Analysis

Government officials misled the public about the “mysterious” New Brunswick neurological disease, and we have the documents to prove it

Here are the 10 biggest takeaways after pouring over thousands of pages of internal government documents obtained through access to information

It was in the winter of 2021 that the world first became aware of a mounting number of patients being seen in New Brunswick with unusual neurological symptoms, potentially suffering from a shared illness of unknown cause. A year later, the Government of New Brunswick released a report dismissing the entire issue, claiming there had never been a “cluster” of patients to begin with.

CANADALAND has obtained thousands and thousands of pages of internal documents that take us behind the scenes of an investigation into a mystery that once caught the attention of the nation, before being dropped like a hot potato.

These documents were acquired through access-to-information requests with the help of a non-governmental organization called BloodWatch that advocates for patients in Canada.

To jog your memory, if you don’t recall CANADALAND’s earlier story on this subject, this all started in 2019 and 2020, when multiple healthcare practitioners began seeing an increased frequency of patients presenting with what doctors described as “atypical, rapidly progressive dementia.” These cases were referred to a federal surveillance system meant to track Creutzfeldt-Jakob disease (CJD), one variation of which is seen in humans when they consume meat infected with mad cow disease. CJD is part of a family called prion diseases.

When this federal surveillance system (the CJDSS) saw a “higher than expected” number of suspected CJD cases coming out of New Brunswick, it started investigating. Testing for prion diseases delivers pretty definitive results, so researchers at the CJDSS felt comfortable ruling out any prion disease, according to the documents.

What stood as a cluster of 33 patients in December 2020 grew to 48 patients that were formally recognized by the spring of 2021; at that point, the province of New Brunswick closed admission to the cluster, according to internal documents that detail the timeline of events. However, letters to Canada’s chief medical officer indicate that, as of early 2022, the original lead neurologist on this file continued to see new referrals in excess of 100 patients.

But the search for what was happening to these patients really kicked off in the spring of 2021, when federal and provincial governments across numerous departments came together and started trying to answer the question of why so many people with unexplained symptoms were being seen by healthcare practitioners in the province.

The documents obtained by CANADALAND illustrate what did and did not happen as part of that investigation and how the Government of New Brunswick turned down a chance to conduct the scientific research that could have delivered the answers that patients and the public wanted.

Despite the province closing down any research into a common cause of illness in February 2022, the symptoms never ended for those suffering from them, or for their families. And the documents indicate that there are likely more and more people who would be added to the list if any public health agency were still keeping track.

All individuals mentioned in this story (and nearly all names mentioned in these thousands of pages of emails) were asked for interviews or comment. No one agreed to be interviewed.

In a statement, the federal health agency says only that they continue to “work closely with the provinces and territories, partners, and stakeholders to monitor and understand risks to human health from neurological diseases and will build on any lessons learned from this investigation.”

These are 10 of the biggest takeaways from the contents of these documents:

1) The New Brunswick government seemed only to care whether or not there was some new ‘mystery’ illness. They should have been asking: Is there something out there that’s making people sick?

In early 2021, headlines ran rampant that there might be a “new” or “mystery” neurological disease causing people in the province to fall ill. And why wouldn’t that be the story? That was the information given by the province’s top doctor.

At a press conference in March 2021, New Brunswick Chief Medical Officer Jennifer Russell said, “It most likely is a new disease. We haven’t seen this anywhere else. And so it is of unknown etiology, but the symptoms are very much like CJD.”

But internally, scientists at both the federal and provincial levels didn’t refer to what they were seeing this way. Emails and presentations instead called it an “undiagnosed neurological syndrome” or a “syndrome of unknown cause.”

While researchers didn’t initially rule out that it was a new disease, they were far more focused on finding an environmental cause(s) of what was happening.

