N.B. neurological syndrome: Researcher, advocates aim to circumvent province

Click to play video: 'Do New Brunswick neurological syndrome answers add up?' Do New Brunswick neurological syndrome answers add up?
WATCH: A Sackville-based mathematical biologist says he hopes the key to New Brunswick’s neurological syndrome of unknown cause could be just an equation away – and plans to do the math independently.

A Sackville-based mathematical biologist says he hopes to independently research New Brunswick’s neurological syndrome of unknown cause.

If you’ve never heard of mathematical biology, you’re not alone, but Matthew Betti’s made a career of it – spending much of the past two years modelling data around COVID-19 and health-care demand for the Public Health Agency of Canada.

During that time he says he’s picked up a few tricks.

“The key is to have good data and a lot of it,” says Betti.

“That can solve a lot of problems in general in the world.”

Read more: Still more questions, concerns surrounding New Brunswick’s neurological syndrome

Now, Betti hopes he can apply that logic to the mysterious neurological syndrome plaguing New Brunswick.

Story continues below advertisement

He says he first learned of the matter in March 2021, when internal government memos pondering the problem leaked to the media.

“I thought this would be a great opportunity for mathematical modelling,” he says.

“At least, it can help narrow down places to look or the most likely places to look.”

Theoretically, plotting commonalities between the cases of interest could yield trends and allow forecasting.

Betti says he took that idea – and his expertise – straight to New Brunswick’s Department of Health, offering to lend a hand in the investigation.

Click to play video: 'New Brunswickers seek answers about neurological syndrome' New Brunswickers seek answers about neurological syndrome
New Brunswickers seek answers about neurological syndrome – Mar 25, 2021

The Department of Health confirms to Global News Betti made contact with the acting director of epidemiology in March 2021.

Story continues below advertisement

“She thanked Professor Betti for his interest but informed him that the investigation was in the early stages and that she would contact him if needs arose,” says Bruce MacFarlane, director of communications.

He says the data Betti requested is “still being compiled.”

“So I let it go,” says Betti, “hoping to get some contact.”

He says he lost hope though when the province released a public-facing report in October.

Read more: N.B. health minister questions validity of mysterious neurological disease after report

“I don’t know if I would’ve been comfortable drawing the conclusions they drew.”

Betti says he believes so strongly in the potential benefits of the modelling he proposed, he’s started the process of conducting his research independently – starting with reaching out to some of those at the heart of the so-called cluster.

“There’s a whole host of statistical tools that are designed strictly for finding non-obvious relationships between data points,” says Betti.

“The mathematical part of my brain equates patients with data points because that’s what they are once you have all this data, but it’s important to remember they are still people.”

Story continues below advertisement
Click to play video: 'Family of New Brunswick woman with rare illness launches fundraiser' Family of New Brunswick woman with rare illness launches fundraiser
Family of New Brunswick woman with rare illness launches fundraiser – Dec 22, 2021

Advocates say something’s got to give

Steve Ellis, whose father has been believed to have been suffering from this syndrome, says he welcomes Betti’s research.

“Ultimately though,” Ellis says, “what needs to happen now is for the Government of [New Brunswick] to resume their work with the federal experts and get environmental testing done.”
“The Government of [New Brunswick] hasn’t done any investigating and they need to start.”
Story continues below advertisement

Raising that same concern, Canadian health advocacy organization has been petitioning the federal government to take control of the investigation.

Read more: Families, advocates question transparency of investigation into N.B. neurological syndrome

“It is their right to have a scientific investigation,” says BloodWatch co-founder Kat Lanteigne.

“It is their right to a life with dignity.

“It is not the right of the Health Minister in New Brunswick to stymie a scientific investigation for alternative, political purposes.

“That is deeply unfair to those people,” Lanteigne says.

BloodWatch sent an open letter to Prime Minister Justin Trudeau Monday, urging action on a level above New Brunswick’s legislature.

The province still says an oversight committee report further to its October report will come soon.

Global News asked for more specifics around when that might come but didn’t get an answer.

Lanteigne expects it won’t make much of a difference.

“It’s essentially another press release for the province regardless of what it says.”

In the meantime, Betti says he’s submitted his research proposal for ethics approval, having already made contact with dozens of those impacted by whatever this syndrome may be.


Sponsored content