A leading federal scientist in Canada has claimed he was banned from researching a mysterious brain disease in the province of New Brunswick, saying he fears more than 200 people affected by the condition are experiencing unexplained neurological decline.
The allegations, made in leaked emails to a colleague seen by The Guardian, emerged two years after the Eastern Province closed its investigation into a possible “cluster” of cases.
“All I will say is that my scientific opinion is that there is something real going on in (New Brunswick) that absolutely cannot be explained by the bias or personal agenda of any individual neurologist,” wrote Michael Coulthart, a leading microbiologist. “A few cases may be best explained by the latter, but there are simply too many (now more than 200).”
New Brunswick health officials warned in 2021 that more than 40 residents were suffering from a possible unknown neurological syndrome, with symptoms similar to those of Creutzfeldt-Jakob degenerative brain disease. These symptoms were varied and dramatic: some patients began drooling and others felt as if insects were crawling on their skin.
However, a year later, an independent monitoring committee set up by the province determined that the group of patients had most likely been misdiagnosed and suffered from known diseases such as cancer and dementia.
The commission and the New Brunswick government also cast doubt on the work of neurologist Alier Marrero, who initially was referred dozens of cases by baffled doctors in the region and then identified more cases. The doctor has since become a fierce advocate for patients he believes have been neglected by the province.
A final report from the committee, which concluded that there was no “cluster” of people suffering from an unknown brain syndrome, signaled the end of the province’s investigation.
But leaked emails seen by The Guardian tell a very different story, suggesting that senior research scientists at the Public Health Agency of Canada (PHAC) are increasingly concerned about the cause – and debilitating symptoms – of a seemingly unexplained illness that is disproportionately affects many younger people.
In an October 2023 email exchange with another PHAC member, Coulthart, who led the federal lead on the 2021 New Brunswick disease investigation, he said he had been “essentially cut off” from any involvement in the issue , and added that he believed the reason was political.
Coulthart, an experienced scientist who currently heads Canada Surveillance system for Creutzfeldt-Jakob disease, did not respond to a request for comment from the Guardian. But in the leaked email, he wrote that he believes “environmental exposure – or a combination of exposures – causes and/or precipitates a variety of neurodegenerative syndromes,” in which people are apparently susceptible to various disorders that cause protein misfolding, including Alzheimer’s disease and Parkinson’s disease. disease.
Coulthart argues that this phenomenon does not fit easily within the ‘shallow paradigms’ of diagnostic pathology and that the complexity of the issue has given politicians a ‘loophole’ to conclude that there is ‘nothing coherent’ going on.
“I believe the truth will emerge in due time, but for now we can only continue to gather information on the cases that come to us as suspected prion disease,” Coulthart wrote.
Copies of the email exchange were sent to the parliamentary health committee by a patient advocacy group in March, but it is unclear whether any action was taken. The committee did not respond to a request for comment.
The New Brunswick Health Department did not respond to specific questions about Coulthart’s emails.
“Although Dr. Alier Marrero has made statements regarding findings and observations regarding a large number of patients, Public Health New Brunswick has only received a total of 29 complete reports from Dr. Marrero since May 2023,” a spokesperson for the health department said. province. told the Guardian in an email.
“These are under review… to date, Public Health New Brunswick has not received any similar reports from other physicians.”
Coulthart’s email appeared more than a year after Marrero begged the Canadian government to conduct environmental testing that he believed would prove glyphosate’s involvement.
Marrero, who initially worked closely with Coulthart, declined to comment on the October emails, instead directing questions to the province’s health authority.
In the years since the cases were first reported to health officials, those affected say various levels of government have ignored their plight.
“Politicians don’t want to acknowledge that something serious is going on because then they have to address it,” said one young woman, adding that she has received no help or follow-up since the province released its final report. despite the fact that symptoms worsen.
She now suffers from muscle tremors and poor coordination, and doctors told her her visual and memory decline is reminiscent of a patient decades older.
“My condition is improving and things have been much more challenging,” she said. The woman, who did not want to be named, cannot cook because her hands are too difficult to control and she now relies almost exclusively on frozen meals. As her memory deteriorates, she needs constant reminders from her smart speaker to take medication, shower and eat.
“I miss being able to drive and having that feeling of independence,” she says. “I don’t recognize myself inside.”