Dr. Michael Strong was one of the first experts consulted when reports of an unknown neurological illness publicly emerged in the Maritime province in 2021. Dr. Strong in his lab at Western University’s Robarts Research Institute in London, Ont. on Dec. 19, 2024.Geoff Robins/The Globe and Mail
An independent commission is needed to investigate whether an unknown neurological disease is afflicting people in New Brunswick, and to cut through the politicization of the issue, says a neurologist and past president of the federal agency that funds health research in Canada.
Michael Strong, a clinical neurologist who served as president of the Canadian Institutes of Health Research (CIHR), says that because of the distrust built up over years between patients and provincial health officials, New Brunswick’s new Liberal government needs to keep its distance from its planned investigation into the matter.
“Nobody is going to be happy with a governmental board,” said Dr. Strong, a distinguished university professor of clinical neurological sciences at Western University. “They should be – let me be clear on that, right – but we know how these things unfold.”
Dr. Strong was one of the first experts consulted when reports of an unknown neurological illness publicly emerged in the Maritime province in 2021. A subsequent Public Health New Brunswick investigation involving six neurologists looked at the first 48 cases – 46 of which were referred to the government by a single neurologist, Dr. Alier Marrero – and found no evidence of a shared common illness or unknown syndrome. The 2022 provincial report also said 10 deceased people had an alternative diagnosis, including six confirmed by autopsy. While there have been disagreements around the investigation’s methodology, Dr. Strong said he reviewed the report and the autopsies and has no reason to doubt those conclusions.
However, those findings led to an outcry from patients, public-health advocates, some federal scientists, and Dr. Marrero, who says he’s seeing hundreds more cases of unknown neurological illness. This has resulted in demands for a deeper scientific investigation – a call New Brunswick’s new premier, Susan Holt, promised to fulfill in her election campaign. That investigation began in mid-December, with the province engaging the Public Health Agency of Canada (PHAC).
But now, more than four years after the first cases emerged, Dr. Strong believes that the increasingly politicized discourse, combined with a growing number of cases, demands an independent investigation.
Dr. Marrero, a neurologist at Dr. Georges-L.-Dumont University Hospital Centre in Moncton, says he’s now identified 371 patients with an unknown neurological illness, as well as 116 suspected cases. He says 44 people have died from it.
Given the results of the first investigation, and the striking increase in the numbers of cases, Dr. Strong is concerned about whether something was missed, a small subset that needs more scientific rigour to resolve whether there is a discrete, unidentified illness.
”If I didn’t think there was a potential of a kernel of something deep down in there, I would be saying, ‘Walk away from this.’ … But I’m not there yet,” he said. “I’m not convinced that that’s where things are sitting.”
Patients seen by Dr. Marrero report experiencing muscle atrophy, hallucinations, depression and sleep disorders, among other symptoms, as a result of their neurological illness. Medical experts have floated several theories of what might be causing people to become sick, including environmental causes such as exposure to the herbicide glyphosate, used in forestry, or cyanobacteria, caused by blue-green algae, making its way into the water or food supply.
In 2021, Dr. Strong, who was then president of CIHR, began receiving calls about the cases because of his decades of research on environmental neurotoxicology and its association with neurodegenerative disorders, including investigating the high prevalence of ALS among the people of Guam. (In May of 2021, Dr. Strong stopped representing CIHR at meetings with the federal public-health agency and New Brunswick, declaring a conflict of interest because he’d consulted with Dr. Marrero and PHAC as a neurologist.)
Dr. Strong said New Brunswick’s approach of investigating with the help of PHAC is not unreasonable, recognizing that Ms. Holt promised to move quickly, but he questions the likelihood that the people of New Brunswick, and the neurologist who has reported the vast majority of the cases, will accept the process and whatever the results are.
An independent, arm’s-length process would protect the New Brunswick government from that to some degree, he said, but it would be expensive and take considerably more time – about two years. “You can do it right or you can do it fast,” he said.
Neurological diseases are complex and can be notoriously difficult to diagnose, sometimes leading to misdiagnoses or disagreements between neurologists.
