They All Got Mysterious Brain Diseases. They’re Fighting to Learn Why.
Doctors in Canada have identified dozens of patients with similar, unexplained symptoms — a scientific puzzle that has now become a political maelstrom.
This is one of the strangest newspaper stories I’ve read in a long time. As the story’s headline and subhead (as copied above) say, a number of people (now over 400) in New Brunswick Province Canada have developed mysterious, disabling brain disabilities over the past nearly 6 years. When I started the story I expected that by the end the mystery would be cleared up. But it wasn’t. Worse, the government of New Brunswick appears to be doing everything possible to prevent medical experts from discovering what’s going on.
The first signs were often behavioral. One patient fell asleep for nearly 20 hours straight before a friend took her to the hospital; another found himself afraid to disturb the stranger who had sat down in his living room, only to realize hours later that the stranger was his wife.
But these anxieties and sleep problems quickly gave way to more acute presentations: limb pain and trouble balancing, teeth chattering and shocklike muscle spasms so violent that some patients could no longer sleep in the same bed as their spouses. Many patients developed vision problems; some experienced terrifying hallucinations. As the sickness continued to manifest, muscles wasted away and cognitive decline set in. Some patients died; others plateaued in various states of distress.
Even more alarming, many of the patients were unusually young. Nearly half were middle-aged, and a few were in their 20s and 30s.
The current best hypothesis is that the problem can be attributed to the presence of “glyphosate, a herbicide that is regularly used as part of the forestry industry in New Brunswick.”
Dr. Alier Marrero, a neurologist, seems to be the primary care-giver for people with this syndrome. Marrero sent blood samples from 100 of his patients for analysis. The results showed “elevated amounts of glyphosate in their blood, in one case as high as 15,000 times the test’s lowest detectable concentration.”
On their own, the results mean little. Without a control group, it’s impossible to understand the results in context. Perhaps everyone in New Brunswick has elevated levels of glyphosate because of spraying in the province.” [The article doesn’t explain why further testing has not been performed.]
According to scientists from the Public Health Agency of Canada, both the number of undiagnosable patients and, more important, their ages were “unprecedented at the national and provincial levels.” They called it the “New Brunswick neurological syndrome of unknown etiology.” In March 2021, when a memo alerting local doctors to the existence of the mysterious illness leaked to the press, the news made headlines around the world. Marrero’s patients and their families hoped that an explanation for their suffering would soon be revealed.
Initially, government support for the study was robust. At a briefing in April 2021, Dr. Theresa Tam, the country’s chief public-health officer, advised the working group to engage the widest expert network possible and ensured that the investigation wouldn’t be tied up in bureaucracy. The Canadian Institutes of Health Research offered the province $5 million to help fund a two-year clinical investigation.
But then something changed. A month later, on the afternoon of May 6, 2021, an email from the provincial health department began to circulate saying that all currently scheduled meetings would be “paused” until provincial researchers “had the time to delve more deeply into existing data.” Meetings that had been planned months in advance were wiped from the calendar. Field experts and neurologists were left waiting on Zoom links that never came. “There was a stop, suddenly, abruptly, with no apparent explanation,” says Marrero, who called the decision “unusual by any standards.”
The province also sent a note to the federal authorities asking them to take a “step back from public communications” because of “heightened sensitivities in New Brunswick,”
Provincial officials would later claim that their reason for pausing the federal working group’s involvement was largely jurisdictional — because the patients in the cluster were from New Brunswick, it was the province’s responsibility to lead an investigation — and a few weeks later, Dorothy Shephard, New Brunswick’s health minister at the time, announced a province-run surveillance study to examine potential dietary and geographic links between cluster members, as well as an oversight committee that included six neurologists to independently investigate the unknown illness. The new committee would, as the announcement put it, “provide expert second opinions” and “rule out other potential causes.”
Emails internal to the New Brunswick health agency appear to show New Brunswick officials strategizing to keep the investigation from spreading to the federal level. They ruled that two cluster patients who had moved out of the province should not be interviewed specifically because their inclusion would make the effort multijurisdictional.
Rather than implementing the “boots on the ground” approach recommended by the federal scientists, it appeared that New Brunswick officials had decided instead to relitigate the working group’s original findings — namely, whether a cluster of patients existed at all. They apparently were not even trying to investigate the possibility of a toxicant.
