In New Brunswick, Canada, an investigation into a cluster of unexplained neurological cases has evolved into a complex medical and scientific debate, marked by conflicting diagnoses, governmental inquiries, and patient advocacy. Initially identified by neurologist Dr. Alier Marrero as a potential novel syndrome with Creutzfeldt-Jakob Disease (CJD)-like symptoms, the cases have since been subject to extensive review, leading to conclusions from some scientific bodies that the cluster represents known neurological, medical, or psychiatric conditions, rather than a single mystery illness. Patients and their advocates, however, continue to assert the presence of an unknown environmental toxin and express distrust in official findings.
Initial Identification and Symptoms
The situation began in early 2019 when officials at a New Brunswick hospital identified two patients with Creutzfeldt-Jakob Disease (CJD). Concurrently, neurologist Dr. Alier Marrero reported observing over 20 patients for several years who exhibited CJD-like symptoms, including rapidly progressing dementia, despite negative CJD tests from Canada's CJD Surveillance System (CJDSS). Dr. Marrero's patient notes detailed a wide array of symptoms, such as dementia, weight loss, unsteadiness, jerking movements, facial twitches, spasms, visions, limb pain, muscle atrophy, dry skin, hair loss, insomnia, waking hallucinations, excessive sweating, excessive drooling, Capgras Delusion, and speech impairment. Over a period of five years, the cluster of patients under Dr. Marrero's observation grew to approximately 500 individuals.
Official Response and Early Investigations
In March 2021, a memo from New Brunswick's chief medical officer, alerting doctors to the apparent syndrome, was leaked to the media. This led to the formation of a multi-disciplinary group, including Dr. Michael Coulthart (head of CJDSS), Dr. Neil Cashman, Dr. Michael Strong, and Dr. Samuel Weiss. The Canadian Institutes of Health Research (CIHR) offered New Brunswick C$5 million to support the investigation, and the condition was formally named the "New Brunswick Neurological Syndrome of Unknown Cause." Early cases appeared to be concentrated around Moncton and the Acadian Peninsula, prompting consideration of potential environmental links, including a moose-borne parasite, blue-green algae blooms, and Agent Orange. Dr. Marrero focused on glyphosate, a herbicide, citing an observed increase in cases during forestry spraying season and elevated levels in over 100 patients.
By April 2021, with a focus on a possible environmental toxin, a specialist clinic, the Mind Clinic, was established with Dr. Marrero at its helm.
Scientific Disagreement and Provincial Actions
Concerns about the nature of the cluster emerged from within the scientific community. Dr. Gerard Jansen, a neuropathologist associated with the CJD Surveillance System, stated that Dr. Marrero's patient notes indicated a "diarrhea of symptoms." Dr. Jansen also reported identifying known neurological diseases, such as Alzheimer's disease and Lewy body dementia, in brain tissue samples from deceased cluster patients, stating his view that "the patients are real, but the clustering as a mystery disease is not."
In May 2021, New Brunswick suspended collaboration with federal scientists and declined the C$5 million CIHR offer. Provincial officials did not comment on the record regarding this decision, but concerns reportedly existed regarding Dr. Marrero's methods and contact with federal scientists.
New Brunswick then initiated two independent investigations into an initial cluster of 48 patients: a telephone questionnaire and a review of medical records by a committee of six provincial neurologists. These investigations did not include in-person patient examinations. In February 2022, the New Brunswick government concluded that there was no common environmental cause or common condition among the patients, indicating the absence of a mystery disease.
Dr. Marrero's Departure and Shifting Diagnoses
In August 2022, Dr. Marrero was dismissed from the Mind Clinic due to "deficiencies in your performance." At the time, the cluster comprised 105 patients. Of these, 94 patients chose to continue with Dr. Marrero outside the clinic, while 11 opted to remain with the Mind Clinic for second opinions.
Several patients who sought alternative opinions received different diagnoses:
- April (partner of Kevin Strickland): Initially diagnosed by Dr. Marrero, she later received a diagnosis of frontotemporal dementia from neurologists at the Mind Clinic.
- Sandi Partridge: After being diagnosed with the mystery illness by Dr. Marrero following extensive testing, neurologists at the Mind Clinic diagnosed her with Functional Neurological Disorder (FND). Ms. Partridge researched FND, accepted the diagnosis, and is now undergoing a multi-faceted treatment program.
- Gabrielle Cormier: Diagnosed by Dr. Marrero at 18 with the mystery illness, she was later diagnosed with FND by Dr. Anthony Lang, a neurologist in Toronto, after a multi-day evaluation. Ms. Cormier's family initially considered the FND diagnosis but later moved away from it. Ms. Cormier, now 24, continues to use a wheelchair or cane.
Recent Scientific Findings and Legal Challenges
A research paper published in 2023 by Canadian neurologists and neuroscientists concluded that there was no mystery disease, suggesting patients likely suffered from previously known neurological, medical, or psychiatric conditions.
In late 2023, Dr. Anthony Lang and colleagues published a study in the Journal of the American Medical Association (JAMA). The study examined 25 patients and concluded that all had known conditions, ranging from FND to dementia and cancer. The study asserted that the "cluster" was due to serial misdiagnosis by Dr. Marrero, compounded by other factors. This research faced legal challenges from Ms. Cormier's family and patient advocates concerning privacy, though Dr. Lang maintained the research was ethical and legal.
Ongoing Debates and Patient Advocacy
Dr. Marrero continues to practice outside the Mind Clinic. Former federal collaborators, including Dr. Coulthart, denied being fully convinced of a unified mystery syndrome, with Dr. Coulthart stating that no one definitively possesses all facts.
Many patients rejected the conclusions of the research papers, asserting they were poisoned by an industrial environmental toxin and alleging government concealment of information. Patient advocates, led by Kat Lanteigne of Bloodwatch, continue to lobby the government and interact with the press, with Ms. Lanteigne criticizing the JAMA study as inaccurate and unethical. Dr. Lang and Dr. Jansen maintain their findings, with Dr. Jansen suggesting patients are being subjected to misdiagnosis.
An upcoming provincial report is expected to examine claims of elevated glyphosate and heavy metals in patients. Many patients, such as Jillian Lucas, continue to experience symptoms that significantly restrict their lives. Dr. Marrero has stated he would not comment on patients or fellow physicians, emphasizing that the focus should remain on the suffering individuals and their communities.