What We Know So Far About the Mysterious Potential Brain Disease in New Brunswick

What We Know So Far About the Mysterious Potential Brain Disease in New Brunswick
New Brunswick Premier Susan Holt in a file photo. The Canadian Press/Adrian Wyld
Jennifer Cowan
Updated:
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New Brunswick is launching the next phase of its inquiry into a potentially unidentified brain disease that has affected hundreds of individuals in recent years, including at least 16 from outside the province.

Provincial health authorities have launched the data analysis phase of the inquiry and will work with the Public Health Agency of Canada to analyze data on 222 verified patient cases of “undiagnosed neurological” issues, New Brunswick chief medical officer Dr. Yves Léger said during a press conference on March 27.

While the province has previously looked into concerns that a mysterious illness could be to blame for the unexplained neurological issues that have cropped up in some patients, health authorities said they were unable to establish a definitive link between the cases.

A growing number of cases and public demand for answers has the province again looking into the potential problem.

“I know many New Brunswickers, including affected patients and their families, are concerned about this issue, and so are we,” Léger said.

“We want to get answers for these patients. The results of this analysis and scientific investigation will help us to determine what next steps are needed.”

Here is what we know so far about the potential brain illness.

What is the Mystery Illness?

The neurological condition that first emerged in New Brunswick in 2015 exhibits symptoms that resemble those of Creutzfeldt-Jakob disease (CJD), a rare and fatal degenerative disorder of the brain. However, New Brunswick Public Health ruled out any connection to CJD in its earlier inquiry.
Among the symptoms reported are blurred vision, delusions and hallucinations, bouts of aggression or other behavioural changes, memory problems, pain in the arms or legs, repetitive speech, imbalance, and sudden weight loss.

When Did the Inquiry Start?

The current inquiry expands upon an investigation initiated by the province in 2021, when 48 patients first began exhibiting unexplained neurological symptoms.

Forty-six of the 48 people were the patients of a single Moncton neurologist, Dr. Alier Marrero, who then shared his concerns with Public Health New Brunswick (PHNB) that the cases could be connected.

Then-Health Minister Dorothy Shephard appointed a committee of six neurologists from the province, along with co-chairs from the two regional health authorities and a medical officer of health, to conduct a clinical review.

The results were disclosed in a 2022 public health report which determined the patients were not suffering from a shared illness. Instead, the committee found possible alternative diagnoses for 41 of the patients, including Alzheimer’s disease, various forms of dementia, post-concussion syndrome, and cancer.

Ten of the original 48 patients died, and autopsies were performed on six of them. The results indicated the conditions were connected to Alzheimer’s disease, Lewy body disease, or cancer.

Dr. Marrero, the neurologist who first alerted PHNB about the initial cluster of cases, came forward again in 2023, expressing concern that a rising number of his patients were displaying unusual symptoms.

Nearly 400 individuals have come forward since then with reports of symptoms that include memory issues, severe pain, and muscle spasms, Léger said.

The office of the chief medical officer of health and the Vitalité Health Network have been working with the neurologist since then to gather and validate the necessary patient information required for further investigation, Léger said.

His office has now received the finalized enhanced surveillance forms for 222 of the nearly 400 patients from Marrero.

The province developed enhanced surveillance forms for Marrero to complete in early 2023 because the existing one-page notification forms for notifiable diseases and events lacked sufficient data, Léger said.

Now that the files have been compiled, there is enough data for the province to analyze with the help of the Public Health Agency of Canada, he added.

This phase of the analysis is expected to be completed by summer and a report will be issued detailing the findings and recommending next steps.

Family members and patients suffering from a mystery neurological disease gather at a hotel in Fredericton, New Brunswick, to call for an investigation, on March 28, 2023. (The Canadian Press/Hina Alam)
Family members and patients suffering from a mystery neurological disease gather at a hotel in Fredericton, New Brunswick, to call for an investigation, on March 28, 2023. The Canadian Press/Hina Alam

Where Has the Ailment Been Identified?

While most of the nearly 400 cases involve New Brunswick residents, Léger indicated at the press conference that he has also received reports of illnesses from patients in Nova Scotia, Newfoundland, Prince Edward Island, Quebec, Ontario, and Alberta.

The Epoch Times contacted health authorities in each area to discover how many patients came from outside of New Brunswick, but did not receive a response from most of the provinces.

Health authorities in Nova Scotia, which has the highest number of cases outside New Brunswick, responded to an Epoch Times inquiry but declined to answer questions.

