Dr. Jennifer Russell (courtesy CPAC)
New Brunswick’s mystery brain illness has been solved according to the chief medical officer of health.
An oversight committee has found the 48 patients involved should never have been identified as having a neurological syndrome of unknown cause.
Based on the evidence reviewed, Dr. Jennifer Russell says no such syndrome exists.
“But I stress that this does not mean these people are not seriously ill. It means they are ill with a known neurological condition. This could include a condition such as Alzheimer’s disease, Lewy body dementia, diabetic or inflammatory polyneuropathy, Parkinson’s disease, post-concussion syndrome or cancer.”
The oversight committee includes six neurologists, one co-chair from each of the regional health authorities and one representative from Public Health.
It was established last June to provide independent clinical oversight and to make recommendations regarding the 48 cases that were initially identified as part of the cluster of a neurological syndrome of unknown cause.
The clinical review found that each patient displayed symptoms that varied significantly and there is no evidence of a shared common illness or a syndrome of unknown cause.
The full report is available online.
Public Health released its own report, which is also available online and makes several recommendations to improve the way potential new diseases are reported and investigated.
In early 2020, Russell noted there was an unusual increase in patients linked to Creutzfeldt-Jakob Disease (CJD) but they all later tested negative for human prion diseases.
In a report released last fall, she adds New Brunswickers should feel confident in knowing that environmental factors such as any behaviours, foods or environmental exposures have already been ruled out in connection with the cases.
Recommendations
“Public Health New Brunswick has made several recommendations to ensure that a situation such as this one does not occur again. Some of these changes we can make ourselves while others are regulatory changes that require government support or action at the federal, provincial or territorial level,” notes Russell.
Public Health New Brunswick’s recommendations include:
- In the future, Public Health New Brunswick may request a clinical review of cases by a second specialist physician prior to including cases in a cluster of unknown cause. If the two physicians do not agree, the case should be presented to a board of specialty doctors or an oversight committee for a decision.
- The Reporting and Diseases Regulation under the Public Health Act should be amended to require a suspect case of any existing or new variant of human or animal prion disease be reported to Public Health New Brunswick.
- Public Health New Brunswick should continue to build on collaborations with the Public Health Agency of Canada and other federal and provincial partners to improve and modernize the national Creutzfeldt/Jakob Disease (CJD) surveillance system and to establish or improve processes related to outbreak investigations that may arise from this surveillance, including those where prion disease has been excluded. To this end, it supports the creation of a federal, provincial and territorial working group that would support this review.
Health minister accepts reports
The health minister has accepted both Public Health New Brunswick’s final report and an oversight committee report that concluded that no such syndrome exists in New Brunswick.
Dorothy Shephard recognizes the process that was put in place was frustrating for them.
“At this time they have been desperately seeking answers and hoping for a cure. It’s heartbreaking to have to tell them the syndrome did not exist.”
Shephard says the patients now need follow up assessments and care for what are certainly serious illnesses.
“I am confident that our province’s physicians are fully capable of providing that care, but I advise the patients and their families today that they are welcome to seek a second opinion outside the province if they wish.”
Shephard says the province needs to ensure this doesn’t happen again noting how the stress and anxiety these families have experienced should not have occurred.
Public Health Agency of Canada support
“The Public Health Agency of Canada is pleased that the investigation has come to a close and supports the investigation’s findings,” says Dr. Howard Njoo, Canada’s deputy chief public health officer.
“Over the course of the investigation, the Public Health Agency of Canada provided specialized diagnostic laboratory and neuropathology services and expertise to rule out prion disease, and, through the Canadian Field Epidemiology Program, deployed several epidemiologists and assisted in the development of the epidemiological questionnaire.”
Mind clinic will continue
Shephard believes if there is one positive thing to come from this situation, it is that the mind clinic at The Moncton Hospital will continue to operate.
The clinic was set up after the cluster was identified and specializes in neuro-degenerative conditions.
Shephard adds the clinic has now seen more than 200 patients.
