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Evidence of brain damage, but sports associations look away

Ex-athletes and their loved ones want to know if their sport has caused them brain damage. The lack of answers is no coincidence, according to research by the NRC. Important international sports associations, such as FIFA, have a strong influence on international scientific research. Critical publications are being ignored and scientists say their work has been frustrated.

In a living room in Haarlem the dining table overflows with photos. It is laden with dozens of images of Piet Huijg, who in the 1970s and 80s played close to 350 matches for professional soccer club, HFC Haarlem. This isn’t even close to the number of photos that Mary Huijg, the widow of the soccer player who died last year, has kept of him. These are only the photos where Piet Huijg heads the ball.

Huijg, almost two meters or, 6’7 inches tall, headed the ball ‘remarkably often’, says his wife. He would repeatedly come home from games and practices with a bloodied face. Once he even came home with a black eye. Huijg’s daughter Kristel: “When I was a young girl, my father often took me to the garden to practice headers. Sometimes 30 times in a row.”

Mary Huijg first noticed that her husband was forgetting words. He was in his late fifties then, but suddenly couldn’t remember what a magnifying glass was when they saw one in a museum. His sense of humor disappeared, his gaze went absent, he isolated himself.

In 2012 he was diagnosed first, with Alzheimer’s disease. After more extensive research, the diagnosis was changed to semantic dementia. Mary Huijg walked out of the hospital crying. Piet, who was only 61 years old, instantly forgot the result: “What did that doctor say, something with an A?”

Piet Huijg died seven years later after three years in a nursing home. He could no longer speak, had to be helped to use the bathroom, couldn’t understand the television and often cried because he didn’t understand what was wrong with him.

How had this happened to Piet? Mary had always hoped to find out. Even more so since she and her daughter had seen the film Concussion. The film, starring Will Smith, presents the true story of the doctors who discovered that collisions, such as tackles, in American football could lead to brain damage and early dementia. Doctors were opposed by the National Football League (NFL), which did not want the sport associated with brain injury.

Mary Huijg: “After I saw the film, I had so many questions. Did something similar happen to Piet? Had he developed dementia from all the heading, from the impact? I’ve never gotten any answers.”

Mary and Kristel Huijg could not have known that thousands of ex-athletes and their loved ones around the world have exactly the same questions. Nor, that sports associations are helping to ensure those questions go unanswered.

An investigation by the NRC, based on conversations with twenty sources, access to various confidential email exchanges and review of dozens of scientific studies, shows that a number of the most important sports federations and associations in the world have a strong influence on international scientific research into brain damage in sports. These include FIFA World Football Association, the American National Hockey League (NHL) and National Football League (NFL) – all sports associations with billions in turnover.

The dominant story surrounding brain damage and sport is also the one that best suits the sports associations. Namely: there is no conclusive evidence that sports cause brain damage. How this stance ignores a large number of scientific studies to the contrary, brings to mind critics of the tobacco lobby. The tobacco industry managed for years, partly by employing its own scientists, to cast doubt on the health risks of smoking.

Today, many scientists who conduct critical research into brain damage in sports, in the same way, find that they are getting nowhere. It keeps coming back to three words reminiscent of the cigarette lobby: deny, ignore, frustrate.

The corpse with rotten teeth

A corpse with rotten teeth. That’s where it began. On an autopsy table in Pittsburgh, Pennsylvania lie the remains of Mike Webster, a famous American football player who won the Super Bowl four times. He had made it to age fifty, but his last years had been unimaginable for a former pro-footballer. Webster was homeless when he died and had begun behaving strangely in the years before. He would try to relieve his unrelenting back pain by zapping himself with a taser gun. Looking for a reason for his behavior, his family asked that a pathological exam be done on his brain after his death.

In the fall of 2002, pathologist Bennet Omalu found an answer. He and colleagues described the condition as Chronic Traumatic Encephalopathy (CTE), a brain disorder caused by repeated heavy blows to the head such as impact during tackles in American football. The disease often has the same effect as dementia, sometimes with serious psychological problems and a steep cognitive decline.

The discovery led to a book and then the feature film Concussion – which the Huijg family had seen. But above all, it led to an expansion of scientific research in the field. Much evidence has subsequently been discovered about brain damage in athletes.

