Thread by @thewalrus

Hi everyone, I’m @MatthewHalliday. I recently wrote about New Brunswick’s “mystery disease,” an apparent cluster of neurological illness suspected to have sickened at least forty-eight people in the province. thewalrus.ca/new-brunswicks… 1/21 #NBPoli #Healthcare

But, right now, I want to talk about the government and scientific response that has emerged since my piece was published online last Friday. 2/21 #NBPoli #Healthcare #CdnPoli

The cluster came to public attention this March. Most cases were initially identified by one neurologist, Alier Marrero. But the cluster was not something Marrero simply invented. New Brunswick, having limited expertise, requested federal assistance. 3/21 #NBPoli

Marrero and federal colleagues at the Public Health Agency of Canada (PHAC) worked together for months to diagnose these cases. They came to suspect that they were looking at a new neurological disease linked by a common toxin or agent. 4/21

Soon, a national expert working group was being assembled to tackle the cluster from different angles. But then things took an unexpected turn. 5/21 #Health

According to a senior federal scientist closely involved in the burgeoning investigation, the province requested that this national effort be suspended, the working group stand down, and the cluster revert to a provincial matter. 6/21

On June 3, the province appointed its own oversight committee, including six New Brunswick neurologists, whose job would be, in part, to “rule out other potential causes.” 7/21

Over the following months, I spoke at length with my federal source, scientists from the nascent working group, and leading global experts in unusual neurological-disease clusters. Most expressed concern that the situation wasn’t being tackled with needed urgency. 8/21 #CdnPoli

Some of those closest to the situation also expressed worries that the province’s about-face on out-of-province help—and its opaque approach to communicating about the investigation—reflected a focus more on politics and message control than on science. 9/21

Now we come to the breaking news. An Ottawa neuropathologist named Gerard Jansen has recently presented new findings suggesting that eight deceased patients in the cluster had pathology consistent with known neurological conditions. canp.ca/2021/10/07/abs… 10/21

Jansen was part of the federal-provincial team that drafted the first case definition on the syndrome’s symptoms. His findings are being interpreted to mean that the eight patients were misclassified as being part of the cluster. theglobeandmail.com/canada/article… 11/21

Several weeks ago, the senior federal scientist I spoke with expressed concern that these findings could be “misinterpreted as providing the full answer to the question of whether there's a cluster or not.” 12/21 #CdnPoli #Healthcare

They added, “Finding known pathologies in people in an
epidemiological situation like this by no means excludes the possibility that there's something new going on.” 13/21

In other words: lack of a unifying pathology can’t be taken as evidence—yet—that the cases aren’t linked. 14/21 #NBPoli #CdnPoli

That would be consistent with what another national expert— consulted as a potential contributor to the federal working group and quoted in my story—suggested to me: that the province’s approach may have been heading toward a conclusion like this from the start. 15/21

The province also seems to be casting doubt on Marrero. At today’s presser, provincial officials stressed that only one neurologist had referred most of the patents in the cluster and that the province's recent work to verify his results should have been done to begin with. 16/21

Of course, the cluster was identified not only by Marrero but by scientists at PHAC and other consultants across the country. 17/21 #NBPoli #CdnPoli

There will be lots of news in the next few weeks. Much of it will likely focus on whether this is a real cluster of disease—and, if so, what’s behind it and what we should do about it. Those are fascinating scientific questions. 18/21 #Healthcare #NBPoli

But there’s a political question here too: Why did a small
Canadian province, with limited ability to address a medical mystery of this complexity, spurn readily offered expertise and assistance? And what does that mean about its findings? 19/21 #Healthcare #CdnPoli

Canada is blessed with abundant expertise in neurology, and Canadian experts have contributed to research on neurological-disease clusters globally. In this case, it appears that jurisdictional ego has prevented the same from happening on our own soil. 20/21 #NBPoli

That’s it from me. Thanks if you’ve paid attention this long, and thanks to The Walrus for letting me take over their Twitter. thewalrus.ca/new-brunswicks… 21/21 #CdnPoli #Healthcare