New Brunswick’s newly elected premier has called on Canada’s federal government to help conduct a “full, open scientific investigation” into the mysterious brain disease that has plagued the province for years, in a move that could finally help those suffering from the condition bring answers.
“We need to do a thorough investigation into what makes people sick,” Prime Minister Susan Holt told the National Post.
Health officials first warned in 2012 that more than 40 county residents were suffering from a possible unknown neurological syndrome, with symptoms similar to those of Creutzfeldt-Jakob degenerative brain disease. However, a year later, an independent monitoring committee set up by the province determined that the group of patients had most likely been misdiagnosed and suffered from known diseases such as cancer and dementia. A final report from the committee, which concluded that there was no “cluster” of people suffering from an unknown brain syndrome, marked the end of the province’s investigation.
But earlier that year, the Guardian reported that a top federal scientist was concerned that “something real was going on” in New Brunswick. Another said the investigation had “been abandoned” and that the caseload was higher than officially acknowledged. “I don’t think it’s helpful to suggest or refer to who or why – suffice it to say that we were prepared to commit both financial and human-scientific resources to address the mystery, but they were rejected,” wrote the scientist.
More than 450 people in the province – many living on the Acadian Peninsula – are believed to be suffering from the disease, including some under the age of 45. According to the Prime Minister, at least 40 people have died.
Holt said the initial C$5 million (US$3.5 million) funding from the federal government, which the previous provincial government had rejected, was still being offered.
“It’s devastating in the way it occurs and how it weakens people,” Holt said. “The inexplicability of it is agony. Not knowing what the cause is, what will happen, what the treatment process is. But knowing that it doesn’t seem treatable and that people around you have died from it is terrifying. So I think we should do everything we can to shed some light on this and find a way to stop what is making people sick.”
Terriline Porelle has suffered from the disease for four years, but her decline is so rapid that she can no longer cook because her hands are too difficult to control. She now relies almost exclusively on frozen meals, and as her memory deteriorates, she needs constant reminders from her smart speaker to take medication, shower and eat.
Hold’s comments made her hopeful for “full transparency and a real investigation into what makes us sick,” she said.
“Hopefully with a new leader who seems to have integrity and heart and soul, things won’t just be swept under the rug,” she said. “I am hopeful that Premier Holt will do the right thing for us, patients and the people of New Brunswick.”
Porelle also said families wanted an internal investigation into why the province refused help from the federal government and also for “politicians to be held accountable for their actions or inactions.”