Could motor neurone disease (MND) be linked to rugby?
This difficult question has been posed over the years following the deaths from the incurable disease of high-profile players.
The latest was the former England and Leeds Rhinos rugby league legend Rob Burrow, who died aged 41 on Sunday (June 2).
He was diagnosed with the disease in 2019 and campaigned heavily to raise awareness of it with his former team-mate Kevin Sinfield. The latter has raised more than £7 million for MND research through several gruelling challenges.
So is there any research about rugby’s possible link to the dreadful condition? Yes.
Brian Dickie, head of research development at the Motor Neurone Disease Association, said the findings supported earlier data on elevated risk in football players. However, he acknowledged that the study was "considerably smaller" and raised a few questions.
He told the BBC: "For example, it is not clear exactly how many players were diagnosed with MND, though from the information provided, that absolute number will be small.
"It is also surprising that there were no cases reported in the larger control group, as MND is the most common neurodegenerative disease of mid-life.
"Moreover, we know that the vast majority of cases of MND involve a complex mix of genetic and environmental risk factors, so the level of genetic risk may be different in high-performance athletes compared with the general population.” He added that research needed to extend to bigger populations and a “close collaboration between researchers and rugby representative bodies across multiple countries”.
So what is motor neurone disease, which former rugby players have died from it, and what are its symptoms and possible causes?
Here’s all you need to know.
What is motor neurone disease?
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), is a progressive neurodegenerative disorder that affects nerve cells (neurones) responsible for controlling voluntary muscle movements. It primarily affects the motor neurones in the brain and spinal cord, leading to the degeneration and eventual death of these cells.
As motor neurones deteriorate, the communication between the brain and muscles is disrupted, causing progressive muscle weakness, loss of coordination, and difficulties with speech, swallowing, and breathing. The disease can vary in its presentation and progression from person to person.
In rare cases, some sufferers can live for decades. For example, the renowned English theoretical physicist, cosmologist and author, Professor Stephen Hawking, was diagnosed at age 21 but lived to be 76.
Several famous rugby players have died from (or have) motor neurone disease.
Scottish rugby union lock Doddie Weir died in 2022, aged 52, after being diagnosed in December 2016.
Before his death, Weir set up the My Name’5 Doddie Foundation to aid MND research. The charity’s flagship fundraising programme, Doddie Aid, has raised millions of pounds through challenges such as cycling events.
South Africa scrum-half Joost van der Westhuizen, who won the 1995 World Cup, died in 2017 after he announced he had the disease in 2011.
Former Gloucester lock Ed Slater retired from rugby union in July 2022 aged only 33 after being diagnosed with MND.
What are the symptoms of motor neurone disease?
The NHS says these include the following:
- Weakness in your ankle or leg — you might trip, or find it harder to climb stairs.
- Slurred speech, which may develop into difficulty swallowing some foods.
- A weak grip — you might drop things, or find it hard to open jars or do up buttons.
- Muscle cramps and twitches.
- Weight loss — your arms or leg muscles may have become thinner over time.
- Difficulty stopping yourself from crying or laughing in inappropriate situations.
These symptoms can appear gradually and may not be obvious at first. People who experience muscle weakness should see a GP, the NHS says. Although this is unlikely to be caused by MND, being diagnosed early can help people access the care they need.
Ed Slater said he felt muscle twitches in his arm for 11 months but did not think much about this until it was happening all the time.
“It was month after month, my arm got weaker and weaker, my grip became weaker, and I went to Oxford and was diagnosed with MND,” he told the BBC.
“Part of me had prepared for that, partly because of the weakness and partly because of the symptoms.”
What causes motor neurone disease?
The exact cause of motor neurone disease is not fully understood. However, research suggests that a combination of genetic and environmental factors may play a role in the development of MND.
- Genetic factors: In some cases, MND can be inherited due to certain genetic mutations. Approximately 5-10 per cent of MND cases are linked to specific genetic mutations. The most well-known genetic form of MND is familial MND (familial ALS), where the disease runs in families. Several genes have been identified that can contribute to the development of familial MND.
- Environmental factors: Various environmental factors have been studied for their potential association with MND, although the evidence is inconclusive. Some factors suggested as potential environmental contributors include exposure to certain toxins, chemicals, heavy metals, and viral infections. However, more research is needed to establish a clear causal relationship.
It is important to note that in the majority of cases, MND occurs sporadically without a clear family history or identifiable cause. The interplay between genetic predisposition and environmental factors in the development of MND is an active area of research, but further investigation is required to understand fully the complex causes.
MND mostly affects people in their 60s and 70s but can happen at any age.
How is motor neurone disease treated?
Treatment focuses on symptom management, improving quality of life, and supporting patients and their families.
Here are the key aspects of MND treatment:
- Medications: Certain medications can help manage symptoms and slow down disease progression. They may include drugs such as riluzole and edaravone to slow the disease’s advancement, as well as medications to alleviate pain, muscle cramps, or excessive saliva.
- Assistive devices: As MND progresses, assistive devices including wheelchairs, walking aids, and communication devices may be recommended to enhance mobility and independence.
- Therapy: Physical and occupational therapy can help maintain muscle strength, mobility, and range of motion. Speech therapy assists with communication and swallowing difficulties, providing techniques and assistive devices.
- Respiratory support: Respiratory difficulties are common in MND. Non-invasive ventilation (NIV) or other respiratory support methods may aid breathing and enhance quality of life.
- Palliative care: Palliative care focuses on symptom management, emotional support, and improving overall quality of life. It includes counselling and support services for patients and their caregivers.
What is the UK Government doing about motor neurone disease?
Around three-quarters of the £50 million funding pledged towards cutting-edge research into motor neurone disease (MND) has been distributed to projects across the UK. The Government confirmed this on June 21, 2023.
The funding includes almost £7m in research grants, with MND researchers continuing to submit high-quality open funding bids.
With more than £35m already paid since 2022, Government ministers said they were eager to enable faster progress towards treatments for the debilitating condition.
“Motor neurone disease is a cruel and devastating condition,” said Secretary of State for Science, Innovation and Technology Chloe Smith in June 2023. “We are unrelenting in our commitment to supporting both the people living with this condition, and the brilliant minds across Britain who are working in the hope it can become treatable — and one day even curable.
“Last year, we cut unnecessary red tape, enabling us to deliver funding for this crucial work even more quickly. Today, we are redoubling efforts by providing further support for the world-leading scientists and researchers who are taking the fight to MND.”
