Consider This from NPR - NPR Investigates: CTE, Desperate Patients, And The Hope For A Cure (Pt 2)

Episode Date: November 23, 2021

CTE — chronic traumatic encephalopathy — is a degenerative brain disease found in many former professional football and hockey players, for whom blows to the head have long been part of the job. But those injuries also occur outside the world of pro sports. And as awareness of CTE has grown, so has a thriving market of dubious remedies marketed to everyday people who believe they are suffering from CTE — a disease that can't even be diagnosed until after death, through an autopsy of the brain. In the second of two episodes, Sacha Pfeiffer of NPR's Investigative Team reports on some of those desperate patients and their hope for a cure. In participating regions, you'll also hear a local news segment that will help you make sense of what's going on in your community.Email us at [e-mail] more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Until about three years ago, TJ Abraham delivered babies for a living. He was an OBGYN for the University of Pittsburgh Medical Center. But he started to feel like he was slipping at work, like forgetting little things, slowing down. Surgeries were taking me longer. I felt like my hand-eye coordination was off, and I would get flustered because I didn't know what was wrong. Soon, TJ found himself looking up basic information on birth control and antibiotics, stuff he'd known routinely by heart. At one point, he began blanking out during important conversations, including surgical consultations. That happened a couple of times, to the point where patients would be like, you know, Dr. Abraham, are you okay? Oh, yeah, yeah, I'm fine, and shake it off. TJ could feel his personality shifting too.

He was quick to anger. He started avoiding people. Maybe it was the pressure of a newborn baby at home, he thought. Maybe he was just getting burnt out at work. But then one day, in an operating room, this happened. I was doing a hysterectomy. I couldn't remember what to do to finish it the last couple steps. And so I made up some excuse, told the nurses I think I had to go to the bathroom. I went out, got on my phone and looked it up because I couldn't remember what to do.

What was happening to him? DJ began a desperate search for answers. And he found someone offering them. Welcome to the Brain Warriors Way podcast. I'm Dr. Daniel Amen. A doctor with a podcast, a flashy website, a clinical practice, an empire of products promoting brain health. Use the code PODCAST10 to get a 10% discount on a full evaluation at amenclinics.com. For TJ, the clinic offered hope of relief, but at a cost. I'll be honest with you, I wouldn't want to pay any money to get someone in my life back. This episode, the second part of a special report from NPR's

investigative team about everyday people who believe they might have a fatal brain disease, people who are turning to remedies that are dubious at best. It's Consider This from NPR. I'm Ad Send, spend, or receive money internationally, and always get the real-time mid-market exchange rate with no hidden fees. Download the Wise app today or visit wise.com. T's and C's apply. It's Consider This from NPR. T.J. Abraham, the Pennsylvania OBGYN we just introduced to you,

is part of a quiet population of people who are afraid they have CTE. That's the fatal brain disease that's been diagnosed in many former pro football and hockey players. But these people have never played pro sports. And many, like T.J., are turning to dubious treatments for a disease that can't even be diagnosed until after death through an autopsy of the brain. T.J. Abraham told his story to NPR's Sasha Pfeiffer. She picks it up from here with what happened next, after T.J. ducked out of a lengthy medical odyssey to try to figure out what was wrong with him. He saw many doctors, tried multiple prescription drugs, went to several treatment centers.

He was told he may be bipolar or have a brain tumor or a personality disorder or CTE, chronic traumatic encephalopathy, an Alzheimer's like condition. But none of that was conclusive, and he often felt brushed off or misdiagnosed. So eventually, he tried something very different. Welcome, everybody. We're so thrilled that you've joined us again. He flew to Southern California to a controversial private brain clinic. This week we're going to talk about one of the most common things we see here at Amen Clinics that completely shocked me as a psychiatrist. That's Dr. Daniel Amen on his podcast.

