Complaint filed over N.B. top doctor's handling of mystery brain disease investigation

A Nova Scotia man has filed a complaint against New Brunswick's top doctor over her handling of the investigation of a mystery neurological syndrome.

Steve Ellis, whose father, Roger Ellis, was initially identified as one of the 48 confirmed cases of the mystery syndrome first made public a year ago, alleges Dr. Jennifer Russell "violated the code of ethics of her profession" during the investigation.

He alleges Russell "did not communicate in a transparent manner," "misled my father as a patient," "withheld information that my father had a right to obtain," and provided inaccurate information to families in a private meeting "initiated by her office and [Health] Minister Dorothy Shephard."

Ellis also alleges that his father was never seen in person by the oversight committee that later took over the investigation, although they later suggested several "possible" explanations for his symptoms.

The complaint was filed with the College of Physicians and Surgeons of New Brunswick on Thursday.

Asked for comment on the complaint and its allegations on Friday, Public Health spokesperson Bruce Macfarlane said Russell "has yet to receive any correspondence related to this kind of complaint."

The New Brunswick government first warned of "a distinct atypical neurological syndrome" causing symptoms ranging from muscle spasms to visual hallucinations in an internal memo dated March 5, 2021.

Teams of researchers and scientists assembled to look into the syndrome, both at the national level at Health Canada's Creutzfeldt-Jakob Disease Surveillance System and at the provincial level with a research team headed by Moncton neurologist Dr. Alier Marrero.

However, Public Health officials later presented a report questioning the existence of such a syndrome.

They tasked an oversight committee made up primarily of neurologists from across New Brunswick to do clinical reviews of all 48 patients and deliver a second report.

That committee reviewed the patients' records and found that while some have unusual symptoms, they didn't have a common, unknown illness.

"The oversight committee has unanimously agreed that these 48 people should never have been identified as having a neurological syndrome of unknown cause and that based on the evidence reviewed, no such syndrome exists," Russell said at a news conference on Feb. 24 of this year.

Ellis said that's the day he started compiling a formal complaint against Russell.

Ellis said he's troubled by the fact that although the oversight committee said there were several "potential alternative diagnoses" for 41 of the 48 patients, they not provide a final diagnosis to any of them.