Case of N.B. ‘mystery neurological disease’ complaint faces setback

New Brunswick families struggling to find out more about a debilitating mystery brain disease have had their latest hope dashed.

Steve Ellis’ father Roger Ellis is one of 48 people in initially identified as suffering from an alleged mystery neurological illness that has been linked to rapidly progressing dementia, muscle spasms and atrophy.

In late February, the province announced an oversight committee – comprised of six neurologists from the province, co-chairs from the two regional health authorities and a medical officer of health – had concluded no such disease exists.

Ellis, who has been an outspoken advocate for those affected by the supposed disease, was outraged by the decision.

He filed an appeal with New Brunswick’s College of Physicians and Surgeons in late March telling Global News at the time that he believed Chief Medical Officer of Health Dr. Jennifer Russell had “violated the code of ethics of her profession.”

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On Monday, he received a letter from the College saying complaints against actions taken by Public Health were not in their jurisdiction and that they “consider this matter closed.”

1:25 New Brunswick determines there’s no mysterious brain syndrome

“It gave no recourse as to what I can do, it doesn’t tell me who is in charge of Dr. Russell and (Health) Minister Shephard,'” Steve Ellis told Global News Monday.

“The letter makes me feel like they can do whatever they please with no repercussions.”

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The letter highlights a section of New Brunswick’s Public Health Act indicating: “No action or other proceeding for damages or otherwise shall be instituted against a medical officer of health (…) for any act done in good faith in the execution of any duty or power under this Act (…)”

Global News contacted both the College of Physicians and Surgeons as well the New Brunswick’s Department of Health on Monday. Neither were able to clarify what, if any, entity would be in charge of appealing a decision made by Public Health.

Ellis said he has already emailed the College asking them to reconsider.

“I’m going to investigate potential other avenues,” he said.