An internal PowerPoint presentation prepared by the Public Health Agency of Canada (PHAC) dated April 6, 2021, said, “The current investigation is suggesting the cluster could be linked to environmental causes.” The same presentation identified environmental toxins, food safety, zoonoses (diseases that can be transmitted between animals and humans), and fisheries as key areas where experts were being engaged.

In other summary documents generated for internal distribution by the PHAC dated May 9, 2021, the agency said, “Primary data shows that the disease is not genetic, and could be contracted from water, food, or air. It is not known if the disease is contagious.…Other possibilities include an environmental toxin similar to domoic acid, which caused the Canadian amnesic shellfish poisoning cases in 1987, or beta-Methylamino-L-alanine (BMAA).”

Domoic acid and BMAA are both neurotoxins that can be produced by different types of cyanobacteria, more commonly known as blue-green algae, that has become a regular scourge of the East Coast in recent years. (More on this later.)

In a similar vein at the provincial level, emails show that New Brunwick’s lead epidemiologist, Hanan Smadi, was also concerned about environmental causes.

But field research into those potential environmental causes was never conducted. Instead, the public health authority of New Brunswick funded a case review of the 48 patients’ charts. The provincial government released its final report on February 24, 2022 [pdf], declaring that there was in fact “no evidence of a cluster of neurological syndrome of unknown cause.”

This was primarily based on criteria that were drawn up early in the investigation that limited participation in the cluster to patients who did not have a known diagnosis. And so, one by one — starting on June 7, 2021 — patients were provided with lists of potential diagnoses that eliminated them from the investigation.

But according to patients from the cluster and their family members, the potential diagnoses they were assigned had already been ruled out through testing that had previously been conducted.

“They go by different tests and different reviews that say, for example, my father could have X, Y, and Z, but there’s no definitive answer. And every single patient received that same letter but tweaked to their situation, and none of them were given a definitive diagnosis,” says Steve Ellis, whose 65-year-old father has now been sick for three and a half years.

In an interview with CANADALAND, Ellis expresses frustration that only when a patient dies and an autopsy is performed have authorities offered conclusive diagnoses.

“From my father’s perspective, he has symptoms from essentially three different diseases, but he doesn’t meet all the criteria to be diagnosed with any one of them,” Ellis says.

The documents reflect that confusing reality: federal researchers noted that even a deceased patient who was diagnosed with Lewy body dementia postmortem had, when alive, presented with symptoms that didn’t match that diagnosis.

“Dying with Lewy body (dementia) in short time is still atypical,” said Tom Kosatsky, medical director of the British Columbia Centre for Disease Control (BCCDC), according to minutes of a meeting from April 2021 where federal and provincial researchers were present.

And so the core question for researchers remained: what was it that was making people sick? And that question was never investigated through field research, because the province of New Brunswick closed the probe in February 2022 with that final report concluding no cluster had existed in the first place.

2) Water and shellfish were the two areas researchers were most focused on. Why? Because of blue-green algae.

Thanks to leaks and external researchers coming forward in 2021, it was widely reported by media that one particular neurotoxin, called BMAA, was being considered as a possible area for further investigation, because researchers in Guam had previously observed patients developing multiple known neurological diseases following contact with the neurotoxin.

However, the documents show that this was not the only neurotoxin researchers were investigating. Cyanobacteria (a.k.a. blue-green algae) has many varieties and, in addition to BMAA, can produce different types of toxins, some of which are known to be recurring problems on the East Coast.

Cyanobacteria blooms are an increasing concern, believed to be linked primarily to climate change, but also to runoff of fertilizers and urbanization.

Researchers at both the federal and provincial levels seemed to agree that this area as a whole was their leading theory for what was causing the cluster. They had identified it as a key area of concern early in 2021, according to emails, yet New Brunswick’s Health Minister of the day said at a press conference the following June that possible environmental factors had not been narrowed down.

“We can’t have a narrow focus here,” Dorothy Shephard said in response to a reporter’s question. “We must examine any and all possibilities. And as those possibilities evolve, we’ll certainly share them with you.”

