About 50 medical researchers from around the country converged on Boston Wednesday, as they prepare to launch a massive seven-year study into the brain disease known as chronic traumatic encephalopathy, or CTE, in July.
CTE is a degenerative disease similar to Alzheimer's. It's only found in people who've played football, boxed or taken part in other contact sports.
The researchers are recruiting 180 former NFL and college football players in order to study their brains. The goal is to develop ways to diagnose CTE in people while they're alive. The only way to diagnose it right now is by studying the brain after death.
One of the lead researchers is Robert Stern, Ph.D. He's a Boston University School of Medicine professor of neurology and neurosurgery and director of clinical research at BU's Chronic Traumatic Encephalopathy Center.
Helping Stern champion the research is Tim Fox, a 62-year-old former NFL safety who played for the Patriots, Chargers and Rams. He thinks he has CTE.
Fox and Stern spoke with WBUR's All Things Considered host Lisa Mullins about the disease. Stern says while much of the focus has been on concussions, CTE is caused by something that can seem more benign.
On diagnosing chronic traumatic encephalopathy:
Stern: "The only people who have ever been diagnosed with it after life, which is the only way to diagnose it, have had a history of repetitive hits to the head. It's never been seen in someone without that kind of history... It's a disease that gets set in motion from having repetitive hits ... regardless of whether they are symptomatic concussions."
Fox: "For me, the symptoms are difficulty recalling names, events, issues — even in common speech. I have trouble sometimes grasping what I want to say. It affects your personality. It's a very frustrating situation when you can't recall things that you'd like to recall. And I don't know whether that leads to a much shorter fuse. You know, I don't have the patience that I once had ... and from my perspective it's looking down the barrel, to me, of a ticking time bomb, because I see all these things in players that have been diagnosed after death, and I look at those symptoms and it's eerily similar. I would very much like to see them succeed in being able to diagnose this while you are living. I don't want to have to die to be confirmed that I've had issues for the last 10, 20 years of my life. And once they can definitively diagnose it, then we can more accurately, I would assume, definitively treat it."
Stern: "We have to figure out what the risk factors are for CTE. We know that there's a necessary risk factor, and that's getting your head hit over and over again. But obviously not everyone who hits their head a bunch gets this brain disease. So we need to figure out why one person gets it, and another person doesn't. Is it something about the number of hits, the age of hits, the type of hits? We're trying to figure that out. But is it also something about genetics? And so we've got these incredible geneticists involved with this project to be able to start answering questions about who might be at increased risk based on their genetic kind of make-up. But one of the things we know about these types of brain diseases is that if we can detect it early on and implement some kind of intervention that modifies the disease course, then in a way, that's prevention. By changing the course of the disease, slowing it down enough, at a time before there's too much brain destruction, that's the ultimate goal."
On a congressional report that found the NFL improperly tried to influence the research and withdrew funding for the study because it felt Stern is biased:
Stern: "I don't talk about funding issues. It's just not the thing to do in science. I'm absolutely thrilled that the NIH decided to fund this project. And I'm just really focused on moving the science forward."
Fox: "The NFL is scared to death of CTE because it can affect their bottom line. And the reality is the NFL is all about making money. They've got 32 owners that want to protect their income source. And this is a dramatic threat to the game itself. It's a dramatic threat to Pop Warner. It's a threat to high school football. It's a threat to college football. And as people stop playing at those levels, they will not have the same level of interest in the NFL. So the NFL has consistently dragged their feet in terms of trying to recognize that they have a problem, and they will only admit they have a problem when they're backed into a corner or they say something by mistake. And so the example of taking the funding away from a project that they had pledged — where they said there would be no strings attached — and then backtracked and took the money back, is just another example of that."
We were not able to reach the NFL for a response to Fox's comment.