They are fighting to understand why they have mysterious brain diseases

Beatty’s descent into delusions deepened over the next few days. It was 1992, he revealed to his wife, and he wondered out loud why his hair had gone white. After that, he began experiencing seizures. Uncontrollably, he started to twitch and jerk his arms. He passed away by the end of May.

Physicians at Georges-L. -Dumont University Hospital Center in Moncton, the largest city in the Canadian province of New Brunswick, identified the most likely cause as Creutzfeldt-Jakob disease, an extremely rare condition brought on by prions, which are proteins that misfold in the brain. Tim and Jill, Beatty’s children, were informed of this by the doctors, who also promised to do more testing to corroborate the post-mortem diagnosis. That’s what the siblings anticipated hearing when they went back to see Dr. Dot Alier Marrero, their father’s neurologist, three months later. Rather, Marrero informed them that Laurie’s results from the Creutzfeldt-Jakob test were negative. Tim claims, “We were all looking at one another because we were all very confused.”. More disturbingly, Marrero said, “If Creutzfeldt-Jakob hadn’t killed their father, then what had?

Laurie Beatty turned out to be just one of over 20 locals who had visited Marrero’s office in the preceding four years, displaying similar, unexplained signs of neurological decline. First indications were frequently behavioral. One patient slept for almost twenty hours without waking up until a friend brought her to the hospital; another was terrified to wake the stranger who had taken a seat in his living room, only to discover hours later that the stranger was his wife.

However, these fears and insomnia soon gave way to more severe manifestations, such as limb pain and difficulty balancing, chattering teeth, and shock-like muscle spasms that were so severe that some patients were unable to sleep in the same bed as their spouses. Numerous patients suffered from visual issues, and some even had frightful delusions. “More like daydreaming, but a nightmare,” Marrero claims. “As the illness worsened, cognitive decline and muscle atrophy developed. Some patients reached a plateau in different levels of distress, while others passed away.

Marrero had difficulty reaching a firm diagnosis in each case. The patients’ symptoms could have been caused by a wide range of neurological conditions, but there was always something glaringly unusual about the way they presented. They did not respond to known therapies, which is a hallmark of how neurologists diagnose conditions, or their decline was either too quick or not quick enough. They also lacked important indicators of a specific disease. Furthermore concerning was the unusually young age of many of the patients. With a few in their 20s and 30s, the majority were middle-aged. Marrero described “crying out for help” during a presentation to an expert panel at the University of British Columbia. “What else is there for me to test? What am I missing?”.

According to the Beattys, Marrero clarified that he had other patients in comparable circumstances, but he was unable to elaborate further due to legal restrictions on confidentiality. Tim told me, “We were insanely afraid.”. He and Jill wondered if they would share their father’s destiny due to some unrecognized genetic factor.

Marrero had been reporting each case to the Public Health Agency of Canada’s Creutzfeldt-Jacob Disease Surveillance System, a federal monitoring program, because many of the symptoms were similar to those of the disease. As his referrals grew, scientists at the agency began to take notice. An inquiry was launched by a working group of specialists six months after Marrero told the Beattys about his worries. Marrero started to suspect that his patients had an illness that had not been diagnosed before that point. It’s highly possible that we haven’t learned to see something when you haven’t seen it, he subsequently stated to a reporter. “.

His colleagues at the federal level tended to concur. Based on P. H. An. D. scientists, there were “unprecedented numbers at the national and provincial levels” of patients who could not be diagnosed, not to mention the significance of their ages. The condition was dubbed the “New Brunswick neurological syndrome of unknown etiology.”. News of the mysterious illness made headlines worldwide in March 2021 after a memo informing local doctors of its existence was leaked to the media. The patients and their families of Marrero hoped that soon an explanation for their suffering would be made public.

But after three years, no convincing explanation has been discovered, and the New Brunswick syndrome is still mysterious and contentious. The central question in this case is whether the patient’s illness could have been caused, at least partially, by something in their surroundings. This question highlights the complex interplay between patient rights and public health as well as the fundamentally confusing nature of neurological disorders. What started out as a perplexing medical mystery has become a situation fraught with suspicion in the lack of answers: claims of sinister schemes to silence physicians, scientists leaking confidential information, and an expanding group of patients and advocates determined to expose the government’s role in a cover-up.

The provincial government, according to Tim Beatty, “doesn’t have tinfoil hats.”. However, they have done an excellent job if your goal is to instill conspiracy theory belief in a group of people. “.

