Everyday people fear they have CTE. A dubious market has sprung up to treat them – ideastream

Cancer, Lee Brush concluded, would be preferable to this.

At least a brain tumor would be a definitive diagnosis with a potential cure, and his family and friends would understand what he was up against, he thought.

Instead, Brush struggled with unexplained headaches, light sensitivity, trouble focusing. He kept losing his keys, his phone, his train of thought absent-minded "brain farts," he joked, while privately worrying that his memory lapses were a harbinger of something worse. At first, he blamed job stress and family pressures, but over time he began to wonder if his problems were more serious than that.

"Things that started to scare me were the ringing in the ears," said Brush, 47, who lives in Scottsdale, Ariz. "I call it 'electric Southern crickets.' Like, if you were to sit on the patio at night and hear all the crickets going, but imagine those electric. Well, I'd never had that before."

His work performance was slipping. He felt anxious, angry and depressed. Outwardly, life was good: Athletic and physically fit, Brush is a husband, father, homeowner and trained engineer, gainfully employed. But something was wrong, and no doctor could say why.

As his symptoms worsened, this was his creeping fear: Could the head injuries he'd had over the years from skiing and skateboarding, a bad car crash and countless helmet-to-helmet collisions while playing Division I football at Purdue University be the source of his problems?

If they were, could he have chronic traumatic encephalopathy (CTE), the Alzheimer's-like fatal brain disease believed to be caused by repeated hits to the head? That possibility, along with the knowledge that CTE is untreatable and diagnosable only by autopsy, left him inconsolable.

CTE is largely an NFL story, with prominent players like Junior Seau, Aaron Hernandez and, just this month, Phillip Adams making tragic headlines for taking their own lives and later being diagnosed with the degenerative condition. Last week, the family of another NFL player, Vincent Jackson, who died in February at age 38, announced he had CTE.

But Brush is part of a quiet population of everyday men and women who never played professional sports yet fear they have the disease. Frantic for a cure, they often turn to dubious treatments, controversial doctors or health care providers with financial stakes in the products they recommend and the loosely regulated brain health industry is profiting.

NPR has interviewed nearly three dozen people who were not professional athletes but believe they may be experiencing symptoms of CTE, as well as a dozen brain specialists who routinely see patients convinced they have the disorder and willing to try almost anything that might help ease symptoms. Some have spent tens of thousands of dollars on fruitless therapies.

"There is this captive audience of incredibly vulnerable people," said Robert Stern, a neuroscientist who co-founded Boston University's CTE Center, which studies the brains of people whose families donate them after they die. "They feel like they've got this disease, or they've been told they have this disease, and they want a treatment and desperately want to be better. And you've got a lot of folks out there who want to take advantage of that."

There are no Food and Drug Administration-approved treatments for CTE, yet numerous products and services are marketed as possibly able to ease its symptoms, from craniosacral therapy to a type of light therapy known as photobiomodulation to a wide range of dietary supplements. They are often expensive and not covered by insurance, and many doctors question their value. Brain health supplements alone are projected to reach nearly $6 billion in annual worldwide sales by 2023, according to the AARP-affiliated Global Council on Brain Health, which calls them "a massive waste of money."

Brush said several of his former football teammates who share his CTE concerns have tried a variety of recommended antidotes, from cannabis to neurological chiropractors. "There's people that just grasp at everything," he said, "and they spend the money until something shinier and newer comes along."

Brush, who has been managing his CTE fears for more than a decade, now feels relatively healthy, thanks to an antidepressant and therapy sessions with his pastor. He tries not to dwell on what he cannot control and believes calming his fears has improved his well-being. He even wonders if his dread of the disease caused psychosomatic symptoms. But his disquiet is still there.

"You hear, 'You may have something that's terminal, but we can't diagnose you and there's no drug we can give you,' " Brush said. "You hear there's nothing they can do, and you go insane."

If there's anything more frightening than the prospect of losing your mind in old age, it's losing it while you're still young.

That's what CTE can do: gradually erode the brains of people in the prime of their lives, sometimes damaging their memory and mental capacity and causing dementia-like symptoms. It can also change their personalities, making them moody and depressed, even violent and suicidal.

Scores of elite athletes from sports including football, hockey, boxing, wrestling, rugby and bobsledding have been diagnosed with CTE after they died. But fear of the disease, and of deteriorating from it, extends far beyond pro athletes and Olympians. Many people who have played amateur sports or who suffered head trauma from military service, falls, auto accidents or domestic violence also harbor this concern.

