UPDATED with response from New Brunswick Department of Health, June 12, 2024.
New Brunswick’s unexplained neurological cases are back in the news.
The Guardian newspaper published a story by Toronto-based reporter Leyland Cecco on Monday describing leaked emails from a Canadian scientist dated as recently as October 2023, expressing concern about the cause of unexplained neurological symptoms being experienced by hundreds of patients in New Brunswick and beyond.
Cecco writes that he saw emails written by Public Health Agency of Canada senior researcher Michael Coulthart:
“Coulthart, a veteran scientist who currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes” with people seemingly susceptible to different protein-misfolding ailments, including Alzheimer’s disease and Parkinson’s disease.
Coulthart argues this phenomenon does not easily fit within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is going on.”
According to Cecco, Coulthart also said he had been “essentially cut off” from involvement in the issue, and that he believed the reason was political.
Then on Wednesday, the Times and Transcript published a story by Moncton-based reporter Sarah Seeley, describing an interview with Dr. Alier Marrero, the neurologist who first started reporting unexplained neurodegenerative cases in the province.
As Seeley reports, Marrero “says he has now seen more than 320 patients in six provinces with atypical neurological symptoms.” Marrero also described an overly cumbersome reporting system that’s been required by New Brunswick Public Health which has hampered the number of files he has passed on to the agency.
The situation is a far cry the spring of 2021, when Public Health New Brunswick issued a memo to doctors warning them of over 40 cases, all flagged by Dr. Marrero, of “progressive neurological syndrome of unknown origin.”
The memo also said that provincial and federal public health officials were collaborating on an investigation. But that work would be shortlived.
In May, officials cut off the number of cases under consideration at 48, and shut down collaboration with the Public Health Agency of Canada, according to various reports, including this investigation by CBC’s Karissa Donkin.
By February 2022, the province published a report suggesting that some of Marrero’s cases had been misdiagnosed, and that the original 48 patients were likely suffering from known conditions such as Alzheimer’s disease. Meanwhile, Marrero continued to find patients with symptoms he could not explain.
‘Time just keeps passing’
This week’s media coverage has reignited concerns about the issue, including for Memramccook-Tantramar MLA Megan Mitton.
“For me, it reinforces the concerns that I’ve had since the beginning, that there is an environmental exposure that’s causing or worsening neuro-degenerative syndromes,” says Mitton. “And that scientists have basically been told to stand down. And this is extremely concerning.”
“I’m so glad that journalists are continuing to look into this and report on this, because otherwise, we would kind of be in the dark,” says Mitton.
A January 2023 letter from Marrero to federal and provincial public health officials outlines a number of theories about possible environmental causes for the unexplained symptoms, including BMAA, a toxin produced by some blue-green algae, and elements of the pesticides glyphosate and glufosinate, which Marrero says has been found in his patients.
Since then, patient groups and politicians have been calling for environmental testing.
“I’m extremely worried because we still don’t know what’s happening,” says Mitton. “There are people that are sick, and we don’t know what’s going on. And these patients and their families deserve answers.”
“Time just keeps passing,” says Mitton, “and we could have been doing environmental testing, we could have been trying to solve this. But that is not what’s happening. And it’s extremely upsetting and extremely concerning.”
Sackville resident Lori Ann Roness has been calling for further investigation every chance she gets, presenting to Tantramar council, and drawing attention to the issue at public meeting with Horizon Health officials.
Roness says she had been following media reports of New Brunswick’s so called ‘mystery brain disease’ since 2021, but then about a year and a half ago, started noticing a tremor in the hands of her elderly father.
“I suggested that he be referred to a neurologist,” says Roness, “and he was referred to Dr. Marrero.”
After a battery of tests, Marrero ruled out Parkinson’s disease, says Roness. “Within that process, my father was also found to have high levels of heavy metals and glyphosate, and something else called BMAA,” says Roness.
Roness’s mother, daughter, and herself have been subsequently tested for a variety of metals and pesticides, which has turned up elevated levels of things like arsenic, copper, and manganese among her family. Roness says she’s not sure where these elements are coming from. She’s also still not sure what’s causing her father’s health problems. And that’s why she wants more investigation.
Roness says in all her public presentations to date, she has emphasized that “we don’t know what the source of these problems are.”
‘More testing is required’
“What we do know, and what was revealed in the [Guardian] article the other day, is that more testing is required and more insight is required,” says Roness. “And that is not something that the province of New Brunswick and particularly the Public Health New Brunswick, is particularly keen on doing. In fact, they have been very active in actually denying the existence of cases.”
