Eight people from N.B. mystery illness cluster may have been misdiagnosed, new research
Eight people who were identified as having an unknown neurological disease in New Brunswick did not die from something new and unknown and may have been misdiagnosed, according to new research published online.
An abstract presented earlier this month at the Canadian Association of Neuropathologists’ annual meeting by Ottawa neuropathologist Dr. Gerard Jansen says the news of a possible neurological syndrome of unknown cause has “significantly disturbed the medical community” since it was revealed publicly in March.
The abstract says the authors hope their neuropathological findings “will bring some clarity.”
The provincial government has previously said six people who were part of the cluster of people with a mystery brain disease had died.
It’s not clear when the death toll climbed to eight people, but on Wednesday afternoon, the Department of Health will present its first report on its investigation into a cluster of 48 cases.
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Jansen’s abstract says his findings show the eight people died from a variety of causes, including cancer, Lewy body dementia and Alzheimer’s disease.
“In these eight patients no evidence for a prion disease was found, nor novel pathology,” the abstract says.
“We suggest that these eight patients represent a group of misclassified clinical diagnoses.”
Cluster became public in March
The abstract notes that an oversight committee, set up by the Health Department this past June, has been reviewing “clinical and epidemiological data of the patients in this cluster.”
“We hope that our findings are useful to them,” the report says.
Jansen, who presented the findings earlier this month, could not be immediately reached for an interview.
In May, he confirmed to CBC News that he was the pathologist who had diagnosed all five patients who had autopsies by that point. He also reviewed patient files for members of the cluster as part of a contract with the Public Health Agency of Canada.
But Jansen said he couldn’t discuss the findings because the information was the property of the federal government.
“All to say that while there is a lot to be said about this cluster in New Brunswick, I am not at liberty to say anything,” Jansen wrote in an email in May.
CBC News has not seen a full copy of the report that the abstract describes.
The Canadian Association of Neuropathologists declined to provide access to a recording of the full presentation given by Jansen at its annual meeting earlier this month, saying it was made “for conference attendees and [association] members only.”
A biography of Jansen included on the association’s website says he has been involved with clinical surveillance of Creutzfeldt-Jakob disease for more than 30 years, during which he has “seen all types of prion diseases passing by … but also many look-alike neurological diseases.”
‘This is just the beginning’
Steve Ellis’s father, Roger Ellis, continues to suffer from debilitating symptoms that affect his cognition and mobility. Earlier this year, Steve Ellis was told that his father is a member of the cluster of 48.
Ellis did not know, until finding out through reporters on Tuesday, that pathology findings for some members of the cluster who are deceased had been published online.
“I was promised by Minister Shephard that results from this oversight committee would be communicated to families first,” Ellis said in an interview with Radio-Canada.
“As of today, I’ve yet to be communicated with.”
Ellis called for the federal government to get involved to get to the bottom of the mystery that affects his father and 47 other families.
“This is not done. This is just the beginning.”
Memo suggested illness was a new disease
The existence of the cluster was first made public in March, after a memo sent to health-care providers across the province on March 5 was leaked to Radio-Canada.
“Preliminary investigation conducted in late 2019/early 2020 determined this to be a distinct atypical neurological syndrome,” says the March 5 memo from Dr. Christin Muecke, the deputy chief medical officer of health.
At a COVID-19 news conference on March 18, Chief Medical Officer of Health Dr. Jennifer Russell also suggested it was a new illness.
“So it most likely is a new disease,” Russell told reporters that day.
“We haven’t seen this anywhere else. And so we’re, it is of unknown etiology but the symptoms are very much like [Creutzfeldt-Jakob disease].”
As of Tuesday afternoon, the government’s website for the cluster, set up as part of the province’s pledge to be transparent, still showed 48 people have been identified, six of whom had lost their lives. Those figures haven’t changed since the end of April.
Symptoms range from balance issues to muscle spasms, behavioural changes and memory problems, among others.
Shortly after news of the cluster became public, Dr. Alier Marrero, a Moncton neurologist who discovered the cluster and has treated most its patients, told CBC News that he suspected the cause of the illness was environmental.
That same month, Dr. Neil Cashman, a professor in the University of British Columbia’s faculty of medicine and a neurologist, also said environmental toxins, such as blue-green algae, would be part of the investigation into the cluster.
Neither Marrero nor Cashman are part of the province’s investigation any longer, though the province has not explained why. The government’s committee also doesn’t include any environmental experts.
When asked in May what kind of environmental sampling the province has done, Shephard said the committee would first want to look at the findings from lengthy interviews conducted with members of the cluster.
Public Health nurses interviewed members of the cluster — or in some cases, their family members — asking about their lifestyles, including what they ate, where they worked, lived and travelled.
The Fifth Estate has been looking into the cases of mysterious illness in New Brunswick and the provincial government’s reaction.
Their investigation will air next week, Thursday, Nov. 4, at 9 p.m./9:30 p.m. in Newfoundland and Labrador.