"I've had scenarios where people fill out a new-patient form and ... we ask, 'What's the main reason you're here today?' They write in, 'I have CTE,' " said Dr. Vernon Williams, a sports neurologist at Cedars-Sinai Kerlan-Jobe Institute in Los Angeles.

Such patients are typically men in their 20s to 60s, but also women and children, who complain of headaches and forgetfulness; difficulty planning, focusing, multitasking and making decisions; aggression, impulsivity and poor judgment; and other troubling changes in mood, behavior and cognition, Williams said.

It's impossible to quantify how many people might have CTE, or CTE concerns, because the potential pool is so massive: It could include anyone who has ever played a contact sport or suffered multiple head injuries. What's more, some people who worry they have CTE say they are reluctant to share their fears because they don't want to compromise their employment, health insurance or relationships with family and friends.

Many doctors consider CTE a rare disorder and believe widespread fear of it is unjustified. They say the same symptoms could be caused by a curable condition, such as a vitamin deficiency, a hormone imbalance, depression or even normal aging. And as awareness of CTE has grown through a prominent movie and the NFL's massive concussion settlement, some people have become "more hypervigilant, more aware, more worried that that headache they have is a symptom that they're developing CTE," Williams said.

But Dr. Ann McKee a neuropathologist who directs the VA Boston Healthcare System/Boston University School of Medicine/Concussion Legacy Foundation brain bank, which since its founding in 2008 has diagnosed 700 cases of the disease, including 315 in former NFL players said many doctors are too dismissive of CTE fears.

"A lot of players I've talked to who have headaches and maybe depression and some memory loss don't get evaluated seriously if they think it might be related to their football," she said. As a result, they need open-minded physicians who will consider all possible causes of their symptoms, including past head injuries, McKee added, "to determine if maybe, maybe, this represents a case of CTE."

But if medicine is equal parts art and science, the dilemma over how to help people who fear they have CTE tests the limits of both. Mainstream doctors, unable to provide an official diagnosis or FDA-approved treatment, can do little except try to alleviate symptoms, often with medication. That leaves many patients feeling like pharmaceutical guinea pigs, put on one prescription drug after another, frequently with little or no improvement.

In search of relief, potential answers and health care they see as more respectful, some patients resort to unproven, unconventional options that flourish in a gray zone between medical care definitively proved to be effective and what detractors call "pseudomedicine."

As a result, scientific debate has arisen over how to treat people who fear they have CTE yet cannot be diagnosed during their lifetimes. Many brain specialists disagree on what remedies may help them feel better and whether the cost of those treatments is reasonable in light of their potential benefit. Meanwhile, frightened patients sit in the middle, left to wonder and worry.

T.J. Abraham understands that desperation.

He was an OB-GYN for the University of Pittsburgh Medical Center, working at a health center in Erie, Pa., when he became concerned about his ability to do his job.

"Surgeries were taking me longer," said Abraham, 44. "I felt like my hand-eye coordination was off, and I would get flustered because I didn't know what was wrong."

He started having to look up basic information on birth control and antibiotics drugs he prescribed routinely and used to know by heart and would blank out during surgical consultations. He also became uncharacteristically moody and angry.

"I was just turning into this monster," Abraham said. "Not violent, but I'd get mad or frustrated or lose my patience. My wife would always say, 'You're not the guy I married. You're just not the guy that I married.' "

Abraham had begun wondering in his 30s if he was experiencing mental decline. But a disturbing professional turning point came when he was in an operating room about four years ago, performing a hysterectomy, and "I couldn't remember what to do to finish the last couple of steps," Abraham recalled. "So I made up some excuse, told the nurses I had to go to the bathroom, went out, got on my phone and looked it up."

After that incident, Abraham left his job and embarked on a lengthy medical odyssey to try to determine what was wrong with him. He saw many doctors, tried multiple prescription drugs, went to several treatment centers and underwent extensive testing. He was told he may be bipolar or have a brain tumor, a personality disorder or CTE, but none of that was certain and he often felt brushed off or misdiagnosed.

"I was dismissed so many times," Abraham said. "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."

So eventually he flew to a controversial private brain clinic in Southern California that's part of a nationwide chain called the Amen Clinics. Founded by Dr. Daniel Amen, a televangelist-like psychiatrist and self-described brain health expert, the company touts its nontraditional method of treating brain conditions. It attracts thousands of people who are afraid they have CTE or other kinds of brain problems and are dissatisfied with conventional doctors.

An Amen Clinics visit can cost several thousand dollars, not including travel costs, and patients pay out of pocket. In return, they get a lengthy one-on-one consultation and the promise of an "innovative brain-body approach." That typically includes a SPECT scan, short for "single photon emission computed tomography," a type of nuclear imaging test that measures blood flow in bodily organs.

