Second Canadian scientist alleges brain illness investigation was shut down

A senior Canadian federal scientist has alleged that the government shut down an investigation into a mystery brain illness in New Brunswick that he believes may have affected 350 people.

He is the second federal scientist to accuse the government of deliberately halting the investigation and to say that the caseload is higher than the government has acknowledged.

Health officials in the eastern province first said in 2021 that 40 people were suffering from an unexplained neurological condition. A year later, a committee assembled by the province determined that the patients probably had been misdiagnosed and were suffering from other diseases.

In a leaked email seen by the Guardian, Prof Samuel Weiss, a neuroscientist working for the Canadian federal agency responsible for funding medical research, wrote that the government had deliberately curtailed the search for an explanation.

“In the spring of 2021, I felt incredibly optimistic that an all of government effort to unravel the mystery was in the cards. However, in short order, the scientific effort was shut down at the request of the [federal and provincial] Governments,” Weiss wrote in the email sent in May.

“I don’t think it is helpful to suggest or point to who or why – suffice to say that we were prepared to marshal both financial and human scientific resources to tackle the mystery, but they were declined.”

It is not clear to whom the email was sent. It concluded with Weiss offering a heartfelt apology. “All I can offer is my sincere apologies for our poor response to the mystery illness – and my hope that you don’t suffer too much. You and the 350 others affected deserve so much more.”

Weiss is the scientific director of the Institute of Neuroscience, Mental Health and Addiction at the Canadian Institutes of Health Research and a member of the Canadian Medical Hall of Fame for his research in neurogenesis, the process by which neurons are generated in the brain, which has pioneered avenues for treatment of several degenerative brain diseases including Parkinson’s, Alzheimer’s and multiple sclerosis.

Weiss, the New Brunswick health department and the Public Health Agency of Canada (PHAC) were contacted for comment.

After publication, a New Brunswick health department spokesperson said: “New Brunswick does not hinder any research into this area of study. If the department of health determines any additional actions are needed, it will respond accordingly.”

The spokesperson outlined how medical professionals in New Brunswick had a duty to notify authorities of certain diseases, and said the department was assisting Dr Alier Marrero, who initially raised concerns about patients he was following. “Public Health New Brunswick has had ongoing discussions with PHAC on this file and has worked in partnership with the national agency several times to support Dr Marrero,” the spokesperson said.

Public Health New Brunswick says on its website: “An oversight committee reviewing the case files of all 48 of the potential cases found that the patients didn’t have symptoms in common or have a shared common illness. It’s important to understand that outbreak investigations are not rare … Every cluster or outbreak with an unknown cause is considered a ‘mystery illness’ until an outbreak investigation can be done to find out why people are becoming ill.”

While the province’s investigative committee concluded there was no “cluster” of patients with a mystery illness, the leaked emails show that senior research scientists remain unconvinced.

Related: ‘What’s going on with me?’ Canadian victims of mystery illness suffer alone

The Guardian has reported previously that 1,000 pages of internal documents obtained by freedom of information requests showed that early on in the investigation the province’s department of environment and public health units began eagerly exploring the possibility of environmental causes alongside their federal counterparts. But by mid-2021, New Brunswick appeared to have halted the probe with little explanation.

This month, the Guardian reported that another leading federal scientist, Michael Coulthart, had alleged he had been barred from investigating the cluster of unexplained illnesses.

Coulthart, a microbiologist who heads Canada’s Creutzfeldt-Jakob Disease Surveillance System, wrote in a leaked email that he believed an “environmental exposure – or a combination of exposures – is triggering and/or accelerating a variety of neurodegenerative syndromes”, with people seemingly susceptible to different protein misfolding ailments including Alzheimer’s and Parkinson’s.

The revelations that top federal scientists believe the government has stonewalled an investigation has infuriated some of those affected and their families, who are demanding a response.

“I really feel alarmed but not surprised at how the information is being dismissed. And I feel that there is a moral and ethical responsibility for other officials to step in,” said Stacie Quigley Cormier, whose 23-year-old daughter Gabrielle is suffering from a neurological disorder that has left her with muscle loss and shaking.

“I don’t feel like they’ve forgotten about us. I feel like they’ve intentionally pretended to forget about us and that there’s nothing to see here,” she said in a phone interview, calling on the government to do more. “We need the scientists to be able to do some testing, we need access to other testing that maybe we don’t have in New Brunswick.”

After five years of searching for answers, Gabrielle’s condition is worse than ever, Cormier said. “There’s a decline in her health. She was shaking more, and she has neuropathy.”

Doctors have identified decreased functioning in Gabrielle’s frontal and temporal lobe, Cormier said, and diagnosed her with anti-MAG peripheral neuropathy, an extremely rare condition usually found in older men, in which a person’s immune system develops antibodies against a key protein in the nervous system.

The family believe that an unidentified external cause, such as a chemical in the environment, has caused the cluster of illnesses and say more must be done to identify it. “We know that so many people are sick. And we know that something is obviously causing this. As we get closer to putting some of these puzzle pieces together, they’re still pointing in the same direction,” Cormier said.

Another woman in New Brunswick who is suffering from the mystery illness was furious at the thought of the government not taking the situation seriously. She said her anger at the government’s response was adding to the difficulties she was experiencing as a result of the condition, including blurred vision, disturbed sleep, loss of appetite, muscle aches, stiffness, tremors and a loss of balance and coordination.

“I can’t multitask and get frustrated very easily, like I get mad over nothing for no reason and have no patience,” said the woman, who is in her 20s and asked to withhold her name to retain her medical privacy.

“It’s extremely frustrating that at the end of the day a bunch of politicians are trying to sweep it under a rug and they are leaving our doctors and scientists gagged and unable to do their jobs.”