More and more patients from the 48-person cluster of New Brunswick’s alleged “mysterious neurological disease” are receiving letters from the province telling them a committee of six neurologists have determined they do not suffer from the illness.
Steve Ellis’ father Roger Ellis received one such letter on Thursday.
The letter indicates his father, whose condition continues to decline, will still be treated by the Mind Clinic, and that he should follow up with his family doctor for more information.
Ellis has not yet been able to reach his father’s family doctor for clarification.
“In my father’s situation it’s especially upsetting because two of the six neurologists had treated him while he was in the hospital in 2019 and they did not give a diagnosis,” he said Friday.
“So why is it that now, because they’re working with the government, that they’re gonna give their opinion when they couldn’t even (give) him a diagnosis … are they reviewing their own work?”
Stacie Quigley Cormier, stepmother of patient Gabrielle Cormier, received a similar letter on Wednesday. She is also confused about the findings as her stepdaughter has been through multiple medical tests.
“So if her neurologist who saw her face to face and ran tests physically and went over her symptoms and talked with her couldn’t find out what was wrong, how can the committee look at her file and find out what was wrong without speaking with her?” she said in an interview on Friday.
Ellis runs an online support group for patients and loved ones affected by the supposed mystery illness. He said several people have gotten letters removing them from the cluster.
He and other members of the group have been invited to a meeting with Health Minister Dorothy Shephard on an as-yet undecided date.
At this point, they’re considering taking matters into their own hands.
“We have looked into crowdfunding to hire various scientists and experts from other countries.” he said.
On Wednesday, Minister Shephard said an announcement on the matter was forthcoming.
“We are in the final stages and that date should be coming very soon, we just have to check all the boxes, but I think I can confidently say it’s coming before the end of the month (of February),” she said at a press conference.
On Friday afternoon, a spokesperson for the Department of Health sent Global News a statement indicating the committee of neurologists “reviewed all clinical information contained in the medical files of the individuals.”
They also added that at the time of the announcement, “members of the Oversight Committee will be available to answer questions about the methodology used to review these case files as well as their conclusions and recommendations.”