SPECT is a central feature of the Amen approach. In an interview with NPR, Amen said his company uses SPECT to get a glimpse inside patients' brains, an atypical practice in mainstream psychiatry.

"Why are psychiatrists the only medical doctors that never look at the organ they treat?" said Amen. "How does that make any sense at all in 2021?"

The Amen Clinics, with nine locations across the U.S., says it treats nearly 50 types of brain conditions, has seen 100,000 patients and has built a database of more than 200,000 brain scans.

Based partly on those scans, the company says it designs customized treatments, which can be an added expense. Amen said that by using SPECT to identify areas of low blood flow in patients' brains, which could indicate areas of damage, his clinics are able to motivate patients to improve their brain health through what he calls "brain envy."

"Freud was wrong penis envy is not the cause of anybody's problem," Amen said. "It's when you see your scan and it's not healthy, you want it to be healthy. So you care. So you're more likely to lose weight. You're more likely to eat better. When you see your brain, you fall in love with it, and then you're more compliant."

Amen calls himself a pioneer, one who is shaking up the "psychiatric status quo" and questioning the traditional way of treating brain ailments, with its dependence on powerful psychiatric drugs that often come with unpleasant side effects.

Rebuffing his critics, Amen insists he is "practicing psychiatry in an exciting new way."

"What we're trying to do is change how psychiatrists practice by adding imaging," he said. "Am I ahead of my time? Yes, and that's irritating."

SPECT's value in diagnosing brain injuries is unsettled science and the subject of voluminous research, with some peer-reviewed studies contradicting the findings of others. Amen points to numerous peer-reviewed scientific articles promoting the use of SPECT in psychiatry, including some he authored himself. The American Psychiatric Association, the main professional organization of psychiatrists in the U.S., has published a paper stating that SPECT is not recommended for the diagnosis or treatment of psychiatric disorders, and cautioning that it exposes patients to radiation.

In addition, many neuroscientists note that blood flow in the brain can vary based on which parts of the organ are active at any given time, so an area showing low blood flow is not necessarily problematic and even if it is, there could be a variety of causes, some of them possibly treatable.

"That same pattern of decreased blood flow can also result from countless clinical conditions that aren't CTE, such as depression, ADHD, anxiety and Alzheimer's," said William Barr, director of neuropsychology at New York University's Grossman School of Medicine.

Dr. Steven Hyman, director of the Stanley Center for Psychiatric Research at the Broad Institute of the Massachusetts Institute of Technology and Harvard University, as well as a former director of the National Institute of Mental Health, said these scans can be interpreted differently by different doctors and have little value in diagnosing or treating CTE.

In the view of Barr, Hyman and other brain specialists, technologies viewed in some medical circles as potentially helping people with CTE, such as SPECT or hyperbaric oxygen therapy, lack sufficient evidence for that use.

At T.J. Abraham's first Amen Clinics appointment, in Costa Mesa, Calif., in 2018, he was told by the company's medical director, Dr. Robert Johnson, that his scans showed troubling findings, particularly for someone his age: low blood flow in parts of his brain involved in mood and memory. Johnson said that this could help explain Abraham's mood and memory problems.

During the two-day appointment, which included testing and consultations, they discussed other possible causes of symptoms like Abraham's, from herpes to gluten sensitivity to recreational drug use to Lyme disease. One by one, they eliminated most of them, and Johnson reached a conclusion: Although a diagnosis of CTE requires an autopsy, he said, Abraham's past head injuries are probably a major cause of his problems.

That was plausible to Abraham, because he has a history of head trauma: He once had a bad fall that knocked him unconscious, and he was on the football team at Division I Duquesne University. During his years playing contact sports, which also included ice hockey, he lost track of how many times he was hit so hard he saw stars.

"When I was in high school, we had a coach who wanted us to head-butt every play," Abraham told Johnson, recalling that "getting your bell rung" was then a euphemism for what today would likely be called a concussion. "The coach would say, 'Don't be a sissy! Get back in there!' "

(Abraham taped his Amen Clinics appointments so he could relisten to them later, and he and Johnson gave NPR permission to use those recordings, so all quotes from Abraham and Johnson's meetings come from those taped conversations.)

In an interview later with NPR, Abraham said his SPECT scans had been validating.

"When you see that your personality has changed drastically and you are now doing things that are not characteristic of you," he said, "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, for me, wrapped it up."

