Patient advocate calls for retraction of mystery brain disease report from U.S. medical journal

An advocate for New Brunswick patients suffering from unusual neurological symptoms is demanding the retraction of a recent scientific report that dismissed the existence of a mystery brain disease in the province. Katherine Lanteigne, a former executive director of BloodWatch, has accused the researchers of bias and privacy violations in the study published in the Journal of the American Medical Association (JAMA) Neurology last month.

Lanteigne has taken action by writing to the University Health Network’s research ethics board in Toronto and to the Horizon Health Network and its MIND Clinic in Moncton. She plans to file formal complaints of research misconduct against the authors of the study. Lanteigne alleges that the study violated the privacy and dignity of patients and further traumatized them.

The study, led by neurologist Anthony Lang, concluded that 25 patients diagnosed with a “neurological syndrome of unknown cause” actually had well-known conditions such as Alzheimer’s, Parkinson’s, functional neurological disorder, traumatic brain injury, and metastatic cancer. Despite the small sample size, Lang claimed that the chances of any of those individuals having a mystery disease were less than one in a million.

Lanteigne argues that five of the 13 authors failed to disclose their prior involvement with the New Brunswick cluster of patients, which she believes demonstrates research bias. She also raised concerns about the consent process, highlighting a case where a patient who had declined consent had their data included in the study anyway.

One of the patients included against their wishes was Gabrielle Cormier, whose stepmother Stacie Quigley Cormier has also called for a retraction and an apology from the University Health Network. Quigley Cormier accused the researchers of breaching Gabrielle’s trust and privacy.

Moncton neurologist Alier Marrero, who initially raised concerns about the mystery illness, expressed skepticism about the study’s consent process and access to patients’ files. Marrero stated that numerous patients or their families have raised privacy concerns, and some published information could potentially identify patients due to the small number of cases.

Lanteigne has called on the Public Health Agency of Canada to investigate the release of patient data from the surveillance system for the study. She believes that the Creutzfeldt-Jakob Disease Surveillance System unit, which is the custodian of autopsy results, included patients without their families’ consent in the report.

The University Health Network and the authors of the study have declined to comment on the allegations, stating that their research undergoes rigorous oversight and approval by their research ethics board. They maintain that the study followed established scientific processes and contributed new evidence intended for consideration by the scientific community.

Despite the pushback from advocates like Lanteigne and concerns raised by Marrero, the authors of the study stand by their findings and maintain that the patients were misdiagnosed mainly due to inaccurate clinical assessments and an overreliance on or misinterpretation of supplementary testing. The controversy surrounding the study highlights the ongoing debate over the existence of a mystery brain disease in New Brunswick and the need for transparency and ethical research practices in the medical field.