There must be more research: Sufferers live one day at a time. It’s too late for a cure

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Fernando Ricksen’s struggles have been so unremitting that the energy he radiated when back at his beloved Rangers training ground last week defied comprehension.

‘My first bite of fresh air in four months. Murray Park, here I come!’ he had tweeted in advance of meeting with Steven Gerrard and the players. 

He had been confined for the previous month to his room in the Scottish hospice where he accepts he will spend the rest of his life, contending with the desperately debilitating effects of Motor Neurone Disease (MND).

Former Rangers winger Fernando Ricksen was diagnosed with Motor Neurone Disease in 2013

Former Rangers winger Fernando Ricksen was diagnosed with Motor Neurone Disease in 2013

Former Rangers winger Fernando Ricksen was diagnosed with Motor Neurone Disease in 2013

Those closest to Ricksen relate the story of how he has been bombarded with offers of some kind of cure. 

‘There are so many people saying “I’ve got a medicine for you”,’ says Vincent de Vries, his biographer and friend. ‘People mean well and he’s been searching for answers. But I think now he’s concentrating on living a day at a time. It’s too late for a cure now.’

The uncertainty about what drives this illness — also known as amyotrophic lateral sclerosis, or ALS — is as profound as ever, even though academic discussion of a sporting link has given it the name ‘Athlete’s curse’ for a number of years.

The Doddie Weir Foundation wants to see further research into evidence, published in this week’s Mail on Sunday, that concussive injuries sustained in elite sport could be the cause. The 48-year-old former Scotland lock revealed two years ago he has MND.

The Foundation’s scientific advisory board will be discussing the new findings at its forthcoming meeting, although Sean McGrath, its head of medical strategy, said he is more persuaded by suggestions that extreme levels of athleticism could be a cause of NMD in some. 

The Utrecht University Medical Centre made a link between hard, regular exercise and MND last year, although it also cautioned that the link between the two was not conclusive and stressed that exercise has been found to prevent many other diseases.

Weir’s Foundation and sport governing bodies were unanimous yesterday in stating that further research is needed. Only by monitoring past and present sportsmen and women over time — a longitudinal study — can the link between MND and certain top-level sports be proved or disproved.

That process can be long and and requires commitment. The Professional Football Association quietly closed such a research project some years ago, claiming that it had failed to keep track of its sample players. 

But a duty of care to players demands that the work be done. There can be no room for the backsliding and defensiveness which the Mail on Sunday has often encountered across more than five years of investigating this issue.

Although an 8.5 times greater likelihood of developing MND is significant, many would say it is still an acceptable risk. ‘I love my sport so much I would still play,‘ says spinal surgeon Mike Hutton, one of the lead researchers, who played rugby for Richmond, Middlesex, England Under 21 and The Barbarians.

‘You get in a car every day. You take risks every day. But in all things you want to avoid and limit risk. I would not want to change my sport too much but I would love to work out what are the drivers of this disease.’

Further research may establish, for example, that athletes with a certain body mass or muscularity are vulnerable, that certain genetic factors increase the risk among those in sport, or that certain types of repeated trauma to head and spine are, indeed, the most significant contributory factor. There is no known longitudinal study into the links between NMD and any sport.

The study reveals that there is room for greater vigilance about head and neck injuries. It wants greater attention to a condition known as cervical cord neuropraxia, usually caused by head collisions, resulting in a temporary loss of feeling in limbs generally restored within 24 hours. Cervical cord neuropraxia may have more serious long-term effects than has been appreciated, says the study.

‘Increased awareness among athletes who engage in contact sports cannot be overemphasised,’ states the report. ‘Precautions aimed at decreasing the likelihood to sustain blunt concussive head or neck trauma, accurate medical documentation and periodic health monitoring may all prove to be life-saving.’

World Rugby observed that concussion rates in rugby have reduced over the last year — the first reduction since the introduction of the Head Injury Assessment regime in 2012, which lowered the threshold for the identification and removal of players with confirmed or suspected concussion.

Weir is an inspiration for those afflicted by the disease and remains a larger than life character, although those closest to him say they are ‘pulling on the handbrake,’ to ensure that he does not become exhausted. He has less dexterity than a year ago.

Ricksen continues to defy all expectation, although he is changed beyond all recognition from the left-back Rangers fans took to when he arrived from AZ Alkmaar in his native Holland in 2000. Rushed to hospital after developing breathing problems at an event for Rangers fans last autumn, there were fears he would not live much longer.

He spent three months in the hospital, later moving to a hospice in Airdrie, unable to fly home to Valencia because of a lack of oxygen. For three months he did not see his Russian wife Veronika, who was denied visa clearance to enter Britain until January. He has a six-year-old daughter, Isabella.

He insists he is now resigned to remaining in the hospice. ‘I’m not afraid for the future,’ he said. ‘I know I am in the right place if something happens.’

MIKE HUTTON: I LOVED BIG HITS IN RUGBY BUT WE NEED TO KNOW THE RISKS 

From the moment I first played rugby, aged seven, on the beach in the south of France, I fell in love with the controlled aggression it allowed. Where else was I going to be permitted to deliberately knock over my younger brother and not get into trouble?

The love of the game put my medical career on hold and took me to 400 first-class games for Richmond in both the amateur and professional era, proudly entering into battle with the brother I had knocked over with joy all those years ago.

But rugby has changed a great deal since then. The hits have got bigger and collisions more frequent, and concerns are frequently expressed about the game’s safety. 

As a doctor I’ve watched the sport I love develop and I’ve seen the high-profile injuries like everyone else. Recently I watched as Doddie Weir declared that he had been diagnosed with the rare disorder Motor Neurone Disease, after Joost van der Westhuizen’s death from it.

MND is a rare condition. So seeing two top players struck down with it, one after the other, was concerning. Both were star players during my time as a professional player. I played against Doddie in 1996 in a close-fought draw. He was immense.

These cases led me to reach out to an international group of clinicians with extensive experience in the management of professional sportsmen from around the world.

I wanted their opinion on whether they felt there was an association between the disease with repetitive head or neck trauma that occurred in contact sport and, furthermore, if by playing that type of sport at professional level increased any such risk.

The group from the US, Israel, South Africa, New Zealand and the UK discussed their views and the consensus was that a systematic review of all the scientific evidence available should be conducted to establish if any risk existed — and if so, to what extent.

The results of our review found that the risk of developing ALS, or Amyotrophic Lateral Sclerosis as MND is also known, was eight times more common in professional athletes prone to concussive or neck trauma. It was a figure that shocked us all.

We are now imploring the medical community and sports governing bodies to commission longitudinal studies in this area so that we can better understand any preventative measures available.

I’m not for a second suggesting that people shouldn’t play contact sports. Given my time again, with the knowledge of the results of our research, I would still have played the game I loved. 

It was too much fun and the risks were worth taking. But it’s essential that, as a doctor, I do the research necessary to give everyone playing the sport as much information as possible and ensure that we are all aware of the risks and are doing everything possible to mitigate against them.

Mike Hutton is a consultant spinal surgeon at the Royal Devon and Exeter NHS Foundation Trust

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