The newly elected premier of New Brunswick has called on Canada’s federal government to aid in a “full, open scientific investigation” into the mysterious brain illness that has plagued the province for years, in a move that those suffering from the condition hope could finally bring answers.
“We need to conduct a thorough investigation into what is making people sick,” the premier, Susan Holt, told the National Post.
Health officials first warned in 2012 that more than 40 residents of the province were suffering from a possible unknown neurological syndrome, with symptoms similar to those of the degenerative brain disorder Creutzfeldt-Jakob disease. A year later, however, an independent oversight committee created by the province determined that the group of patients had most likely been misdiagnosed and were suffering from known illnesses such as cancer and dementia. A final report from the committee, which concluded there was no “cluster” of people suffering from an unknown brain syndrome, signalled the end of the province’s investigation.
But earlier that year, the Guardian reported that a top federal scientist worried there was “something real going on” in New Brunswick. Another said the investigation “was shut down” and that caseloads were higher than officially acknowledged. “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,” the scientist wrote.
More than 450 people in the province – many living on the Acadian peninsula – are believed to be suffering from the illness, including several under the age of 45. At least 40 people have died, according to the premier.
Holt said the initial funding of C$5m (US$3.5m) from the federal government, which the previous provincial government turned down, was still on offer.
“It’s devastating in how it comes on and how it debilitates people,” Holt said. “The inexplicability of it is agony. Not knowing what’s caused it, what’s going to happen next, what the treatment path is. But knowing that it doesn’t seem to be treatable and people around you have died from this is terrifying. So, I think we need to be doing everything we can to shed some light on this and find a way to stop what’s making people sick.”
Terriline Porelle has suffered from the illness for four years, but so rapid has her deterioration been that she is unable to cook because her hands are too hard to control. She now relies nearly exclusively on frozen meals, and as her memory deteriorates she requires constant reminders from her smart speaker to take medications, shower and eat.
Hold’s comments made her hopeful for “full transparency and a real investigation into what is making us sick”, she said.
“Hopefully with a new leader that seems to have integrity and a heart and soul, things will not just be swept under the rug,” she said. “I am hopeful that Premier Holt will do the right thing by us patients and the people of New Brunswick.”
Porelle also said families wanted an internal investigation into why the province turned down help from the federal government and also to hold “politicians accountable for their actions or inactions”.