But according to slides from a heavily-redacted internal presentation drawn up by provincial researchers, there were three leading possibilities for what was going on at an environmental level:

– Atypical presentation of known disease cause by cyanobacteria
– Novel cyanobacteria toxin infection/disease (currently not identified)
– Novel presentation caused by the presence of multiple causative agents in addition to cyanobacteria (metal, pesticides, genetics, etc…)

Provincial epidemiologist Omarwalid Noorzada said in an email dated March 28, 2021, “BMAA from cyanobacteria (including other water/seafood toxins) has been part of our recent discussions (after prion diseases showing lesser likelihoods from initial clinical, lab, autopsy finding) due to the coastal distribution of the cases in the cluster and similar clinical pictures resulting from their bioaccumulated exposures historically.”

“It was emphasized that public concern is not driving this investigation. It is being directed by the concern raised by the Infectious Disease Specialists, Medical Microbiologist and Neurologist.”

These toxins can enter the human body through consumption of water, through recreation, or by consuming food in which the toxins have accumulated. Often, the impacts are witnessed first in other wildlife and have been seen around the world from Botswana, to the UK, to Argentina.

On March 29, 2021, Smadi, the epidemiological lead for the province, shared an article about a mass dieoff event of bald eagles in Arkansas that had remained a mystery for 25 years, but in the end was linked to a neurotoxin produced by cyanobacteria in freshwater lakes.

It was noted in emails that there had been no similar mass dieoff events of wildlife that might give them a clue as to where to begin their research.

The province pursued mapping to determine if there were areas where cyanobacteria blooms were common in relation to cases. The province also started mapping where shellfish harvesting closures had occurred because of high toxin levels, monitored through the Canadian Shellfish Sanitation Program (CCSP), administered by the Canadian Food Inspection Agency (CFIA).

A provincial summary of information on shellfish distributed internally by Smadi noted that these toxins (specifically one called PSP, or Paralytic Shellfish Poison) have been found in lobster in Canada since 2008. It’s not the meat that is of primary concern but rather the lobster tomalley (the internal green goo that acts as the liver and pancreas).

Other information Smadi collected from the CFIA indicated that a three-year survey had previously been conducted, and that high levels of PSP were found in lobster harvested in the Digby area of the Bay of Fundy (in the northwestern part of Nova Scotia, across the bay from Saint John, New Brunswick), and in parts of the Gulf of Saint Lawrence.

This is how the Washington State Department of Health describes PSP: “This biotoxin affects the nervous system and paralyzes muscles, thus the term ‘paralytic’ shellfish poison. High levels of Paralytic Shellfish Poison can cause severe illness and death.”

The province was also tracking a toxin called domoic acid, also known as ASP (short for Amnesic Shellfish Poison). The CFIA tracked 95 harvesting closures for shellfish between 2015 and 2021 in the Bay of Fundy region, according to the documents. Nine of them were related to ASP, and 86 were related to PSP. As far back as the 1980s, mussels containing ASP had been connected to human health problems in P.E.I.

Closure orders administered by the CFIA would only pertain to commercial fisheries.

Minutes from a meeting that took place on April 15, 2021, between federal and provincial representatives noted “significant” referrals of new patients coming in from the southern coast of the province, along the Bay of Fundy. This was not a primary area represented by members of the originally identified cluster.

3) Moncton’s water supply was explored by provincial researchers as an area of possible concern.

The City of Moncton was an original focus of the investigation, as 70 per cent of the original 33 cluster patients were reported to live in that area.

It was in March 2021 that Erin Douthwright — currently the manager of water sciences for the province but at the time an environmental biologist with two decades of experience – identified a “history of cyanobacteria in the Moncton area” as a possible area of interest for further investigation, according to meeting minutes.

The municipal government in Moncton had been pursuing research into the presence of cyanobacteria in its reservoirs for years by that point, with its findings updated annually. Those reports were forwarded to provincial researchers.

