N.B. completes data analysis phase of mystery brain illness investigation
Results submitted to Public Health Agency of Canada for scientific review
New Brunswick has completed the data analysis phase of its investigation into an undiagnosed neurological illness affecting hundreds of people and has submitted its results to the Public Health Agency of Canada for scientific review.
No information about New Brunswick's findings into the mystery brain illness, first flagged by Moncton neurologist Dr. Alier Marrero several years ago, have been released.
But the main purpose of this latest investigation announced in March is to "further understand concerns" Marrero raised regarding elevated levels of certain environmental substances, such as heavy metals and the herbicide glyphosate, in some patients.
"While we know New Brunswickers are eager [to] see the results of the analysis, we will wait until the scientific review is completed before sharing findings as part of the final report," expected this summer, along with recommendations, Dr. Yves Léger, the chief medical officer of health, said in a statement Tuesday. He did not agree to an interview.
"Having the findings reviewed, both internally and by the Public Health Agency of Canada, will ensure we come out of this process with a robust understanding of what the data is telling us," Léger said.
"This will help us determine what needs to happen next to support affected patients and their families."
The data analysis included 222 patients for whom Marrero had completed the enhanced surveillance forms Public Health created to report the mysterious brain cases, with symptoms ranging from painful muscle spasms and hallucinations to memory loss and behavioural changes.
According to a letter Marrero wrote to federal and provincial officials in February, the number of people suffering from unexplained neurological symptoms has jumped to more than 500 across New Brunswick, Nova Scotia, P.E.I., Newfoundland, Ontario, Quebec and Alberta.
Fifty people have died.
Patients hoped for interim report
Patient advocate Stacie Quigley Cormier, whose stepdaughter Gabrielle is one of Marrero's patients, said they're happy to see the New Brunswick investigation moving forward.
But patients still feel in the dark about the process, she said. So she has requested clarification about what exactly the federal agency's role entails.
"We know that Public Health Agency of Canada is … reviewing files, but we don't know what exactly that looks like. So that's where we stand right now. We're looking for some more transparency," said Quigley Cormier.
"When patient data is getting reviewed, who is reviewing it, what's the mandate during the review — that kind of thing."
Patients are also disappointed New Brunswick's preliminary findings have not been released, Quigley Cormier said. They had hoped to see an interim report.
"It would have given us a gauge and maybe some more communication around … the inner workings and things that are going on behind the scenes more in-depth, and that would give patients a lot of confidence."
The Public Health Agency of Canada's review may include "feedback on methodology, analysis, key findings and potential next steps, as appropriate," according to spokesperson Anna Maddison.
She did not respond to questions about how long the review will take.
"PHAC continues to maintain an open dialogue with [N.B.'s chief medical officer of health], and remains ready to provide additional support, if requested," Maddison added.
No mystery disease, study found
A scientific study published earlier this month in the Journal of the American Medical Association, known as JAMA, found no evidence of a mystery brain disease in New Brunswick.
Researchers reassessed 25 of 222 patients diagnosed by Marrero as having a "neurological syndrome of unknown cause" and concluded all of the cases were attributable to well-known conditions, such Alzheimer's and Parkinson's, functional neurological disorder, traumatic brain injury and metastatic cancer.
An investigation under the former Higgs government reached a similar conclusion in February 2022. An oversight committee consisting of six neurologists found that the patients did not have a common illness and offered "potential alternative diagnoses" for 41 of the 48 patients.
Premier Susan Holt has said it's critical the province push ahead with its current investigation because "there's too many unanswered questions" about what's making New Brunswickers sick.
Last summer, Holt pledged to launch a transparent scientific investigation if elected in the October provincial election. New Brunswickers suffering from unexplained symptoms and the doctors trying to help them had "been ignored" for too long and deserved answers, she said in a statement at the time.
It was early 2021 when the public learned that Public Health was monitoring more than 40 New Brunswick patients, primarily on the Acadian Peninsula and in the Moncton region, with symptoms similar to those of Creutzfeldt-Jakob disease, a rare and fatal brain disease.
The first case dated back to 2015, according to an internal memo.
New information line, mental health support
The province has also launched an information line to support New Brunswickers during this investigation, Health Minister Dr. John Dornan announced Tuesday.
People can call 1-866-506-9355 between 8 a.m. and 8 p.m. to get information about the investigation and its status, he said. The same information is also available through a website launched in March.
Mental health support will also be provided 24 hours a day, seven days a week by a team of trained clinicians, Dornan said.