Article – A small cafe in Saint John serves as my meeting point with Marie Tremblay. Her hands curl around a ceramic mug as she describes her brother’s symptoms – the hallucinations, the rapid weight loss, the way his body sometimes jerks involuntarily. Pierre was diagnosed two years ago with what officials initially called a “mystery neurological syndrome.”
“They told us they’d have answers,” Marie says, her voice steady but tired. “Every few months, it’s another delay.”
Pierre is one of 48 patients identified in a cluster of neurological cases that first gained attention in early 2021. What began as a public health investigation into a potentially new disease has transformed into a controversy over transparency, diagnostic approaches, and what some families see as abandonment.
Last week, the New Brunswick Department of Health announced yet another postponement of their final report on the cluster, initially promised for January 2022, then pushed to last fall, and now delayed indefinitely. Officials cite “additional analysis requirements” as the reason.
For affected families, each delay represents more than an administrative setback – it means living in prolonged uncertainty. Some, like Marie, have become reluctant advocates while caring for loved ones with debilitating symptoms.
“We understand the complexity,” Dr. Jennifer Russell, New Brunswick’s Chief Medical Officer of Health, told me during a brief phone interview. “But we need to ensure our conclusions are scientifically sound before releasing them publicly.”
The cluster initially prompted concerns about a potentially novel prion disease or environmental toxin exposure. Early patients presented with a combination of symptoms including memory problems, muscle wasting, hallucinations, and rapidly progressive dementia – symptoms similar to Creutzfeldt-Jakob disease (CJD), but with negative test results for known prion diseases.
In October 2021, the provincial oversight committee suggested the cases represented “misdiagnoses and missed diagnoses” of known conditions rather than a new disease. This conclusion sparked backlash from patients, families, and some neurologists who felt the investigation was prematurely shut down.
Dr. Neil Cashman, a neurologist at the University of British Columbia who specializes in prion diseases, expressed concern about the handling of the investigation. “Clustering of neurological diseases with similar presentations warrants thorough investigation,” he explained. “Even if these turn out to be known conditions, understanding why they appeared as a cluster remains important.”
Environmental factors have remained a consistent concern among affected families. New Brunswick has a history of industrial activity, including pulp and paper mills and mining operations. The province’s blue-green algae blooms have also raised questions about potential neurotoxin exposure through BMAA (β-Methylamino-L-alanine), a compound previously linked to neurological conditions.
Walking along the Kennebecasis River with Tim Beatty, whose father died after experiencing symptoms consistent with the mystery syndrome, I notice how the conversation inevitably turns to environmental concerns. Tim points to spots where he and his father used to fish.
“Dad ate from these waters his whole life,” he says. “We all did. Now I wonder if that’s what took him.”
The Health Department has repeatedly stated that testing for environmental toxins, including BMAA, has shown no evidence of a common exposure. Yet families question whether testing has been comprehensive enough, particularly given the rural and diverse locations where patients live.
The investigation’s approach has drawn criticism from public health experts as well. Dr. Alier Marrero, the neurologist who initially identified the cluster, was removed from the official investigation but continues to see patients with these symptoms.
“Science takes time,” Dr. Marrero told me when we met at his clinic in Moncton. “But patients need support while we search for answers.”
What makes this situation particularly challenging is the lack of centralized care for patients while the investigation continues. Many families report navigating complex healthcare systems alone, traveling to multiple specialists, and struggling with mounting costs.
Data from the New Brunswick Health Council shows that neurological care access remains a challenge across the province, with some regions having wait times exceeding 18 months for neurologist consultations. This systemic issue compounds difficulties for families seeking answers.
Statistics Canada data indicates New Brunswick has one of the oldest populations in Canada, with 23.1% aged 65 and older. Age-related neurological conditions are expected to increase, making the distinction between known disorders and potentially novel conditions increasingly important.
The provincial government has promised $3.5 million for enhanced neurological services and research, though families say they’ve seen little concrete change in care access.
When I visited the Department of Health headquarters in Fredericton, officials emphasized the scientific rigor behind their approach. “We’re following evidence-based protocols,” explained Dr. Susan Thomson, who sits on the oversight committee. “The pattern suggests known conditions that were previously underdiagnosed.”
Yet this explanation fails to comfort patients like James Woodward, who I met at his small farm outside Bathurst. At 52, the former construction worker now uses a walker and struggles with speech.
“I’ve been tested for everything,” he says, frustration evident. “They keep saying it’s something else, then something else. Meanwhile, I get worse.”
As evening falls across the Bay of Fundy, I think about these families caught between science, bureaucracy, and lived experience. What began as a medical mystery has evolved into a case study of how health systems respond when confronted with uncertainty.
Perhaps the greatest challenge isn’t just identifying what this condition is, but how to care for people while that process unfolds. For Marie, Tim, James, and dozens of others, the delayed report represents more than missing information – it symbolizes lives suspended in waiting.
“I don’t even need them to have all the answers,” Marie says as we part ways. “I just need them to keep looking.”
