My feature on the state of research into MS causes (published Dec. 1, 2016, in Nature Outlook) had a long and complex genesis, which is also true of the disease I wrote about.
I have long been interested in how diseases happen, from my days writing about research for my column in the Canadian Medical Association Journal (CMAJ). I covered a whole variety of health issues, of course, but the ones that were of most concern – the ones that could wipe out populations and cultures – were diseases.
A few years ago at the Canadian Science Writers Association conference, Dr. Brian Goldman presented a news clip on an experimental treatment for MS touted by Paolo Zamboni, which he (suspiciously) called “liberation therapy” based on a theory that MS is caused by chronic cerebrospinal venous insufficiency. Or let’s just say veins blocked by metal buildup. Goldman was critical of the glowing media descriptions of the treatment, as they were not evidence-based.
I was sitting at the same table with Dr. Goldman at lunch, and our gang of science writers debated the ethics of this type of coverage. I recall I said, “Of course, we don’t know what causes MS.” Because that was the understanding at the time.
That discussion stuck with me, especially as I met more people with MS over the past few years. Then, in reporting for CMAJ, I covered two research stories on discoveries relevant to the cause of MS. I starting following the references in one of the articles to other research, and I soon learned that the evidence was mounting for several causal factors. Some researchers were looking into whether these factors were linked. In fact, right now there’s a new article every month on these factors.
But I had seen nothing (and I looked) in the media about the good, solid, research that had been slowly amassing over years about Epstein-Barr virus and vitamin D, in particular.
I pitched an idea for a feature on this research at this year’s Canadian Science Writers Association conference as part of a “Dragon’s Den” pitch session to a panel of four editors. And – long story short – I was eventually asked to write it for Nature Outlook.
Why I included the Elmvale Acres Ottawa cluster
I was in the midst of my research on MS causes, and I was particularly interested in the paper from Winnipeg researchers showing clusters of incident cases of MS in that city. As the authors of this paper told me, clusters are an important clue into causation. They can indicate genetic differences, especially in a multicultural city like Winnipeg, or environmental factors. I was fascinated because the clustering in Winnipeg (unfortunately, for copyright reasons, I couldn’t reproduce the study’s maps, which are worth a thousand words) looked like maps of disease outbreaks. That doesn’t mean they are – it is just a possibility worth exploring.
I had wanted to get the human angle on this research, to show that this research is about real people, not just dots on a map. I was even thinking of calling the MS society in Winnipeg to contact patients in the affected neighbourhoods. At this point, several of my friends who knew I was working on the article called or emailed to say there was a CBC story on a cluster right in my city – Ottawa.
I contacted the man at the centre of the CBC story, Jacques Dutrisac. Now, I have some graduate courses in statistics and I’ve read plenty of biostatistics. I know that disease clusters often occur by chance alone. There’s also a well-known perceptual effect that once you have a problem you tend to see it all around you. Careful and complex statistical methods like those used in the Winnipeg paper are needed to determine “true” clustering.
So, to be honest, I called Dutrisac prepared for the possibility that the cluster in the Elmvale Acres neighbourhood of Ottawa might be by chance alone. Dutrisac is a wonderful raconteur and sleuth. Not only had he kept track of all of his former friends and neighbours with MS, he had their names, locations, schools, ages, and ethnic background. He was telling me about one after the other, and I was taking notes. After our chat, I made a table of all 14 people with MS (at that point – another neighbour with MS has come to light as a result of the publicity around the cluster). The prevalence of MS in Canada (where it is highest in the world) is 291 per 100,000 or a little under 3 per 1000. In an area of less than 1000 people, the rate was at least five times higher than the national average. When I looked at the fact that the people affected not only lived in a kilometre-radius area, but were all about the same age – in fact, most exactly the same age as Dutrisac –, went to the same schools and were two-thirds francophone… well… that can’t possibly be by chance.
So I feel that I’m being responsible as a journalist in covering a cluster that has not yet been studied, but should be.