After determining that head trauma is the likely cause of Abraham's symptoms, Johnson recommended multiple ways Abraham could make his brain healthier. Among them: an improved diet, more exercise, omega-3 fatty acids, hyperbaric oxygen therapy, yoga, meditation, prayer, a mindfulness app, neurofeedback, transcranial magnetic stimulation, the spice turmeric and a prescription stimulant to "wake your brain up," Johnson said.

Johnson also suggested a sleep study and possibly stem-cell therapy, noting that "I have a friend who runs a stem-cell company down in Florida and Mexico." He also recommended Memory Powder, a dietary supplement made by Amen's company that basically has the ingredients of a multivitamin. Amen describes it as "a spectacular multiple vitamin with a brain boost in a combination you're not going to find anywhere else." Memory Powder costs about $115 for roughly 6 ounces, and Johnson told Abraham it helps with "memory permanence."

Johnson told Abraham the Amen Clinics also sells a "really super-pure" version of turmeric. Some studies show turmeric could be beneficial for the brain. Turmeric is sold relatively inexpensively at most grocery stores, but the Amen Clinics' version, which the company says is substantially different from spice-rack turmeric, is priced at about $45 for a 60-capsule bottle.

Johnson also noted that a full regimen of hyperbaric oxygen therapy can take dozens of sessions. At a typical clinic, a single session can cost several hundred dollars, but Abraham was undeterred by the potential expense of the recommended treatments.

"I would be willing to pay any money to get somewhat of my life back," he told Johnson.

Amen's various business entities sell a wide range of products, from books, videos and supplements at his online retail store BrainMD to online courses at Amen University. Amen confirmed a previous media report that his company had been grossing about $20 million a year, although he declined to provide updated revenue figures to NPR.

"I've no interest in sharing those numbers," he added, "and I wish I hadn't done it then."

Hyman, of the Broad Institute, said of Amen's extensive product line: "In the academic psychiatry community, it's perceived as overselling, as just inappropriate."

But Amen and Johnson defend the company's sale of products and merchandise and say the Amen Clinics' dietary supplements cost more than grocery store versions because they are more pure, potent and easily absorbed by the body.

"You can't just get what we create at Costco," Amen said. "I mean, yes, you can get some of the ingredients, but not in the combinations we make."

He added: "I often say, 'If there's no margin, there's no mission,' and we're very proud of everything we sell."

"You have to make money in order to float the boat in order to be able to push the field forward," Johnson said in an interview with NPR. "Our mission is about changing the face of psychiatry."

In the world of CTE and psychiatry, Daniel Amen and his Amen Clinics are highly controversial, yet they've become a health care destination for many people who fear they have CTE and feel forsaken by mainstream medicine.

Johnson, the company's medical director, told NPR that "maybe 30% of the nonprofessional athletes that we see who are concerned about brain health as it relates to prior head injuries have specific questions about their CTE risk."

"So many CTE sufferers or people who think they have CTE need a place to go, and they need an empathetic, knowledgeable, experienced psychiatrist, and that's him," said Dr. Julian Bailes, a prominent neurosurgeon and CTE researcher at NorthShore University HealthSystem in Evanston, Ill., "so I admire the work he's done."

Hyman disagrees. "People who are desperate are vulnerable to snake oil," he said, "and this has all of the look and feel of a clinic that's preying on people's desperation."

What the Amen Clinics does may not be illegal, Hyman said, but it exploits frightened, vulnerable people and regulatory loopholes, including that dietary supplements, unlike drugs, are not reviewed or approved by the FDA based on their safety and effectiveness.

Referring to the lengthy summary reports that patients of the Amen Clinics receive at their end of their consultations, Barr, of NYU, said: "Our group considers it kind of a joke when we get those reports," adding that, based on his review of the published research, "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."

And while some of Amen's recommendations are likely to make patients feel better, Barr notes that they're common-sense tips for healthy living.

"It's not like he invented the Mediterranean diet," said Barr, who is part of a nationwide research project studying CTE. "Good life habits like sleep, good diet and exercise those are free" and, he added, shouldn't require an expensive consultation. "Unfortunately, in what I call the concussion industry, there are a lot of opportunists looking for the quick money," Barr said, "and people who are feeling hopeless will go for anything."

Many patients concerned they have CTE spend time and money in the brain health industry on questionable treatments for a disease that has no approved remedies, from chelation therapy to plasma infusions to overseas stem-cell therapy. "But equally as problematic," Hyman said, "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. Furthermore, Amen said, diagnosing depression, which the Amen Clinics does, is just the beginning. Many medical practitioners, he said, are too quick to prescribe antidepressants without also trying to identify and treat the cause of that depression which, he noted, could range from grief to a hormone deficiency to incipient CTE due to head injuries.

