Head In­juries

The AFL is run­ning in­ter­fer­ence on the dam­age con­cus­sion causes

The Monthly (Australia) - - FRONT PAGE - by Wendy Carlisle

Last month, it was re­vealed that head in­jury–re­lated claims lodged by for­mer grid­iron play­ers against the US Na­tional Foot­ball League (NFL) were shoot­ing way ahead of pre­dic­tions. It was the lat­est twist in a story that be­gan in 2011, when 4500 re­tired play­ers brought a class ac­tion against the league, al­leg­ing it knew about the dan­gers of re­peated hits to the head but had con­cealed it. The play­ers’ class ac­tion had been fought largely on the claim that repet­i­tive head in­jury put play­ers at in­creased risk in re­la­tion to a num­ber of neu­rode­gen­er­a­tive dis­eases – not just the early de­men­tia dis­ease known as chronic trau­matic en­cephalopa­thy (CTE), which is a ma­jor con­cern but can still only be di­ag­nosed at post-mortem. The ac­tion was set­tled in 2013 when the NFL agreed to set aside a kitty of US$675 mil­lion in com­pen­sa­tion, al­beit on the ba­sis of no ad­mis­sion of guilt. In 2016, the NFL ad­mit­ted to the con­nec­tion between CTE and grid­iron for the first time. Now, barely a year af­ter US courts had signed off on the fi­nal de­tails of the set­tle­ment, play­ers’ claims re­lat­ing to neu­rode­gen­er­a­tive dis­or­ders like Parkin­son’s dis­ease and amy­otrophic lat­eral scle­ro­sis (ALS; known in Aus­tralia as mo­tor neu­rone dis­ease, or MNR) are triple what had been pre­dicted. If it seems re­mark­able that the is­sue that has threat­ened Amer­i­can foot­ball’s very ex­is­tence has barely raised its head in Aus­tralian Rules foot­ball, con­sider this: ac­cord­ing to Aus­tralian Foot­ball League con­cus­sion ex­pert Pro­fes­sor Paul McCrory, AFL play­ers have higher rates of con­cus­sion than NFL grid­iron play­ers. The Aus­tralian Foot­ball League is big busi­ness. The broad­cast rights deal for 2017–2022 was worth $2.5 bil­lion. Its 700 listed play­ers earn an av­er­age salary of more than $350,000. Aus­tralian Rules foot­ball is the na­tion’s big­gest spec­ta­tor sport, and its broad­cast ap­peal de­pends on the play­ers’ ath­leti­cism and the con­tact na­ture of the game. While the play­ers are taller, heav­ier, faster and fit­ter than they were a few decades ago, the AFL also has an obli­ga­tion to make the game safer. In re­cent years it has in­tro­duced more strin­gent rules de­signed to pro­tect the head, and heav­ier penal­ties for above-the-shoul­der con­tact. Un­der its con­cus­sion pro­to­col, a player must rest for 10 min­utes be­fore his club’s doc­tor con­ducts five min­utes of tests. Since 2014, play­ers di­ag­nosed with a con­cus­sion are not al­lowed to re­turn to play that day. Only play­ers whose symp­toms have dis­ap­peared can re­turn to play. The AFL’s of­fi­cial in­jury re­port from 2017 noted: Con­cus­sion rates re­main rel­a­tively sta­ble with ap­prox­i­mately seven in­juries per team per year (all di­ag­nosed con­cus­sions, not just those that cause missed matches). The in­ci­dence and preva­lence of con­cus­sions caus­ing matches to be missed ap­pears to have lev­elled off in 2017, al­though con­cus­sions con­tinue to be man­aged con­ser­va­tively. Even so, for­mer Syd­ney Swans club doc­tor Nathan Gibbs has called into question the AFL’s num­bers. “They’re not count­ing all of them,” he told me. Over a 14-year pe­riod, Gibbs sat on the side­lines, week in week out, “ob­ses­sively” count­ing con­cus­sions. His re­port, which was pub­lished last year, put the Swans’ con­cus­sion rate at two and a half times higher than the of­fi­cial AFL sta­tis­tics. Gibbs thought the num­bers might be un­der­re­ported not just be­cause of the play­ers but also be­cause of the doc­tors. Fines are im­posed on doc­tors for not bring­ing con­cussed play­ers off, espe­cially in the case of de­layed con­cus­sions. How­ever, the real story of con­cus­sion was buried deep in the num­bers of the AFL’s in­jury re­port. Eighty per cent of con­cussed play­ers were de­clared fit to play the fol­low­ing week, thus not miss­ing a game. Among those who did a miss a game, one quar­ter were play­ers who had al­ready been con­cussed that year, and they spent four times longer on the side­lines than play­ers who had in­jured their ham­strings, knees, shoul­ders and calves. There was an­other brew­ing is­sue: what to do with “the bump”? The bump, the hip’n’shoul­der, was one of the most sa­cred el­e­ments of the game. A bump, ap­plied legally, al­lowed a player to knock his op­po­nent off the ball. A se­ries of de­ci­sions by the AFL’s match re­view of­fi­cer had de­creed that bumps that had caused play­ers se­ri­ous con­cus­sion – from a head knock – could be le­gal. Af­ter West Coast’s Mark Le Cras was let off af­ter a bump that con­cussed Gold Coast’s Ben Ainsworth ear­lier this year, Gibbs was fu­ri­ous. “This is ridicu­lous,” he told The Daily Tele­graph. “The whole anti con­cus­sion move­ment is about pro­tect­ing the brain of con­tact sports ath­letes … And it leaves the AFL open to lit­i­ga­tion be­cause they have a rule in­ter­pre­ta­tion which in­creases the in­ci­dence of brain in­jury.” There is def­i­nitely a “dis­con­nect” in the way the bump is be­ing po­liced, for­mer Hawthorn player Jack Fitz­patrick told me. Fitz­patrick was forced into early re­tire­ment last year af­ter his ninth con­cus­sion. “It’s con­fus­ing and prob­a­bly not a great look if a player ends up in hos­pi­tal and that bump is de­clared le­gal.” Fitz­patrick said he was in favour of keep­ing the bump in the game, and “the AFL is try­ing to get it right”. The AFL has agreed that the risks of Alzheimer’s, Parkin­son’s, de­men­tia and ALS/MND are higher for those with brain in­juries, and that “play­ers are ed­u­cated about the risks”. As for the threat of chronic trau­matic en­cephalopa­thy, the AFL would only say it “ac­knowl­edges that head trauma in box­ing can be as­so­ci­ated with neu­rode­gen­er­a­tive dis­ease”. As an­other for­mer club doc­tor tells me, “Con­cus­sion is not good for busi­ness.” “Any sport­ing or­gan­i­sa­tion in the world would want con­cus­sion to go away. It’s a le­gal night­mare, so they want to make sure they treat it prop­erly when it hap­pens and they want to down­play it big time. And they want all their stats to show it’s not hap­pen­ing very of­ten.

