Researchers link suspected cases in New Brunswick to known diseases, suggesting ‘misdiagnosis and misinformation’
A new peer-reviewed scientific study has found no evidence of a mystery brain disease in the Canadian province of New Brunswick, suggesting instead a troubling combination of “misdiagnosis and misinformation”.
The research comes as the Maritime province prepares its own assessment of more than 220 suspected cases in the hope of giving families some answers to a medical mystery that has gripped the region for years.
The findings, however, are unlikely to tamp down speculation from families that the report once again ignores their suspicions of environmental contamination in the region.
Those cases were referred to Marrero after the initial physicians were initially stumped by the symptoms displayed by their parents. 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.
Patient advocacy groups have rejected the idea of a new “mystery illness”, instead arguing that the cases are linked by environmental contaminants. But the researchers say they do not believe the patients were made ill by exposure to something in the environment, such as herbicides or heavy metals like mercury.
They determined that “misdiagnosis and misinformation become inextricably entwined and amplify harm exponentially”, noting that more than half of the people eligible for the study declined to participate.
They also blamed “inaccurate clinical assessments and an over-reliance on ancillary testing” for perpetuating the idea of a “mystery illness” and said they found “meaningful discrepancies” in case histories.
Marrero said in a statement he is “in profound disagreement with the study conclusions” and has “many questions regarding the methods and the content”, adding that he was “appalled” that an investigation with a “small number” of patients has been conducted without his knowledge.
Susan Holt, the province’s premier, pledged a fresh and “thorough” investigation after taking office last last year.
“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,” she said at the time.
New Brunswick’s chief medical officer of health, Dr Yves Léger, said in a statement the Jama study doesn’t change his office’s intention to complete its own investigation into the 222 cases, which Marrero has officially referred to the province.
Updates will be posted on the province’s new website, and a public report with recommendations is expected in the coming months.
Source: www.theguardian.com