Top Canadian scientist claims in leaked emails he was barred from studying mysterious brain disease | Canada

A leading Canadian federal scientist says he has been barred from investigating a mysterious brain disease in the province of New Brunswick and said he fears more than 200 people affected by the disease could suffer neurological decline unexplained.

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 happening in (New Brunswick) that absolutely cannot be explained by the bias or personal agenda of an individual neurologist “, wrote Michael Coulthart, a leading microbiologist. “Some cases might be better explained by the latter case, but there are simply too many (now over 200).”

New Brunswick health officials warned in 2021 that more than 40 residents suffered from a possible unknown neurological syndrome, with symptoms similar to the degenerative brain disease Creutzfeldt-Jakob disease. These symptoms were varied and dramatic: Some patients began drooling and others felt like bugs were crawling on their skin.

A year later, however, an independent oversight committee established by the province determined that the group of patients had most likely been misdiagnosed and suffered from known illnesses such as cancer and dementia.

The committee and the New Brunswick government also questioned the work of neurologist Alier Marrero, to whom dozens of cases were referred by baffled doctors in the region, and who subsequently identified more cases. The doctor has since become a staunch advocate for patients he says have been neglected by the province.

A final report from the committee, which concluded there was no “cluster” 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 and suggest that top scientific researchers at the Public Health Agency of Canada (PHAC) remain increasingly concerned about the cause – and debilitating symptoms – of a seemingly unexplained illness that disproportionately affects young people.

In an October 2023 email exchange with another PHAC member, Coulthart, who led the federal investigation into the disease in New Brunswick in 2021, said he had been “essentially cut off” from any involvement in this question, adding that he thought the reason was political.

Coulthart, a senior scientist who currently leads Canada’s Creutzfeldt-Jakob disease surveillance system, did not respond to a request for comment from the Guardian. But in the leaked email, he writes that he believes “environmental exposure – or a combination of exposures – triggers and/or accelerates a variety of neurodegenerative syndromes” in people apparently susceptible to different diseases linked to protein misfolding, including Alzheimer’s disease and Parkinson’s disease. disease.

Coulthart argues that this phenomenon does not fit easily into the “superficial paradigms” of diagnostic pathology and that the complexity of the issue has given politicians a “loophole” to conclude that “nothing coherent is happening”.

“I believe the truth will become clear with time, but for now all we can do…is continue to collect information on cases that come to us as suspected prion disease,” Coulthart wrote .

Copies of the email exchange were sent to the House 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 Department of Health 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, since May 2023, Public Health New Brunswick has only received a total of 29 complete notifications from Dr. Marrero,” said a spokesperson for the province’s health department. told the Guardian in an email.

“These are under review…to date, Public Health New Brunswick has not received any similar notifications from other physicians.” »

Coulthart’s email emerged more than a year after Marrero pleaded with the Canadian government to conduct environmental testing that he said would demonstrate the involvement of glyphosate.

Marrero, who initially worked closely with Coulthart, declined to comment on the October emails, instead directing his questions to provincial health authorities.

In the years since the cases were first reported to health authorities, victims say different levels of government have ignored their plight.

“Politicians don’t want to acknowledge that something bad is happening, because then they have to fix it,” said one young woman, adding that since the province released its final report, she has not received any help nor any follow-up. despite worsening symptoms.

She now suffers from muscle tremors and poor coordination, and doctors have told her that her deteriorating eyesight and memory are reminiscent of a patient decades older.

“My condition is progressing and things have been much more difficult,” she said. The woman, who asked to remain anonymous, is unable to cook because her hands are too difficult to control and she now subsists almost exclusively on frozen meals. As his memory deteriorates, his smart speaker constantly reminds him to take his medication, shower and eat.

“I miss being able to drive and having a sense of independence,” she says. “I don’t recognize myself inside.”