“The irony is, con­cus­sion rates in con­tact sport are not go­ing down. It’s okay to go to a lot of trou­ble to treat them af­ter [the in­juries] have hap­pened, but it’s too late. The dam­age is done.” So when is it safe to go back on the field? Re­ports of AFL play­ers re­tir­ing early due to “on­go­ing is­sues with con­cus­sion” and on “doc­tors’ or­ders” keep com­ing. St Kilda star Koby Stevens is the lat­est, mak­ing his an­nounce­ment in July this year. The 27-year-old had suf­fered eight con­cus­sions in his ca­reer and his doc­tors told him not to risk an­other one. Brain scans now showed he had brain dam­age, and he ad­mit­ted that his penul­ti­mate con­cus­sion last year had “felt like a bomb had gone off”. “I’ve taken hits, come back from them strong,” he told Fox Footy, “but to have some­one say there’s been changes to my brain, and they can’t re­ally tell you what they are – they’re just there – it’s tough.” Bris­bane leg­end Jonathan Brown had a sim­i­lar story to tell when he quit af­ter se­ri­ous con­cus­sion in 2014. Brown had played 256 games for the Lions and won three pre­mier­ships, as well as the Robert Rose Award for most coura­geous player in 2007, 2008 and 2011.

Why were in­di­vid­ual play­ers’ con­cus­sions get­ting worse? And why were so many play­ers re­tir­ing from con­cus­sions?

“It’s be­come ev­i­dent af­ter my con­cus­sion last week,” he said at his farewell press con­fer­ence, “I don’t re­spond or bounce back like I used to from those hits. “I’ve had pretty strong med­i­cal ad­vice this week that it was in my best in­ter­est to stop.” The list of other play­ers who have taken their doc­tor’s ad­vice in re­cent years in­cludes Sam Blease, who re­tired in 2015 af­ter two se­ri­ous con­cus­sions, Matt Maguire, Leigh Adams, Sean Demp­ster, Her­i­tier Lu­mumba and Justin Clarke. Liam Picken and Ben Ja­cobs are also both out in­def­i­nitely, and Paddy McCartin was re­cently side­lined with his sev­enth con­cus­sion in four years. If the league’s con­cus­sion pro­to­cols were work­ing, why were so many play­ers re­turn­ing the fol­low­ing week to play? Why were in­di­vid­ual play­ers’ con­cus­sions get­ting worse? And why were so many play­ers re­tir­ing from con­cus­sions? There has been just one con­firmed case of the dreaded CTE in Aus­tralia. It was found in the brain of for­mer Manly rugby union break­away Barry “Tizza” Taylor, who died in 2013, aged 77. He had played 235 games for Manly. The symp­toms can take 20 to 30 years to man­i­fest: first me­mory prob­lems, and mood dis­or­ders, then be­havioural and cog­ni­tive dis­or­ders, and then death. In Tizza’s case, the dis­ease took more than 18 years to end his life. For Tizza, there was no cure or treat­ment, apart from a cock­tail of an­tipsy­chotics that calmed his de­mons enough for him to sit in his favourite chair and ask 40 times a day if the lights had been switched off. His doc­tors thought he had Alzheimer’s. The jour­ney to his di­ag­no­sis had been as swift as Tizza’s de­scent into de­men­tia had been slow. The day af­ter he died, fam­ily friend and jour­nal­ist Peter FitzSi­mons rang the fam­ily with his con­do­lences. Tizza had coached him in the Aus­tralian un­der-21s and then in the NSW team. Fitz re­layed a mes­sage from re­searchers in the United States: would the fam­ily agree to do­nate Tizza’s brain for CTE re­search? CTE can only be di­ag­nosed when the brain is fixed in formalde­hyde, sliced and ex­am­ined, when the truth is teased out by stains and high-pow­ered mi­cro­scopes. The Taylor fam­ily agreed, and one of the re­searchers at the CTE Cen­ter at Bos­ton Univer­sity later told Tizza’s son Steve that his fa­ther’s brain had one of the worst cases of CTE she’d ever seen. “I don’t know how your fa­ther was func­tion­ing on any level at all.” Steve knew that, in the end, his fa­ther was not func­tion­ing at all. Tizza was in his 50s when he started to get lost driv­ing around the block. Later the CTE spread to his tem­po­ral lobes, and then the area of the brain that con­trols emo­tion – the amyg­dala – prob­a­bly at the time he had to give up his coach­ing due to “be­havioural prob­lems”. Steve says that one day his fa­ther tried to punch the liv­ing day­lights out of him. “He had me up against the wall and I man­aged to wres­tle him to the ground and just hold him till it passed … I looked into his eyes and I thought, This is not my fa­ther.” And then the CTE would have spread deeper into his hip­pocam­pus, which is as­so­ci­ated with me­mory for­ma­tion and re­ten­tion. At the end, Steve asked him if he knew his own name. Tizza just looked blankly at him and shrugged. By the time of Tizza’s death, the CTE Cen­ter and other ma­jor re­search bod­ies were mak­ing clin­i­cal dis­cov­er­ies that rocked the world of con­tact sports. They were study­ing the brains of for­mer foot­ballers, and war vet­er­ans who had been ex­posed to what had pre­vi­ously been con­sid­ered mild head in­jury, and in a suc­ces­sion of im­por­tant re­search pa­pers found a strong link between repet­i­tive head in­jury and CTE. The then deputy di­rec­tor of the US Na­tional In­sti­tute of Neu­rode­gen­er­a­tive Dis­or­ders and Stroke,

Dr Wal­ter Koroshetz, stated in re­la­tion to ad­vanced CTE cases, “I don’t think there’s any wrig­gle room. It’s pretty clear this is due to head in­jury. Whether there are other things in­volved and where it starts, that’s hard to know, but I don’t think there’s any question that it’s re­lated to head in­jury.” Most of the re­search has been led by neu­ropathol­o­gist Dr Ann McKee of the CTE Cen­ter, whose work earned her a place in TIME mag­a­zine’s list of the world’s 100 most in­flu­en­tial peo­ple in 2018. In a 2017 study pub­lished in The Jour­nal of the Amer­i­can Med­i­cal As­so­ci­a­tion, McKee and fel­low re­searchers ex­am­ined the brains of 202 for­mer Amer­i­can foot­ball play­ers from all lev­els of the game. Nearly 88 per cent of the do­nated brains had the de­gen­er­a­tive brain dis­ease. It’s im­por­tant to note that there is an in­her­ent self-se­lec­tion bias in these re­sults, but, strik­ingly, by far the high­est in­ci­dence was in for­mer pro­fes­sional play­ers, those who had played and been hit the most: 110 out of 111 brains of those who played in the NFL had CTE. I met Steve Taylor in March at the launch of the Aus­tralian Sports Brain Bank at Syd­ney Univer­sity’s Brain and Mind Cen­tre. He’d come with fam­ily mem­bers to sup­port the es­tab­lish­ment of the first brain bank in Aus­tralia ded­i­cated to study­ing CTE in sports­peo­ple. Forty peo­ple have so far pledged their brains – among them for­mer NFL player Colin Scotts, rugby league star Ian Roberts, and for­mer Wal­laby Peter FitzSi­mons. Chris Nowin­ski, one of the pi­o­neers of the Sports Legacy In­sti­tute in Bos­ton (now the Con­cus­sion Legacy Foun­da­tion), had flown in for the open­ing, and he sketched for me what sci­ence knew about CTE, start­ing with box­ers in the early 1900s. At the time, box­ing was at the peak of its pop­u­lar­ity. If ever there was to be a live ex­per­i­ment on repet­i­tive head in­jury it would be in the box­ing ring. Vic­tory was de­clared on the ba­sis of a knock­out or a stand­ing count, and it wasn’t un­usual for box­ers to have hun­dreds of bouts in their ca­reers. In the late 1920s, Amer­i­can pathol­o­gist Har­ri­son Mart­land de­cided to in­ves­ti­gate the brains of for­mer box­ers, men who in later life suf­fered psy­chi­atric dis­tur­bances, cog­ni­tive im­pair­ments, and mood and gait dis­or­ders. Con­duct­ing lim­ited brain au­top­sies, Mart­land de­scribed the brain in­juries he found along­side the clin­i­cal symp­toms. He called it “punch drunk syn­drome”. By 2007 when Nowin­ski – a clean-cut, good-look­ing for­mer Ivy League foot­baller and world cham­pi­onship wrestler – de­cided to part­ner the Con­cus­sion Legacy Foun­da­tion with Bos­ton Univer­sity and Dr Ann McKee, they re­alised this was a truly ne­glected dis­ease. They could only find 45 cases of CTE in the med­i­cal lit­er­a­ture. Thirty-nine of them were re­lated to box­ers. A decade on, the idea of a sports brain bank had been ex­ported to Syd­ney Univer­sity’s Brain and Mind Cen­tre.