The condition has now been found in the brains of hundreds of deceased football players as well as in those of soccer players, ice hockey players and horse racing jockeys. The blows that athletes suffer during their career are the only known and identifiable cause so far. The Centers for Disease Control and Prevention (CDC), a leading research institute in the United States, also states that sport is a major risk factor for developing the disease.

Being associated with brain damage could signal a death knell for some sports associations. When Muhammad Ali, the greatest boxer of all time, contracted Parkinson’s disease and a scientific link was made to his boxing career, there were even calls from doctors and influential medical institutions to abolish the sport.

Using science

In recent decades, the major sports associations have themselves begun to play a role in brain damage research. Since 2001, they have been paying for meetings of a group of scientists to make ‘recommendations’ for ‘improving the safety and health’ of athletes who sustain brain injuries. The group has acquired great influence over the years and thus plays a decisive role in the story that sports associations communicate about brain damage.

It’s called the ‘Concussion in Sports Group’, a collection of over thirty scientists, mostly elderly men, who meet once every four years, in places such as FIFA’s lavish headquarters in Zurich, Switzerland. The Football Association is one of the financiers of their meetings, as is the International Ice Hockey Association and the International Olympic Committee (IOC) along with other large sports associations.

Nearly all of the members work for major sports associations. There are doctors from the NFL and NHL, as well as, team doctors. There are scientists, who receive millions in research funding from sports associations such as the NFL, including Richard Ellenbogen, the founder of an American university-based sports institute that was co-funded by the NFL, or scientist Kevin Guskiewicz, who acted as an expert witness in a lawsuit on behalf of the NHL, and who has received about twenty million dollars (seventeen million euros) in research money from the NFL.

Of the 36 scientists who attended the last meeting in 2016 (this year’s meeting was suspended because of Covid-19), 32 did permanent or temporary work for sports federations or associations – mostly paid, according to the Canadian television channel, CBC News.

Scientists are not directly paid for their work in the Concussion in Sports Group, but critics – even within the group – say their judgment is being influenced. Who would go against the interests of an employer like the NFL? “A lot of money goes from the sports associations to members of our group. It has become increasingly clear to me that professional sports teams and organizations have too much influence,” said one member of the group who wished to remain anonymous.

In my opinion, large sports associations do not want a real investigation into the dangers, because they know what they will discover

Robert Cantu neurologist

The group has three leaders who organize the meetings and extend invites: Czech, Jiri Dvorak, who was FIFA’s Chief Medical Officer for more than twenty years. Australian neurologist Paul McCrory, who is a consultant for various sports associations and acted as an expert witness for the NHL in a lawsuit. And, the head of the medical committee of the same sports association, Willem Meeuwisse, a Canadian.

Since the last meeting, a Dutchman has joined the group: Pieter Vos, a neurologist. He once published with Dvorak and knows McCrory well. When they met at a convention a few years ago, McCrory invited him to join the group of experts.

Vos was a bit surprised. Although he has expertise in brain trauma and concussions, he has never done anything with sports. “I thought it was a great opportunity to participate. The initiative comes from the sports federations, but to my knowledge, it is emphatically independent. In my view, guaranteeing the safety of the athletes is truly the goal,” says Vos.

Vos joined a highly influential group. After each conference, the Concussion in Sports Group writes a joint statement that is seen by scientists and sports doctors as ‘the Bible’ for head injuries in sports. They have developed guidelines for sports doctors, which explain what to do if a player gets a head injury on the field. Sports federations, associations and doctors follow these guidelines. For example, it is no longer acceptable to send a player who has been knocked out, back on the field. With their directives, this group of scientists determines what happens on thousands of playing fields around the world.

Robert Cantu, a neurologist from the Boston School of Medicine, has been with the group since the first meeting in 2001. It started ambitiously, according to Cantu. Strong protocols were written for sports doctors, there was intense discussion. But as evidence began to mount that certain sports can cause long-term brain damage, the group behaved differently, he said.

Cantu, a cheerful man with reddish hair, himself became increasingly critical in his thinking about brain injury and sport. He wrote a book in 2013 - Concussion and Our Kids - in which he advocates a ban for children on body checks in ice hockey and tackles in American football. “In my opinion, large sports associations do not want a real investigation into the dangers, because they know what they will discover. Nobody wants their sport to be associated with brain injuries,” he tells the NRC.

