Canada’s top federal scientist claims the government has halted its investigation into a mysterious brain disease in New Brunswick that he believes may have affected 350 people.
He is the second federal scientist to accuse the government of deliberately shutting down investigations and said the number of cases is higher than the government admits.
Health officials in the eastern province said for the first time in 2021 that 40 people were suffering from an unexplained neurological illness. A year later, a committee established by the province determined the patients may have been misdiagnosed and suffered from other illnesses.
In a leaked email seen by the Guardian, Professor Samuel Weiss, a neuroscientist at the Canadian federal agency responsible for funding medical research, wrote that the government had deliberately reduced its search for an explanation.
“In the spring of 2021, I felt very optimistic that the government would do its best to solve this mystery. However, soon after, this scientific work was stopped at the request of the Scientific Committee. [federal and provincial] government,” Weiss wrote in an email sent in May.
“I think it would be helpful to suggest or point out who or why — just say we were prepared to mobilize financial and human scientific resources to solve this mystery, and they were turned down.”
It’s unclear who the email was sent to. In the end, Wes apologized sincerely. “All I can offer is a sincere apology for our poor response to this mysterious disease and hope you don’t suffer too much. You and the 350 other people affected deserve so much more.
Weiss, 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, has become a Canadian medical celebrity for his research on neurogenesis, the process of making neurons in the brain. Church members.
Weiss, New Brunswick health authorities and the Public Health Agency of Canada (PHAC) have been contacted for comment.
“The oversight board reviewed the case files for all 48 potential cases and found that the patients did not share symptoms or common medical conditions,” New Brunswick Public Health said on its website. “It is important to understand that Outbreak investigations are not uncommon… Every outbreak of an unexplained cluster or outbreak is treated as a ‘mystery disease’ until an outbreak investigation can be conducted to find out why people are getting sick.
While the province’s inquiry committee concluded there was no “cluster” of patients suffering from the mysterious illness, leaked emails show senior research scientists remain unconvinced.
The Guardian previously reported that 1,000 pages of internal documents obtained through a freedom of information request showed that early in the investigation, the province’s environment and public health department began eagerly exploring the possibility of an environmental cause along with federal counterparts. But by mid-2021, New Brunswick appeared to have halted its investigation without giving any explanation.
This month, The Guardian reported that another prominent federal scientist, Michael Coulthart, claimed he was barred from investigating the series of unexplained illnesses.
Coulthart, a microbiologist who heads Canada’s Creutzfeldt-Jakob disease surveillance system, wrote in a leaked email that he believes “environmental exposures—or combinations of exposures—are triggering and/or accelerating various neurodegenerative diseases. Syndrome” that people seem to be susceptible to. Different protein misfolding diseases, including Alzheimer’s disease and Parkinson’s disease.
News that top federal scientists believe the government obstructed the investigation has outraged some of those affected and their families, who are demanding responses.
“I was definitely shocked, but not surprised by the way this information was ignored. I think other officials had a moral and ethical responsibility to step in,” said Stacie Quigley Cormier, 23 Daughter Gabrielle, 20, suffers from a neurological condition that causes her muscles to atrophy and tremble.
“I don’t feel like they’ve forgotten us. I feel like they’re pretending to forget us and there’s nothing to see here,” she said in a phone interview, calling on the government to do more. “We need scientists to be able to do some testing, and we need to do other testing that may not be available in New Brunswick.”
After five years of searching for answers, Gabriel’s condition is worse than ever, Cormier said. “Her health was deteriorating. She was shaking more and she was suffering from neurosis.
Cormier said doctors discovered decreased function in Gabrielle’s frontal and temporal lobes and diagnosed her with anti-MAG peripheral neuropathy, an extremely rare disease typically seen in older men in which people’s The immune system produces antibodies that target key proteins in nerve cells.
The family believes unknown external causes, such as chemicals in the environment, are causing the cluster of illnesses and says more must be done to find out. “We know a lot of people are getting sick. We know there’s obviously a reason for this. As we get closer and closer to putting the pieces of the puzzle together, they’re still pointing in the same direction,” Cormier said.
Another New Brunswick woman suffering from the mysterious disease is angry the government isn’t taking the situation seriously. She said her anger at the government’s response exacerbated the difficulties she experienced as a result of the condition, including blurred vision, restless sleep, loss of appetite, muscle pain, stiffness, tremors and loss of balance and coordination.
“I can’t multitask and get frustrated easily, like I get angry about everything for no reason and have no patience,” said the woman in her 20s, who asked that her name be withheld to preserve her medical privacy.
“It’s extremely frustrating that at the end of the day, a group of politicians are trying to cover up this issue while they leave our doctors and scientists in a difficult situation and unable to do their jobs.”