Amen said he and his team of doctors will suggest almost any treatment if they think it might help, from medicine to marital therapy. By the time many patients arrive at the Amen Clinics, he noted, they have consulted with multiple doctors, received multiple diagnoses and tried multiple medications, all to no avail.

"They often say, 'You are my last hope,' " he said.

Amen is well aware of his reputation in many medical circles. "A long time ago, I just stopped listening to the haters," Amen added. "And the fact that standard medicine doesn't love me well, I don't much love them. So it's sort of fair."

Private companies such as the Amen Clinics are only part of a sprawling brain health industry. It also includes a vast array of minimally regulated dietary supplements boasting brain-boosting qualities.

Memory Powder, for example, is labeled as a "powerful brain nutraceutical" and described as "our most advanced memory-directed supplement formula that you can drink! Just one glass daily is all it takes to fuel your brain with crucial vitamins and minerals to help you feel energized, focused, and mentally sharp all day long."

Historically, a key target audience for supplement manufacturers has been anyone frightened of developing Alzheimer's disease. CTE anxieties have broadened that potential customer base.

"There are people who are making a lot of money off of individuals' concerns about their brain health," said Dr. Joanna Hellmuth, a neurologist at the University of California, San Francisco's Memory and Aging Center. Due to lax regulation, she added, "there are supplement manufacturers who are legally able to make very dubious claims."

The FDA regulates dietary supplements and their ingredients as foods, not as drugs. Because of that distinction, the FDA does not review or approve dietary supplements based on their safety or effectiveness. Instead, manufacturers and distributors are responsible for evaluating the safety and efficacy of their products.

As a result, dietary supplements do not need FDA approval before they are marketed. Once they reach the market, the FDA can take regulatory action if it determines they are adulterated, misbranded or mislabeled. An example of mislabeling is promoting a dietary supplement as able to treat, prevent or cure a specific disease, since only drugs can make such claims.

In recent years, the FDA and Federal Trade Commission (FTC) have tried to strengthen their regulation of dietary supplements and crack down more aggressively on alleged bad actors.

The FTC and New York attorney general, for example, sued the makers of the widely advertised dietary supplement Prevagen over alleged false claims that it improves memory and brain function. The company that makes Prevagen has denied the allegations and called the case "another example of government overreach."

Another brain health supplement, Neuriva, which claims to help "fuel focus, accuracy, memory, literacy, learning and concentration," agreed to settle a class-action lawsuit alleging deceptive advertising, but admits no wrongdoing.

Yet with the FDA estimating that at least 50,000 types of dietary supplements are on the market, chasing individual offenders is a futile game of whack-a-mole for regulators.

Hellmuth, of UCSF, who co-authored a 2019 paper titled "The Rise of Pseudomedicine for Dementia and Brain Health," noted that "there are people who are spending, if not hundreds of dollars a month, thousands of dollars for particular interventions or studies or tests that are not scientifically backed," and said her research was motivated by a "sense of despair."

"It's already heartbreaking to see someone with Alzheimer's disease or CTE," Hellmuth said, "so I think 'despair' is the right word to describe seeing someone swoop in and make money off of people's vulnerable state and their hope for the situation to be made better."

Further complicating the brain health landscape and making it hard for patients to know where to place their trust, some medical professionals can benefit financially from the treatments they recommend.

Dr. Julian Bailes, the NorthShore University HealthSystem neurosurgeon who got a taste of Hollywood fame when he was portrayed by Alec Baldwin in the movie Concussion has fielded criticism for having had financial stakes in brain health products.

An expert in brain injury, a former team physician for the Pittsburgh Steelers and a vocal advocate for player safety, Bailes helped develop a dietary supplement called Brain Armor that is marketed as being "designed for the sole purpose of building strong, healthy brains." Its primary ingredients are omega-3 fatty acids, which some research suggests could help with brain health and brain injury recovery.

At its online store, Brain Armor offers products ranging from $14.99 for 15 single-serve sticks of Gut Brain Formula to $649.99 for 250 servings of Pro Brain Nutrient Formula, which is labeled as "formulated for pro athlete brain health" and comes in a lime-mango-flavored "vegan liquid concentrate."

Another version of Brain Armor is labeled as "formulated for youth brain health" and says it can "specifically meet the needs of young students and athletes."

But critics of Brain Armor's past advertising including former Sen. Claire McCaskill, who while in office investigated supplements claiming to stave off cognitive decline say it came dangerously close to making unfounded health claims.

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Everyday people fear they have CTE. A dubious market has sprung up to treat them - ideastream