One reason for this is that the science is relatively new. The first concrete evidence of a link between a toxicant and neurodegeneration did not surface until the early 1980s. A group of drug users in California unintentionally injected themselves with a faulty batch of designer heroin and started experiencing symptoms that were strikingly similar to Parkinson’s disease. This was a tragic natural experiment. When investigators tracked down the back-alley chemist who had made the drugs, they discovered that he had unintentionally added MPTP, a neurotoxin precursor, to the mixture. The discovery that MPTP shared similarities with the chemical composition of paraquat, a popular herbicide, raised the possibility that aging patients were developing Parkinson’s disease as a result of long-term exposure to synthetic toxins, much like heroin users were. The concept has been supported by developments in genetic and molecular testing ever since. Recently, cyanobacterial blooms, pesticides, air pollution, and a host of other toxicants have been associated in chronic doses with brain disorders. In particular, some researchers have gone so far as to label Parkinson’s disease as “man-made.”. “.

The connection is still incredibly hard to prove, despite the growing consensus. It’s unethical to feed poisonous substances to people and then watch them become ill, after all. Most of the time, scientists are limited to examining the properties and effects of a particular toxin in a laboratory setting or attempting to establish a link between the toxin’s presence in the environment and disease clusters observed on the ground. It is almost impossible to prove a definitive connection because of the numerous and complex surrounding variables, even in that case. Many neurological disease symptoms overlap, which makes it difficult to determine a definitive diagnosis even in the best of situations, further complicating the matter.

There was substantial evidence of a shared environmental contaminant in New Brunswick. The Acadian Peninsula, a francophone region on New Brunswick’s northeast coast that is home to charming fishing villages and blueberry farms, and the Moncton area were the two main locations where the patients were grouped. Researchers questioned whether the geographic clustering could be explained by a shared supply of food or water. In addition, there were several non-genotypical households with multiple patients, including spouses and wives, stepfathers and stepdaughters, and a nursing student and her ward. It was challenging to find an explanation for these “close contact” cases other than a shared exposure.

Determining what that exposure could be was the challenging part. In an attempt to narrow down a lengthy list of potentially harmful environmental agents to a small number worth focusing on in their research, Marrero and his colleagues met weekly in the spring of 2021 and conferred with specialists in pathology, water science, and zoonotic disease. The objective was a comprehensive epidemiological investigation, or “boots on the ground” as one senior scientist described it, involving tissue and environmental sampling, diagnostic testing, and interviews. In the eyes of many scientists, this presented a unique opportunity to study the toxin-brain relationship in real time, assuming that the possible cause of this cluster of patients was indeed a toxic substance.

The government was initially quite supportive of the study. Dr. Theresa Tam, the nation’s chief public health officer, gave advice to the working group in April 2021 during a briefing. She made sure the investigation wouldn’t become bogged down in red tape and encouraged them to involve as many experts as possible. The province received a $5 million grant from the Canadian Institutes of Health Research to assist in financing a two-year clinical study.

But after that, something altered. One month later, on May 6, 2021, in the afternoon, a provincial health department email went out announcing that all upcoming meetings would be “paused” until provincial researchers “had the time to delve more deeply into existing data.”. Calendar entries for meetings that had been made months in advance were removed. Field specialists and neurologists were left waiting for absent Zoom links. “There was an abrupt and sudden halt, without any apparent reason,” stated Marrero, who also described the decision as “atypical by any means.”. “.

A further cloud was cast ten days later, according to Marrero, who received a call on his cellphone from the acting lead epidemiologist for the province, Dr. Hanan Smadi, instructing him to cease informing the provincial authorities of any possible new cases. Marrero was stunned. The cluster was becoming more and more populated, with 48 patients at the time and 8 deaths. It comes from higher up, Smadi reportedly informed Marrero when he questioned where the request was coming from. Due to “heightened sensitivities in New Brunswick,” the province also sent a note to the federal authorities requesting that they “step back from public communications.” One senior scientist told a reporter from a Canadian magazine that this request amounted to being “muzzled.”. According to Public Health New Brunswick, Smadi never contacted Marrero to request that he cease reporting cases. Smadi and other agency staff were not available for comment. ( ).

A few weeks later, Dorothy Shephard, the health minister for New Brunswick at the time, announced an oversight committee made up of six neurologists to conduct an independent investigation into the illness, as well as a province-run surveillance study to look into potential dietary and geographic links between cluster members. Provincial officials would later argue that their decision to halt the federal working group’s involvement was primarily jurisdictional, as the patients in the cluster were from the province. According to the announcement, the newly formed committee would “rule out other potential causes” and “provide expert second opinions.”. Patients and those who supported them rejoiced at the news, not realizing at the time that the federal scientists had been marginalized.

