When Roger Ellis fell ill two years ago, his family rushed to the hospital, fearing he was having a heart attack. Doctors quickly ruled that out, but days later, he suffered from a seizure.
In the following weeks, the retired industrial mechanic, 64, who lived in the east Canadian town of Bathurst, New Brunswick, grew increasingly anxious and disoriented, and often repeated himself.
His condition rapidly deteriorated. In his first three months in hospital, he lost 60 pounds and had to eat through a tube and use a wheelchair.
“We nearly lost him a couple of times,” said his son, Steve.
Doctors were stumped. They ruled out epilepsy, a stroke, Creutzfeldt-Jakob disease, autoimmune encephalitis and cancer. Roger spent more than a year in the hospital before he was transferred to a care home.
“We just unfortunately accepted the fact that we weren’t going to know what he had until he died,” said Ellis.
Roger remains in the care home, and his family now believes he is part of a cluster of people suffering from a mysterious progressive neurological illness.
The cases, largely concentrated in a sparsely populated area of New Brunswick, have stumped experts. And the mystery has prompted a fierce row between officials who suggest the cases are unrelated, and scientists who have argued that they may all have been triggered by environmental factors or contaminants.
Victims experience unexplained pains, spasms and behavioural changes, said Dr Alier Marrero, the neurologist who first identified the cluster. Many then showed signs of cognitive decline, muscle wasting, drooling and teeth chattering and frightening hallucinations.
So far, 48 cases have been publicly acknowledged, but officials familiar with research into the cluster have told the Guardian that the number of affected people now exceeds 100.
Public health officials have been tracking the cases for nearly a year and given little indication they were close to a solution.
But in a surprise turn of events, New Brunswick’s health minister, Dorothy Shephard, announced in late October that an epidemiological report had found no significant evidence that any known food, behaviour or environmental exposure could be responsible.
The press conference followed a controversial paper presented to the Canadian Association of Neuropathologists that claimed eight deaths attributed to the cluster were “misdiagnoses” of known diseases, such as Alzheimer’s and cancer.
New Brunswick officials started to float the idea that the cluster itself might be a conflation of unrelated cases. But the sudden shift has prompted concern among victims’ families that the province is rushing to declare the case closed.
“It was just a display of how incompetent and disorganized the province has been,” said Ellis, who says other families he has spoken with are “devastated” by the province’s response. “It’s a shame that my father and so many others have to be involved in this mess.”
The episode has also exposed the fractured relationship between the province and federal health authorities, who were asked not to assist in the investigation – and say they were prevented from testing tissue samples of deceased patients.
Staff at Canada’s public health agency said they were blindsided by the press conference and the controversial paper – and cast doubt on the province’s suggestion that there was no link between the cases.
“It was unbelievable,” one scientist told the Guardian. “Even a layperson understands that you’re never going to find anything by just looking at the phenomenon itself. You need to have a control group … It was just rookie epidemiology.”
Residents first learned of the mysterious cluster nearly a year ago, when a leaked memo from the province’s public health agency asked physicians to be on the lookout for symptoms similar to Creutzfeldt-Jakob disease (CJD) – a rare, fatal brain disease caused by misformed proteins known as prions.
But in late October, a paper presented by Dr Gerard Jansen the Canadian Association of Neuropathologists shocked families by suggesting that eight of the victims had died from unrelated brain diseases.
“We’ve asked unequivocally for that study to be pulled and for an apology to be issued,” said Kat Lanteigne, head of the non-profit advocacy group BloodWatch. “Every single scientist that our organization has ever worked with or reached out to is absolutely mortified.”
Jansen’s paper was also condemned by Canada’s public health agency, which accused him of improperly using private data.
Jansen did not respond to a request for comment, but previously told CBC News that the federal agency doesn’t own the data. He also said that after presenting his findings, colleagues “unanimously concurred with my findings in all eight autopsies and my conclusions [regarding] this cluster”.
The Public Health Agency of Canada said that it “reserves the right to take corrective action, to ensure that this kind of situation does not recur and, if necessary, to remedy any resulting misinterpretation of facts in the public health context.”
And other scientists have also cast doubt on Jansen’s findings.
“[Jansen] has deeply, deeply misinterpreted the significance of his findings,” said one federal scientist, who argued that even if the victims suffered known brain diseases, , that would not rule out the impact of environmental factors.
Increasingly, experts believe β-Methylamino-L-alanine (BMAA) – a neurotoxin found in blue-green algae blooms across the province – could help explain the varied symptoms.In one study, high concentrations of BMAA were found in lobster. Harvesting lobster is one of New Brunswick’s biggest economic drivers – promoting speculation that the efforts to rule out the existence of a cluster could be motivated by political decision making.
Federal scientists would like to test brain tissue from eight people within the cluster who have died for potential environmental toxins. But the province has refused permission for such studies.
Families and scientists have also grown troubled by the New Brunswick government’s apparent efforts to distance itself from Marrero, the neurologist who identified the cluster.
New Brunswick’s health minister, Dorothy Shephard, recently told reporters there had been “issues” in the reporting process that allowed the situation to escalate “often without oversight” and omitted that Marrero had worked with federal scientists, as well as neurologists in other provinces, when first identifying the cluster.
The provincial health ministry did not respond to a request for comment from the Guardian.
But for experts in brain disease, the age range of patients in the cluster, the volume of cases and the geographic location of those suffering suggests more thorough investigation is needed.
“These kinds of things just don’t lend themselves easily to explanation that it’s just a random collection of sporadically occurring cases that have been artificially lumped together by an over-enthusiastic neurologist,” said the scientist. “It just doesn’t wash.”
A second investigation, led by a committee of neurologists from across the province – but probably not including Marrero – is expected to release a second report early next year after reviewing the 48 patients, nearly all of whom were treated by Marrero.
“They really seem to be discrediting him without using his name,” said Ellis. “This is unacceptable. Of all people, he has been the one that has been the most communicative during these last few months. His work ethic and his professionalism and empathy are just top notch.”
Ellis says that if it weren’t for the leak of the CJD memo last year, the public would still be in the dark.
“It makes me sick to think that they’re trying to set this up to be nothing,” he said. “And you know what? At the end of the day, if it is nothing, then we still have to figure out how to help people. Because they’re still suffering.”
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