'It's a ticking clock': mysterious neurological disease patients are calling on the government for transparency
Recent claims from an article in The Walrus that the New Brunswick government urged federal experts to keep quiet on the investigation into a mysterious brain disease have caused frustration among those who have been diagnosed -- and their families.
It's been nearly six months since the provincial government provided the public with new information on the unknown neurological disease that has only been found in New Brunswick. Those affected by this neurological syndrome, including 20-year-old Gabrielle Cormier from Dalhousie, N.B., are frustrated with the lack of transparency they've been given. This comes after a story by The Walrus, which claims that on June 3, the province asked members of a national committee to stop their work in investigating the disease.
"It's a ticking clock, you have to do this quickly because people are dying and getting worse," said Cormier. "In the beginning, I didn't really bother with all the politics and all of that stuff. But now I learn that was a lie and those people stopped doing research five months ago."
Cormier said she was diagnosed in April 2021 with a mysterious neurological disease. She started getting sick in October of 2019 but tried her best to continue studying through university.
"With all of the doctors and specialists that I thought were working on this, what if they had found a treatment to prevent me from getting permanent brain damage?"
Cormier said she has not suffered permanent brain damage from this disease, but it is one of her greatest fears if the cause of this disease is not discovered soon.
According to The Walrus, the same day the national committee was told to halt their research was the day, Health Minister Dorothy Shephard announced the oversight committee which is intended to find causes for the disease and seek expertise from federal and provincial physicians.
New Brunswick Public Health’s epidemiology and surveillance branch "developed an enhanced surveillance questionnaire for the investigation to better understand potential exposures," Health Department spokesperson Bruce Macfarlane wrote in an e-mail. "Public Health drew up the questionnaire and conducted the interviews.
Dr. Alier Marrero is the neurologist leading the team of researchers investigating the syndrome at the Mind Clinic. Their investigative work is exploring all potential causes including environmental, food, and animal exposures.
According to the New Brunswick Public Health website, 48 cases have been confirmed and nine people have died.
Some opposition politicians in the province, including Green Party MLA Megan Mitton, don't believe the investigation into the disease is being met with the urgency it deserves.
"It is very concerning if the Public Health Agency of Canada and the experts that were assembling were told to stand down," said Mitton. "That is confusing. Why would, especially in a pandemic, where we need all of the public health resources that we can get, why would the government refuse help from experts?"
Steve Ellis' father Roger Ellis turned 64 on Tuesday. It's days like this that serve as a reminder how quickly time is passing by, he said
"Every day that the government doesn't do anything is taking a day away from my dad's life," Steve Ellis says.
Roger Ellis is one of the 48 individuals included in the cluster. Roger experienced a rapid cognitive decline two years ago after experiencing a fall. He is now living in a home and being treated by Dr. Marrero.
"I've learned with this government to not have any expectations," said Steve Ellis.
CTVNews.ca Top Stories
Grandparent scam: London, Ont., senior beats fraudsters not once, but twice
It was a typical Tuesday for Mabel Beharrell, 84, until she got the call that would turn her world upside down. Her teenaged grandson was in trouble and needed her help.
Deaths of 4 people on Sask. farm confirmed as murder-suicide
The deaths of four people on a farm near the Saskatchewan village of Neudorf have been confirmed a murder-suicide.
CRA no longer requiring 'bare trust' reporting in 2023 tax return
The Canada Revenue Agency announced Thursday it will not require 'bare trust' reporting from Canadians that it introduced for the 2024 tax season, just four days before the April 2 deadline.
Full parole granted to man convicted in notorious 'McDonald's murders' in Cape Breton
The Parole Board of Canada has granted full parole to one of three men convicted in the brutal murders of three McDonald's restaurant workers in Cape Breton more than 30 years ago.
Incident on Calgary's Reconciliation Bridge comes to safe resolution
Nearly 20 hours after a man climbed and remained perched on top of the Reconciliation Bridge in downtown Calgary, the situation came to a peaceful resolution.
Sunshine list: These were the Ontario public sector's highest earners in 2023
Ontario released its annual sunshine list Thursday afternoon, noting that the largest year-over-year increases were in hospitals, municipalities, and post-secondary sectors.
George Washington family secrets revealed by DNA from unmarked 19th century graves
Genetic analysis has shed light on a long-standing mystery surrounding the fates of U.S. President George Washington's younger brother Samuel and his kin.
'We won't forget': How some Muslims view Poilievre's stance on Israel-Hamas war
A spokesman for a regional Muslim advocacy group says Conservative Leader Pierre Poilievre's stance on the Israel-Hamas war could complicate his party's relationship with Muslim Canadians.
Why some Christians are angry about Trump's 'God Bless the USA' Bible
Former U.S. President Donald Trump is officially selling a copy of the Bible themed to Lee Greenwood’s famous song, 'God Bless the USA.' But the concept of a Bible covered in the American flag has raised concern among religious circles.