Internal correspondence from that time frame, however, cast doubt on the province’s justification because it seems that officials in New Brunswick were planning how to prevent the investigation from going all the way to the federal level. As an illustration, Smadi points out that it would be multijurisdictional to include two cluster patients who had relocated outside of the province in the interview process.

Additionally, doubts regarding the goals of the research Shephard had promised soon emerged. A few days following the announcement, Kat Lanteigne, a native of New Brunswick and the founder of BloodWatch, a nonprofit organization that advocates for a secure public blood system in Canada, received a mysterious text message on her cell phone from an unidentified source alleging that the province was not being serious about its investigation.

Lanteigne started contacting people in the federal and provincial governments, and the information she discovered unsettled her. Relitigating the working group’s initial findings—that is, whether a cluster of patients existed at all—seemed to be New Brunswick officials’ choice rather than taking the “boots on the ground” approach suggested by the federal scientists. Since “not one single environmental sample had left the province,” Lanteigne claims that they were not even attempting to look into the possibility of a toxicant. Not food or drink. There wasn’t much use for a public health department that was already short on resources attempting to find a common condition if the oversight committee found none. Lanteigne recollects thinking, “I think they’ve pulled the plug from the wall and nobody knows.”.

After his own father, Roger, was referred to Marrero, Lanteigne contacted Steve Ellis and shared her findings with him. Together, they created a Facebook group for patients and family members. “Want to fight back?” she enquired. Ellis soon gathered a group of patients and relatives who had strong reservations about the province’s practices. The investigation was conducted primarily in secret, to start with. Marrero was kept apart from the patients as well, supposedly to prevent him from influencing the neurologists on the oversight committee’s work. According to Stacie Quigley Cormier, whose daughter Gabrielle Cormier was the cluster’s youngest confirmed case, “we had no idea what was going on.”. All that could be heard were crickets. The patients were so desperate for a response that the silence was unbearable. When her family was waiting to hear back from the responsible public health officials, Gabrielle, who was twenty years old at the time and found it difficult to walk without a cane, requested to be admitted to a hospital for mental support.

News that further complicated the case surfaced in October 2021. The startling conclusion was released by Dr. Gerard Jansen, the neuropathologist in charge of the autopsies of the eight patients in the cluster: each of the eight patients passed away from recognized illnesses like cancer, Lewy body dementia, and Alzheimer’s disease rather than from an unexplained illness. Tim Beatty learned that the autopsy results had been made public while he was traveling to work over the radio. I almost drove off, so I can actually point out where I was on the road,” he says. “.

In the end, Jansen had given up on the cluster months before the autopsies became public. He proposed what is referred to as a “null hypothesis” in the field of public health—that is, the idea that there is no connection between findings until strong evidence indicates otherwise—in an email to colleagues that May. During the autopsy process, Jansen had not observed any consistent pathology in the patients’ brains and was skeptical of the different hypotheses that the working group had proposed. “The evidence that is currently available directly suggests that this cluster is not real,” the author wrote. “.

When I questioned Marrero about the autopsy results, he told me that Jansen presented them with such authority that it surprised him. He stated, “The pathologist is not in the position to establish causality.”. While Marrero was certain that Jansen had discovered evidence of multiple diseases, she did not rule out the possibility that those diseases had been brought on by environmental factors. He clarified, “People exposed to heavy metals sometimes develop severe neuropathy, sometimes develop cancer, and sometimes develop Parkinsonism.”. Nevertheless, heavy metal exposure persists. “.

Many of Marrero’s colleagues in the working group concurred that Jansen had not only overreached himself but also neglected to address the most pressing questions surrounding the situation: “Why so many young? Why so many in one area? Why so many in one family?” These were poignant questions in the context of a cluster of atypical cases that had bewildered some of Canada’s most seasoned scientists. Using a “loophole” that has allowed politicians to conclude that nothing coherent is happening, one of them referred to Jansen’s findings in an email that was leaked last year. “.

The publication of Jansen’s findings marked a sea change for patients and those who supported them. “At that point, we declared, ‘Gloves off,'” Jill Beatty informed me. Ellis’s Facebook group turned into a hub for suggestions on how to refute the official story. It was discussed that the patients might crowdsource their own environmental testing and ask Erin Brockovich to conduct an independent study. Ellis started making appearances on TV and podcasts, pleading for the return of the federal experts to New Brunswick. Lanteigne and associates submitted so many FOIA requests that Marrero claims he was contacted by provincial officials inquiring as to whether he had employed a private detective.