It was part­nered with the Royal Prince Al­fred Hos­pi­tal, which was closely in­volved with an ex­ist­ing brain bank for mul­ti­ple scle­ro­sis re­search, and a brain and tis­sue bank for brain tu­mours. The RPA’s head of neu­ropathol­ogy, As­so­ci­ate Pro­fes­sor Michael Buck­land, agreed to lead this new sports brain bank. “I’ve prob­a­bly looked at over a thou­sand brains in 10 years,” he said. “Read­ing all the pa­pers about CTE I thought to my­self, I haven’t seen this. “And then I started to think, I ac­tu­ally have never even been look­ing. You only see what you know about, and that’s one of the max­ims of neu­ropathol­ogy.” Buck­land’s first aim was to de­fine whether CTE is present in Aus­tralia. Even though it was the hottest is­sue in con­tact sports, none of the ma­jor codes sent any­one to the launch. In 2016, the Vic­to­rian Brain Bank at the Florey In­sti­tute of Neu­ro­science and Men­tal Health had an­nounced plans for a “con­cus­sion brain bank” for AFL foot­ballers. But as to its progress, nei­ther the Florey nor the AFL would say. How many foot­ballers had pledged their brains? How many brains were in the bank? The Florey was not “at lib­erty to dis­close how many brains had been pledged or re­ceived”. The AFL would not con­firm whether it had paid for any au­top­sies, but said it had con­trib­uted funds to the project. Chris Nowin­ski could only shrug. “Not ex­actly an ac­tive re­search pro­gram, is it?” he said. I have been fol­low­ing the story of con­cus­sion in sport since 2014, when I in­ves­ti­gated the AFL’s ap­proach to CTE for ABC Ra­dio Na­tional’s Back­ground Brief­ing. For­mer Syd­ney mid­fielder Jude Bolton told me then that he was ter­ri­fied of CTE. He had played 325 games for the Swans, and held the records for most tack­les in a ca­reer and the most tack­les in a game. Bolton told me he’d been con­cussed in the 2012 grand fi­nal, and his rec­ol­lec­tion of the fin­ish of one of the most thrilling games in AFL his­tory was patchy at best. He couldn’t re­mem­ber whether he fin­ished on the park or off. He had to check the tape. It was his grand­fa­ther who con­vinced him to give up the game af­ter that. “He said, ‘Well, you don’t want to be a drib­bling mess when you’re an old man.’” Bolton had seen his grand­mother slide into de­men­tia, and it was “hor­rific”. “I mean, we all saw what hap­pened out of the States,” he said, re­fer­ring to the CTE story. For­mer Mel­bourne player Shaun Smith, famed for his 1995 “Mark of the Cen­tury”, re­cently told me a sim­i­lar story. He said he’d been ex­pe­ri­enc­ing not just huge me­mory prob­lems but also anger is­sues. He’d put up his hand to join a pro­posed class ac­tion against the AFL along­side stars like Nicky Win­mar, John Barnes, John Plat­ten, and, ac­cord­ing to the Her­ald Sun, up to 70 other for­mer play­ers. Barnes, a pre­mier­ship ruck­man with Essendon, was di­ag­nosed with epilepsy six years ago and has ex­pe­ri­enced in­creased me­mory loss and anger is­sues. He be­lieves they’re all linked to his play­ing days. Four­time pre­mier­ship win­ner and Brown­low medal­list John Plat­ten, con­cussed 36 times in his ca­reer, was con­cerned that he may be ex­pe­ri­enc­ing the early stages of Alzheimer’s dis­ease. (“John went to hos­pi­tal 10 times for con­cus­sions and al­ways played the next week,” lead lawyer Greg Grif­fin told the media.) Bolton, who has sub­se­quently be­come an am­bas­sador for con­cus­sion aware­ness, told me he was con­fi­dent the AFL was do­ing the re­search into con­cus­sion that would pro­vide some answers. How­ever, the AFL’s con­cus­sion ex­perts have been among the most scep­ti­cal and openly de­ri­sive of any link between con­cus­sion and CTE, and even of the link between repet­i­tive head in­juries and neu­rode­gen­er­a­tive risk gen­er­ally. In 2013, when an­nounc­ing a con­cus­sion col­lab­o­ra­tion with the Florey In­sti­tute, the then deputy CEO of the AFL, Gil­lon McLach­lan, said, “There has been a lot of spec­u­la­tion about con­cus­sion and its longer-term ef­fects on play­ers, much of it aris­ing from the emer­gence of post-mortem di­ag­noses of chronic trau­matic en­cephalopa­thy [CTE] in for­mer NFL play­ers in the United States who had ap­par­ently been sub­ject to re­peated hits to the head dur­ing their ca­reers.” He ac­knowl­edged the con­cern of past and present AFL play­ers, and said this was the rea­son why the AFL had signed a “ground­break­ing sci­en­tific part­ner­ship” with the Florey In­sti­tute, to study con­cus­sion un­der the Florey um­brella. They were hop­ing to raise $3 mil­lion from third par­ties to kick­start it. The Florey an­nual re­port for 2015–16 said Pro­fes­sor Paul McCrory and his team were “start­ing to feel those flut­ters that ac­com­pany a ma­jor de­vel­op­ment”. They hoped to “pub­lish the sci­ence of con­cus­sion, con­clu­sively in the next cou­ple of years”. “Paul re­mains scep­ti­cal of the sim­plis­tic view that the num­ber of con­cus­sions suf­fered in a sport­ing ca­reer re­sults in long-term brain dam­age,” con­tin­ued the re­port. “It’s re­ally not a sci­en­tific state­ment,” he is quoted as saying. “It’s more of a be­lief sys­tem.” In­stead he and the Florey team were putting in place “sci­en­tific struc­tures” to in­ves­ti­gate con­cus­sion, and were, in the words in the re­port, “look­ing in­side the brain to pro­vide ev­i­dence-based proof on the im­pact of con­cus­sion – both at the point of the knock and over a per­son’s life­time”. But the third party the AFL hoped to at­tract – the NFL – wasn’t in­ter­ested. In­stead it was an­nounced that a more mod­est project would be funded from the pro­ceeds of player fines. By 2018 that amounted to $500,000, which was fund­ing a Trau­matic Brain In­jury Lab led by Pro­fes­sor McCrory with Hawthorn club doc­tor Michael Makdissi, also a mem­ber of the AFL con­cus­sion work­ing group. It was to run an MRI project of AFL play­ers who had been con­cussed, as well as work­ing on “long-term stud­ies into the im­pact of con­cus­sion on for­mer play­ers”,

