The government of New Brunswick has announced that its long-awaited report on a mystery brain illness will not be ready until late December. Instead, the province will share all raw patient data with federal health experts for a full review.
This illness has affected more than 200 people with symptoms ranging from memory loss and muscle spasms to vision problems. Families and patients had been asking for months that the federal Public Health Agency of Canada (PHAC) review every piece of data — not just summaries — and now their demand has been met.
For many patients, this decision feels like a victory.
One of the strongest voices has been Stacie Quigley Cormier, whose 23-year-old stepdaughter Gabrielle is among the youngest affected. Gabrielle now struggles with memory, vision, and mobility. Stacie called the news “a big win” for patients.
Back in June, Stacie and Sarah Nesbitt, both acting as liaisons between patients and the government, wrote an open letter to the premier. They were frustrated that only summarized information had been given to PHAC. They believed the raw data was crucial for experts to understand what was truly happening.
Neurologist Dr. Alier Marrero, who has been treating many of these patients, also strongly supported sharing the full data. He argued that without raw numbers, federal experts could not reach meaningful conclusions.
The main focus of the investigation has been whether environmental factors are linked to the illness. Elevated levels of heavy metals and herbicides, such as glyphosate, have been found in some patients.
Families accused the province of “cherry-picking” data by using phrases like “higher than normal levels” without giving the exact numbers. Now that raw data will be reviewed, federal scientists will have the full picture.
The government confirmed that it formally asked PHAC in early August to take on a detailed review. Health Minister Dr. John Dornan praised the work done so far but said outside expertise was needed to fully understand these complex cases.
PHAC has agreed. Experts from PHAC and Health Canada — including doctors, scientists, and epidemiologists — will examine the information. They will conduct an independent analysis, covering not only environmental data but also medical findings.
While families welcome the federal review, they still want Ottawa to take full leadership of the investigation. Patients argue that only a formal national public health inquiry can uncover the true cause of the illness.
Dr. Marrero estimates that nearly 500 patients across seven provinces may now have similar unexplained neurological symptoms. These include muscle spasms, hallucinations, memory loss, and rare antibodies. About 50 patients have already died.
Families fear that without urgent action, more lives will be lost.
The federal government insists that provinces are responsible for health matters in their regions. PHAC explained that while it can support, the main responsibility remains with New Brunswick.
Earlier, a small group of patients had been reviewed by provincial health officials and later by an international study. Both concluded the symptoms could be explained by known illnesses such as Alzheimer’s or Parkinson’s. But patients and families rejected those findings, saying too many questions remain unanswered.
The premier has also said more work is needed to explain what is happening.
Before federal scientists can begin their review, the province must secure patient consent. Health officials are working on agreements that will protect personal privacy while allowing raw data to be shared.
The chief medical officer of health, Dr. Yves Léger, said the process has already been underway for months. He added that the extra time will make the final report stronger and more reliable.
For now, patients and families face more waiting. Many are living with worsening symptoms, and some are frustrated by the delay. But patient groups stress that having all the raw data reviewed is worth the extra time.
As Sarah Nesbitt said, “We wanted all raw data. Now we have it. A lot can be done in those extra months.”
The hope is that with federal experts now fully involved, New Brunswick’s mystery brain illness will finally be understood — and that patients and their families will get the answers they deserve.
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