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."

Report questioned mystery disease's existence

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.

No definitive diagnoses, no testing for BMAA

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.

"My dad's letter and everyone else's letter [from the committee] never gave a definitive diagnosis. It says 'we think, we believe' ... but it does not say 'you are diagnosed with X, you have X.' 

"For six neurologists to suggest that a patient has one, two, three or more diseases without ever seeing them – that's not how it works." 

He's also upset that no tests were ever done to determine whether blue-green algae and B-methylamino-L-alanine (BMAA) might have been a factor in causing the patients' symptoms.

• Public Health now questioning 'validity' of mystery brain disease
• New Brunswick has no mystery neurological illness, committee finds

In the early stages of the investigation into the disease, British Columbia neurologist Dr. Neil Cashman also identified BMAA as one of several possible culprits.

At that time, Cashman was acting as an adviser to Health Canada's Creutzfeldt-Jakob Disease Surveillance System, which was one of the teams working on identifying a cause for the mystery disease.

"All of these are speculation at this point," Cashman stressed at the time. "A lot of scientific acumen will be required to pin it down to a cause."

During a private meeting with families, which Ellis said he recorded, he asked Russell why no such testing was done. 

"What she told us was that there was no need for them to do testing for BMAA and that they were unable to do testing on the waterways because there were no algae blooms present last summer," he said.

Ellis disputes that, noting that Moncton's Irishtown Park was closed in July because of blue-green algae blooms.

"And that's in the area where a lot of the cases are concentrated. We don't know for sure that it's BMAA, of course, but how do you know if you don't rule things out? You have to test."

Ellis has asked that Russell submit to the College of Physicians and Surgeons "all of the correspondence she has had with the organizations she listed in the meeting she took with patients on February 24, 2022" and "all of the documentation she has received by treating physicians in the province up until March 24, 2022 ... that identifies concerns for patients who are demonstrating atypical signs of neurological diseases/illness." 

The College of Physicians and Surgeons would not comment on the complaint or on next steps in the process.

"We never discuss complaints, neither to confirm or deny," registrar Dr. Ed Schollenberg said in an email on Friday.