A highly-anticipated report investigating the validity of a neurological syndrome of unknown cause has found that no such illness exists.
Last March, New Brunswick health officials alerted the province’s doctors, nurses and pharmacists about a possible cluster of residents with an unknown and potentially new neurological syndrome with symptoms similar to those of Creutzfeldt-Jakob disease.
Some of those symptoms included sudden movements, hallucinations, memory loss and behavioral changes.
Since then, 48 people have been identified in the cluster and nine have died.
An oversight committee consisting of six independent neurologists has been conducting a clinical review of the cases since last summer. A report outlining their findings was released Thursday.
“The Oversight Committee has unanimously agreed that the individuals who were included in this cluster do not represent a neurological syndrome of unknown cause and has therefore concluded that no such syndrome exists,” the report stated.
The report broke down the 48 cases:
- Patients who met the full case definition of mystery brain syndrome: 0
- Patients with rapidly progressing dementia (within two years): 25
- Patients with clinical symptoms displayed within three years: 19
- Patients with four clinical symptoms matching the case definition: 18
- Patients who need further investigation: 17
- Patients who could have an alternative diagnosis (Alzheimer’s disease, Lewy body disease, post-concussion syndrome and others): 17
Health officials say all the patients have been referred to the MIND clinic in Moncton, N.B., or other “specialty providers.” Right now, 10 are receiving treatment at the clinic. Officials say they have approval to expand the MIND clinic so that it can expedite appointments and care.
FAMILIES DISAPPOINTED BY REPORT
Patients and their families met virtually with Health Minister Dorothy Shephard Thursday, ahead of the report’s publication.
The committee also identified a “lack of a defined federal/provincial profess for the identification and investigation of a novel disease or condition has caused much speculation and public distrust.”
Dr. Jennifer Russell, the province’s chief medical officer of health, says an investigation into environmental factors was conducted and no link was found.
The families of the patients have been outspoken about what they say has been a lack of communication, and expressed concerns about the transparency of public health over the last year.
Steve Ellis started a Facebook support group for the families after his 65-year-old father was admitted to the cluster. He said the group is “extremely disappointed and angry” with the report and that it offers “no answers to our pain and suffering.”
“No additional testing was conducted. No testing for neurotoxins was conducted. No case controls were performed during the “review” of the oversight committee. Our questions were not answered,” said Ellis in a statement. “We do not need a national committee formed on the backs of our suffering. We demand scientific answers from both the Public Health Agency of Canada and from the Government of New Brunswick.”
He says the group started as 48, but has grown to more than 148.
With files from The Canadian Press
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