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People who think they have CTE are seeking treatment at a controversial brain clinic

AILSA CHANG, HOST:

The degenerative brain condition known as CTE is mostly seen in professional athletes who play contact sports. But there's also a quiet population of everyday people who are afraid they have the disease. CTE can only be diagnosed through an autopsy, so they can't find out for sure, and many are turning to dubious treatments. NPR's Sacha Pfeiffer reports on one man's unorthodox health care journey.

SACHA PFEIFFER, BYLINE: Until about three years ago, T.J. Abraham delivered babies for a living. He was an OB-GYN for the University of Pittsburgh Medical Center, but he began to feel he was losing his mental sharpness, forgetting little things, slowing down.

T J ABRAHAM: 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.

PFEIFFER: He started having to look up basic information on birth control and antibiotics, drugs he prescribed routinely and used to know by heart, and had blank out during surgical consultations.

ABRAHAM: And that happened a couple times, to the point where patients were like, you know, Dr. Abraham, are you OK? Oh, yeah, yeah, I'm fine. Shake it off.

PFEIFFER: His happy personality was changing, too. He was quick to get angry, started avoiding people. He wondered if it was the pressure of having a newborn at home or the strain of seeing dozens of patients a day. But then this happened in an operating room.

ABRAHAM: 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.

PFEIFFER: After that incident, T.J. Abraham left his job and embarked on 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.

(SOUNDBITE OF ARCHIVED RECORDING)

DANIEL AMEN: Welcome, everybody. We're so thrilled that you've joined us again.

PFEIFFER: He flew to Southern California to a controversial private brain clinic.

(SOUNDBITE OF ARCHIVED RECORDING)

AMEN: 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.

PFEIFFER: 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 nontraditional 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.

(SOUNDBITE OF ARCHIVED RECORDING)

ROBERT JOHNSON: You're having a little bit of patchy, decreased blood flow across your cortex.

PFEIFFER: 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 appointment so he could relisten to them later, and he and Dr. Johnson gave NPR permission to air them.

(SOUNDBITE OF ARCHIVED RECORDING)

JOHNSON: So one way you can think of temporal lobes is temper lobes.

ABRAHAM: Temper - OK.

JOHNSON: All right? So a lot of times, this shows up as crankiness, irritability, forces of anger...

ABRAHAM: Loss of patience.

JOHNSON: ...Impatience...

ABRAHAM: OK.

JOHNSON: ...Low frustration tolerance.

ABRAHAM: OK.

JOHNSON: So this is a big factor, right? And this is really unusual for someone your age.

ABRAHAM: Right.

PFEIFFER: They talk about why Abraham, a man in his 40s, could have low blood flow in his brain.

(SOUNDBITE OF ARCHIVED RECORDING)

JOHNSON: The kind of things that can cause these changes typically fall under four or five categories. One is head injury, right? No surprise.

ABRAHAM: Correct.

PFEIFFER: 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.

(SOUNDBITE OF ARCHIVED RECORDING)

JOHNSON: Are you on turmeric?

ABRAHAM: No. Should I get on that?

JOHNSON: Yeah.

ABRAHAM: OK.

JOHNSON: Why don't we do that? We have one here that's really super pure.

ABRAHAM: OK.

PFEIFFER: Dr. Johnson says the spice 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.

(SOUNDBITE OF MONTAGE)

JOHNSON: Do you know what neurofeedback is?

Do you know what TMS is? Transcranial magnetic stimulation...

ABRAHAM: No.

JOHNSON: Meditation, prayer...

There's an app I want you to try.

There's some people using stem cells.

We'll come back that memory powder.

PFEIFFER: Memory powder is a dietary supplement made by Amen'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.

(SOUNDBITE OF ARCHIVED RECORDING)

ABRAHAM: I'll be honest with you, I would be willing to pay any money to get somewhat of my life back.

JOHNSON: Oh, I agree.

PFEIFFER: Dr. Johnson also recommends a sleep study and hyperbaric oxygen therapy.