One of the research summaries from those reports said that “massive harmful algal blooms (HAB) were detected in 2017 at [Turtle Creek reservoir], the drinking water supply for Moncton, Riverview, and Dieppe,” and that thereafter researchers were tracking “cyanotoxin accumulation including anatoxins (ATX) and microcystins (MCs) in the four reservoirs of the Moncton area.”

ATX is noted in the research to be associated with acute neurotoxicity and is known as a nerve-damaging toxin originally called “very fast death factor.” (In the mapping the province did of freshwater lake closures due to the presence of cyanobacteria, MCs and ATX were found elsewhere in the province as well.)

The Moncton research showed that cyanobacteria was primarily found in three of the four city reservoirs, with the exclusion of the main reservoir that feeds the drinking water supply; however, cyanobacteria had previously been detected in all four.

In 2020, testing of two of the most abundant species of cyanobacteria in the Moncton reservoirs found that they were those capable of producing ATX and MCs. Both cyanobacteria species had a cell count that “was higher than WHO recommendations,” according to the report.

Provincial researcher Douthwright noted when sharing these reports from the City of Moncton that BMAA — was a leading theory for Dr. Michael Coulthart, a federal researcher at the CJDSS — had never been tested for.

Smadi also contacted Moncton’s regional health officer, Yves Léger, in a March 2021 email, concerning “the investigation related to blue-green algae that took place a few years ago in Moncton.”

“No, we don’t have any formal reports done for this,” Léger wrote in response. The remaining three paragraphs of his message are redacted in the documents released.

That same spring, the federal, provincial, and municipal governments assembled for a press conference to announce $21.9 million in funding for Moncton to research the impacts of blue-green algae on the water supply and for the city to work on upgrades so that treatment could begin. However, public officials drew no connection between the two events.

4) There were suspected cluster patients referred from seven other provinces, as well as international concern raised by the WHO.

According to meeting minutes from April 2021, patients had been referred to the cluster from other provinces, including Quebec, Newfoundland, Saskatchewan, and Alberta. Some had previously lived or spent a significant amount of time in New Brunswick.

Federal meeting minutes from May 2021 also indicate that there was at least one referral from Nova Scotia: “A potential case attributed to this syndrome was recently identified in Nova Scotia; it does not appear to have originated in New Brunswick, as the patient has not been a past resident of New Brunswick.”

The following month, New Brunswick’s health minister stated publicly that she was unaware of cases from other provinces.

In a letter sent almost a year later, in February 2022, the neurologist who was originally the lead on the investigation, Dr. Alier Marrero, wrote to Dr. Theresa Tam, the federal chief public health officer, that patients were also identified in P.E.I. and Ontario, as well as one Canadian now living in Australia.

Emails show a failure on the part of the New Brunswick government to engage with public health officials in neighbouring provinces as referrals came in. On June 4, 2021, a Quebec public health nurse contacted Smadi, New Brunswick’s lead epidemiologist, regarding a referral from the province of Quebec. The nurse sought to set up a meeting between the health officer in Quebec and Smadi to get an update on the investigation and discuss the referral. Smadi declined to set up a meeting but instead referred the nurse to the MIND Clinic in Moncton, which the New Brunswick government had established as the central referral point.

The nurse countered, saying she believed further conversations about public health implications were needed. Smadi did not respond further but asked one of the other researchers to forward the nurse a copy of the case definition. No further response is included in the documents.

International media attention, specifically a report in The Guardian, prompted concern at the international level. A representative from the World Health Organization directed questions to the Public Health Agency of Canada (PHAC), but the questions were forwarded to the province. The executive director of public health said in an email that a response would be prepared, but any followup was not included in the documents obtained by CANADALAND.

CANADALAND asked for interviews and comment on this investigation from the PHAC as well from the federal health minister. The only response received was by email and said that the investigation was under the jurisdiction of the New Brunswick government and that “PHAC continues to work closely with the provinces and territories, partners, and stakeholders to monitor and understand risks to human health from neurological diseases and will build on any lessons learned from this investigation.”

