Committee struck to investigate the nearly 50 cases of a mysterious N.B. brain disease

Click to play video: 'New Brunswick announces oversight committee to review 48 cases of mysterious brain syndrome'
New Brunswick announces oversight committee to review 48 cases of mysterious brain syndrome
New Brunswick Health Minister Dorothy Shephard announced that the province is implementing a joint oversight committee on the clinical and investigative levels to help with an extensive medical investigation into a neurological syndrome with an unknown cause that has affected 48 people.  – Jun 3, 2021

New Brunswick Public Health is working with both of the province’s health networks to investigate a neurological syndrome of an unknown cause that has affected dozens of New Brunswickers.

So far, 48 people have shown symptoms of the mysterious brain disease, and six deaths are attributed to it.

“The discovery of a potentially new and unknown syndrome is scary,” said Health Minister Dorothy Shephard during a news conference Thursday.

“I know New Brunswickers are concerned and confused about this potential neurological syndrome. I share in that concern.”

Shephard said the province is creating a new joint oversight committee to review the 48 cases.

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The new committee will be co-chaired by Dr. Édouard Hendriks, the vice-president of Horizon Health Network’s medical, academic and research affairs, and Dr. Natalie Banville, the vice-president of medical affairs for the Vitalité Health Network.

It will also include six neurologists and one member from Public Health.

“The mandate of the oversight committee is to provide expert second opinions on the identified cases, to ensure due diligence and to rule out other potential causes,” said Shephard.

She said that work will include, but is not limited to, reviewing case definitions, medical charts and recommendations for further lab testing, identifying individuals or their contacts who might need further testing, identifying gaps in medical records and where they can improve, identifying potential requirements for further lab testing, and scanning potentially applicable research.

No diagnosis

Doctors in New Brunswick began identifying some people with an “unusual combination of neurological symptoms” in early 2020.

“Despite extensive medical investigation, a diagnosis for the 48 individuals identified in this cluster has not yet been determined,” said Shephard. “These 48 individuals require additional investigation.”

Symptoms include:

  • Memory problems.
  • Muscle spasms.
  • Balance issues, difficulty walking or falls.
  • Blurred vision or visual hallucinations.
  • Unexplained, significant weight loss.
  • Behaviour changes.
  • Pain in the upper or lower limbs.

In April, Public Health began contacting people who have shown symptoms to participate in a survey in an attempt to figure out a potential cause. So far, five surveys have been conducted and another five will be conducted this week.

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The new committee aims to review all of the cases over the next four months, allowing a further six to eight weeks to interview all patients and their families.

Shephard said that timeline will also depend on the availability of the neurologists.

While a number of similarities were drawn between the mystery syndrome and Creutzfeld-Jacob Disease, the most common form of human prion disease, all test results for known forms of prion disease have come back negative.

Most of the individuals under investigation were living in the southeastern and northeastern regions of New Brunswick, though the province said their investigation has found no evidence that residents of those regions are more at risk than those living elsewhere in the province.

Shephard said the province is working with a number of federal bodies to investigate the disease, including the Creutzfeldt-Jakob Disease Surveillance System (CJDSS), the Public Health Agency of Canada, the Canadian Food Inspection Agency’s zoonotics division and subject matter experts from the B.C. Centre for Disease Control.

Click to play video: 'Neurologist explains mysterious brain disease emerging in New Brunswick'
Neurologist explains mysterious brain disease emerging in New Brunswick

They are also working with some provincial bodies, like the Department of Environment and the Department of Aquaculture, as well as local governments.

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“This investigation is larger than a single neurologist, or even the CJDSS could do on their own,” she said. “We must all work together to ensure the work is done, and the investigation robust.”

Shephard declined to say if the experts are investigating any specific environmental factors.

“We can’t have a narrow focus here. We must examine any and all possibilities, and as those possibilities evolve, we’ll certainly share them with you,” she told reporters.

“We need to allow the science to do their investigation and their work, and by focusing on any one element could just take us in the wrong direction.”

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