Over time, his nerves began to fray. During our conversation, he told me gravely about an incident a few years ago when he was followed by a man in a blue car as he drove from his home to a television interview in an industrial section of Moncton. At the studio building, he asked the show’s producer to come down; when she appeared, the other car sped away. “I could have an ‘accident,’” he said, “and no one’s going to know.”
On Feb. 24, 2022, Russell announced that the oversight committee had finished its work. The survey, she said, ‘‘could find no common exposure in the group.’’ It was the same conclusion that Jansen, the neuropathologist, reached after his autopsies. In short, the syndrome didn’t exist.
In their final report, provincial health officials explained what they believed had gone wrong. They argued that the case definition for the illness was overly broad, to the point that it overlapped with other conditions. Because of that, no human-tissue testing was needed. They also singled out Marrero for not seeking second opinions before referring patients to the cluster, an assertion he rejects. He notes that in 2021, the working group had offered second opinions in a number of cases, going so far as to remove a few from the cluster. Marrero says he also spent countless hours discussing the situation with Dr. Neil Cashman, one of Canada’s foremost neurologists, and Cashman later agreed to go to New Brunswick to meet with patients face to face before the province’s inward turn scuppered the plan.
In recently leaked emails, Marrero’s federal colleagues also appeared to reject the province’s findings. “It seems that the best interests of those affected have not been at the forefront of the actions taken,” wrote Dr. Samuel Weiss, a neuroscientist working for the federal agency that offered the $5 million to fund the investigation. “How this has and continues to be the case — is part of a larger mystery around the intentions of the Government’s focus on politics, power and process — over the humanity of care.” Dr. Michael Coulthart, head of the federal surveillance system for Creutzfeldt-Jakob disease, was even more direct. “My scientific opinion is that there is something real going on in NB that absolutely cannot be explained by the bias or agenda of an individual neurologist,” he wrote in an email to colleagues. He, too, felt that the decline in Marrero’s patients was most likely caused by an environmental trigger. “I believe the truth will assert itself in time,” he concluded.
For the patients, the government’s report was a devastating blow. Before its release, they began receiving letters from provincial health officials detailing different diagnoses for their physicians to consider. Gabrielle Cormier was told she might be schizophrenic. Ellis was told that his father might have progressive supranuclear palsy. The committee hadn’t seen either patient in person; it based its second opinions on medical charts alone, a particularly challenging assignment considering the nuance involved in diagnosing neurological conditions. As it turned out, those two specific conditions had been ruled out by specialists before either Cormier or Ellis had been referred to Marrero. In fact, in Ellis’s case, it had been ruled out by one of the neurologists on the oversight committee itself.