However, despite their best efforts, the patients were unable to provide any answers to the issues causing the controversy. After the province turned down the federal experts’ assistance, many theories started to circulate. These included conspiracy theories blaming the influence of corporate interests and bureaucratic incompetence, as well as questions about why they weren’t testing for toxic substances given the uncertainty of the science. Marrero had arguably the most well-liked position. He told me last summer, “I think the word ‘environment’ was what created the scare.”. He feels the province lost interest in testing its air, soil, and water in the spring of 2021 as a concrete plan started to take shape. Among the most well-known and lucrative industries in the area are forestry, tourism, and seafood, all of which depend on a healthy environment to flourish. The province’s economy might suffer greatly if testing turned up evidence of environmental contamination in New Brunswick.

Even though Marrero’s theory was pure conjecture, several specialists in the working group eventually came to the conclusion that political factors had superseded scientific ones. These experts declined to speak on the record due to concerns that their remarks might affect their ability to receive public funding, but they all seemed to agree that provincial officials had wasted a rare chance to advance the kind of wide-ranging scientific inquiry that a full-scale study offered by initially restricting their investigation. A senior scientist told a reporter from the Canadian magazine The Walrus, shortly after the working group was disbanded, “We have an unbelievably capable set of tools to look at biological and epidemiological and environmental characteristics.”. The potential that is lying unrealized is astounding. “.

Marrero thought he was stuck. In his capacity as the official neurologist, he was required to furnish the oversight committee with consent forms, and he recommended that patients cooperate with the province’s investigation. However, he persisted in believing that something environmental caused the illness, which he believes made him a target. He expressed his dissatisfaction that his efforts were “being sidelined with attempts to dismiss my concerns and my pleas and create hurdles” in a letter to Dr. Jennifer Russell, the chief medical officer of health for the province. Before going into the hallway to see if anyone from the hospital administration was listening in, he would first use his finger to quiet the patients during appointments.

His nerves grew brittle with time. He spoke gravely to me during our talk about an incident that happened a few years ago when he drove from his home to a television interview in an industrial area of Moncton and was followed by a man in a blue car. He motioned for the show’s producer to come down to the studio building, but the other car took off as soon as she arrived. “I could have an ‘accident,'” he remarked, “and nobody will ever find out.”. “.

On Feb. Russell declared the oversight committee’s work completed on April 24, 2022. “Could find no common exposure in the group,” she said of the survey. That’s also what neuropathologist Jansen concluded from his autopsies. Put simply, there was no such syndrome.

Province-wide health officials outlined their conclusions about what they thought went wrong in their final report. They contended that the illness’s case definition was unduly vague, overlapping with other conditions. It was therefore unnecessary to test on human tissue. They also singled out Marrero, who disputes the accusation, for not getting second opinions prior to sending patients to the cluster. He points out that the working group provided second opinions in several cases in 2021, even going so far as to remove some from the cluster. One of Canada’s top neurologists, Dr. Neil Cashman, was consulted extensively about the matter, according to Marrero, and agreed to travel to New Brunswick to personally meet with patients before the province’s inward turn derailed the plan.

It seemed that Marrero’s federal colleagues disagreed with the province’s conclusions in recently disclosed emails. Written by Dr. Samuel Weiss, a neuroscientist employed by the federal agency that provided the $5 million to fund the investigation, it appears that the interests of those affected have not been prioritized in the actions taken. How this has been the case and how it will remain the case is part of a larger mystery surrounding the government’s motivations for prioritizing politics, power, and procedure over the humanity of healthcare. Even more blunt was Dr. Michael Coulthart, who oversees the federal surveillance system for Creutzfeldt-Jakob disease. He sent coworkers an email that stated, “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, too, believed that an environmental trigger was probably the reason behind Marrero’s patients’ decline. He said, “I think the truth will come to light eventually.”.

The government report came as a terrible blow to the patients. They started getting letters outlining various diagnoses for their doctors to take into consideration from provincial health officials prior to its publication. It was suggested that Gabrielle Cormier might have schizophrenia. Ellis was informed that his father could have supranuclear palsy that progresses. The committee based its second opinions solely on medical charts, without having seen any of the patients in person. This was a particularly difficult task given the complexity of diagnosing neurological conditions. Cormier and Ellis had not been referred to Marrero until those two specific conditions were ruled out by specialists. Actually, one of the neurologists on the oversight committee had already ruled it out in Ellis’s case.