He's a televangelist-like psychiatrist and self-described brain health expert who started a nationwide company called the Amen Clinics. It touts its non-traditional approach and attracts thousands of people afraid they have CTE or other types of brain problems and dissatisfied with conventional doctors. But many mainstream physicians say it operates in the gray zone between legitimate medical care and what they call pseudo-medicine. You're having a little bit of patchy decreased blood flow across your cortex. That's Amen Clinic's medical director, Dr. Robert Johnson, in summer 2018,

showing T.J. Abraham a scan of his brain. He says it shows low blood flow that could be related to his symptoms. Abraham taped his appointments so he could re-listen to them later, and he and Dr. Johnson gave NPR permission to air them. So one of the ways you can think of temporal lobes is temper lobes. Temporal, okay. Right? So a lot of times this shows up as crankiness, irritability, loss of anger, impatience, frustration tolerance. Okay.

So this is a big factor, right? And this is really unusual for someone your age. They talk about why Abraham, a man in his 40s, could have low blood flow in his brain. The kind of things that can cause these changes typically fall into four or five categories. One is head injury, right? No surprise. It's no surprise because CTE is believed to be caused by repeated head trauma, and Abraham has a history of that. He played Division I football at Duquesne University.

He also played ice hockey. And he once had a bad fall that knocked him unconscious. Dr. Johnson tells him CTE can only be diagnosed through an autopsy, but his head injuries are probably a major cause of his problems. They talk about how Abraham could make his brain healthier. Are you on turmeric? No. Should I get on that? Yeah. Why don't we do that? We have one here that's really super pure.

Dr. Johnson says the spiced turmeric can be beneficial for the brain. It's sold relatively inexpensively at most grocery stores, but the Amen Clinic sells a 60-capsule bottle for about $45. He runs through a long list of other suggestions, from exercise and healthy eating to much less common treatments. You know what neurofeedback is? You know what TMS is? Transcranial magnetic stimulation? No. Meditation? Rare. There's an app I want you to try. There's some people using stem cells. Come back to that memory powder. Memory powder is a dietary supplement made by Amon's company and basically has the ingredients of a multivitamin.

Dr. Johnson says it helps with what he calls memory permanence. It costs about $115 for roughly six ounces. I'll be honest with you, I wouldn't want to pay any money to get someone in my life back. Dr. Johnson also recommends a sleep study and hyperbaric oxygen therapy. I'm going to bowl all this out in reports, so don't worry about remembering. And I'll get that report? Yeah, and I'm going to... So you're going to have like a 20-page report when you leave today.

Okay. Our group considers it kind of a joke when we get those reports. William Barr is director of neuropsychology at New York University's School of Medicine. When you look at them from an informed clinical angle, there's nothing that's really scientifically supported in them. It's slick, it's nice, but there's not scientific support. He said it's not surprising some Amen Clinic's recommendations make patients feel better because they're common-sense tips for healthy living.

It's not like he invented the Mediterranean diet. And when it comes down to it, good life habits are the things that come out. Sleep, good diet, and exercise. The thing is, those are free. But an Amen Clinic's visit can cost thousands of dollars, plus travel costs, and patients pay out of pocket. In return, they get a lengthy consultation and the promise of an innovative brain-body approach. Dr. Julian Bales, a prominent neurosurgeon who has also had financial stakes in the brain health industry, says Amen has, quote, helped out thousands of patients. You know, so many CTE sufferers or people who think they have CTE need an empathetic,

knowledgeable, experienced psychiatrist, and that's him. So I admire the work he's done. But William Barr of NYU is unconvinced. Unfortunately, in what I call the concussion industry, there are a lot of opportunists looking for the quick money, and people who were feeling hopeless will go for anything. Dr. Amon is well aware of his reputation in many medical circles. A long time ago, I just stopped listening to the haters. And the fact that standard medicine doesn't love me, well, I don't much love them.

