Almost one year after the New Brunswick government sounded 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 illness.
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, concluding most are likely suffering from known diseases.
“The committee found that out of 48 cases, none fulfilled the full criteria of the case definition [for the unknown syndrome],” says a report from the committee, released on Thursday.
“In light of these findings, the committee concluded that although some of the cases have presentations with unusual symptomology, they do not appear to have a common illness with an unknown etiology and there is no evidence of a cluster of neurological syndrome of unknown cause.”
Chief Medical Officer of Health Dr. Jennifer Russell acknowledged on Thursday that these people are clearly quite ill.
“It means they are ill with a known neurological condition,” Russell said.
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.
Within the last few weeks, patients who are part of the cluster of 48 began receiving letters from the provincial government, suggesting they may have an alternative diagnosis.
Johanne Boucher of Caraquet received one of those letters last month. Her letter suggested a few possible causes for her symptoms, including Parkinson’s disease.
“I don’t have an answer to my condition. It is nothingness,” Boucher said in a January interview with Radio-Canada.
The oversight committee “could not conclude that the main referring neurologist had sought second opinions” for the patients before determining they had an unknown illness. The report doesn’t mention him by name, but Dr. Alier Marrero has treated most of the patients who make up the cluster and in the fall told Radio-Canada he stood by his theory.
In the future, the committee recommended a second specialist should 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 released by Public Health New Brunswick at the same time 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 press releases did not adequately address this anxiety or provide support to patients and their families,” the report says.
“Public Health should complete a review of its communication and patient engagement practices during investigations to improve in this area.”
‘No answers to our pain and suffering’
Some patients and their families aren’t happy with the committee’s findings and say they “will not rest until a scientific investigation is reinstated.”
“We are extremely disappointed and angry that the government of New Brunswick has chosen to abandon scientific rigour in exchange for political expediency,” says a statement sent from Steve Ellis on behalf of the patients their families.
“No additional testing was conducted. No testing for neurotoxins was conducted. No case controls were performed during the “review” of the oversight committee. Our questions were not answered. We do not need a national committee formed on the backs of our suffering.”
The statement says the group of patients and their family members began as a cluster of 48, but they believe the size of the cluster has grown to more than 148.
“Our lives and the lives of our loved ones will not be railroaded by a slipshod investigation that offers no answers to our pain and suffering.”
‘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,” Chief Medical Officer of Health Dr. Jennifer 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.
Even though the province froze the number of people in the cluster, the MIND Clinic, a Horizon Health-run clinic designed to treat neurodegenerative disorders, continued to see new patients referred by their doctors.
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 Health Minister Dorothy 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.
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