Why had the province declined the help of the federal experts? And considering the ambiguity of the science, why weren’t they also testing for toxic substances? In lieu of satisfactory responses from officials, theories of all kinds began to circulate, from bureaucratic incompetence to conspiracies blaming the influence of malevolent corporate interests. Marrero’s position was perhaps the most popular. “I think that what created the scare was the word ‘environment,’” he told me last summer. He believes that in the spring of 2021, as a tangible plan for testing New Brunswick’s air, soil and water began to materialize, the province got cold feet. Forestry, tourism and seafood are among the region’s most prominent — and profitable — industries, all of which rely on a healthy environment to thrive. If testing revealed that New Brunswick’s environment was compromised, it could spell disaster for the provincial economy.
On Feb. 24, 2022, Dr. Jennifer Russell, the province’s chief medical officer, announced that the oversight committee had finished its work. The survey, she said, ‘‘could find no common exposure in the group.’’
In their final report, provincial health officials explained what they believed had gone wrong. They argued that the case definition for the illness was overly broad, to the point that it overlapped with other conditions. Because of that, no human-tissue testing was needed. They also singled out Marrero for not seeking second opinions before referring patients to the cluster, an assertion he rejects.
In response, Marrero notes that in 2021, the working group had offered second opinions in a number of cases, going so far as to remove a few from the cluster. Marrero says he also spent countless hours discussing the situation with Dr. Neil Cashman, one of Canada’s foremost neurologists, and Cashman later agreed to go to New Brunswick to meet with patients face to face before the province’s inward turn scuppered the plan.
In recently leaked emails, Marrero’s federal colleagues also appeared to reject the province’s findings. “It seems that the best interests of those affected have not been at the forefront of the actions taken,” wrote Dr. Samuel Weiss, a neuroscientist working for the federal agency that offered the $5 million to fund the investigation. “How this has and continues to be the case — is part of a larger mystery around the intentions of the Government’s focus on politics, power and process — over the humanity of care.” Dr. Michael Coulthart, head of the federal surveillance system for Creutzfeldt-Jakob disease, was even more direct. “My scientific opinion is that there is something real going on in NB that absolutely cannot be explained by the bias or agenda of an individual neurologist,” he wrote in an email to colleagues. He, too, felt that the decline in Marrero’s patients was most likely caused by an environmental trigger.
For the patients, the government’s report was a devastating blow. Before its release, they began receiving letters from provincial health officials detailing different diagnoses for their physicians to consider. Gabrielle Cormier was told she might be schizophrenic. Ellis was told that his father might have progressive supranuclear palsy. The committee hadn’t seen either patient in person; it based its second opinions on medical charts alone, a particularly challenging assignment considering the nuance involved in diagnosing neurological conditions. As it turned out, those two specific conditions had been ruled out by specialists before either Cormier or Ellis had been referred to Marrero. In fact, in Ellis’s case, it had been ruled out by one of the neurologists on the oversight committee itself.
Other cluster members were provided with possible diagnoses of cancer, alcohol-induced brain damage, H.I.V. and a broad range of dementias, all of which were dismissed by testing years earlier. The patients were now being told to return to the same doctors who had been so perplexed by their symptoms that they referred them to Marrero. The circular logic of it was particularly insulting because there was no other recourse. The final report had been issued. The case was closed. “It just felt like the ultimate betrayal,” Ellis said. “My father has paid taxes his entire life in New Brunswick, is languishing in a care home, and no one federally or provincially is doing anything anymore to help him.”
Marrero reported that since the province concluded its investigation, things had gotten worse. The number of undiagnosable patients currently under his care has risen to more than 430, 111 of whom are under age 45. Thirty-nine have died. By Marrero’s accounting, New Brunswick is now the center of one of the most prolific young-onset dementia clusters in the world. “Nobody who was involved in this can pretend they didn’t know,” he said.
A commenter said, “It is common knowledge here in Maine that the New Brunswick Provincial government is largely under ‘capture’ by Irving Corp. It is not just Timber but many sectors including oil and manufacturing under one large privately owned corporate entity.
The final paragraph of the Wikipedia page on The Irving Group reads as follows.
Irving-owned facilities have been shown to emit a mixture of carcinogens, including benzene and lead. In 2009, the Conservation Council of New Brunswick produced a study which found that rates of lung cancer were 40 to 50 percent higher in Saint John than in Fredericton and Moncton – New Brunswick’s other major cities.[31][32] In 2018 the Irving Pulp and Paper Ltd. pleaded guilty to three charges under the federal Fisheries Act related to numerous "significant" instances of effluent discharges from its pulp mill in west Saint John into the St. John River over a two-year period.[33] This was the fourth time that this fine was issued in a period of two years.[34]
The final footnote refers to this article. “There’s a Mysterious New Sickness in Canada and the Government is Keeping It a Secret,” Jared A. Brock, January 14th 2022, https://survivingtomorrow.org/theres-a-mysterious-new-sickness-in-canada-and-the-government-is-keeping-it-a-secret-88dd505d0ca0