NFL Caregivers Blast CTE Study as Insulting,Dismissive

⁤ Updated June 20,2025
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BOSTON (AP) – Widows and caregivers of former‍ NFL players diagnosed with CTE are criticizing a recently published study. They say it insults and dismisses their experiences living with the degenerative brain disease linked to concussions and repeated head trauma.

In an open letter, wives, siblings, and children of these players state that the study, published in *Frontiers in psychology*, implies their struggles are due to “media hype” surrounding chronic traumatic encephalopathy (CTE), rather than the disease itself. They find ⁤the suggestion that caregiver concerns are “certain”⁢ due to “publicity” callous and offensive.

“The burden we experienced did not happen because we are women unable to differentiate between our lived experience and stories from TV or newspaper reports,” the letter⁤ states. “Our loved ones were⁤ giants in life; CTE robbed them of their futures,and robbed us of our futures with them. Please don’t also rob us of our dignity.”

Dr. Eleanor perfetto, a medical researcher and widow of former ⁤Steelers and Chargers end Ralph⁣ Wenzel,‍ spearheaded the response.Wenzel suffered from dementia and paranoia, losing his ability to speak, walk, and eat. He received his ‍initial cognitive impairment diagnosis in 1999, years before Mike ⁣WebsterS CTE diagnosis brought the disease into mainstream awareness.

“My own experience, it just gave a name to what I witnessed every day. It didn’t put it in my head,” Perfetto told The Associated Press. “It gave it a name. It didn’t change the symptoms.”

The‍ study surveyed 172 caregivers of current and former professional football players, asking⁤ if they believed their partner had CTE.Perfetto questioned the minimization of their experiences, noting that all respondents were women.

“Women run ⁣into that every day,” she said. “I don’t think ‍that’s the only factor. I think the motivation is ⁤to make it seem like this isn’t a real issue. It’s not a real disease. It’s something that people glommed on ⁢to as ‍they heard about it in the media.”

Hopes for ‍study ‘quickly turned to ‍disappointment’

The letter, titled ‍”NFL Caregivers to Harvard football Player health Study: Stop Insulting Us!” was posted online. It has garnered over 30 signatures, including family members of Hall of Famers Nick Buoniconti ⁤and Louis Creekmur.

while praising the study’s ‍examination of the impact on loved ones dealing with‍ mood⁤ swings, dementia, and depression associated with the disease, the letter criticizes what it considers unsupported speculation. one example cited is the study’s suggestion that “mainstream media presentations and high-profile cases related to those diagnosed postmortem with CTE may have raised concerns among living players about ⁣CTE.”

The letter calls these “insulting conclusions that were not backed⁤ by study evidence.”

“Rather than exploring the lived experiences of partners of former athletes, they instead implied the partners’ anxiety was caused by watching the news … as if the media is to blame for the severe brain atrophy caused by CTE in our loved ones,” they wrote.

Study authors Rachel⁤ Grashow and Alicia Whittington stated that⁤ their research aims to support NFL families,especially‍ those caring for⁢ affected players or grieving lost loved ones.

“We regret if any ‍of our work suggested or else,” they said. “Our intent was ⁤not to minimize CTE – ⁣a disease that is far too ⁣real – but to point out‍ that heightened attention to this condition can intensify existing concerns, and that symptoms attributed to CTE may, in some cases, stem from other treatable conditions that also deserve recognition⁣ and care.”

Perfetto fears the study is ⁢part of a trend to downplay the risks of playing football. The‍ NFL acknowledged a link between football and CTE ⁤in 2016 and later agreed to a settlement covering 20,000 retired players, providing up to $4 ⁤million for those who died with the disease.CTE can currently only ⁣be diagnosed posthumously through brain tissue examination.

“Why would a researcher ⁢jump to ‘the media’‍ when⁤ trying to draw conclusions out of their data, when they didn’t collect ⁣any information about the ‍media,” Perfetto asked. “to me, as a researcher, you draw the implications from the results and you try to think of, practically, ‘Why you come to these conclusions? Why would you find these results?’ Well, how convenient is⁤ it to say that it was the media,‍ and it takes the NFL off the hook?”

‘By players, for players’

The caregivers study falls under the Football ⁣Players Health Study at Harvard University, a multifaceted effort focused on prevention, diagnostics, and treatment strategies for conditions affecting professional football players. While funded by the NFL Players Association, the website states that⁣ neither the union nor the league influences‍ the results or conclusions.

“The Football Players Health Study does not receive funding from the NFL and does not share⁢ any data with the NFL,” a spokesperson said.

Previous research, involving over 4,700 ex-players, covers‍ topics from sleep problems to arthritis, with a important focus on brain injuries ⁤and CTE. CTE has been linked to ‍contact sports,military ⁣combat,and other⁢ activities involving repetitive head trauma.

When Wenzel died with advanced CTE in 2012 at age 69, ‍he no ⁢longer recognized ⁣Perfetto and ⁢required assistance with daily tasks. “When he died, his brain had atrophied to 910 grams, about ⁣the size of the brain of a 1-year-old child,” the letter said.

Lionel “Little Train” James, a former Auburn and San Diego Chargers running ‍back, ⁢was diagnosed with dementia at 55 and CTE after his death at 59.

“Treatable conditions were not the reason Lionel went from being a loving husband and father to someone so easily agitated that his wife and children had to regularly restrain him from ⁤becoming violent after dodging‍ thrown ⁣objects,” the letter said. “They were not likely to be the driving force‍ behind his treatment-resistant depression, which contributed to alcoholism, multiple stays in ‍alcohol rehabilitation treatment centers, arrests, suicidal ideation, and ultimately, his commitment to a mental ⁣institution.”

Kesha James shared that she would disable her husband’s car to prevent him from driving drunk. She chose to share her story to remove the stigma associated with the players’ late-in-life behavior and the struggles of their caregivers.

“I have videos that people probably would not believe,” James said. “And I’ll be honest with you: It is nothing that I’m proud of.⁤ For the last three years I’ve been embarrassed. I’m just going public now because I do want to help bring awareness to this ⁢- ‍without bringing any shame to me and my kids – but just raise the awareness so that no other family can experience what I did.”

What’s next

Further research into CTE and its impact on both players and their families is crucial. Increased awareness and support for caregivers are also essential to address the challenges they face.