CBC News/Radio-Canada distributing 50,000 postcards to learn more about mystery illness

Canada Post is delivering about 50,000 postcards from CBC News and Radio-Canada to mailboxes in the Acadian Peninsula and North Shore areas beginning this week, with the aim of learning more about a mystery neurological illness that's sickened at least 48 people.

The postcards include information about how families impacted by the illness can contact CBC News/Radio-Canada journalists, endeavouring to learn more about their experiences.

The illness, also known as the "New Brunswick cluster of neurological syndrome of unknown cause," has affected people primarily in the Acadian Peninsula and Moncton areas. At least six people have died.

According to Public Health, symptoms include memory problems, muscle spasms, balance issues or difficulty walking, behaviour changes, pain in the upper or lower limbs and blurred vision or visual hallucinations.

A March memo from Public Health said the disease, though not Creutzfeldt-Jakob disease, or CJD, shares many similarities to it. CJD is a rare disease that progresses rapidly and according to the Centers for Disease Control and Prevention, is "always fatal," usually within one year of onset of the illness.

Public Health officials don't know what's causing the symptoms of the mystery illness, but as of May, the leading hypothesis was that it's caused by something environmental.

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A fact-finding mission

CBC News and Radio-Canada in New Brunswick, along with network investigative program The Fifth Estate, have been investigating the experiences of individuals considered part of the "potential cluster," as well as the actions of provincial and federal public health officials.

• FULL COVERAGE: New Brunswick's mystery neurological illness

It's not a clinical investigation and it's separate from the investigation Public Health is doing.

It's a fact-finding mission, aimed at understanding and documenting the stories, struggles, grief and positive moments that patients and their families are experiencing, as scientists, researchers and Public Health officials search for answers.

It means journalists are trying to speak to as many individuals and families as possible who are impactedand who are comfortable sharing their experience, to hear their stories.

'Little additional information to share'

The illness was first publicly revealed in March, after a memo to health professionals was leaked to Radio-Canada.

Since then, Public Health has revealed some basic details about the illness, including a list of symptoms, a basic timeline and that it has affected women and men between the ages of 18 and 85.

Health Minister Dorothy Shephard held a news conference last month to announce an oversight committee that's been tasked with investigating the illness.

• New committee to review cases of mystery brain disease in N.B.

But it also marked a step back in terms of how much information the government is sharing with the public about the illness, with Public Health no longer willing to confirm even where cases of the mystery illness have been detected in the province.

Last week, Shephard told reporters the investigation is happening "as quickly as possible and public health nurses, clinicians, researchers and epidemiologists are working hard," adding that 23 questionnaires have been completed so far.

"At this time, there is little additional information to share," Shephard said.

"The oversight committee will be reviewing the data from the enhanced epidemiological survey along with the other case information. This review process is a detailed one and we knew it would require a few months before the work of the committee would be completed."

The postcards will arrive in mailboxes across the northern part of the province throughout the first half of July. Anyone with an experience to share is welcome to contact journalists, whether they have received a postcard or not.

Please email: neuro-nb@cbc.ca or call us at 506-496-0010 if you or a family member would like to share information with us, or if you would like to know more about our research.