which been an­nounced in 2012 as a fol­low-up to a study of con­cussed play­ers from the late ’80s and ’90s around which just one small re­search pa­per had been pub­lished, in 1996. As of Septem­ber 2018, the out­put has hardly been pro­lific. De­spite many prom­ises of re­search be­ing pub­lished soon, noth­ing has yet emerged. Aged in his late 50s, Pro­fes­sor Paul McCrory is boy­ishlook­ing and softly spo­ken. It’s an ap­pear­ance that be­lies his au­thor­ity in the world of sports medicine. The for­mer Colling­wood club doc­tor is the chair of the global or­gan­i­sa­tion that hosts the bian­nual In­ter­na­tional Con­fer­ence on Con­cus­sion in Sport. It’s a group that was orig­i­nally brought to­gether in 2001 by the In­ter­na­tional Ice Hockey Fed­er­a­tion, the Fed­er­a­tion In­ter­na­tionale de Foot­ball As­so­ci­a­tion Med­i­cal As­sess­ment and Re­search Cen­tre, and the In­ter­na­tional Olympic Com­mit­tee Med­i­cal Com­mis­sion to ad­vise on how to man­age the is­sue of safe re­turn to play of con­cussed ath­letes, and its pro­to­col doc­u­ment is the bi­ble in the world of con­tact sports. McCrory is also the most prom­i­nent mem­ber of the AFL con­cus­sion work­ing group es­tab­lished in 2010 to ad­vise the AFL on these is­sues, al­though the AFL was keen to em­pha­sise to The Monthly that “Pro­fes­sor McCrory does not rep­re­sent the AFL”. He’s an in­ter­na­tional con­cus­sion con­sul­tant and has ad­vised, among oth­ers, the NFL, the Na­tional Hockey League (NHL), the AFL and Cogstate, the com­pany that de­vel­oped and sold the com­put­erised side­line con­cus­sion tests that ev­ery club in the AFL and NRL uses. It’s an im­pres­sive CV, with hun­dreds of aca­demic pa­pers. In Jan­uary he was awarded a $600,000 Med­i­cal Re­search Fu­ture Fund grant to study mild trau­matic brain in­jury and the risk of long-term neu­rode­gen­er­a­tive and neu­robe­havioural dis­ease. How­ever, while McCrory’s bio as­serts that he is a “global leader in the field of sports con­cus­sion and CTE” he has pub­lished no orig­i­nal clin­i­cal re­search into the dis­ease. He de­clined to be in­ter­viewed by The Monthly. When McCrory stood to de­liver his pub­lic lec­ture on “The Con­cus­sion ‘Cri­sis’: Media, Myths and Medicine” at the Univer­sity of Mel­bourne in April 2016, the au­di­ence was in no doubt as to his au­thor­ity to pro­vide such an im­por­tant over­view. He car­ried the im­pri­matur of the Florey In­sti­tute – Aus­tralia’s most re­spected neu­ro­science re­search fa­cil­ity – where he was a re­search fel­low, and he was about to ad­dress a topic that had sent the world of sport into a kind of ex­is­ten­tial cri­sis. Did con­cus­sion ex­pose play­ers to the threat of the dreaded early de­men­tia dis­ease, CTE? The Age re­ported the lec­ture un­der the head­line “NFL Con­cus­sion Prob­lem Overblown: AFL Ex­pert Paul McCrory”, and in it McCrory re­ferred to “all the carry on and hoo-ha you get from the United States” and ac­cused the media of pre­sent­ing “over­sim­pli­fied views”. He ques­tioned the sig­nif­i­cance of NFL-re­lated find­ings from Bos­ton Univer­sity. He be­gan the lec­ture by as­sert­ing that con­cus­sion wasn’t a phys­i­cal in­jury to the brain, nor was it bruis­ing or bleed­ing or the brain bounc­ing off the skull. Con­cus­sion was “chem­i­cal changes” oc­cur­ring in the brain, which took it “tem­po­rar­ily off­line”. Ninety per cent of peo­ple got bet­ter in a few weeks, he said. He then put con­cus­sion into con­text: the CTE “story” had some prob­lems. The group “push­ing the CTE story … pro­posed a se­ries of stages of this sort of pro­tein on the brain called tau. This is the brown stain you can see here,” said McCrory, point­ing to an im­age of a dis­sected brain, “rang­ing from a few lit­tle spots up to the sort of ginger­bread brain … which is most se­vere”. “It sounds like a good story if you see some­thing on a post-mortem slice.” By the age of 50 every­body had ab­nor­mal tau in the brain, said McCrory. Repet­i­tive brain in­jury had noth­ing to do with it. “It is part of the age­ing process,” he con­cluded. Yet in 2015, a panel of neu­ropathol­o­gists con­vened by the US Na­tional In­sti­tute of Neu­ro­log­i­cal Dis­or­ders and Stroke took the first steps in de­vel­op­ing a set of cri­te­ria for the di­ag­no­sis of CTE at post-mortem. The neu­ropathol­o­gists agreed that the pat­tern of tau de­po­si­tion in the brain is dis­tinct and is dif­fer­ent to the tau that is seen in other neu­rode­gen­er­a­tive dis­eases and as a con­se­quence of age­ing. It wasn’t the de­fin­i­tive set of di­ag­nos­tic cri­te­ria for this ne­glected dis­ease, but it was a start. In his lec­ture, McCrory pointed out that the NFL had not ad­mit­ted any li­a­bil­ity when it set­tled the class ac­tion brought by for­mer grid­iron play­ers, but the NHL, now fac­ing a sim­i­lar class ac­tion, was go­ing to fight be­cause “the CTE story is not all it’s cracked up to be”. Eight months af­ter his lec­ture, McCrory pro­vided an ex­pert opin­ion to the NHL. In his 55-page af­fi­davit, McCrory said con­cus­sion was not a phys­i­cal brain in­jury but a tran­si­tory prob­lem. It was an opin­ion that ran counter to the co­pi­ous doc­u­mented clin­i­cal re­search us­ing ad­vanced imag­ing tech­niques that had iden­ti­fied the sub­tle dam­age caused by con­cus­sion – the dis­rup­tion in white mat­ter and the mi­cro­scopic breaks in nerve cells that af­fected the brain’s abil­ity to con­nect to other parts. In McCrory’s opin­ion, CTE was not a sep­a­rate dis­ease. The the­sis that CTE was not a dis­tinct dis­ease re­ceived an­other work­out less than 12 months later, when Amer­i­can neu­ro­sur­geon Pro­fes­sor Allen Sills stepped onto the podium at the AFL Con­cus­sion Sym­po­sium: Ad­vances in Un­der­stand­ing & Man­age­ment to de­liver the key­note ad­dress. Dr Nathan Gibbs, now chief med­i­cal of­fi­cer of the Wal­la­bies, had been im­pressed by this talk. “He had a great graph show­ing the in­ci­dence of tau de­po­si­tion in au­top­sies where they looked at brains and found that tau de­po­si­tion was there, pro­gres­sively in a lin­ear sort of pro­gres­sion, as you get older from your 20s and 30s.” In other words, ab­nor­mal tau build-up came with age and was a nor­mal part of age­ing in­de­pen­dent of head trauma.

