The Fifth Estate

The Cluster: New Brunswick's Mysterious Illness (47x4)

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While this is a story about a cluster of people living in New Brunswick with a “neurological disease of an unknown cause,” in many ways, it’s really a story about people trying to get answers and help from their health-care system and the provincial government. Back in April, in collaboration with CBC New Brunswick investigative journalists, The Fifth Estate started to delve into a story about a neurological syndrome nobody could explain. A cluster had been identified and 48 New Brunswickers were part of it. As our research progressed, we met many people along the way: families, individuals in the cluster and the neurologists they went to in hopes of understanding their debilitating symptoms: muscle spasms, memory loss, brain fog, anxiety. One of those people was Steve Ellis. After not seeing his father, Roger, for 10 months because of a COVID-19 lockdown, he was going to drive from his home in Nova Scotia to Bathurst, N.B., to visit his dad. It was an important trip: for the past two years, his father was rapidly declining from a neurological condition and time was of the essence. “It's running out,” Steve told us. “And it's running out not only for my dad, but for everyone else who's dealing with this.” Roger had been identified as one of the 48 people in the cluster. When my colleague, Karissa Donkin, and I contacted Steve and asked if we could film his journey to Bathurst, we knew it was a tall request. But we wanted to illustrate the urgency and anxiety families face on a daily basis when faced with the unknown. There are no cures for neurological diseases, and for the individuals in the cluster and their families, they only have to look at the experiences of others to see their own possible future. Tim and Jill Beatty have already lost their loving father, Laurie, who brought people joy. And then there’s Gabrielle Cormier. She’s only 20 and is becoming a prisoner in her own body. For more than two