Cantu says that he is only still a member of the group because they make some helpful decisions, such as the protocols for head injuries, which sports doctors follow.

Cantu also co-founded the CTE-centre at Boston University, which has examined the brains of more than 600 deceased football players since 2008. Eighty percent of them turned out to have the brain disease, CTE, that can lead to dementia. In the brains of former top division NFL players – they take harder blows and train more often – the number was 99 percent. The brains were voluntarily donated by family, which can distort the percentage. Despite this, the numbers were shocking, according to the researchers.

Brain damage has since been discussed in the Concussion in Sports Group, but scientists continue to repeat in their ‘Bible’ that there’s not enough conclusive evidence that sports can lead to it. Jiri Dvorak, the former FIFA physician, writes to the NRC that the group has reached the conclusion through a “structured, scientific and transparent” process. Several members of his own group now contradict this to the NRC. The statements that the ‘Bible’ is based on are in fact written behind closed doors, where criticism is carefully avoided.

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Evidence ignored

There, in private sessions of the Concussion Group, key members determine what part of the information about brain damage in sports they want to publicize.

Several scientists involved have alerted the NRC to what they consider a tactic by the group to ignore thousands of publications, including critical ones, about brain damage and its relationship to certain sports.

At the group’s last meeting in 2016, there were more than 3,800 publications available on the long-term consequences of head trauma in sports, such as CTE. Hidden in an “additional publication” it can be read that the group has actually reviewed only 47 publications. The rest do not meet the group’s strict ‘inclusion criteria’.

For instance, the group scarcely looks at studies that focus on one specific example (called ‘case reports’), the kind of research that was used on the brain of ex-football player Mike Webster. Much pathological research, the only way to find the brain disease CTE, is thus sidelined. Research with animal experiments is also mostly ignored. Animal research is crucial because it can quickly provide clues as to what repeated blows to the head do to the brain. If, for example, a mouse gets brain damage after (simulated) headers, this could be a reason to repeat the study in humans. Two of the most important research areas are thereby largely ignored by the Concussion in Sports Group.

The American brain surgeon Robert Cantu, himself one of the few members of the group that actually conducts research into athletes’ brains, confirms its method of not reviewing certain research. He is critical of it: “By eliminating so many publications that point to the danger of repetitive head trauma in sport, one might never arrive at the conclusion that hits to the head in ice hockey, tackles in football, or heading of soccer balls are harmful and may lead to later life cognitive, behavorial and mood problems. I am convinced that we should be concerned and that we should do these sports more safely.”

The group’s practice presents an image to the outside world: esteemed scientists have examined the matter thoroughly and have come to the conclusion that it cannot be proven that certain sports lead to brain damage.

I could go in on one condition: I had to keep my mouth shut

Chris Nowinski neuroscientist

Chris Nowinski, a neuroscientist who assists ex-athletes who have brain damage, was once invited to attend the open portion of a Concussion Group meeting. Nowinski retired as a professional wrestler after suffering severe headaches. When he arrived at the conference building (FIFA headquarters), he was told he was not on the guest list, he said. “They made me wait an hour. Then someone came up to me and said I could go in. On one condition: I had to keep my mouth shut,” says Nowinski. „Then it became clear to me that the group is not open to criticism.” Nowinski is one of the scientists who compares the attitude of sports associations to that of the tobacco lobby. “There, too, were always scientists, sponsored by the manufacturers, who said: it is not 100 percent certain that smoking can cause lung cancer. This, until that statement was no longer tenable,” he says.

The Concussion in Sports Group votes democratically on the content of the guidelines they publish. But it is the three leaders, Dvorak, Meeuwisse and McCrory, who decide who can attend the private session. This leaves the possibility that the result of the vote could be more or less predetermined.

American football players are still allowed to tackle at speeds with g-forces equivalent to a car crash. Ice hockey players are still allowed to pound each other against the boards, and, in soccer, few have thought of measures to prevent potential damage from heading the ball. However, responding to the NRC, a FIFA spokesperson recently stated that the organization is planning to do a trial with ‘additional permanent substitutions’ after a player suffers a head injury.