(SOUNDBITE OF ARCHIVED RECORDING)

JOHNSON: I'm going to pull all this out in a report...

ABRAHAM: OK.

JOHNSON: ...So don't worry about remembering...

ABRAHAM: And I'll get that report?

JOHNSON: Yeah, and I'm going to - so you're going to have, like, a 20-page report when you leave today.

ABRAHAM: OK.

WILLIAM BARR: Our group considers it kind of a joke when we get those reports.

PFEIFFER: William Barr is director of neuropsychology at New York University's School of Medicine.

BARR: 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.

PFEIFFER: He said it's not surprising some Amen Clinics recommendations make patients feel better because they're common sense tips for healthy living.

BARR: Not like he invented a 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 (laughter).

PFEIFFER: But an Amen Clinics 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 Bailes, a prominent neurosurgeon who has also had financial stakes in the brain health industry, says Amen has, quote, "helped out thousands of patients."

JULIAN BAILES: 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.

PFEIFFER: But William Barr of NYU is unconvinced.

BARR: Unfortunately, in what I call the concussion industry, there are a lot of opportunists looking for the quick money, and people who are feeling hopeless will go for anything.

PFEIFFER: Dr. Amen is well aware of his reputation in many medical circles.

AMEN: 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.

PFEIFFER: 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.

AMEN: You know, I often say, if there's no margin, there's no mission. And we're very proud of everything we sell.

PFEIFFER: Amen 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.

AMEN: 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 OK with that because I have the stories of transformation.

PFEIFFER: In early 2019, about six months after his first Amen Clinics visit, T.J. Abraham returned for a follow-up.

(SOUNDBITE OF ARCHIVED RECORDING)

JOHNSON: Let me show you your scan.

ABRAHAM: OK.

PFEIFFER: He and Dr. Johnson reviewed fresh scans of his brain.

(SOUNDBITE OF ARCHIVED RECORDING)

JOHNSON: Quite a bit better, actually. Right, look at this. Your temporal lobe's actually - look how much better those look.

ABRAHAM: Yeah.

JOHNSON: OK?

ABRAHAM: It's good. That's a good thing.

JOHNSON: And then your frontal lobes - it's kind of a wash. But really overall, this is a much healthier-looking brain.

ABRAHAM: And that's just from me doing the therapy you think? And the - OK.

JOHNSON: The therapy, you know, the weight loss, the exercise, the cognitive rehabilitation.

ABRAHAM: So what I'm doing is working?

JOHNSON: Yes, it's working.

PFEIFFER: Abraham told me later, his Amen Clinics experience was validating.

ABRAHAM: 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 in the areas that you know are causing this, it all made sense. It kind of...

PFEIFFER: But Dr. Steven 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.

STEVEN HYMAN: 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.

PFEIFFER: 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.

HYMAN: But equally as problematic is they are not getting diagnosed with potentially treatable, more common illnesses like depression that might be posing, in their minds, as CTE.

PFEIFFER: 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.

ABRAHAM: 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 CTE.

PFEIFFER: T.J. Abraham left his Amen Clinics 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.

ABRAHAM: I think from the last time we met, it's definitely worse.

PFEIFFER: 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.

ABRAHAM: And I use the word doom because I feel like there's no easy way out of this and there's no good - 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.

PFEIFFER: You've talked about how it was expensive.

ABRAHAM: Mmm hmm.

PFEIFFER: What's the expense been?

ABRAHAM: Probably over almost close to $150,000. If you look at hyperbaric, Amen Clinics, medicines, supplements, I'd say almost $150,000.

PFEIFFER: Out of pocket.

ABRAHAM: Mmm hmm.

PFEIFFER: How do you feel about having spent that and yet still feeling like you're going downhill?

ABRAHAM: 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. And I - but I thought it was a good gamble because it was my health.

PFEIFFER: Sacha Pfeiffer, NPR News.

(SOUNDBITE OF FLYING LOTUS SONG, "NEVER CATCH ME") Transcript provided by NPR, Copyright NPR.