5) There were great working relationships between federal and provincial scientists determined to find the answers, until the province of New Brunswick brought that all to a halt without explanation.

The emails and meeting minutes obtained by CANADALAND depict a reasonably smooth working relationship between researchers at the federal and provincial levels across many departments. Numerous working groups were developed, with weekly meetings taking place.

However, that all came to a grinding halt on May 6, 2021, when a calendar event was deleted without explanation, cancelling further meetings between federal and provincial researchers. A belated email then followed that said meetings were cancelled while the province undertook a review of existing cases. This is the earliest mention in the documents that the provincial government sought to have neurologists review patient files. (That was the same case review that then went on to end the investigation altogether with its report in February 2022.)

The cancellation of the meetings appeared to leave federal researchers very confused, as indicated by their email responses.

May 6 was a Thursday, and one senior epidemiologist within the outbreak management division of PHAC asked Smadi what had changed from when they set up meetings on Tuesday.

Smadi responded that they had “changed directions since last Tuesday. We are planning to do a deeper dive into the existing cases before engaging other experts. We will keep you informed and we will let you know when we are ready to resume regular meetings.”

Those meetings were never resumed, and the province asked for all federal research to cease while they pursued their review.

Smadi did not respond to multiple requests for an interview, nor did New Brunswick’s current and former health ministers.

6) $5M of federal research funding was being fast tracked to explore the cluster and its possible environmental causes. The province said: No thanks.

In addition to the PHAC offering research support (alongside other federal agencies like the CFIA), in the spring of 2021, the Canadian Institutes of Health Research (CIHR) was fast-tracking a funding proposal for a two-phase $5 million research program to investigate New Brunswick’s neurological syndrome of unknown cause. This was being overseen by the president of CIHR, Michael Strong, according to emails. Strong declined an interview request.

The first phase would have sought to expand the understanding of the circumstances of patients that had already been referred to the cluster. The second phase was set to involve scientific field research into possible environmental causes.

Prior to the abrupt change in direction on May 6, Smadi had been consulting with Kosatsky at the BC Centre for Disease Control to develop plans for this field research; these consultations were cancelled in early May 2021 as well.

According to minutes of a meeting where representatives from PHAC and CIHR were present, the province of New Brunswick specifically asked for the funding application to be put on an indefinite hold.

7) The subsequent case review was taken on by overworked neurologists.

The province established an oversight committee that was meant to undertake this new line of investigation pursued by the province, based on a case review of the 48 cluster patients that had been identified by April 2021. While new referrals continued to come in, documents show they were not included in this case review.

This oversight committee began meeting on June 2, 2021, according to minutes, and was led by Édouard Hendriks, a vice president at New Brunswick’s Horizon Health Network, and Natalie Banville, Hendriks’s counterpart at the province’s second health network, Vitalité.

“One of the most striking characteristics of our patients are the hallucinations…and the always terrifying hallucinatory dreams, that evolve to be constant even when they are awake”

Internal emails indicate that there were difficulties that persisted for months in tracking down contact information for the 48 patients, as well as identifying who all of the patients in the cluster were, since the original referrals were made to a federal agency.

Meeting minutes from October 2021 lay out that the handful of neurologists involved in the case review were each asked to review two to three cases between meetings, in addition to maintaining their full caseload of work. The minutes indicate there was a request for more neurologists to be added to the roster and an indication that more had expressed interest in being involved, however, it doesn’t appear from the documents that additional resources were added.

By October 2021, with the release of a report on an epidemiological survey [pdf], the provincial authorities had already begun to indicate they did not believe the cluster of patients was in fact a cluster at all.

As far as what was detailed in meeting minutes, only one external researcher was invited to address the provincial oversight committee, and it was pathologist Gerard Jansen, who has publicly spoken about his belief that the cluster should not have been classified as such.