The scientists in the Concussion in Sports Group aren’t the only ones involved with researching brain damage in sports. In Helmond (the Netherlands), Boston (United States) and Melbourne (Australia), among others, much research has been done in recent decades into the consequences of heading soccer balls or tackling in football. Scientists involved tell the NRC about unexpected meetings with members of the Concussion Group and what happened to them when they wanted to produce independent publications that were critical.

Blocked research

Large piles of paper are stacked on the desk of neuropsychologist Erik Matser at his office in Helmond, the Netherlands. In the 1990s, Matser researched brain damage in sports. First at Cornell University in New York, where he worked under the famous physician Barry Jordan – who was treating boxer Muhammad Ali. Jordan was one of the scientists who found indications that the many blows to the head boxers sustain can cause them to develop brain diseases, such as Parkinson’s, which Ali had, or dementia.

Matser repeated the research among soccer players. In his 2000 thesis, for which he studied 81 players, he writes that collisions, or impacts, and the heading of balls can lead to brain damage. It was the first scientific indication in the world that heading could be harmful.

Matser wanted to further the investigation at that time. He specifically wanted to know whether a certain protein (s-100b) is released in the brain when balls are headed. That could be an indication of brain damage. Matser says he had submitted a research proposal to Erasmus University in Rotterdam, where he was a part-time lecturer, when he received a call from Jiri Dvorak, formerly of FIFA, later known as a leader of the Concussion Group, who wanted to meet.

They met twice, Matser says. During one of the two meetings Dvorak wanted to see his research proposal. Unusual, according to Matser, since it contained preliminary results and also the research method. But they still gave Dvorak the documents from their research group. “We should never have done that,” Matser says now.

Three months after the visit, Matser received another call from Dvorak. The message: we have already researched the protein ourselves. The result: after heading there is indeed a slightly higher dose of the protein in the brain, but it decreases quickly. In addition, Dvorak wrote in his research paper that the protein ‘may not be the ideal marker for brain injury.’

Matser: “I couldn’t believe it. Our initial results were much more alarming. But with this, Dvorak cut me off. Afterwards I had enormous difficulty getting research funding because the research had already been done and it also appeared as if the method was debatable. Dvorak said nothing about his research when we spoke. It felt as if he had misused my work, though I can’t prove it.”

Shortly afterwards Matser stopped his research. His temporary contract in Rotterdam expired. For years nearly no one researched the subject in Europe.

Matser now has his own practice after working at major soccer clubs such as Chelsea FC in London. “I think we could have found out a lot more about brain damage in sports back then. It feels like FIFA defused me by using one of its own researchers and bringing an important study to a halt,” says Matser. In response, Dvorak says his research had nothing to do with his encounters with Matser and that he had been working on it for some time.

The Helmond neuropsychologist never mentioned his experience with FIFA before. Now he warns others. “Beware of powerful sports associations. They will try to stop you. Don’t be naive like me. Protect your research,” he says.

Beware of powerful sports associations. They will try to stop you

Erik Matser neuropsychologist

Erik Matser sees that sports associations are also trying to thwart fellow scientists who are critical in their research in other ways. One key manner: damage to their reputations.

It’s similar to the way that Benett Omalu, the pathologist who examined Mike Webster’s brain and described the brain disease CTE for the first time was treated. Omalu was belittled, intimidated and ignored by the NFL, according to the book, Concussion, from which the film was made. His research methods were cast in a negative light, his reputation tarnished.

Then there is this.

In 2016, in a recorded phone call, an NFL physician tried to prevent research funding from being allocated to a Boston scientist who has extensive knowledge of brain damage in sports. The NFL doctor accused the scientist, among other things, of „not being independent”, according to a US Congressional investigation into the matter. It was part of an effort by the NFL to influence important research on brain damage, according to the investigation. Later, the NFL defended its physician, who is also a member of the Concussion in Sports Group, in a statement. Neurologist Alan Sills, the medical chief for the NFL, refused to comment on questions from the NRC about the matter. Sills did say that the NFL „puts the safety of athletes first,” that it invests large amounts of money in research into brain damage and that „the scientific community must work together to find answers.”

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Silenced voice

Australian brain scientist Alan Pearce was given the opportunity in 2016 to examine ex-Australian Rules Football players for brain damage. He was delighted with the chance to do such a study. In retrospect he says he faced overwhelming opposition. His research was thwarted, his funding dried up.