Three days af­ter this key­note, it was an­nounced that Pro­fes­sor Sills had been ap­pointed chief med­i­cal of­fi­cer of the NFL. Neu­ropathol­o­gist Dr Wil­lie Ste­wart, based in Glas­gow, is one of the lead­ing CTE in­ves­ti­ga­tors in the world. Fit and in his 40s, Ste­wart has his own con­cus­sion story. It was dawn and he was rid­ing into the Queen El­iz­a­beth Univer­sity Hos­pi­tal for a meet­ing when a car turned in front of him. The last thing Ste­wart re­mem­bers is the wind­screen ex­plod­ing in his face. His bike was to­talled. At hos­pi­tal they were “pick­ing bits of wind­screen out of my face and didn’t even check for con­cus­sion”, he said. “They didn’t even think about it.” “I cer­tainly didn’t think I had con­cus­sion. I thought I was fine! But a col­league who ar­rived at the crash scene said I wasn’t. He told me I was be­hav­ing mas­sively in­ap­pro­pri­ately for some­one who’d just gone through a wind­screen.” I asked him what “in­ap­pro­pri­ately” meant. “Like I was catch­ing up with him at a party,” said Ste­wart. But the con­cus­sion did catch up with him. His me­mory, his abil­ity to think straight. For the next three months, he strug­gled. His wife thought it was closer to six. It’s a cau­tion­ary tale he’s telling. If one of the world’s lead­ing ex­perts on brain trauma couldn’t recog­nise his own con­cus­sion, what hope did a player have? If a hos­pi­tal ER didn’t check for con­cus­sion, what hope for a player taken to hos­pi­tal with a bro­ken jaw? Ste­wart has been at the fore­front of the CTE de­bate between those doc­tors and clin­i­cians who are closely as­so­ci­ated with the big sports and those who are on the op­po­site side, such as the clin­i­cians at Bos­ton Univer­sity’s CTE Cen­ter and him­self. It was his view that the con­cus­sion man­age­ment pro­to­cols de­vised by the Con­cus­sion in Sport Group were not writ­ten by a con­sen­sus of med­i­cal ex­perts. “This is not sci­ence, this isn’t ex­perts, this isn’t medicine, this is sport [that] has writ­ten the doc­u­ment.” “I am unaware of any orig­i­nal re­search he has done on this [CTE],” said Ste­wart of Pro­fes­sor McCrory. The opin­ion that CTE was an ef­fect of age­ing was one ex­am­ple, said Ste­wart, of peo­ple speak­ing out­side their ar­eas of ex­per­tise. “We’ve known about age-re­lated tau for decades – there’s noth­ing un­usual about it. And we’re per­fectly ca­pa­ble of be­ing able to dis­tin­guish between that and in­di­vid­u­als who have been ex­posed to brain in­jury [which is CTE] … If any­one read the lit­er­a­ture they would see that. “[And] it’s not sim­ply the tau pat­tern which is dis­tinc­tive in brains with CTE. There’s in­flam­ma­tion, dis­rup­tion of the blood brain bar­rier. “I can go on and on. You know, the brains of these peo­ple are con­sid­er­ably dif­fer­ent than nor­mal age­ing. Not only that – we al­ways re­flect our work back to nor­mal age­ing. “The brain in­jury is im­por­tant be­cause it’s the grain of sand that goes into the oys­ter … This is the thing that causes the dam­age that trig­gers the whole event. But with cur­rent ev­i­dence where it is, to sug­gest that the causative agent is some­thing other than brain in­jury is disin­gen­u­ous and frankly ridicu­lous.” Ste­wart said the view that con­cus­sion was not a phys­i­cal in­jury to the brain was based on “no good ev­i­dence”. “The sugges­tion that there is no struc­tural change is based on old imag­ing stud­ies where you just didn’t have the res­o­lu­tion, you just didn’t have the tech­nol­ogy to be able to see the dam­age in the brain. “I think that view that is pro­moted by some peo­ple takes a se­lec­tive in­sight into the cur­rent knowl­edge and lit­er­a­ture by ig­nor­ing the other ev­i­dence, which shows quite clearly that there is ev­i­dence of dam­age to the brain.” The risk of brain in­jury, said Ste­wart, was de­pen­dent on two things: the sever­ity of the in­jury and the cu­mu­la­tive dam­age of many repet­i­tive head in­juries. “So if you get hit by a car and get se­vere head in­jury you have a lot of dam­age to the brain, and the chance of long-term dam­age to the brain is rel­a­tively high. If, how­ever, you get tack­led in rugby and bang your head on the ground, your risk of dam­age is low and pre­sum­ably your risk of long-term dam­age is rel­a­tively low as well. “But if you get tack­led or hit in a scrum a hun­dred times in a match, [each] one of these can be caus­ing mi­cro­scopic dam­age to the brain which may not pro­duce any symp­toms at all, may not make you feel dizzy or con­fused or have any me­mory prob­lems – but is at the deep­est level in the brain caus­ing some in­jury. “Even in a con­cus­sion which is a mild in­jury, which most peo­ple re­cover from, at some struc­tural level there’s dam­age to the brain, and that’s why we need to be cau­tious. Be­cause the brain may or may not re­cover. We think in most peo­ple it prob­a­bly does, but for some peo­ple it may not.” The question sci­en­tists were now look­ing at was the crit­i­cal one: why did most peo­ple seem to re­cover from

“Even in a con­cus­sion which is a mild in­jury, which most peo­ple re­cover from, at some struc­tural level there’s dam­age to the brain.”

repet­i­tive in­juries, while a small num­ber didn’t – and why did some get CTE? The epi­demi­ol­ogy of the dis­ease was still a mys­tery. Mel­bourne neu­ro­phys­i­ol­o­gist Dr Alan Pearce re­mem­bers the mixed feel­ings he had in 2015 when he signed a $60,000 re­search agree­ment with the AFL to study the ef­fects of con­cus­sion on past play­ers. The project was set to last two years and be based at the Univer­sity of Mel­bourne. It was ex­pected Pearce would pub­lish his find­ings in a jour­nal. The in­tel­lec­tual prop­erty would rest with him. The re­search question was sim­ple. Did a his­tory of repet­i­tive head in­jury in for­mer play­ers af­fect their neuro func­tion­ing? Re­search sub­jects would be drawn from among the 600 for­mer AFL and Vic­to­rian Foot­ball League play­ers who had re­sponded to a mass on­line sur­vey sent out by the AFL Play­ers’ As­so­ci­a­tion in 2014, prob­ing them for in­for­ma­tion about any last­ing ef­fects of con­cus­sion. For his AFL re­search, Pearce was to repli­cate tests he had used suc­cess­fully in a pre­vi­ous study, at Deakin Univer­sity, of re­tired am­a­teur and elite Aus­tralian Rules foot­ballers in their 50s, us­ing a tech­nique known as tran­scra­nial mag­netic stim­u­la­tion. He had found that there were sta­tis­ti­cally sig­nif­i­cant dif­fer­ences in mo­tor con­trol and brain ac­tiv­ity of the con­cussed play­ers. It was re­search that at­tracted not just media in­ter­est but also the in­ter­est of con­cus­sion re­searchers around the world and the AFL Play­ers’ As­so­ci­a­tion. His am­biva­lence in 2015 be­gan when he was told the AFL would choose whom he would be test­ing for brain dam­age. “I mean, as a sci­en­tist that screams se­lec­tive re­cruit­ment,” Pearce told me. “It amounted to the AFL saying, ‘Well, we’ll send player A and B to Alan, but not player C.’” As to why player C wouldn’t make the cut, Pearce had no clue. He made his con­cerns known, but says he was told it was “to en­sure they get the right peo­ple to be tested in terms of what they had re­ported on in the sur­vey”. Still, he be­lieved the AFL was gen­uinely com­mit­ted to “solid sci­ence”, and a con­tract like this would keep the rest of his re­search tick­ing along. But Pearce’s re­search never got off the ground. There would be no pub­lished find­ings. The real trou­ble be­gan in Oc­to­ber, af­ter the ABC’s 7.30 fea­tured a story on Pearce’s “ground­break­ing” re­search. An in­tro­duc­tion to the seg­ment de­scribed it as the first time the AFL had stud­ied the long-term ef­fects of con­cus­sion, and re­porter Louise Mil­li­gan men­tioned how “scep­ti­cal” the AFL and its ad­vis­ers had been about CTE. The fact that the AFL was fund­ing this re­search at all rep­re­sented a “sig­nif­i­cant shift in its at­ti­tude to the long-term ef­fects of con­cus­sion”. The story aired on a Fri­day night. At 9.51am the fol­low­ing Mon­day, an email landed in Pearce’s in­box at the Univer­sity of Mel­bourne.