8) The lead neurologist who was later made a scapegoat in this investigation had received high praise from his peers for his work on the file.

As a working neurologist in New Brunswick, Dr. Alier Marrero was one of two key players who first identified the cluster in 2019. The second was Dr. Michael Coulthart, the head of the federal CJDSS, where all of the cluster patients were originally referred.

The pair was instrumental in the early investigation at disseminating information and expanding the pool of experts being relied upon. According to meeting minutes in multiple instances, there was consensus at every step that what was being seen was unusual and required further investigation. There was no indication in the documents that these two individuals were the sole driving forces, though Marrero especially was later painted to have been a rogue actor who pushed for an investigation that the province concluded wasn’t needed.

For example, at a January 2020 meeting with 30 representatives from both the provincial and federal levels, it was an external infectious disease expert and consultant, Dr. Gordon Dow, who said a full investigation was required. Those same meeting minutes stated, “It was emphasized that public concern is not driving this investigation. It is being directed by the concern raised by the Infectious Disease Specialists, Medical Microbiologist and Neurologist.”

Additionally, when Marrero reached out to provincial health representatives asking for more provincial resources and attention to be devoted to the cluster in September 2020, the letter was signed by another neurologist and two geriatricians. The letter said, “over the past two years, we have encountered an unexpected increased number of cases of atypical rapidly progressive dementia … we feel it is our duty to officially notify our provincial Public Health authorities about this finding.”

In late 2020 and early 2021, as the provincial government began to build steam in this investigation, they determined that new referrals should come through the newly-created MIND Clinic, which meant that all new referrals ended up coming from one person. This was later used to suggest that Marrero was a medical outlier, and cited as a reason for closing the investigation. The province used the creation of the MIND Clinic to publicly demonstrate their commitment to getting to the bottom of the cluster, though they never properly resourced it.

Various documents establish that early on Marrero was being asked to do a great deal of work with little support from the province.

“I have been on call for the province for the last 72 hours in a row and it was extremely busy and with little sleep,” Marrero wrote to the oversight committee at one point, to explain why he’d yet to send over patient files. “Also, there is yet to be a nurse, a secretary, a social worker, or a psychologist at the clinic so I’m doing all of the work by myself. We hope they will be here soon. This week, I will be seeing other patients as much as possible and will also try to see the many new referrals. We will be in touch.”

When the results of the epidemiological survey were presented, the province tried to highlight that the majority of patients had been referred by Marrero. However, minutes of a meeting from February 2021, where federal and provincial researchers were present, indicate that researchers weren’t particularly concerned about this. The minutes read, “We don’t see a strong correlation with clinician referral bias.”

Internal emails show that one of the key figures driving the theory that the cluster was simply connected to one individual neurologist’s referrals was the executive director of New Brunswick Public Health, Eric Levesque.

In an email dated December 14, 2021, Levesque emailed federal researchers asking for more details about who had referred patients to the federal surveillance body (the CJDSS). “New Brunswick would like to request a detailed line list as well as the complete referral files for all the patients that have been referred to CJDSS by Dr. Marrero and any other NB physicians for the neurological cluster over and above the 54 records you have already provided,” the email reads.

According to his LinkedIn profile, Levesque has no medical or scientific education background, but rather an MBA; after a decade of working in government health policy and planning, he was promoted to the level of associate deputy minister in January 2022.

The documents obtained by CANADALAND repeatedly demonstrate that Marrero was shown respect and gratitude from his research peers both directly, as well as privately between themselves.

In an email from May 2021, Strong, the president of the CIHR, said in an email to Marrero, “I cannot imagine the onslaught of cases that you are now receiving nor how you are managing to keep your own practice and this balanced. We all owe you a debt of gratitude.”

Marrero has not responded to CANADALAND’s requests for an interview.

9) Scientists are being muzzled in Canada. Yes, still.

