New hope in quest to solve mystery of MND hotspots

By Nicola Ceccato

ABC Riverina

Topic:Motor Neurone disease

Dominic Rowe has been surveilling MND cases in the Riverina. (Supplied: Dominic Rowe)

In short:

From today, cases of motor neurone disease (MND) must be reported to NSW Health.

It is hoped mandatory reporting will provide a better snapshot of disease clusters across the state.

What's next?

The data will help inform research about what causes the disease and how it might be cured.

Professor Dominic Rowe has cared for countless patients with motor neurone disease (MND) and in 2013 established Macquarie University's MND Research Centre.

But there are still things about the as-yet-incurable neurological condition that remain a mystery even to experts.

Professor Rowe said MND cases had increased by 300 per cent across Australia in the past 37 years, with rural areas hit the hardest.

"Our recent mortality paper shows that if you live in rural and regional Australia, you are 40 per cent more likely to die from motor neurone disease. This cannot be genetic," he said.

"If they don't have a genetic cause, what's happened occupationally, recreationally, or even where they live to cause their motor neurone disease?"

Notifiable condition

Finding an answer to those questions might be about to get easier.

From today, any NSW doctor making an MND diagnosis will have to report the patient's age, address, occupation, date of onset and other demographic and clinical information to NSW Health.

Professor Rowe said the decision to make MND a notifiable condition could provide crucial extra data for researchers to analyse.

Regional hot spots

Much attention will be focused on MND hotspots which include regional centres such as Griffith, Leeton, Wagga Wagga and Narrandera in the Riverina where rates of the degenerative illness are estimated to be five to seven times the national average.

Other areas of concern include Tamworth, Coffs Harbour and Port Macquarie.

Previous research has suggested a link between cyanobacteria (blue-green algae) blooms in waterways and MND.

But Professor Rowe said more work was needed before any conclusions could be drawn.

"There are also lots of other agents that are released into these water systems that may cause the algal bloom in the first place. So it is quite a complex thing," he said.

Lake Wyangan in Griffith has been identified as an MND hotspot. (ABC Riverina: Nicola Ceccato)

Griffith resident Tania Magochi was diagnosed with MND in 2011.

She has a family history of the disease, but also grew up near Lake Wyangan, which is prone to outbreaks of blue-green algae.

"As kids we used to go out there [to the lake] all the time, like every weekend, and we used to ride down the little slide into the pool all the time," she said.

"Since the scientists said there was a connection, I avoid it at all costs … I won't even let my children go there."

Ms Magochi said she hoped making MND a notifiable disease in NSW would help provide some answers.

"Not just me, but for our scientists to understand where all these people are coming from so they can understand the environmental factors around that area," she said.

"The only hope that we have is that we can find a treatment.

Lake Wyangan is prone to blue-green algae blooms, as captured in 2020. (ABC News: Ben Deacon)

Philip Orr from the Australian Rivers Institute at Griffith University has been studying blue-green algae for close to four decades and has monitored Lake Wyangan's water quality over that time.

He said as areas like Griffith were heavily agricultural, looking into what caused the blooms in the first place would be beneficial.

"Saxotoxin [the neurotoxin produced by the algae in the lake] … you either die or you don't, and there's no chronic long-term effects from it," Dr Orr said.

"To die you'd have to drink the scum … there's no definitive research that shows [it causes] MND."

Phillip Orr has studied Lake Wyangan's water for more than three decades. (Supplied)

Dr Orr recently worked with Griffith City Council, which has tried a variety of methods to control algae in the lake, including chemical trials, water isolation and recirculating water.

"From my study of the water quality in Lake Wyangan, the water quality is not as bad as the public might like to think it is," he said.

Blue-green algae warning signs are around Lake Wyangan near Griffith. (ABC News: Rachel Carbonell)

"I think council are doing the right thing; they've really got the future of the lake well and truly in their sights in terms of how to manage it.

"But whatever they do, it's going to be a long-term solution."

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