A leading federal scientist in Canada claimed he was barred from conducting an investigation mysterious brain disease in the province of New Brunswick and said he feared more than 200 people affected by the condition were 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 [New Brunswick] which absolutely cannot be explained by the bias or personal agenda of an individual neurologist,” wrote Michael Coulthart, a prominent microbiologist. “A few cases are best explained by the latter, but there are just too many (now over 200).”
Health officials in New Brunswick warned in 2021 that more than 40 residents were suffering from a possible unknown neurological syndrome, with symptoms similar to those of the degenerative brain disorder Creutzfeldt-Jakob disease. Those symptoms were varied and dramatic: some patients started drooling and others felt like bugs were crawling on their skin.
A year later, however, an independent oversight committee was created by the province determined that the group of patients was most likely misdiagnosed and suffered from known diseases such as cancer and dementia.
The committee and the New Brunswick government as well doubts about the job from neurologist Alier Marrero, who was initially referred dozens of cases by confused doctors in the region, and subsequently identified more cases. The doctor has since become an ardent advocate for patients he feels have been neglected by the province.
A final report from the committee, which concluded that there is no “group” of people suffering from an unknown brain syndrome, marked the end of the province’s investigation.
But leaked emails seen by the Guardian tell an entirely different story, suggesting senior research scientists at Canada’s Public Health Agency (PHAC) remain increasingly concerned about the cause – and the debilitating symptoms – of a seemingly inexplicable disease that disproportionately affects younger people.
In an October 2023 email exchange with another PHAC member, Coulthart, who served as the federal lead in the 2021 investigation into the New Brunswick disease, said he was “essentially cut off” from any involvement to the issue, adding that he believed the reason was political.
Coulthart, a veteran scientist who currently heads Canada Creutzfeldt-Jakob Disease Surveillance System, did not respond to a request for comment by the Guardian. But in the leaked email, he wrote that he believes an “environmental exposure — or a combination of exposures — causes and/or accelerates a variety of neurodegenerative syndromes” with people seemingly predisposed to different protein misfolding ailments , including Alzheimer’s disease and Parkinson’s disease. disease.
Coulthart argues this phenomenon does not fit easily within “shallow paradigms” of diagnostic pathology and the complexity of the issue has given politicians a “loophole” to conclude that “nothing coherent” is going on.
“I believe the truth will emerge in time, but for now all we can do is … continue to collect 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.
New Brunswick’s health department did not respond to specific questions about Coulthart’s emails.
“Although Dr Alier Marrero has made statements about findings and observations relating to a large number of patients, since May 2023 the public has Health New Brunswick received a total of only 29 full notifications from Dr. Marrero,” a spokesperson for the province’s health department told the Guardian in an email.
“It is being reviewed … to date Public Health New Brunswick has not received any similar notifications from other physicians.”
Coulthart’s email emerged more than a year later Marrero pleaded with the Canadian government performing environmental tests that he believed would show the involvement of glyphosate.
Marrero, who initially worked closely with Coulthart, declined to comment on the October emails, instead referring questions to the county’s health authority.
In the years since the cases were first flagged to health officials, those suffering say that various levels of government have ignored their plight.
“Politicians don’t want to admit that something serious is going on, because then they have to address it,” said one young woman, adding that since the province issued its final report, she has received no assistance or follow-up. despite worsening symptoms.
She now suffers from muscle tremors and poor coordination, and has been told by doctors that her visual and memory decline is reminiscent of a patient several decades older.
“My condition progressed and things were much more challenging,” she said. The woman, who asked not 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, to shower and to eat.
“I miss being able to drive and having a sense of independence,” she says. “I don’t recognize myself from the inside.”