As previously mentioned, not a single researcher named in this story agreed to be interviewed. But the access to federal and provincial scientists appears to go beyond simply declining interview requests.

In internal emails dated April 28, 2021, New Brunswick’s lead epidemiologist requested that one of the federal researchers that had been contacted for the investigation sign a non-disclosure agreement (NDA), to which she objected and insisted that her previous commitments to privacy should be sufficient. This was the only reference to NDAs seen in the documents, and it’s unclear how widely they may have been used.

However, there was also a documented policy shift at the federal level in May 2021, after the provincial government asked for the federal agencies to cease their research. “As the syndrome continues to garner national and international media attention, a coordinated communications strategy must be established for this initiative. It was suggested that media responses be limited to written interviews only,” meeting minutes said.

For this story, CANADALAND submitted a request to speak with the lead federal researcher associated with this investigation, Coulthart with the CJDSS. In an email, Coulthart suggested that CANADALAND had to contact PHAC media relations to see if an interview would be possible.

The PHAC spokesperson said Coulthart “does not have any availability for an interview.” CANADALAND responded to the spokesperson, cc’ing Coulthart, offering that we would speak to him at any time that fit his schedule, even if it was after our deadline.

The spokesperson removed Coulthart from the email chain and reiterated: “As mentioned, Dr. Coulthart does not have any availability for an interview at this time.”

In an April 2022 article about the New Brunswick investigation, Neurology Today quoted Coulthart as saying, “Unfortunately, although I have well-formed, critical scientific opinions on this matter, I am not permitted to express them publicly.”

Similarly, requests to a researcher and the president of CIHR were forwarded to the PHAC, which only offered the written statement referenced in item no. 4.

No responses were received at all from anyone from within the New Brunswick government or health authorities.

10) There are indications new patients are still surfacing with these symptoms, but there is no indication in these documents that anything is being done about it.

The province stopped counting how many patients might belong in the cluster in April 2021, capping it at 48. However, emails make clear that by December 2021, the province knew that 54 patients were suspected to be exhibiting the same syndrome. Largely the only way to track how many patients were referred after that point is to go by correspondence and minutes of meeting where Marrero spoke, as he was the only one who appears to have continued to keep track.

In meeting minutes from April 2021, Marrero discussed the fact that he had just referred two new patients – one in their 30s, another in their 50s – who were experiencing progressive Alzheimer’s. He also referenced another new patient in their 50s who could no longer form words. He said that new referrals were being seen in the Fundy area and in Saint John.

In an email dated May 9, 2021, Marrero indicated to federal and external researchers that as awareness of the syndrome and cluster in New Brunswick grew, he was seeing more and younger patients with some symptoms that had not been well-identified at the time the case definition was established early on.

“I do have, unfortunately, more and younger patients,” he wrote. “One of the most striking characteristics of our patients are the hallucinations (visual, but also tactile and auditory) and the always terrifying hallucinatory dreams, that evolve to be constant even when they are awake. I would underline the very atypical pain syndromes and the rapid progression of diffuse muscle atrophy in many cases.”

Additionally, meeting minutes show that by the spring of 2021, there were six documented instances where pairs of people in the same household were exhibiting similar symptoms.

In a letter to federal health representatives in February 2022, Marrero continued to plead for more attention to be paid to this. He said he had seen 100 new referrals and didn’t have the resources to work through them.

That is the last clue obtained from the documents that suggests the number of referrals has been continuing to rise in New Brunswick while the provincial health authority is no longer keeping count.

The national CJDSS referral numbers, however, are higher for 2022 than they have ever been. When CANADALAND asked the PHAC for a provincial breakdown of those figures, media relations said that was not possible due to privacy concerns.

Top image incorporates a screencap of then New Brunswick Health Minister Dorothy Shephard speaking at a press conference on June 3, 2021, and an aerial photo from the City of Moncton of one of the municipality’s reservoirs.

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