So it's sort of fair. Amen told me he's, quote, practicing psychiatry in an exciting new way by looking inside people's skulls using brain scans called SPECT, although other doctors dispute their value. Amen also told me he'll suggest almost any treatment if he thinks it might help, from medicine to marital therapy. And he defended making money from his product line. You know, I often say if there's no margin, there's no mission. And we're very proud of everything we sell. Amon said some patients tell him he's their last hope, and he said his critics don't understand that he's ahead of his time. You know, I go back to Machiavelli.

He said if you do something different, people are going to hate you for it. And I'm sort of okay with it because I have the stories of transformation. In early 2019, about six months after his first Amen Clinics visit, T.J. Abraham returned for a follow-up. Let me show you a scan.

He and Dr. Johnson reviewed fresh scans of his brain. Quite a bit better, actually. All right, look at this. Your temporal lobes, actually, look how much better those look. Yeah. Okay. That's good. That's a good thing.

And then your frontal lobes, it's kind of a wash. But really, overall, it's a much healthier-looking brain. And that's just from me doing the therapy, I think? Therapy, the weight loss, the exercise, the cognitive rehabilitation. So what I'm doing is working? Yes, it's working. Abraham told me later his Amen Clinic's experience was validating. When you see that your personality has changed drastically and you are now doing things that are not characteristic of you,

and then you see a brain scan that shows damage and the areas that you know are causing this, it all made sense. But Dr. Stephen Hyman, Director of Psychiatric Research at the Broad Institute of MIT and Harvard, says these scans can be interpreted differently by different doctors

and have little value in diagnosing or treating CTE. People who are desperate are vulnerable to snake oil. And this has all of the look and feel of a clinic that's preying on people's desperation. What the Amen clinics do may not be illegal, he said, but exploits frightened, vulnerable people and regulatory loopholes. The FDA, for example, doesn't regulate the brain health products that doctors prescribe. Hyman said many patients concerned they have CTE invest time and money in questionable treatments

for a disease that has no approved remedies. But equally as problematic is they're not getting diagnosed with potentially treatable, more common illnesses like depression that might be posing in their minds as CTE. But the suggestion they're simply depressed makes many people who fear they have CTE give up on standard doctors. They often feel like pharmaceutical guinea pigs put on one antidepressant after another. T.J. Abraham said one doctor implied he was faking his symptoms.

People want to dismiss it or they want to say it's psychiatric or they want to say it's life stress. I don't think the mainstream, I don't think these big academic institutes have a clue what to do with people that maybe possibly have CT. T.J. Abraham left his Amen Clinic's follow-up appointment feeling hopeful. Then the pandemic hit, and I didn't talk to him for more than a year. When I finally saw him again a few months ago, his positive attitude about his health was gone. I think from the last time we met, it's definitely worse.

He said he was forgetting things again, misplacing things, having trouble multitasking, and dealing with anxiety and depression. He told me he felt a sense of doom. And I use the word doom because I feel like there's no easy way out of this and there's no good outcome to this. And I think what's hard is everything that I've been told may help, I've tried to do. The hyperbaric oxygen, I've done brain therapy, brain rehab, changed my diet, worked out everything they've asked me to do, I've done. And I haven't noticed a drastic improvement. If anything, I notice feeling worse. You've talked about how it was expensive. What's the expense been?

Probably over almost close to $150,000. If you look at hyperbaric, Amen Clinics, medicines, supplements, I'd say almost $150,000. Out of pocket. How do you feel about having spent that and yet still feeling like you're going downhill? I mean, it's a lot of money, but at the same time, because of my age, my wife, my kids, my parents, I wanted to try anything. So I did it. No one ever said this was a definite treatment. And I knew that these were just recommendations that may help, and I was desperate to try to feel better. So, I mean, it's never easy to know that you just wasted that much money on something, but it was a gamble.

But I thought it was a good gamble because it was my health. Sasha Pfeiffer, NPR News. NPR's Sasha Pfeiffer. We want to say thank you to Sasha and to NPR's Meg Anderson, Monica Evstatieva, Barry Hardiman, Bob Little, and Bruce Oster for their help

bringing these episodes to you. It's Consider This from NPR. I'm Audie Cornish.