Florida, studying biochemistry and the physical structure and behavior of proteins found in voluntary muscle. Given I have progressive muscle weakness in my legs and arms as my spinal issues worsen, and have been through my own gamut of medical tests and procedures, I wanted to learn as much as I possibly could. Needless to say, the response was less than satisfactory for me:

Dear Dr. Pushkin: Thanks for your questions. Here are our answers, for now. As you know, we are really trying to push this science forward and are actually exploring some of these avenues currently.
1.       All of the subjects identified in Dr. McKee’s paper were diagnosed post-mortem. Thus far, no tests in living patients, but we hope to expand to that sometime in the future.

2.       Currently there is no definitive diagnostic test in a living person.
3.       Dr. McKee identified the tau and TDP-43 using specific staining methods in the post-mortem brain and spinal cord tissue.
4.       At this point, we cannot determine age of onset through levels of these proteins. This may be difficult given the natural/normal presence of TDP-43 in the body for regular functioning, but it is definitely something we will consider.
5.       Thus far, no research specifically on these areas.

Okay... so the route to knowledge was still through the dead. Part of me accepted that. Part of me thought the science world could do better, and I replied back to the research group with my own suggestions:

I already assumed Dr. McKee identified the proteins by tissue staining methods.  What I’m interested in is the following:
Suppose she were to do a spinal tap on a live person and draw off a small sample of CSF [Cerebrospinal fluid].  Afterwards, if she can identify presence of either or both proteins by chemical/enzymatic means, she could radiolabel the proteins and study the new radioactive derivative’s half-life in a liquid scintillation counter.  From calculations, she should be able to determine how long those proteins might have been present in the CSF — i.e., she’d then know the approximate onset date of illness based on length of time proteins were present in CSF.

Make sense? In a more sophisticated way, she’d be carbon dating the proteins relative to how long they’ve been housed within a living patient.

If these proteins are naturally present in the body, let’s assume brain and spinal tissue, that doesn’t necessarily mean they’re normally present in CSF, thus providing a possible medium for latent incubation and transport. In fact, these two proteins should not be present in CSF in a normal person.
Thanks in advance for Dr. McKee’s feedback. 

No one EVER responded back. Yes, what I've learned over the past couple of years is that the very people who want the brains and spinal cords of dead former football players are busy busy people with no time to waste with ideas of former football players whose brains may be scrambled eggs while everyone waits for us to die.  Yes, these people are busy busy and a little too arrogant and condescending for their own good.

I'm far from Albert Einstein or Jonas Salk, but I'm far from a dithering idiot drooling on a bib either.  I recently had a similar conversation with multiple colleagues and felt it necessary to point out that being a former football player and happening to use a wheelchair due to neurologically impairment should NOT be confused with stupidity.  Maybe this has never been an issue for you, but I've spent my entire adult life waiting for people to publicly acknowledge that I'm a highly intelligent person who knows what the hell I'm talking about and have very good and insightful ideas to offer.  Oh sure... I know plenty of people who will call me "smart" in private, but my intellect shouldn't be some dirty secret like bed wetting.  I have a freaking high IQ, three academic degrees, have published out my wazoo, have lectured around the world, and managed to teach chemistry and physics -- NOT TIDDLY-WINKS -- for 25 years! And yes... I expect proper recognition as being an intelligent and intellectually-capable human being, just like I give everyone else in my professional circles.

Anyway, let's fast-forward to just before Thanksgiving weekend 2012. HBO's Real Sports ran a segment on football concussions and ALS. Incredible. Powerful. Fascinating.  Also a little upsetting, because a non-medical member of the Boston University research team boldly proclaimed to HBO Sports' Bernie Goldberg that Boston University group has the ability to prove causality between current neurological disease and collegiate football, all with the intention of holding the NCAA financially liable. THIS was news to me! In barely two years, BU medical researchers have gone from studying the dead to now having a living breathing smoking gun to sue the NCAA for damages, damages to benefit the living, not those left behind by the dead? In the timeline of scientific progress, this is the equivalent to testing the Atomic Bomb and suddenly having Cold Fusion. Science doesn't work that fast, and if it did, it's reprehensible and unethical for the BU research team not to disseminate this information to the most important community of all -- all the current and former football players who have bequeathed their brains and spinal cords to BU's study!

If Ann McKee has been keeping important scientific knowledge and development of a viable diagnostic medical test under wraps in order to deceive former football players who are willing to contribute towards her research while she and her director, Dr. Robert C. Cantu, coordinate their media calendars, any positive accomplishment has been contaminated and compromised.  Worse, if the grand goal of BU's entire research agenda is to help their executive leader, Chris Nowinski, possessor of a bachelors degree in sociology from Harvard, grease the wheels for lottery jackpot-sized lawsuit against the NCAA, then the entire medical research program is undermined by major conflict of interest issues and has lost all credibility.

The ironic part is that a "diagnostic test for the living" is fairly simple now that Dr. McKee has presumably done all the pathology work on post-mortem brains and spinal cords -- at this point, all we need is an efficient and safe routine to perform spinal taps on large men and slightly modified analytical biochemical lab techniques.  Spinal taps yield CSF, which bathes our brains and spinal cords while we're alive. After death, things get a little more challenging since CSF could very well leave the body during rigor mortis. It's logistically impractical to harvest CSF immediately after death, even if everyone kicks the bucket outside the front door of Dr. McKee's laboratory. Are spinal taps routine? Not really, and they are very uncomfortable and unpleasant, but they contain the very proteins found in our brain and spinal cord tissues when affected by CTE, ALS and other deadly neurological diseases.

If indeed Dr. McKee and her BU colleagues have this test under development, this is clearly a big step forward towards addressing football safety and neurological injury issues.  But these people need to be more forthcoming with the public, especially all the men who have already played football or continue to play at the school, collegiate and professional levels. We lack sufficient transparency in our health care industry as it is.  We don't need the medical research community adding to it.

As for me, the BU folks are welcome to all the publicity and recognition they crave... BUT, I expect my public acknowledgment for contributing to the solution of a deadly problem, especially if Dr. McKee's technique employs any of my 2010 recommendations.  Treat me as a human being with an appropriate thank you, instead of treating me like a medical specimen in waiting.

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