Almost a year after the New Brunswick government sounded the alarm about a “characteristic atypical neurological syndrome” that causes symptoms ranging from muscle spasms to visual hallucinations, the province now says there is no mysterious neurological syndrome.
It comes after an supervisory panel made up primarily of neurologists from New Brunswick reviewed the records of 48 patients who were part of the group and found that while some had unusual symptoms, they did not have a common and unknown disease.
The chief medical officer for health, Dr Jennifer Russell, said Thursday: “The oversight panel unanimously agreed that these 48 individuals should not have been identified as having a neurological syndrome of unknown cause, and that, based on the evidence reviewed, there are no Such a syndrome. .
“Public health is in agreement with these findings. But I stress again, that this does not mean that these people are not seriously ill. It does mean that they are sick with a known neurological condition.”
The committee’s review found “potential alternative diagnoses” for 41 of 48 patients, including diseases such as Alzheimer’s disease, Lewy body dementia, post-concussion syndrome and cancer. Ten of the 48 patients died.
The supervisory committee “could not conclude that the lead neurologist who was referred had sought second opinions” of patients before deciding that they may have an unknown disease.
The report did not name him, but Dr. Alier Marrero identified 46 of the 48 patients in the group. Marrero declined to be interviewed via Vitalit Health Network on Thursday, but in the fall, he told Radio Canada he stuck to his theory.
In the future, the committee recommended a second specialist to conduct a review to determine if the patient had a new and unknown disease. If they do not agree, the board of medical professionals should review the case.
“This would implement an oversight mechanism to ensure that this due diligence is completed before any further investigations are conducted or cases are pooled,” the report says.
A report by Public Health New Brunswick, on Thursday, found shortcomings in the way the county communicates about potential illness and problems with information sharing between two levels of government.
“In retrospect, it is clear that the site’s communications and newsletters did not adequately address this concern or provide support to patients and their families,” the report says.
Health Minister Dorothy Sheppard told reporters that Public Health had proposed changes to “improve the way potential new diseases are reported and investigated”.
“We also need to take steps to ensure this does not happen again,” she said.
“The stress and anxiety these families went through should not have happened.”
Dr Howard Ngo, deputy chief of public health at Public Health Canada, said the federal agency “supports the findings of the investigation that this cluster does not represent a neurological syndrome of unknown cause.”
They officially abandoned us
Some patients and their families are not happy with the commission’s findings and plan to keep pushing for a scientific investigation that would see the county conduct environmental testing.
That group includes Jill and Tim Petty, who have seen their father Laurie rapidly deteriorate before their very eyes. He passed away in 2019, and last year his family was told he was a member of the G48.
Both were disappointed by what they heard on Thursday.
“While our government has turned its back on these people, we have not,” Tim Petty said. “The mass is going on, and we haven’t given up.”
Steve Ellis was also told that his father, Roger, was a member of the Cluster. He said he continues to deteriorate physically and cognitively, which has led his son to push for answers from the government, and to organize other patients and their family members through a Facebook group.
“It was obvious that they had officially given up on us,” Ellis said.
“It’s not just the 48, we know it’s over 48. That won’t stop us from continuing to ask them to conduct a proper investigation. This is the due diligence of care as a public health agency, both regionally and federally.”
Ellis, who took part in a private meeting between patients, their family members and Shepherd earlier on Thursday, said he doesn’t feel the government really knows what they’re going through. He is waiting for an appointment with his father’s doctor next week to see if the supervisory committee has suggested an alternative diagnosis for him.
“I just don’t understand how they could stand up to us as well as in front of the public and say they did a full scientific investigation.”
In March, the Office of the Chief Medical Officer of Health sent a memo to health care providers across the county, warning them of a “cluster of progressive neurological syndromes of unknown etiology.”
“An initial investigation conducted in late 2019/early 2020 determined that this is a distinct atypical neurological syndrome,” the note read, noting that the county had already done some sort of work to rule out known diseases.
“It’s probably a new disease,” Russell told reporters on March 18 last year. “We haven’t seen this anywhere else.”
The pool size grew to at least 48 patients, ages 18 to 85, before the government stopped adding new patients to the list. He suffers from many debilitating symptoms.
Asked about her comments last March, Russell said she was “more confident” in the finding public health officials now have, noting that oversight committee members spent two to four hours with each case file.
“For the involvement of so many specialists and our team of epidemiologists and our work with Public Health Canada, I am certainly not infallible in terms of coming up with the hypothesis I made a year ago,” she said.
The boycott of expert meetings stopped
The county has consulted with experts, including many outside New Brunswick’s borders, in the past year to try to find answers to what could be causing patients’ symptoms. Some had experience in environmental health, others in neurological disease.
But that all changed last May, when the county stopped meeting with these experts, prompting questions and criticism from some patients on the block and their families.
Soon, the language that officials like Sheppard used to describe the syndrome became more ambiguous, using words like “possibility.” The county launched its own investigation and set up the committee that wrote Thursday’s report.
A report released by the county in the fall did not find any specific behaviors, foods or environmental exposures that link patients to one another and could pose a risk.
On the same day, Sheppard said eight patients who died, including six who were part of the original group of 48 patients, 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 were part of the group, stood behind his theory of a new disease.
“We had three field epidemiologists working full-time for three weeks each, for example, along with having dozens of meetings with experts to analyze the data and come to the conclusion that there is a pattern here and that the pattern is new,” Marrero said. In an interview with Radio Canada in October.
Sheppard said last April that Marrero had been leading the investigation into the possible emergence of a new disease, but by the fall, she said Marrero was not the lead.
Marrero told Radio Canada he had been working with the province for months, before finding himself out of the investigation last June.
Marrero said in an interview with Radio Canada Enquete.