Trying to get to the bottom of these cases requires “absolute clinical and scientific rigour to sort through,” said Dr. Strong, something an independent commission could take on. The criteria from the past provincial oversight committee is a great starting point, he added, but it needs to be refined. And then comes the hard work – to figure out what may be unique in a smaller subset of unexplained cases that need further probing, including on-the-ground work to be done by anthropologists, population experts and epidemiologists.
“This is not for the faint of heart. If you’re going to do this, somebody’s giving up a chunk of their life to do it,” he said. “And you need jointly the federal government and the provincial government to say, ‘We agree with this approach.’”
New Brunswick health officials have been criticized for declining $5-million in emergency research money from the CIHR in the spring of 2021 and for cutting out federal experts, some of whom criticized this decision in leaked internal e-mails, suggesting the investigation was cut short for political expediency.
Michael Coulthart, head of the PHAC’s Creutzfeldt–Jakob Disease Surveillance System, who was involved in the initial investigation, has said he believes something real is going on that cannot be explained by the alleged bias or personal agenda of one neurologist. (New Brunswick’s 2022 review singled out Dr. Marrero for repeatedly referring these cases, and raised questions about potential bias on his part.)
“My strongest hypothesis is that there is some environmental exposure – or perhaps a combination of exposures – that is triggering and/or accelerating a variety of neurodegenerative syndromes,” Dr. Coulthart wrote in an e-mail to another PHAC employee in October, 2023. He added that the potential complexity of the cause allowed politicians “to conclude nothing coherent is going on.”
It’s because of this heated political discourse that the investigation should be completely separate from government, said Dr. Strong – not because he believes anything politically motivated happened the first time around, but because it’s become a major concern and a political issue in New Brunswick.
“I have infinite sympathy for what’s going on here – there’s nothing worse than a degenerative neurological disorder and you have no idea what’s going on,” Dr. Strong said. But, he added, it can be distressing for patients to believe they have an unknown disease only to later find out it’s something else altogether.
Dr. Strong says that in order for such a probe to be successful, Dr. Marrero needs to step aside from the process. He said Dr. Marrero should continue to see his patients, but shouldn’t be part of a commission examining them.
He cast no aspersions on the New Brunswick neurologist, adding that “he’s been inundated with cases, he’s trying to deal with it, he kind of got caught in a bit of storm with all this happening, but he cannot be part of the solution of sorting this through.”
Dr. Marrero disagreed. In an interview, he said he knows his patients best and believes he should be contributing to any investigation, as he’s been gathering evidence that should be analyzed. “They should at least be hearing what I have to say, and I think my patients would also expect me to be there,” he said.
Over the past few months, Dr. Marrero and New Brunswick’s acting chief medical officer of health, Yves Léger, have had tense communications regarding new lengthier submission forms the doctor has been required to fill out to report new cases. So far, Dr. Marrero has completed the forms for 39 patients – a fraction of the total 371. New Brunswick Health Minister John Dornan said in an interview that the forms are being adjusted to make it easier for Dr. Marrero to complete.
All cases need to be fully reported before any type of epidemiological analysis can occur, said Kerry Robinson, acting vice-president of PHAC’s Infectious Diseases and Vaccination Programs Branch. Until that happens, she said, theories and hypotheses are speculative. “I think there’s some public misconceptions that there has been analysis of the many cases that have been reported informally or otherwise in New Brunswick, and that is not the case.”
Dr. Dornan said the investigation, overseen by Dr. Léger, will be independent. He said bringing in PHAC formally is a way to ensure it “is removed from New Brunswick and well regarded.”
“We feel that this is an independent agency that’s reviewing this together with us, and I don’t think you can get a better oversight committee than the Public Health Agency of Canada.”
There’s still concern among patients and politicians, however, who believe the issue was swept under the rug last time and may be again. After meeting with patients suffering from unknown neurological illness at a community meeting in Moncton this past Sunday, Megan Mitton, Green Party MLA from Memramcook-Tantramar, called for more transparency.
“I hope that things go better and that we have the science and data collected and find answers and prevent other people from getting sick,” she said. “We need to see this go differently.”