It was from Paul McCrory, from his per­sonal email: “Did you get ap­proval from the Mel­bourne Univer­sity to do that story as per our ar­range­ment which was a spe­cific and non-ne­go­tiable re­quire­ment if you were go­ing to work at the Univer­sity?” Pearce’s heart sank. McCrory was not a man to be messed with. Even though McCrory was not for­mally a party to Pearce’s re­search con­tract with the AFL, he seemed to be play­ing an ac­tive role in polic­ing it. Pearce’s re­ply was in the af­fir­ma­tive. “Yes per­mis­sion was given, as per yours and Linda’s [Pro­fes­sor Linda Denehy, head of the Univer­sity of Mel­bourne’s Mel­bourne School of Health Sciences] di­rec­tive. I was not go­ing to par­tic­i­pate un­less sign off was sought from Linda. Both the ABC and [Ian] Pren­der­gast [AFL Play­ers’ As­so­ci­a­tion gen­eral man­ager of player re­la­tions] had con­tacted the Univer­sity of Mel­bourne media depart­ment and Ian had spo­ken to Linda to al­low this to oc­cur. I re­spect your po­si­tion.” Two days later, Linda Denehy can­celled Alan Pearce’s ar­range­ment with the Univer­sity of Mel­bourne. The fol­low­ing week, Pearce and McCrory had a cof­fee to dis­cuss how to take Pearce’s project for­ward. Ac­cord­ing to Pearce, McCrory was un­happy be­cause Mil­li­gan’s story re­ported that the only re­search be­ing done by the AFL into long-term ef­fects of con­cus­sion was Pearce’s. In Pearce’s ac­count, McCrory said this was “mis­in­for­ma­tion”, be­cause he and the Florey In­sti­tute had been do­ing that re­search for years. McCrory, via the Florey In­sti­tute, would not con­firm the con­tents of the con­ver­sa­tion with Pearce, and said he had no role in Pearce’s de­par­ture from the Univer­sity of Mel­bourne. Denehy has told The Monthly that Pearce did not have ap­proval to do the ABC in­ter­view, and she had de­cided that her depart­ment was un­able to su­per­vise his con­cus­sion re­search. Pearce was puz­zled as to what long-term re­search McCrory and the Florey In­sti­tute were do­ing. “I don’t re­ally know. All I know is what is pub­licly dis­cussed, and there is some neuro-imag­ing re­search go­ing on, but there has been no data pre­sented in a peer-re­viewed jour­nal or even a proper con­fer­ence.” Pearce shifted the project to Swin­burne Univer­sity of Tech­nol­ogy, but it all went down­hill from there. It took five months for the AFL to send Pearce his first for­mer AFL player. He found this deeply trou­bling. Pearce knew that a third of the 600 for­mer play­ers who had re­sponded to the 2014 on­line sur­vey about the ef­fects of con­cus­sion had com­plained of on­go­ing prob­lems. At his lec­ture, Pro­fes­sor McCrory had dis­missed this as “50- and 60-year-old peo­ple who have got wor­ries for all sorts of rea­sons”, be­fore adding, “We haven’t found any that have matched the Amer­i­can ex­pe­ri­ence.” The “Amer­i­can ex­pe­ri­ence” was pre­sum­ably re­fer­ring to that of CTE. But it would not be pos­si­ble to find CTE among the for­mer play­ers. For one thing, they were liv­ing. CTE could only be di­ag­nosed at post-mortem. In Au­gust 2016, Pearce learnt more about what the for­mer AFL and VFL play­ers had re­ported about the con­se­quences of their con­cus­sions. At the AFL’s Con­cus­sion Net­work Meet­ing, McCrory re­vealed that these “wor­ried play­ers” had in fact scored highly on clin­i­cal de­pres­sion and anx­i­ety scores. Pearce’s con­tem­po­ra­ne­ous notes of that meet­ing record McCrory saying he be­lieved this might be be­cause play­ers were hav­ing dif­fi­culty adapt­ing to life af­ter the game, and that their de­pres­sion might be more to do with anaes­thet­ics and surg­eries they had re­ceived dur­ing their footy ca­reers. He blamed the media for their anx­i­ety. A few months later, Pearce was given more un­wel­come news. He was told he would not be do­ing the psy­cho­log­i­cal or mo­tor skills and oc­u­lar tests that were part of his study. Other re­searchers would do those, and he would not be privy to the re­sults. “I said, ‘Look, if you take those things off me, then

Pearce knew that a third of the 600 for­mer play­ers who had re­sponded to the 2014 on­line sur­vey about the ef­fects of con­cus­sion had com­plained of on­go­ing prob­lems.

what I am do­ing is es­sen­tially worth­less, be­cause the data I get, the wave­form ac­tiv­ity that I mea­sure us­ing my tech­nique, has no con­text.’” “They said, ‘Oh, don’t worry, we just want you to do that.’” Eigh­teen months into Pearce’s con­tract, only one for­mer player had made their way to his lab. In his fi­nal re­port to the AFL, de­liv­ered at the con­clu­sion of his twoyear re­search deal, Pearce ad­vised that he had tested eight for­mer AFL play­ers and 74 con­trols. “So what is the value of your re­search?” I asked. “There is no value. It’s un­pub­lish­able,” Pearce said. In a writ­ten state­ment to The Monthly, the AFL said Pearce’s fund­ing “was not re­newed, as the AFL formed the view that it was not de­liv­er­ing pro­duc­tive out­comes”. Soon af­ter set­tling its class ac­tion, the NFL promised US$16 mil­lion to fund re­search into in­di­vid­u­als deemed at “high risk” of de­vel­op­ing CTE. The US Na­tional In­sti­tutes of Health (NIH), the world’s largest in­de­pen­dent re­search in­sti­tu­tion, would al­lo­cate the fund­ing. But when the NIH an­nounced that the suc­cess­ful grantee would be Bos­ton Univer­sity, the NFL man­age­ment was fu­ri­ous. They com­plained of bias, and said

