Almost one year after the New Brunswick government sounded the alarm about “a distinct atypical neurological syndrome” causing symptoms ranging from muscle spasms to visual hallucinations, the province now says there is no mystery neurological syndrome.
That comes after an oversight committee made up primarily of neurologists from New Brunswick reviewed records from 48 patients who are part of the cluster and found that while some have unusual symptoms, they don’t have a common, unknown illness.
“The oversight committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause and that based on the evidence reviewed, no such syndrome exists,” Chief Medical Officer of Health Dr. Jennifer Russell said on Thursday.
“Public Health concurs with these findings. But I stress again, this does not mean that these people aren’t seriously ill. It means they are ill with a known neurological condition.”
The committee’s review found “potential alternative diagnoses” for 41 of the 48 patients, including illnesses such as Alzheimer’s disease, Lewy body dementia, post-concussion syndrome and cancer. Ten of the 48 patients have died.
The oversight committee “could not conclude that the main referring neurologist had sought second opinions” for the patients before determining they may be suffering from an unknown illness.
The report doesn’t mention him by name, but Dr. Alier Marrero identified 46 of 48 patients in the cluster. Marrero declined an interview through Vitalite Health Network on Thursday, but in the fall, he told Radio-Canada he stood by his theory.
In the future, the committee recommended a second specialist do a review to determine whether a patient has a new and unknown disease. If they don’t agree, a board of specialty doctors should review the case.
“This would implement a mechanism of oversight to ensure this due diligence is completed before any further investigations or clustering of cases take place,” the report says.
A report from Public Health New Brunswick, also released on Thursday, found shortcomings in the way the province communicated about the potential illness and problems with sharing information between two levels of government.
“In retrospect, it is clear the website communications and news releases did not adequately address this anxiety or provide support to patients and their families,” the report says.
Health Minister Dorothy Shephard told reporters that Public Health has suggested changes “to improve the way potential new diseases are reported and investigated.”
“We also need to take steps to ensure that this doesn’t happen again,” she said.
“The stress and anxiety that these families have experienced should not have occurred.”
Dr. Howard Njoo, the deputy chief public health officer with the Public Health Agency of Canada, said the federal agency “supports the investigation’s findings that this cluster does not represent a neurological syndrome of unknown cause.”
‘They’ve officially abandoned us’
Some patients and their families aren’t happy with the committee’s findings and plan to continue to push for a scientific investigation that would see the province conduct environmental testing.
That group includes Jill and Tim Beatty, who saw their father, Laurie, deteriorate rapidly in front of their eyes. He died in 2019, and last year his family was told he was a member of the cluster of 48.
Both were disappointed with what they heard Thursday.
“While our government has turned their back on these people, we haven’t,” Tim Beatty said. “The cluster is continuing on, we haven’t given up.”
Steve Ellis was also told his father, Roger, was a member of the cluster. He said he continues to decline physically and cognitively, which has driven his son to push for answers from the government, organizing other patients and their family members through a Facebook group.
“It was very clear that they’ve officially abandoned us,” Ellis said.
“It’s not just the 48, we know it’s more than 48. That’s not going to stop us from still asking them to do a proper investigation. That is their due diligence of care as a public health agency, provincially and federally.”
Ellis, who took part in a private meeting between patients, their family members and Shephard earlier on Thursday, said he doesn’t feel the government truly knows what they’re going through. He’s waiting for an appointment with his father’s doctor next week to find out whether the oversight committee suggested an alternative diagnosis for him.
“I just don’t understand how they can stand up to us and also to the public and say that they’ve done a full scientific investigation.”
‘A new disease’
Last March, the office of the chief medical officer of health sent a memo to health-care providers across the province, warning them about a “cluster of progressive neurological syndrome of unknown etiology.”
“Preliminary investigation conducted in late 2019/early 2020 determined this to be a distinct atypical neurological syndrome,” the memo said, suggesting the province had already done some sort of work to rule out known diseases.
“It most likely is a new disease,” Russell told reporters on March 18 of last year. “We haven’t seen this anywhere else.”
The size of the cluster grew to at least 48 patients, ranging in age from 18 to 85, before the government stopped adding new patients to the list. Many suffer from debilitating symptoms.
Asked about her comments last March, Russell said she is “much more confident” with the conclusion public health officials have reached now, noting that members of the oversight committee spent two to four hours with each case file.
“To have that many specialists involved, our epidemiologist team and our work with the Public Health Agency of Canada, I certainly am not infallible in terms of coming to the hypothesis that I did a year ago,” she said.
Province halted expert meetings
The province consulted experts, including many from beyond New Brunswick’s borders, last year to try to find answers to what could be causing patients’ symptoms. Some had expertise in environmental health, others in neurological illness.
But that all changed last May, when the province stopped meeting with those experts, drawing questions and criticism from some patients in the cluster and their families.
Soon after, the language that officials like Shephard used to describe the syndrome became more uncertain, using words such as “potential.” The province launched its own investigation and formed the committee that wrote Thursday’s report.
A report released by the province in the fall found no specific behaviours, foods or environmental exposures that linked the patients together and could pose a risk.
On that same day, Shephard said eight patients who had died, including six who were part of the original cluster of 48, had autopsy results indicating they died from known diseases, such as cancer, Lewy body dementia and Alzheimer’s disease.
At the time, Marrero, who treated most of the patients who are part of the cluster, stood behind his theory of a new illness.
“We had three field epidemiologists working full time for three weeks each, for instance, besides having dozens of meetings with experts to analyze the data and to come up with the conclusion that there is a pattern here and that pattern is new,” Marrero said in an interview with Radio-Canada in October.
Last April, Shephard said Marrero was leading the investigation into the possibility of a new illness, but by the fall, she said Marrero had not been the lead.
Marrero told Radio-Canada he’d been working with the province for months, before finding himself on the outside of the investigation last June.
“We were told we didn’t have the right to update the newest cases,” Marrero said in an interview with Radio-Canada’s Enquête.