Possible cancer, alcohol-induced brain damage, and H diagnoses were given to other cluster members. I. VIII. as well as a wide variety of dementias, all of which testing years ago had ruled out. It was now instructed that the patients go back to the same doctors who had referred them to Marrero because they were so confused by their symptoms. Since there was no other option, the circular logic of it was especially offensive. The last report was out. The matter was concluded. Ellis stated, “It simply felt like the biggest betrayal.”. “My father is in a care facility, having paid taxes his entire life in New Brunswick, and neither the federal government nor the province are making any efforts to assist him. “.

Although the province has insisted that the Public Health Agency of Canada approved of the findings of its investigation and that it was a scientifically sound investigation, its account of events included a sobering admission. Provincial authorities stated that the patients suffered from well-known incurable diseases rather than an illness that was previously unknown. And they were doing so at startlingly high rates, particularly among youth.

It was at a Moncton hotel with a view of the Trans-Canada Highway that I first met Marrero last year. He made a cordial introduction while wearing a beautifully tailored gray suit. But it was evident that his sinister suspicions had not lessened as we took the elevator to my room. He was reluctant to talk to me in the hotel conference room and wouldn’t talk to me on his work phone prior to our meeting. It had been almost 18 months since he had spoken to the media. He clarified, “It’s better that I don’t talk if I’m thinking only about myself as a person and as a doctor. He was advised not to do it by his attorney. But Marrero felt obligated to act. “Those who are sick require answers from me,” he uttered. And to help them in every way that I can. “.

Marrero informed me that since the province’s investigation was over, things had gotten worse. There are now over 430 patients in his care who cannot be diagnosed, 111 of whom are younger than 45. There have been thirty-nine fatalities. Based on Marrero’s calculations, New Brunswick is currently the epicenter of one of the world’s most widespread clusters of young-onset dementia. “Those who were a part of this cannot claim they were unaware,” he declared.

Additionally, there had been developments in clinical practice. Marrero discovered in December 2022 that a toxicology lab in Quebec was prepared to test patients for four different pesticide classes, including glyphosate, a herbicide commonly used in New Brunswick’s forestry sector. He wondered if there might be a connection because he had observed a pattern of new referrals peaking in the late summer and early fall, when pesticide use is at its highest. Marrero sent over a hundred samples right away after the lab approved a sample from one patient. The outcomes were stunning. Ninety percent of Marrero’s patients had elevated blood levels of glyphosate, up to fifteen thousand times the test’s lowest detectable concentration in one instance.

The results don’t really mean anything by themselves. One cannot comprehend the results in their entirety without a control group. It’s possible that glyphosate exposure in New Brunswick is high for everyone due to spraying. However, the results are consistent with a growing movement in Canada and around the globe to acknowledge the dangers that chemicals like glyphosate pose to human health. Marrero was able to arrange for the tests to be conducted in Quebec in part because the province formally acknowledged in 2021 the connection between glyphosate and a higher risk of Parkinson’s disease. It is now known from recent research that glyphosate can penetrate the blood-brain barrier and cause long-term neurological inflammation that may precipitate Alzheimer’s disease. According to Marrero, “I am not drawing the conclusion that this is the reason for what is happening.”. However, something about it seems to be alerting me to a problem with the surroundings in which they reside. “.

Whatever Marrero’s conviction, the reality is that there are still far more questions than answers regarding the situation in New Brunswick. And of course the answer to the most fundamental question of all, which is precisely what is making New Brunswickers ill, remains elusive. Was the epidemiological study blocked by political or corporate interests, as Marrero told me he suspected? Or was he an overzealous physician who had rushed to stamp his name on a novel disease, as the province’s report implied?

But one thing that is evident is that the political and scientific collision that is taking place there is not going to stay limited to the province. The manner in which diseases present in the human body will surely change as the body of evidence connecting neurological disorders and environmental factors grows. It’s not hard to picture the next mysterious illness cluster appearing out of nowhere.

Marrero worries about it all night long. He declared, “We need to work together on this.”. The reason for this is not limited to the residents of New Brunswick; the source of the problem may be widespread. Six other Canadian provinces have already referred him. He was unsure of how he thought the situation would turn out in the long run when I asked. His response was, “I don’t pretend to have the answer.”. Science, in my opinion, ought to provide the solution. “.

Photographer, videographer, installationist, text writer, and sound artist Brendan George Ko is based in Toronto and Maui. He just held a solo show at Toronto’s Patel Brown gallery.