N.B. investigation into mystery brain illness to begin within months, says Susan Holt

Premier Susan Holt says her government will launch a transparent scientific investigation by early next year, with help from the federal government, into the mystery brain illness a Moncton neurologist claims is now affecting hundreds of New Brunswickers and people from six other provinces.

Whether the illness is new or not has been a long-standing debate between Dr. Alier Marrero and New Brunswick’s Public Health department.

Holt said Prime Minister Justin Trudeau has confirmed the $5 million previously offered to the province to study the neurodegenerative illness, which causes symptoms ranging from painful muscle spasms to memory loss and behavioural changes, is “still on the table,” along with the support of the Public Health Agency of Canada.

“It’s hard to predict how long will it take us to find out what’s making people sick, but the time it takes to get started is something we can control,” she said in an interview.

“There’s certainly urgency because people are scared and for good reason, right? We can barely diagnose this disease, there isn’t treatment for it, and people don’t know what’s causing it, so they don’t know how to change their own behaviours to avoid it.”

The Blaine Higgs government launched an investigation in early 2021 into an original cluster of 48 patients, aged 18 to 85, primarily on the Acadian Peninsula and in the Moncton region, consulting experts from both levels of government.

But within three months the province created its own oversight committee, which included six neurologists, a representative from Public Health and someone from each of the two health authorities, to review medical records, analyze questionnaires about where patients had lived and worked, what they had eaten, and examine research, among other things.

WATCH | ‘People are scared and for good reason,’ Holt says of mystery illness:

Holt pledges swift action on mystery brain illness

Premier Susan Holt is following through on her election pledge to launch a scientific investigation into the neurodegenerative symptoms that a Moncton neurologist says are affecting hundreds of New Brunswickers and people from six other provinces.

By February 2022, the committee concluded there was no mystery neurological syndrome and found “potential alternative diagnoses” for most of the patients, including Alzheimer’s disease, Lewy body dementia, and post-concussion syndrome.

In October 2023, federal microbiologist Michael Coulthart, who is the head of Canada’s Creutzfeldt-Jakob disease surveillance system and was part of the initial investigation, said in an internal email obtained by CBC News that he was “essentially cut off” from working on the file for reasons he could “only discern to be political,” but he believes there is “something real going on” in New Brunswick.

Election promise

During the election, Holt said New Brunswickers suffering from unexplained symptoms and the doctors trying to help them had “been ignored” by the Higgs government “for far too long.”

“New Brunswickers deserve answers,” she said in a statement at the time.

Her new Liberal government has  released mandate letters she wrote to each cabinet minister, outlining their key priorities and responsibilities. Health Minister Dr. John Dornan’s long list of commitments includes “a scientific review into the mystery brain disease.” No timeline is indicated.

Holt could not immediately say how long it will take to get the money from Ottawa. But now that the federal commitment is secured, she can direct Public Health New Brunswick to begin to plan the study, she said.

“We need to get the right team together to look through the data and the environments and to run a complete and thorough scientific investigation until we can answer the question with some confidence and reliability that this is what’s making New Brunswickers sick.”

People can expect to see progress as early as January, Holt said.

The premier said she doesn’t know why the former government declined federal assistance but did say she thinks it “maybe was the wrong [decision] to make and absolutely needs to be revisited,” particularly now that “more and more” cases have come forward, including ones in other provinces.

Growth unprecedented, neurologist claims

Marrero, who originally identified what he believes to be a new disease to health officials, said he has now notified Public Health of 366 patients from New Brunswick and six other provinces, including Nova Scotia, P.E.I., Newfoundland, Ontario, Quebec and Alberta, through a standard one-page form.

Of those patients, 120 are under age 45, said Marrero.

Forty-two people have died, he said.

An additional 101 cases are under investigation, and he believes there are “hundreds more.”

Department of Health spokesperson Sean Hatchard did not immediately respond to a request to verify Marrero’s numbers, but did confirm Marrero has submitted “initial notification forms” for people whose primary residence is outside New Brunswick.

Under the Public Health Act, medical professionals must report notifiable diseases, including certain “unusual illnesses” to the department by filling out a one-page form.

“In addition, to be able to better assess this particular situation, the department created an enhanced surveillance form to collect additional information on each submitted notification,” said Hatchard.

Public Health has received “only 29 completed notifications” from Marrero since May 2023, he said.

Marrero contends the second form, created last year, requires “extensive” information, such as all the doctors a patient has seen and when, all diagnostic test results, such CT and MRI reports, and all biomonitoring, such as blood or urine tests related to pesticide, herbicide or heavy metals exposure. 

The forms take “an immense amount of time,” he said.

Patients and families hopeful

New Brunswick patients and their families are hopeful Holt will “do the right thing” and not “succumb to any kind of pressure not to