NB Families Bemoan Lack of Information From Province on Mystery Brain Disease

NB Families Bemoan Lack of Information From Province on Mystery Brain Disease
Steve Ellis (L) with his father, Roger Ellis, who suffers from a mysterious neurological syndrome that has appeared in clusters in New Brunswick, in Bathurst, N.B., in August 2020. (Courtesy of Steve Ellis)
James Risdon

BATHURST, New Brunswick—Sufferers of a mysterious brain disease and their families in New Brunswick are complaining that provincial health officials are denying them information about the illness.

“People are dying,” Steve Ellis told The Epoch Times. “My father has been sick for two years, and 18 to 36 months is the lifespan of this disease. I don’t know how much more time my father has left.”

Six people are known to have died from the as yet unidentified syndrome of unknown cause. The syndrome can come with a wide range of symptoms such as delusions, blurred vision, hallucinations, bouts of aggression or other behavioural changes, memory problems, pain in the arms or legs, repetitive speech, imbalance, and sudden weight loss.

At just under six feet, Roger Ellis, a former industrial mechanic who worked for years in the now-closed Brunswick Mine, lost roughly 65 pounds during the first year of the illness. Since then, he has put 35 pounds back on, but now suffers from an entirely new problem: an inability to tell when he has eaten and is full.

The 63-year-old is now living in a special care home in the small city of Bathurst in northern New Brunswick. His son, who lives in Bridgewater in neighbouring Nova Scotia, has created a Facebook community of about 20 sufferers of the mysterious illness along with their families and friends.

Together they’ve been trying to get answers about the illness from New Brunswick’s Department of Health.

“I want Health Minister Dorothy Shephard to give public briefings on a regular basis, as needed,” says Steve Ellis.

“When it comes to COVID-19, they have no problem releasing information about the ages and genders and zones where the cases were detected. So why aren’t they doing it for this?”

New Brunswick health officials, who had earlier been providing information about the number of confirmed cases of the illness and where they were detected, turned off that flow of information on June 2.

Bruce Macfarlane, a spokesman for the province’s health department, explained in an email response that since neither the syndrome nor its cause has been identified, “we are refraining from using words like ‘confirmed’ or ‘diagnosed.’”

Macfarlane also said the province will not be releasing more information, including aggregated data about the personal characteristics of those suffering from the illness, which might provide clues of possible risk factors.

“Due to the relatively low number of cases, we will not be releasing more personal information as it could lead to a privacy breach for patients,” he wrote.

In the Acadian Peninsula, the northeastern corner of New Brunswick where most of the cases of this mysterious brain syndrome have been detected, the province’s lack of willingness to provide details about cases to the public is leading to anxiety and frustration, according to Caraquet Mayor Bernard Thériault.

The small town of Caraquet, which bills itself as the unofficial capital of Acadia, is right in the middle of the region hardest hit by the mysterious illness.

Thériault, who knows people who are suffering from the disease, told The Epoch Times that they and their families are upset and baffled by the government’s unwillingness to share information.

“It worries me,” he said.

“The families affected and the region in general should have more information rather than less. They should be kept up to date by public health officials and the health authorities. This is not the time to give people less information—it is the time to give them more.”

Roger Ellis (L) with his son Steve at Chaleur Regional Hospital in Bathurst, N.B., in October 2019. (Courtesy of Steve Ellis)
Roger Ellis (L) with his son Steve at Chaleur Regional Hospital in Bathurst, N.B., in October 2019. (Courtesy of Steve Ellis)

‘No One Is Recovering From This’

The neurological disease, which first appeared in 2015, has symptoms similar to those of Creutzfeldt-Jakob disease (CJD), a rare and fatal degenerative brain disorder. But New Brunswick Public Health has so far ruled out that it is CJD. It appears to have a fatality rate of 12.5–14.5 percent, with at least six of those afflicted, possibly seven, out of the 48 known cases having died by the beginning of June 2021.

In April this year, public health officials began to collect consent and contact information from those affected in order to undertake an investigative survey. Macfarlane said the data collected will be used to help identify potential sources of the disease.

The government has also created a joint oversight committee that is working with the province’s two health authorities, the Horizon Health Network and Vitalité Health Network, to fully investigate all known cases of the mystery illness.

“I want to assure you that we will keep all lines of communication open, and when there is more information to share, the Department of Health and Public Health New Brunswick will, without question, share it with New Brunswickers,” Macfarlane said.

That’s good enough for some people living in the Acadian Peninsula, including Lamèque Mayor Jules Haché. The mayor of the small town on the very tip of the peninsula is willing to give public health officials the time they want to conduct their investigation.

“We’re going to let them do their jobs,” he said in an interview. “They don’t have enough data to be able to draw conclusions. … There isn’t enough data for it to be credible.”

But those suffering from the illness, and their families, are fed up with being told to wait.

Ellis’s greatest fear is that the illness will eventually prove to be fatal in all cases. “No one is recovering from this,” he says. “Right now, it is a fatal brain disease.”

“We know the investigation will take time and we know that science takes time. What we don’t know is what they’ve been doing for the last 18 months since they ruled out CJD.”

Ellis is trying to get every family member and friend of a patient with the mystery brain disease to email, call, or write the health minister and demand regular public updates.

“Please. There is strength in numbers,” he advises the members of the Facebook community. “Even if you don’t live in New Brunswick, please contact [Shephard’s] office. This is a national, if not international, issue.”

Duff Conacher, co-founder of the Ottawa-based national citizens advocacy group Democracy Watch, says the provincial government of New Brunswick needs to make public whatever it knows about the illness.

“The government has no valid excuse for hiding this information, and it shows how undemocratic and excessively secretive the New Brunswick premier and government are that they have failed to disclose this key information that the public has a clear right to know,” Conacher said in an email.

“The public should write to their politicians at the municipal and provincial level calling for whatever information the government has to be made public.”