Sufferers live one day at a time. It’s too late for a cure
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).
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 today’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