they had not agreed to the project. (They had.) Mem­bers of the NFL’s head, neck and spine com­mit­tee per­son­ally rang NIH of­fi­cers to com­plain. The up­shot was that the NFL took its “un­re­stricted grant” off the table and walked out of the deal. Later a US Con­gress re­port would con­clude that the NFL had at­tempted to in­flu­ence fund­ing de­ci­sions at the NIH, and had acted dis­hon­estly and out of self-in­ter­est, as its rep­re­sen­ta­tives sought to di­rect the money to­wards their own pre­ferred project. One NFL doc­tor came in for par­tic­u­lar crit­i­cism: the chair of the NFL’s head, neck and spine com­mit­tee, Dr Richard El­len­bo­gen. The re­port found he was “a pri­mary ex­am­ple of the conflict of in­ter­est between his role as a re­searcher and his role as an NFL ad­vi­sor”. Barely six weeks later, El­len­bo­gen was in Lon­don, con­ven­ing a con­cus­sion “think tank” with 14 other medi­cos from con­tact-sport or­gan­i­sa­tions. The NFL was look­ing for re­search col­lab­o­ra­tions, and “new and in­no­va­tive ideas”. Paul McCrory was there too, but not, ac­cord­ing to the AFL, as their rep­re­sen­ta­tive. Over the week­end, the NFL agreed to fund a CTE re­search study that would, ac­cord­ing to El­len­bo­gen, “es­tab­lish if there is any cor­re­la­tion between re­cur­rent head im­pact in sport and neu­rode­gen­er­a­tive dis­or­ders later in life”. McCrory took the role of “in­ves­ti­ga­tor”. The project would not be study­ing foot­ballers, how­ever. It would be study­ing jock­eys. It would ask why jock­eys weren’t get­ting CTE. The project was the brain­child of Dr Michael Turner, the Bri­tish Horserac­ing Au­thor­ity’s for­mer med­i­cal of­fi­cer. He said that jock­eys had the “high­est rate of con­cus­sion in the recorded lit­er­a­ture”. “There­fore if con­cus­sion cre­ated long-term prob­lems with de­men­tia we would ex­pect to see lots of jock­eys who are de­mented, sui­ci­dal and had CTE, and we don’t seem to see that.” Turner said this re­search was about whether the “hype” around CTE could be “sub­stan­ti­ated”. El­len­bo­gen joined McCrory on the jockey study sci­en­tific com­mit­tee, as did Dr Rudy Castel­lani, a neu­ropathol­o­gist who was also an ex­pert wit­ness for the NHL’s de­fence against the play­ers’ class ac­tion. The NFL would kick in US$1 mil­lion for the re­search. (By 2017, ac­cord­ing to McCrory, the “re­tired jockey project” had £4.5 mil­lion in fund­ing.) At his lec­ture, McCrory had also stated that jock­eys had the high­est rates of con­cus­sion in the epi­demi­ol­ogy of sport. “The sport that is one, two, three on the all-time list of caus­ing con­cus­sion is horse rac­ing … and look what is right down on the bot­tom: NFL foot­ball.” Jock­eys had con­cus­sion rates 40 times higher than AFL play­ers, he said. “So that’s a clue that the CTE story has a few ques­tions we don’t un­der­stand yet.” The Florey In­sti­tute would be part of the jockey re­search project too, ac­cord­ing to its 2015–16 an­nual

re­port. “Jock­eys are also de­mand­ing the at­ten­tion of the Florey team,” it said in a two-page spread on the work of Pro­fes­sor McCrory. How­ever, by this time the sit­u­a­tion for jock­eys had be­come dra­mat­i­cally worse. Now McCrory said jock­eys had con­cus­sion rates 100 times higher than AFL play­ers. “If any group is go­ing to show long-term prob­lems it’s go­ing to be jock­eys, and we’re work­ing with a pop­u­la­tion of jock­eys ap­ply­ing the same imag­ing pro­to­cols [as the Florey’s AFL study],” said McCrory in the an­nual re­port. “It’s not like jock­eys are scream­ing out as a great pop­u­la­tion to be stud­ied here,” Dr Wil­lie Ste­wart told me. Nor did he know what data was be­ing re­lied upon to make the claim that jock­eys had the high­est con­cus­sion rates of ath­letes. “To say that in some way study­ing horse races is go­ing to give us some in­sight into CTE is a false as­sump­tion. If that were true, then Har­ri­son Mart­land back in 1928 would have writ­ten a pa­per about horse rac­ing. Be­cause when we first recog­nised the prob­lem with head im­pacts and sport and de­men­tia it was in box­ers. Why? Be­cause box­ers were ex­posed to high lev­els of brain in­jury and cu­mu­la­tive head im­pacts. That’s where you saw the punch drunk syn­drome, in box­ers, not jock­eys.” The ev­i­dence for this claim that jock­eys had con­cus­sion rates higher than any other ath­letes was dif­fi­cult to find. Pro­fes­sor McCrory and Dr Turner in Lon­don both pro­vided ci­ta­tions that didn’t sup­port their asser­tions; in­deed nei­ther study men­tioned jockey con­cus­sion rates. Nor did the pa­pers pro­vide sup­port for McCrory’s claim there were 40 mil­lion sports-re­lated con­cus­sions each year in the United States. The ci­ta­tion put this fig­ure at 3.8 mil­lion. Clar­i­fi­ca­tion was sought. The re­sponse was ob­tuse. “The talk at the Florey In­sti­tute was for the lay com­mu­nity, not for a sci­en­tific au­di­ence,” and “Please note: for pub­lic, lay au­di­ence sci­en­tists don’t usu­ally in­clude for­mal ci­ta­tions.” I was fur­ther ad­vised: “The slides show­ing con­cus­sion rates in sport were de­rived from var­i­ous stud­ies.” I had an­other question: What ex­actly was the jockey re­search pro­gram re­ferred to in the 2015–16 an­nual re­port? “It is a long-term project and a sci­en­tific pro­gram is yet to be de­fined.” In other words, in mid 2018 the re­search project that was dis­cussed as un­der­way in 2016 had in fact not yet be­gun. The web­site of the jockey re­search project in Lon­don claimed that it was “col­lab­o­rat­ing” with the Florey In­sti­tute. In­deed Pro­fes­sor McCrory was listed as the chair of the sci­en­tific com­mit­tee, and the Florey’s deputy di­rec­tor, Pro­fes­sor Graeme Jack­son, was listed as the di­rec­tor of Imag­ing. What then was the Florey’s re­la­tion­ship with the jockey re­search project in Lon­don? The re­ply from the Florey was em­phatic: “The Florey has no re­la­tion­ship with the foun­da­tion.” What was Graeme Jack­son’s re­la­tion­ship with the jockey re­search project in Lon­don? Pro­fes­sor Jack­son was do­ing his work in an “un­paid ca­pac­ity” and agree­ing to over­see their imag­ing pro­to­cols and in­ter­pre­ta­tion of their imag­ing stud­ies. It is an honorary po­si­tion, came the re­sponse. The next time I checked the jockey project web­site, all ref­er­ences to Pro­fes­sor Graeme Jack­son had dis­ap­peared. Then in late July, when The Monthly asked the Florey In­sti­tute if it had mis­led its stake­hold­ers about its in­volve­ment in the jockey re­search, the in­sti­tute came back with an en­tirely dif­fer­ent answer. There was a mem­o­ran­dum of un­der­stand­ing cov­er­ing re­search and imag­ing. So, yes, that meant there was “a col­lab­o­ra­tion”. The MOU, how­ever, would not be pro­vided to The Monthly, as it was com­mer­cial-in-con­fi­dence. There were no con­cus­sion re­search projects listed among the Florey’s 146 on­go­ing projects. The 2017 AFL in­jury sur­vey is a chal­leng­ing read. Its 17 pages of dense ta­bles and in­jury data are il­lu­mi­nated by just five brief dot points of “ob­ser­va­tions”. Not one of those dot points ex­plains that 80 per cent of con­cussed play­ers re­turned to play the fol­low­ing week. Num­bers like that worry Dr Wil­lie Ste­wart. How, he asks, could sports de­cide that a player had re­cov­ered from a mild trau­matic brain in­jury on the ba­sis that their symp­toms had dis­ap­peared? It was a de­ci­sion that was based on “no sci­en­tific ev­i­dence what­so­ever, other than most peo­ple are symp­tom­free in seven to 10 days”, he said. “There is no ev­i­dence, no in­ves­ti­ga­tion, no test, no blood, no scan, to say that the brain has re­cov­ered in that time. “But there is plenty of ev­i­dence to say that sport op­er­ates on a week-to-week ba­sis – and so seven days seems co­in­ci­den­tally to fall quite hap­pily for play­ing next Satur­day.” Ste­wart said there were clin­i­cal metabolic stud­ies that sug­gested the brain hadn’t re­cov­ered in that pe­riod, and also stud­ies in other sports that clearly showed play­ers who had been con­cussed had higher in­jury rates through­out the whole sea­son. He wanted to know how sport could claim player wel­fare was the num­ber one pri­or­ity when “there are still play­ers re­tir­ing be­cause of long-term con­cus­sion is­sues”. Sit­ting with Peter Gor­don, Western Bull­dogs pres­i­dent and high-pro­file plain­tiff lawyer, I thought of the many play­ers who had an­nounced early re­tire­ments cit­ing con­cus­sion. “The obli­ga­tion as a club is to fol­low the ad­vice of the best ex­perts,” said Gor­don. He was of the opin­ion that Aus­tralian Rules foot­ball was in­her­ently less risky than soc­cer and grid­iron, games which both en­cour­aged head con­tact.