“New Brunswick is leading the investigation and is the best source of information on this matter,” the spokesperson for the Department of Health and Wellness said.

After sending follow-up questions to request patient numbers within Nova Scotia, The Epoch Times was again referred to New Brunswick’s chief medical officer.

Attempts to get a breakdown on patient numbers from New Brunswick were not answered.

Léger said at the press conference that he has shared updates on the inquiry with his colleagues in other provinces, but there have been no doctors from other provinces who have voiced concerns about a cluster of patients with unusual neurological symptoms.

“The vast majority of the patients are New Brunswick patients,” he said, noting that most of the 16 patients from outside the province are from Nova Scotia.

“At least six of the 16 have either current or previous Medicare numbers,” he added. “So we know that at least for some of them, potentially more, there is some sort of connection to New Brunswick.”

What Is the Cause?

No cause has been determined as yet for the mysterious ailment, but Léger said the main purpose of the current investigation is to gain a deeper insight into potential environmental factors.

Marrero flagged chemical exposure as a strong possibility, Léger said, noting that heavy metals and pesticides are the most likely culprits if chemicals are indeed to blame.

Health authorities are specifically looking into potential exposure to two herbicides at Marrero’s suggestion after the neurologist provided test results “suggesting elevated levels on some environmental substances,” Léger said. He noted that the inquiry with the federal health agency will examine possible exposure to the herbicide glyphosate and its metabolites, and glufosinate.

“If the findings of that review indicate that there are elevated levels of certain environmental substances in patients … then one of the next steps may be [determining] how are they being exposed,” Léger said.

Marrero has also reportedly asked for more tests to eliminate the possibility of environmental toxins, including beta-N-methylamino-L-alanine, which is generated by blue-green algae.

While the link to environmental culprits remains up in the air, Nova Scotia physician Chris Milburn said he’s glad the province is looking into it so that no stone is left unturned.

Milburn, a family and ER physician and former head of the emergency medicine for the Eastern Zone, said he’s skeptical that chemicals like pesticides are to blame for the symptoms patients are presenting. Pesticide exposure is commonly observed in populations with significant contact, such as farmers who routinely spray their fields, and the resulting symptoms tend to be consistent, he told The Epoch Times in an interview.

That is not the case with the current group of patients, he said.

“We’re seeing people with very different symptoms, of very different ages, very different areas, all scattered with no real pattern,” Milburn said.

Milburn said it is important to keep an open mind and not rule anything out without sufficient study, but he believes the most likely culprit of the undiagnosed neurological symptoms is a condition he described as a “social contagion.”

Milburn said individuals with undiagnosed health concerns may learn about a specific condition characterized by numerous symptoms. As public anxiety about this condition increases, their apprehension about potentially having it also rises, he said.

“If you tell people there’s a mysterious illness in this one area that’s affecting people, and they were there, and there’s a symptom list that is really, really long, people can start to say, ‘Well, maybe I do have that, because I have some of those symptoms,” he said.

Milburn argued the most likely explanation for the mystery disease is that patients have a neurological issue that can’t be explained by a known condition like ALS. These “waste basket or a catch-all diagnoses” are typically called lower motor neuron disorders or upper motor neuron disorders because there is no name for them, he said.

Marrero, who has largely stayed out of the public spotlight and could not be reached for an interview, has said he believes the patients are exhibiting a new, unknown disease.

“I believe that there is an unknown disease for which I see more and more cases and more and more young people who must have a diagnosis and who deserve to have a thorough research by teams, experts in the field, nationally and even internationally,” Marrero told Radio-Canada in 2022.

“I am convinced that it is gaining momentum, because I see it clinically.”

The patients and their family members also point to potential environmental factors.

Patient advocate Stacie Quigley Cormier, whose 23-year-old stepdaughter Gabrielle Cormier is one of the youngest patients from the initial group, told the CBC that environmental concerns were raised as far back as 2019.

A letter written in February by more than 70 patients and family members to  New Brunswick Premier Susan Holt urging a “call to action” noted that the Public Health Agency of Canada was the first to suggest a link to environmental influences.

Patients and advocates like Quigley Cormier have been asking for the federal health agency to spearhead the investigation for some time, and have raised concerns about insufficient transparency and potential provincial bias.

Léger told reporters during the March 27 press conference that he “firmly believes” the inquiry continues to fall under provincial jurisdiction.

“By and large, almost all the patients that have been reported to us are patients from New Brunswick or have a link to the province. This continues to be reported by mainly one physician in New Brunswick,” he said.