Pearce signed a research agreement with the Australian Football League (AFL) in 2016 for nearly 37,000 euros, according to the agreement in possession of the NRC.

Soon after, the scientist received an email from Paul McCrory, the neurologist who is one of the leaders of the Concussion in Sports Group. It stated that he may want to ‘work together’ in the future. They began to meet regularly for coffee at the University of Melbourne campus.

“Paul seems friendly, but everyone knows that he has a lot of power and he makes you feel it. He kept telling me that he had contacts, that he could get a lot of research money, that he could help me. He had one condition: I was never allowed to talk to the media. He didn’t trust them,” says Pearce.

Pearce didn’t heed the warning. He worked on a television broadcast for ABC News, in Australia about the investigation he was going to do for the AFL – an investigation that didn’t involve McCrory.

Shortly after the broadcast, Pearce received an email from McCrory. He mentioned the contract that Pearce had with the AFL. According to McCrory, it stated that he was not allowed to speak with the media. „You have to fix this,” McCrory wrote. Pearce was „baffled,” he says. Why was McCrory referring to details of his contract with the AFL?

Directly thereafter Pearce had to leave the University of Melbourne where he did his research. His department manager emailed that he no longer had “senior staff support.” He should do his research at the Florey Institute, she suggested. That was the institution where McCrory worked.

McCrory then took over contact with the AFL. He promised Pearce that he would make sure it turned out okay. But it didn’t. Pearce didn’t get a contract with the Florey Institute. They never drank coffee together again.

Despite the promise by the AFL, according to Pearce, the association wouldn’t send him players to investigate for his brain research. He kept asking, but only shortly before his research contract expired, did he receive players from the AFL. By then there was not enough time for proper findings. The results were never published.

Pearce: “My research was extinguished.”

Alan Pearce however, unlike Erik Matser at the time, decided to continue with his brain research on athletes. This year he published a study, a case report, he conducted on the brain of a deceased Australian Rules football player.

He has fallen “out of favor” with the AFL and other sports associations, especially after an article was published on his experience with the organization and McCrory in the Australian magazine, The Monthly.

„My funds now come from municipal health services and foundations concerned about brain damage in sports,” Pearce said. „But I have to scrape together money to work five days a week.”

Ignored by the associations

Less than an hour’s drive from Glasgow, Scotland, the Dutch neuropsychologist Magdalena Ietswaart works at the University of Stirling. She has 25 years of experience in the research field and she recognizes, at least in part, the pattern of denying, ignoring and frustrating described by fellow scientists. She points to a fourth form: the preference of sports associations for their own researchers.

In 2016, Ietswaart published a study that showed that players had temporarily disrupted brain function immediately following the heading of twenty soccer balls. They also showed a reduced memory.

When the BBC aired a documentary a year later in which Alan Shearer, all-time top scorer in England’s Premier League, had his brain tested by Ietswaart’s research group, the results of heading became a national debate in the UK.

In the same month that the documentary was broadcast, the medical committee of the European Football Association UEFA met in Nyon, Switzerland. The committee asked whether heading was harmful and requested scientists to submit a research proposal. Two questions needed to be answered: how often does heading actually take place? And, more importantly, what effect does it have on the brain?

National soccer associations, such as the Dutch KNVB, have been advising trainers for some time to limit heading

But then UEFA decided that the main question – how harmful is heading to the brain – would no longer be explored. ” UEFA has decided not to proceed for the time being with the second part of the research project, looking at the effect of heading on the structure and function of the brain,” says a letter which the NRC has seen from the association to at least one university that had applied.

To answer the first question – how often do soccer players head? – UEFA assigned the research groups of the chairman and vice-chairman of their own medical committee. UEFA has not responded to a request from the NRC for an explanation.

Magdalena Ietswaart had also submitted a research proposal but was rejected. “The fact that UEFA does not accept the offer of independent researchers to investigate on a scientific basis what heading does to the brain is a conscious choice by the association. If they don’t accept such an offer, they can always say: we didn’t know.”

She sees that reflex elsewhere, too. Other associations, such as that of international rugby, also rejected proposals to have her group investigate brain injuries.

Last summer, UEFA came up with a new guideline after its own doctors’ research into how often heading occurs. Its advice: youth players should do fewer headers in training and the neck muscles should be better conditioned.