What did he make of the fact that con­cus­sion tests only mea­sured symp­toms and that once symp­toms had been re­lieved play­ers were back on the field? “If sci­ence or de­vel­op­ments in medicine demon­strate that there are risks we hadn’t pre­vi­ously ap­pre­ci­ated, then our obli­ga­tion as an in­dus­try is to change and adapt our prac­tices and our rules to make sure we are tak­ing rea­son­able care of our play­ers.” What did Gor­don make of the fact that in box­ing, for in­stance, if a boxer was knocked out they could not re­turn to the ring for many weeks, but in AFL they could be back next week­end? “Box­ing doesn’t have a 22-week sea­son, or a sev­en­day turn­around between bouts. The timing lo­gis­tics of ‘the sport’ are com­pletely dif­fer­ent to AFL,” said Gor­don. How­ever, he was “open” to the idea that the non­play­ing pe­riod ex­tend beyond “the ces­sa­tion of symp­toms” and that “sec­ond and sub­se­quent con­cus­sions” also have an ex­tended non-play­ing pe­riod, but “I am await­ing guid­ance from med­i­cal sci­ence”. I asked him, “What do you think of Pro­fes­sor Paul McCrory’s state­ment that the re­la­tion­ship between repet­i­tive head in­jury and CTE is ‘spec­u­la­tion’? Do you agree with that?” “No,” he replied. “I don’t.” He con­tin­ued: “I don’t agree with Pro­fes­sor McCrory on the ba­sis of the read­ing that I have done. I think CTE is an es­tab­lished risk for repet­i­tive head trauma, cer­tainly in the NFL.” “And have you made that view known?” I asked. “Yes, I have. And I have said they should be seek­ing a broad spec­trum of views, and not just fo­cus on one ex­pert.” “Do you think he should con­tinue in the role [of AFL con­cus­sion ex­pert]?” “I don’t wish to make any other com­ment,” said Gor­don. Wil­lie Ste­wart has se­cured fund­ing from the Foot­ball As­so­ci­a­tion to do his study on Scot­tish foot­ballers. There are 10,000 for­mer pro­fes­sional foot­ballers in his study, and they will be matched with a sim­i­lar-aged con­trol group. Ste­wart and his co-re­searchers are us­ing de­men­tia as a proxy for CTE. It would help them un­der­stand the rel­a­tive risk of repet­i­tive head in­jury for a large group of peo­ple who played con­tact sport. He out­lined the pos­si­bil­i­ties. “It may well be that what par­tic­i­pa­tion in sport does not change is the per­cent­age of peo­ple who get de­men­tia, but in­stead of get­ting it when you are 70, you get it when you are 50. “Or maybe it dou­bles the in­ci­dence of de­men­tia, but they get it at nor­mal age, so high-level sport is a risk for de­men­tia. “Or maybe it means that de­men­tia goes up con­sid­er­ably but ac­tu­ally it’s be­cause the for­mer foot­ballers are liv­ing till they are 70 and 80.” It’s a re­search project that might answer Jude Bolton’s ques­tions. At the 2018 Fron­tiers in Trau­matic Brain In­jury con­fer­ence, hosted by the Im­pe­rial Col­lege Lon­don in early July, some of the world’s best re­searchers gath­ered to dis­cuss the lat­est de­vel­op­ments in brain in­jury re­search. Front and cen­tre of the con­fer­ence was chronic trau­matic en­cephalopa­thy. Pro­fes­sor Lee Gold­stein from Bos­ton Univer­sity’s CTE Cen­ter de­liv­ered a pre­sen­ta­tion on his work, which – to cut a long story very short – has in­ves­ti­gated the mech­a­nis­tic path­way between the phys­i­cal in­jury and CTE in the brain. Gold­stein’s re­search ex­am­ined the im­pact of repet­i­tive head in­juries on rats and then repli­cated these in­juries in hu­man brain mod­els. Ac­cord­ing to this re­search, it was the repet­i­tive head in­juries, not con­cus­sion, that caused the CTE-like patholo­gies in the brain. He’s also over the “CTE de­bate”. “The de­bate on whether CTE ex­ists or not at this point is ir­rel­e­vant to me,” he told me. “The sci­en­tific ev­i­dence for me and many oth­ers at this point has the same truth value as smok­ing and cancer … Peo­ple can de­cide whether they read the sci­en­tific lit­er­a­ture. And they can read it as well as I can.” He said it is vested in­ter­ests like Big Sport and the mil­i­tary that want neu­rode­gen­er­a­tive dis­ease as­so­ci­ated with repet­i­tive head in­jury to just go away. “I want to know who is at risk, and I want to treat the dis­ease now and help those peo­ple who are suf­fer­ing,” said Gold­stein. Al­ready they had inklings of ther­a­peu­tic path­ways. He was op­ti­mistic about the fu­ture. And a ther­a­peu­tic so­lu­tion is what the Taylor fam­ily want too. They hoped that do­nat­ing Tizza’s brain to sci­ence might lead not just to changes across sport­ing codes in re­la­tion to con­cus­sion but also to the abil­ity to treat CTE in the liv­ing. As for the AFL, it’s al­most as if they don’t want to know.

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