Roness says that she’d like to see Public Health New Brunswick re-engage with the Public Health Agency of Canada, where Micheal Coulthart works, and find the resources to investigate the potential environmental factors that might be causing unexplained neurodegenerative decline in some people.
“I would like Public Health to acknowledge that Dr. Marrero is a qualified neurologist with ample training,” says Roness. “I would like Public Health to acknowledge and meet with the patient group. And I would like Public Health to move forward with investigating the sources of the problem.”
Roness feels that currently, public health officials are working to sideline Dr. Marrero. While it is difficult to find any support in public statements from health officials, emails like those seen by the Guardian do indicate there are scientists who find Marrero’s findings worrisome, and who would support some sort of further investigation.
Roness says she can’t say why there aren’t more doctors stepping up to support Marrero. “Certainly I don’t have the ins and outs of what is going on within the Department of Health or within the regional health authorities,” says Roness. But she says as a layperson her guess is that, “like all people who work for organizations, there’s an expectation that employees, you know, follow the party line of the employer.”
“I’ve worked for organizations before, and I’m sure your readers have, and there’s always strong pressure to conform,” says Roness.
Roness adds that if an investigation is looking into environmental factors that are caused by human activity, then it has the potential to disrupt those activities.
“We already know that in this province, the forestry sector and particular industry leaders are extremely powerful,” says Roness. “And there are also strong connections between those industry leaders and the leaders in this province. And that is extremely disturbing, and it needs to be looked at.”
Megan Mitton says she is hoping for action on two fronts to address concerns of patients like Roness and her father. First, “we would do environmental testing, and take this seriously,” she says. “Move with urgency.”
And secondly, she’d like to see structural changes. “Public health has been dismantled by previous governments,” says Mitton. “It has been torn apart, and different scientists were thrown into different departments. And we’ve seen political interference as well. And so we need a more independent and strengthened public health agency to be able to deal with things like this.”
Provincial response
In response to an enquiry from CHMA, New Brunswick Department of Health spokesperson Sean Hatchard says that in the past year, Public Health New Brunswick has only received 29 completed reports from Dr. Marrero notifying the department about unexplained neurological symptoms in patients. Hatchard says the department is reviewing those reports.
Hatchard also said the province “does not hinder any research into this area of study,” and that if “the Department of Health determines any additional actions are needed, it will respond accordingly.”
Here is Hatchard’s full emailed response:
In February 2022, Public Health New Brunswick released its final report from the investigation into a potential cluster of a neurological syndrome of unknown cause.
An oversight committee, which included independent neurologists, found no evidence that a neurological syndrome of unknown cause exists in the province, or that patients exhibited the same symptoms or shared any common illness. Their report is available online here.
The Public Health Agency of Canada (PHAC) supported the results of the investigation.
Medical professionals in the province have a duty to notify provincial authorities of cases where a person presents with a notifiable disease or event under the Public Health Act.
In January 2023, Dr. Alier Marrero raised concerns about a number of patients that he was following. In May 2023, to better understand his concerns, Public Health New Brunswick requested the submission of information on these patients to determine next steps, if any. Dr. Marrero subsequently indicated he was struggling to complete these notifications.
In September 2023, November 2023 and March 2024, Public Health New Brunswick, in collaboration with PHAC and the Vitalité Health Network, conducted exercises to support Dr. Marrero in submitting his legally required notifications.
Although Dr. Marrero has made statements regarding findings and observations related to a large number of patients, as of mid-May 2024, Public Health New Brunswick had received a total of only 29 complete notifications submitted by the physician within the past year. These cases are being reviewed.
Public Health New Brunswick continues to deploy resources to assist Dr. Marrero with his legally required notifications. Once all the notifications are completed, the Department of Health will be able to review the information and determine if any additional actions may be needed.
To date, Public Health New Brunswick has not received any similar notifications from other physicians.
Public Health New Brunswick has had ongoing discussions with PHAC on this file and has worked in partnership with the national agency several times to support Dr. Marrero.
New Brunswick does not hinder any research into this area of study.
The Department of Health recognizes the assessment and management of complex medical conditions can be a long and, at times, frustrating process for patients. We want the best for these patients.
Individuals with neurological conditions or diseases should consult their health-care providers for appropriate referrals and care.
In addition to the ongoing work noted above, if the Department of Health determines any additional actions are needed, it will respond accordingly.
