A leading neurologist has called on the New South Wales government to list motor neuron disease (MND) as a notifiable disease amid suspicions that a cluster of diagnoses in the state could be related to something in between. environment.
Professor Dominic Rowe, a neurologist at Macquarie University, has treated 889 patients with MND, many of them from the irrigation town of Griffith, New South Wales, in the last decade.
Rowe is concerned that the prevalence of cases in the region may be related to something in the environment, and researchers are investigating links to blue-green algae, pesticides and heavy metals.
But he says his team is limited in its investigation because MND is not listed as a notifiable disease, one that must be reported to authorities.
If given a reportable disease status, researchers could access location data that would allow them to see where people with MND live relative to places like lakes and bodies of water, Rowe said.
They have access to “observational” data from patients, but Rowe says this “is not exhaustive.”
“If we just close our eyes and keep holding people’s hands while they die, that’s not satisfying at all,” he says.
MND is a progressive neurological disorder that leaves people unable to walk, speak, swallow, and eventually breathe.
In Australia, MND has increased in prevalence by around 250% over the past three decades, according to Rowe.
While 5-10% of cases are believed to be genetic, Rowe says he “strongly suspects” that something in the environment is driving an increase in the remaining sporadic (non-genetic) cases.
Data from a list of notifications would help investigators focus on cases and track the surrounding environment for clues to their cause, Rowe says.
He says that if an environmental cause, prevention, and even a cure can be identified, it may be possible, and that “we must move heaven and earth” to get there.
Not far from Griffith is a lake surrounded on two sides by picturesque farmland. It has become a focal point for researchers investigating the high rates of MND in the region.
Michelle Vearing says her family visited Lake Wyangan “every other weekend” growing up and the children spent hours swimming and water skiing. The Lake Wyangan Recreation Area is run by the Griffith City Council.
Vearing lost his grandfather and mother to a genetic form of MND and now supports his sister Tania Magoci in her fight against the disease.
Vearing is a volunteer for the Griffith MND’s support group, which organizes many of its activities through social media. His Facebook page contains a combination of tributes to people who have died, requests for urine and blood donations for research trials, and fundraising sales of everything from hand-sewn quilts to a prized rugby league jersey. .
“Almost everyone in the city knows someone who has passed away or has passed away from MND,” says Vearing.
Of the 30 people in the area who have died from the disease over the past decade, many had strong connections to Lake Wyangan or other nearby bodies of water, Vearing says.
In recent years, the lake has become prone to the growth of cyanobacteria, commonly known as blue-green algae, a natural feature in Australian waters and one that experts say is thriving as the weather gets warmer and drier.
So far, the New South Wales government has rejected the proposal. to include MND as a notifiable disease.
In June, New South Wales Health Minister Brad Hazzard agreed to meet with representatives of the Macquarie University research team to discuss proposal, but the meeting was postponed due to the coronavirus outbreak in the state.
In a statement, the NSW health department said the MND did not meet the criteria to be reportable, which included “the possibility of outbreaks, a need for urgent public health response and prevention.”
But experts say a neurotoxin related to MND, which researchers at the University of Technology Sydney (UTS) found in Lake Wyangan in 2019, could be cause for concern and requires further investigation. The toxin, beta-methylamino-L-alanine, or BMAA, is produced by blue-green algae.
Ken Rodgers, associate professor of pharmacology at UTS, doesn’t think the science is “100% done and dusted” on the question of whether BMAA causes neurological disease. But he says recent studies are “quite compelling in terms of implicating BMAA in neurodegeneration” and that scientists should collect information on where the toxin is found and how much there is.
The New South Wales Department of Health said links between blue-green algae and MND were reviewed in 2015 by scientists from Water Research Australia (WRA), who concluded that “the theory remains unproven” after reviewing more than 200 articles published on BMAA.
An updated fact sheet The WRA report released this month also notes that “there is a lack of scientific consensus that causation has been established” but acknowledges that cyanobacterial blooms are becoming increasingly common and “pose a threat to modern water supply systems. Water”.
“Therefore, it is important to understand not only how they can be removed from the water supply … but also how these toxins affect public health,” the fact sheet says.
A growing body of evidence, says one researcher
Dr Rachael Dunlop, an Australian senior researcher who moved to the US to study the links between BMAA and MND, says there is a growing body of evidence to support the theory.
“If you look at the number of publications that have appeared in the peer-reviewed literature on this particular topic, there has been a huge increase in the last five to seven years,” he says.
The “most compelling evidence to date of a direct connection between BMAA exposure and MND” was published in 2020she says, in a study showing that ingesting BMAA caused nerve damage very similar to that seen in the early stages of the disease in patients with MND.
“There are studies … that have found (BMAA) in post-mortem brain samples from people who died of sporadic motor neuron disease.
“But you won’t find it in patients who didn’t die from motor neuron disease. And you won’t find it in people who have had an unrelated neurodegenerative disease. “
And in a US study, researchers found that people living around Lake Mascoma in New Hampshire, which has a history of bluish-green algal blooms, were “25 times more likely to get the disease from motor neurons, ”says Dunlop.
Dunlop says that not everyone who is exposed to toxins from blue-green algae will suffer from MND, but scientists believe that BMAA may be “a trigger in susceptible individuals.”
“I don’t want to scare people by telling them that if you come across this thing on the street, you will get sick. That is not the case. But it is certainly a factor in a serious disease for which there is currently no cure. “
In NSW, Murray MP Helen Dalton says that when a bloom begins in Lake Wyangan, the surface of the water turns slimy and green, “bubbling and oozing,” and a rotten smell spreads across farmland. surrounding.
During a period in 2017 when the local council pulled Griffith’s water supply out of the lake, the smell came from people’s taps, Dalton says.
Griffith City Council and the federal government announced $ 7 million in funding in August to improve water quality in the lake, but Dalton says the work will take time to complete.
With warmer and drier weather trends creating the conditions for blue-green algae to thrive, Dunlop says more people could likely be exposed to BMAAs.
And if there is an environmental link to the disease, Rowe says it is imperative that researchers find it before more people are exposed.
He says that each of his patients has left him with questions.
“Why does this 38-year-old mother of two die? Why does this 55-year-old lawyer die of sporadic motor neuron disease? ” he says.
“If you are not concerned about the tragedy of this disease and what it does to people, their partners and their families, you should not be caring for these people.”
George is Digismak’s reported cum editor with 13 years of experience in Journalism