Leaked emails show NB doctor looking into brain disease outburst believes politics cut him out

A leading federal scientist alleges he was barred from investigating a mystery brain illness in New Brunswick and said more than 200 people with the condition are undergoing neurological decline.The allegations, made in leaked emails to a colleague seen by the Guardian in the UK come two years after the 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 an individual neurologist,” microbiologist Michael Coulthart wrote.“A few cases might be best explained by the latter, but there are just too many (now over 200).”New Brunswick health officials warned in 2021 that more than 40 residents suffered from an unknown neurological syndrome, with symptoms similar to those of the degenerative brain disorder Creutzfeldt-Jakob disease. Some patients started drooling and others felt as though bugs were crawling on their skin.In 2022 an independent oversight committee created by the province determined that the group of patients had most likely been misdiagnosed and were suffering from cancer and dementia.The committee and the New Brunswick government also cast doubt on the work of neurologist Alier Marrero, who was initially referred dozens of cases by baffled doctors in the region, and subsequently identified more cases. The doctor has since become a fierce advocate for patients he feels have been neglected.A final report from the committee concluded there was no “cluster” of people suffering from an unknown brain syndrome. However, emails leaked to the Guardian suggest the Public Health Agency of Canada (PHAC) remains concerned.Coulthart served as the federal lead in the 2021 investigation into the illness. In an October 2023 email exchange with another PHAC member, he complained of being “essentially cut off” from any involvement in the issue for what he believed were political reasons.Coulthart currently heads Canada’s Creutzfeldt-Jakob Disease Surveillance System and did not respond to a request for comment by the Guardian.In the leaked email, he wrote that he believes an “environmental exposure — or a combination of exposures — is triggering and/or accelerating a variety of neurodegenerative syndromes” such as Alzheimer’s and Parkinson’s disease.Coulthart said the developments defy the “shallow paradigms” of diagnostic pathology, but the complexity of the issue has given politicians a “loophole” to conclude “nothing coherent” is happening.“I believe the truth will assert itself in time, but for now all we can do … is continue to collect information on the cases that come to us as suspect prion disease,” Coulthart wrote.Copies of the email exchange were sent to the parliamentary health committee by a patient advocacy group in March. The committee did not respond to the Guardian's queries.In response to other questions by the Guardian, a spokesperson for the province’s health department replied,“Although Dr Alier Marrero has made statements regarding findings and observations with regards to a large number of patients, since May 2023, Public Health New Brunswick has received a total of only 29 complete notifications from Dr Marrero,” the spokesperson said by email.“These are 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 after Marrero pleaded with Ottawa to carry out environmental testing he believed would show the involvement of glyphosate.Marrero, who initially worked closely with Coulthart, declined to comment and pointed the Guardian to the health authority.Some suffering tell the Guardian they're being ignored.“Politicians don’t want to acknowledge there is something serious going on, because then they need to address it,” said one young woman, adding that ever since the province issued its final report, she has received no assistance or follow-up amidst worsening symptoms. These include muscle tremors, poor coordination, and deterioration of vision and memory.“My condition is progressing and things have been much more challenging,” she said. The woman, who asked not to be named, has too little dexterity left to cook and lives on frozen meals. She relies on constant reminders from her smart speaker to remember to take medications, to shower and to eat.“I miss being able to drive and to have a sense of independence,” she says. “I don’t recognize myself on the inside.”