Where exactly are N.B.'s mystery neurological disease cases? Public health agencies won't say

Public Health officials won't reveal specifically where in New Brunswick more than 40 cases of a mystery neurological disease have been identified, citing the "sensitive" and "confidential" nature of the information.

News last week that a cluster of cases of an unknown neurological disease has been found in New Brunswick immediately had residents of several communities on edge. 

Identified as a cluster in 2020, a first case was retroactively identified in 2015, according to a Public Health memo sent this month to medical professionals.

The disease appears to be concentrated in the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast. Forty-three cases have been identified, and five people have died.

Although the mystery illness has similarities to Creutzfeldt-Jakob disease, known as CJD, a rare and fatal brain disease, the memo noted that "testing for CJD so far has ruled out known prion diseases."

• What's causing N.B.'s mystery neurological disease? Worried residents want answers

But there's been little further information provided by Public Health, and on Saturday, peninsula mayors said the lack of information has fuelled rampant speculation.

"We are very, very worried about it," said Yvon Godin, the mayor of Bertrand, a village at the northern tip of the peninsula.

"Residents are anxious, they're asking 'Is it moose meat? Is it deer? Is it contagious?' We need to know, as fast as possible, what is causing this disease."

On Monday, Green Party Leader David Coon blasted Public Health's handling of the cases on several levels, saying it's "unacceptable that information involving the health of so many people is being concealed."

'Why are we only hearing about this cluster now?'

Researchers started to gather a year ago to look at this, Coon said.

He noted that the case numbers took a jump in 2019, when 11 cases were identified, and again in 2020, when 24 cases were identified.

"So why are New Brunswickers only hearing about this cluster now?" Coon said. "It's extraordinary to me that Public Health has been so quiet on this … they haven't done anything to keep us informed."

• New Brunswick monitoring more than 40 cases of unknown neurological disease

Coon said Memramcook-Tantramar Green Party MLA Megan Mitton has already asked questions about this in the legislature, and his party will continue to press for more information.

"When there's a lack of information, you get fear," he said.

"That's not what we want. They need to be transparent, they need to tell people how are these cases distributed, in which areas of the province specifically, they need to provide a public briefing. Let people know what's the state of the research … Let us all in on what's going on."

35 of the 43 cases are on Acadian Peninsula

Dr. Jennifer Russell, the province's chief medical office of health, has said that 35 of the cases are on the Acadian Peninsula, which encompasses about 14 towns and villages. Eight suspected cases are in the Moncton area.

The provincial Public Health department has not responded to requests for information about where, specifically, in the northeast or the Moncton area the cases have been identified.

And on Monday, the senior scientist heading up the federal arm of the investigation said he could not provide specific information either.

"That is very sensitive information, especially in a very small jurisdiction, population-wise, such as New Brunswick," Michael Coulthart said in an interview. "I can tell you that is available to us but we cannot share it further."

Coulthart is the director of federal Creutzfeldt-Jakob Disease Surveillance System, which is providing support to New Brunswick's own investigation of the cluster. He said he wanted to assure anxious New Brunswickers that experts across the country are working to get to the root cause.

"We're undertaking this investigation with all possible vigour and consulting with a wide range of experts, and all of the kinds of expertise that we need are available in Canada.

While federal teams won't be coming to New Brunswick to investigate the cluster, they will be, at New Brunswick's request, "providing support in any way we can," including state-of-the-art lab services and expertise in neurological disease, Coulthart said.

N.B.'s mystery disease: What we know so far

What is it?

• An unknown neurological disease with similarities to Creutzfeldt-Jakob disease, a rare and fatal brain disease

When was it discovered?

• A single case was retroactively identified in 2015. Three years later, in 2019, 11 additional cases were discovered, with 24 more cases discovered in 2020 and another six in 2021. Five people have died. 

When was it made public?

• A March 5 internal memo from Public Health to health-care professionals was obtained by Radio-Canada and reported by Radio-Canada and CBC News on Wednesday, March 17.

Where are the cases?

• The disease has so far only been identified in New Brunswick. It appears to be concentrated on the Acadian Peninsula in northeast New Brunswick and the Moncton region in the southeast. 

How many cases are there?

• Forty-three cases have been identified. Of those, 35 are on the Acadian Peninsula and eight are in the Moncton region. 

Who has been affected?

• The disease affects all age groups and affects males and females equally, according to the Public Health memo. About half of the affected individuals are between 50 and 69 years of age.

What are the symptoms?

• Symptoms include changes in behaviour, sleep disturbances, unexplained pain, visual hallucinations, co-ordination problems and severe muscle and brain atrophy.

Is it contagious?

• Because the cause has not been determined, it is not yet known whether the disease is contagious.

What are the possible causes being researched?

• Despite many similarities, tests for Creutzfeldt-Jakob disease have so far ruled out known prion diseases.
• Scientists are currently looking into the possibility that this is a new variant of a prion disease — or a new disease entirely.
• Neurologists and scientists suspect the cause might be exposure to an as-yet-undetermined environmental toxin.   

Who's researching it?

• The disease is the subject of investigation by an all-Canadian team of neurologists, epidemiologists, scientists, researchers and other experts.
• Here in New Brunswick, Moncton neurologist Dr. Alier Marrero is leading the research. In Ottawa, senior scientist and Creutzfeldt-Jakob Disease Surveillance System director Michael Coulthart is leading the research.