Where exactly are the mysterious cases of neurological diseases in New Brunswick? Public health agencies will not say

Public health officials will not reveal precisely where in New Brunswick more than 40 cases of the mysterious 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 was discovered in New Brunswick immediately put residents in several communities on edge.

Identified as a cluster in 2020, a first case was identified retroactively in 2015, according to a public health note sent this month to health professionals.

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

Although the mysterious disease bears similarities to Creutzfeldt-Jakob disease, known as CJD, a rare and fatal brain disease, the note notes that “CJD tests have so far ruled out the diseases. to known prions “.

But there was little additional information provided by public health, and on Saturday the peninsula’s mayors said the lack of information had fueled rampant speculation.

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

“Residents are anxious, they ask ‘Is this moose meat? Is it deer? Is it contagious ?’ We need to find out, as quickly as possible, what is causing this disease. “

On Monday, Green Party leader David Coon blasted public health’s handling of cases on multiple levels, saying it was “unacceptable that information about the health of so many people is withheld.”

Green Party Leader David Coon said Public Health should hold a briefing to let New Brunswickers know what’s going on, rather than ‘hiding’ information and letting the fear escalate . (File photo Jacques Poitras / CBC)

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

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

He noted that the number of cases jumped 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 amazing to me that public health is so quiet about it… they haven’t done anything to keep us informed.”

Coon said Green Party MP for Memramcook-Tantramar, Megan Mitton, had previously asked about it in the Legislature and her party would continue to push for more information.

“When there is a lack of information, you are afraid,” he said.

“This is not what we want. They have to be transparent, they have to tell people how these cases are distributed, in which areas of the province in particular, they have to provide a public briefing. Let people know about the state of the research… Let us all know what’s going on. “

Chief Medical Officer of Health Dr. Jennifer Russell said 35 of the 43 cases were in the Acadian Peninsula, but did not provide further details on where they were identified. (Submitted by the Government of New Brunswick)

35 of the 43 cases are in the Acadian Peninsula

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

The provincial public health department did not respond to requests for information on where, specifically, in the northeast or the Moncton area, the cases were identified.

And on Monday, the senior scientist heading the federal branch of the investigation said he couldn’t provide specific information either.

“This is very sensitive information, especially in a very small jurisdiction, in terms of population, like New Brunswick,” said Michael Coulthart in an interview. “I can tell you it’s available to us, but we can’t share it any more.”

Coulthart is the director of the federal Creutzfeldt-Jakob disease surveillance system, which supports New Brunswick’s own investigation of the cluster. He said he wanted to assure anxious New Brunswickers that experts across the country were working to tackle the root cause.

“We are conducting this investigation with all the vigor possible and consulting with a wide range of experts, and all the types of expertise we need are available in Canada.

While the federal teams will not come to New Brunswick to investigate the cluster, they will, at New Brunswick’s request, provide “support in any way possible”, including state-of-the-art laboratory services and expertise. when it comes to neurological disease, Coulthart said.

Mysterious NB disease: what we know so far

What is that?

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

When was it discovered?

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

When was it made public?

  • An internal March 5 memo from Public Health to health 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 northeastern New Brunswick and the Moncton area in the southeast.

How many cases are there?

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

Who was affected?

  • The disease affects all age groups and affects both men and women equally, according to the public health note. About half of those affected are between 50 and 69 years old.

What are the symptoms?

  • Symptoms include changes in behavior, trouble sleeping, unexplained pain, visual hallucinations, problems with coordination, 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 sought?

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

Who is doing the research?

  • The disease is being investigated 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, Michael Coulthart, senior scientist and director of the Creutzfeldt-Jakob Disease Surveillance System, is leading the research.

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