Provincial government has also put little effort—and sometimes halts—to further investigations
Since 2019, New Brunswick’s government has reported several cases of neurological problems with an unknown cause and potentially deadly outcomes. Some of the reported symptoms of the mysterious disease include muscle spasms, visual hallucinations and visual impairment or blurriness, memory and balance problems, weight loss, behavioural changes, concentration difficulties, and pain in limbs.
Dr. Alier Marrero, a Moncton neurologist, noted that it was similar to the Creutzfeldt-Jakob disease, a fatal and incurable neurodegenerative disease, and has been investigating the concerns since. His first encounter with the mystery illness, according to the Toronto Star, was in 2013; only six years later was information available and action was seen on the provincial government’s concern with the disorder. Since 2013, a total of 48 people have been diagnosed, ten of whom have tragically died.
The provincial government’s page on the investigations on the subject, titled “Potential Neurological Syndrome,” aims to debunk the mystery of the illness, noting it as a coincidental series of cases with no “common behaviours, food or environmental exposures.” Geographic similarities, however, can be seen: thirty-five cases have been documented in the Acadian Peninsula, eight in the Moncton region, and one of unknown origin in the province.
In February 2022, an oversight committee researching the origins of the syndrome concluded that there was no common thread to the conditions and that the unknown nature of it was merely a coincidence of various other diseases. Dr. Jennifer Russell, New Brunswick’s Chief Medical Officer of Health, further emphasized the report’s claims in 2022 that the people experiencing these unknown symptoms “should never have been identified as having a neurological syndrome of unknown cause [… and that] no such syndrome exists.”
Despite these claims and results, there still remains public concern about the disease and the government’s response to it. An investigative article by CANADALAND found that there was limited participation of patients, which inevitably led to the inconclusive results currently available.
The city of Moncton’s water supply, for example, was considered a possible concern. However, the results did not indicate any notable problems. Other studies have considered shellfish and algae blooms, with particular concerns for the presence of any nerve-damaging toxins, none of which were concluded to be of concern.
News outlets have been critical of the generally unreliable studies’ research methods, claiming limited scope with participants and geographic focal points, limited complicity of various businesses and industries in research, and the inconclusive results granted through the methods, such as through telephone calls. The government’s active termination of some research endeavours and attempts has also heavily contributed to the stunted development of research in the area.
For example, CANADALAND noted that the provincial government put on hold a federal funding proposal being written by the Canadian Institute for Health Research to research any potential origins of the disease in 2021, without any further explanation. Health ministers declined to explain the reasons for the change of heart. The government has also reportedly rejected funding offers for federal research—over five million dollars since 2021.
Currently, there are few resources being put into further exploring the disease. The main investigative body for the field in the province has been the MIND Clinic—a Moncton-based, Horizon Health-owned clinic that explores interdisciplinary approaches to diagnosing neurological diseases in the province.
Dr. Alier Marrero was one of the doctors at the MIND clinic, leaving the position in August 2022. Marrero has been vocal about the limited support their investigations have received from the provincial government; despite his continued work and advocacy for the disease’s investigation, he was not included in any of the steering committees in 2021 or 2022. Investigations in 2023 have not been officially reported by the government online.
Some news outlets, like CBC, suggest that the province may have chosen to close the cases due to the fact that Marrero was an outlier in the medical field which led to the closing of further investigations into the disease. Federal and provincial researchers have explicitly noted a lack of concern for any clinical bias.
The disease is a seriously troubling and dangerous issue, with almost no reported research currently being conducted. Further research may arise from current investigations by the Cruezdfelt-Jakob Disease Surveillance System (CJSS). The CJSS is a federal national surveillance entity for human prion disease, which occurs when misfolded proteins replicate in the brain and result in neurodegenerative diseases.
These investigations, despite their merit, have limited capabilities if the provincial government continues to suspend any exploration of the disease.
Megan Mitton, MLA for Memramcook-Tantramar, has been highly critical of the limited investigation of the disease and has adamantly commented on the need for more resources to be put into research. In a post on March 2 on the Green Caucus website, she demanded that the province “investigate [the] high rate of neurodegenerative disease in younger New Brunswickers.”
The provincial government has yet to comment on Mitton’s call to action.
- Even as Aura wrote this article, the information on the disease is limited, and coverage on investigations is also scarce. Do you have any insight into why this does not seem to be a priority of the provincial government? What does the government stand to gain or lose from further investigation?
- You’ve recently made public comments about your dissent to the province’s inaction on research into the neurological disease. Would you be able to explain what inspired you to make these comments despite the seemingly limited support and interest?
- It seems the number of patients dealing with an unknown neurological disorder is rising, despite PHNB already declaring this to be a closed case, and complaints that their investigation had failed to reach out to everyone who had reported their symptoms, even at that time. If cases continue to rise, do you expect to see the investigation re-opened?
- The PHNB special committee was formed in June 2021 and published their findings in February of 2022. The period from formation to publication was therefore only 8 months. Is this enough time to reach conclusive results? In your experience does this fall in line with standard practice?
- On March 2, Global News published an article where you are quoted as saying, ““If this isn’t a huge population health thing and it’s a bunch of different things, that doesn’t mean we shouldn’t look into it just because it’s not fitting a certain case definition that they have,” This was a point that stuck out to me as I’ve been researching this: how do you think Public Health views their responsibility to New Brunswickers? Is there interest in seeking out problems, or rather to simply respond when the problem becomes too severe to ignore?
- In March 2021, Chief Medical Officer, Jennifer Russell sent a memo warning healthcare providers about a cluster of progressive neurological syndrome of unknown etiology.” Under a year later, she reversed her opinion, falling in line with the findings of PHNB.It seems the GNB is simultaneously appealing to authority to quell concern and dissent about the PHNB oversight committee’s finding that there is no unique neurological disorder in NB. However, they’ve also shut down efforts to conduct further research. In fact, it seems the GNB’s response to criticism about the lack of action being taken rests on the authority of 6 experts they, themselves appointed while blocking the efforts of anyone outside their purview to gather their own findings. There seems to have been a point where the GNB shifted their position about this – do you have any insight into when exactly this was and what may have brought this about?
- In his article for the Walrus that introduced me to this story, as I’m sure it did many others, Matthew Halliday reports that NB initially reached out to the PHAC, yet they later blocked them from continuing research and even from commenting publicly about the case. How did NB go about asking the PHAC for help – was it the GNB or independent researchers reaching out for support. What reasoning was given for asking and then revoking the request?
- What authority does the GNB have to prevent scientists like those at PHAC from speaking about their findings and opinions on the case?
- It seems like the Green Party are the only ones in the NB government who are interested in advocating for those impacted by this mysterious illness – has there been any support for this from other members of the NB legislative assembly?