This guidance has been received positively by the press and the public. But in reality, national soccer associations, such as the Dutch KNVB, have been advising trainers for some time to limit heading. The research that could provide real answers into the effect of headers on the brain, and therefore their safety, has still never gotten off the ground.

‘More research needed’

HFC Haarlem soccer veteran Piet Huijg was buried last year. Blood was sampled from him, but his brain was never investigated. The doctors sometimes asked if Huijg wanted to make his brain available for research. But he didn’t understand the question, says his widow Mary. “He said ‘no’ to everything you asked. Also, when they asked about the research.”

She will have to accept that she will never find out whether the headers made her husband sick. She thinks it’s important that more research be done into the consequences of heading on the brain.

Piet Huijg never was able to make the connection between his illness and his many headers. When the former defender for HFC Haarlem died, he hadn’t been able to speak for six months. Before then he would sometimes point to his head and say: “It’s not good, it’s not good.”

For questions or information: onderzoek@nrc.nl

(Translation by Sara Palmbush)

 

Rebuttal
‘Head injuries are a top priority’

The Concussion in Sports Group
Neurologist Jiri Dvorak writes, on behalf of the Concussion in Sports Group, that the group’s views are shaped by a „varied” reflection of scientists, „including people who understand long-term degenerative diseases.” The next meeting, Dvorak promises, will invite more scientists who understand the brain disease CTE - which can take the form of dementia.
Dvorak writes that „many [in the group] are not involved with sports organizations,” that the discussions of the CISG constitute a „structured, scientific and transparent process,” and that the CISG „operates independently of any institution.”
Dvorak does not want to answer questions about the group’s ignoring critical scientific publications, which a member of his own group criticizes in the NRC. He does write that the scientists of the CISG have chosen not to write „a dissenting or minority view”.
Dvorak does not deny that he met neuropsychologist Erik Matser and took along the research proposal in which Matser writes about his research into a protein that could be used to detect brain damage. According to Dvorak, his research is separate from that. Dvorak adds in his email various studies he has done into the protein and the impact of headers. „I can assure you that I have never done my job under pressure and that I have published all the results.”
Paul McCrory and Willem Meeuwisse, leaders of the Concussion in Sports Group, have not responded to extensive questionnaires. Jiri Dvorak’s replies were also sent on their behalf.

National Football League (NFL)
Neurologist Alan Sills, the NFL’s medical director, finds it „clear that there are long-term health risks from repeated head injuries, especially if not treated properly.” He also believes that „a lot of attention should be paid” to research into head injuries in sports and that researchers „should work together” to answer „important questions about CTE”. Sills points out that the NFL has spent $40 million on research into brain damage. He didn’t answer questions about the investigation that found senior NFL health officials tried to keep that money away from a critical Boston CTE researcher. According to Sills, the allocation of the money has been „independent and transparent”. Sills says the NFL has already done a lot to improve player safety, such as changing the rules to allow tackles to do less damage to the brain. „But in the end we don’t have all the answers,” said Sills.

FIFA
A FIFA spokesperson said that for medical director Andrew Massey, a successor to Jiri Dvorak, head injuries and their consequences are “a top priority”. FIFA promises to fund scientific research into long-term brain damage in football players. The Concussion in Sports Group, of which Massey is a member, does a „good job” of „analyzing and discussing” concussions, according to FIFA. However, FIFA is planning to establish their own research group into head trauma – which can be seen as an indication that FIFA does not any longer want to trust fully on the Concussion in Sports Group.

IOC
The International Olympic Committee, one of the funders of the Concussion in Sports Group, says through a spokesperson that „protecting the health of athletes” is the only goal of the initiators. According to the IOC, the scientists involved were chosen for their expertise, not for positions they hold in sports federations. „Long-term research into brain injuries has not been ignored,” said the spokesman. Regarding the group’s exclusion of „case studies”, like much pathological research, the spokesperson said these types of studies „have a very low level of evidence and a high risk of impurity.” The IOC does not answer questions about the evidence for the brain disease CTE in athletes. The IOC is paying for and will continue to pay for concussion research, the spokesman said.

AFL and UEFA
The Australian Football League has not responded to questions from the NRC, nor has the European football association UEFA.