Provide names of other journalists involved.
Neil Swidey
List date(s) this work was published or aired.
28-Oct-12
Provide a brief synopsis of the story or stories, including any significant findings.
This story was a journey to an unsettled frontier of medicine, exploring the question of whether a common childhood infection such as strep can cause raging OCD in kids, transforming them literally overnight. Although I frequently write about medicine and science, I had never heard of the disorder called PANDAS or PANS until my young nephew was diagnosed with it. Although that personal connection sparked my interest, I approached the in-depth story as a journalist, not as an advocate. In the course of my reporting, I was stunned at what I found. Many physicians, especially front-line pediatricians, knew nothing about the disorder. And many of those who did were put off by the fierce debate in the medical literature over the most fundamental questions around the illness. Very little has been written about this disorder in mainstream media. And what has been written has tended to be only surface deep: either sympathetic features on families trying to cope with how the disorder had upended their lives, or “on the one hand and on the other stories” that describe the debate over PANDAS in broad strokes. My goal was to go deep into the research and treatment of this disorder, to find out what we really know and don’t know.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I marinated in all the medical literature around this illness, from all angles. My research took me back in history to the earliest literature on sudden onset of this kind of aberrant behavior in children. I also relied on observational records kept by parents of children with the illness. In dealing with one hospital (Boston Children’s Hospital) about the controversy surrounding one patient, I rejected the hospital spokesman’s first two statements, insisting that he come up with one that actually answered the basic question I had asked (namely: Has the hospital treated any children with PANDAS/PANS in the last year, and if so, about how many?). Eventually, he did.
Explain types of human sources used.
I spent lots of time talking with physicians, researchers, parents and children. I was clear with everyone that even though I had a personal experience with this disorder in my family, my responsibility as a journalist was to understand an issue from all angles and then to try to synthesize all of that into a coherent explanation. As a reporter, I’m always drawn to the roots of something, and that was the case here. I spoke at length with the researcher who first came up with the hypothesis, to find out what motivated her research. I also spoke at length with one of her chief critics, to find out what motivated his involvement. But the people I ultimately found most persuasive were those whose views had changed based on new information. Because of that research, I was able to report for the first time how the lead author on one of the most influential papers questioning the PANDAS hypothesis could have himself become a convert who believes strongly in this illness. He conceded to me that, even before that influential paper was published, he had come to believe that he and his co-authors had been studying the wrong children, namely those with the more typical gradual-onset OCD rather than those whose symptoms came on overnight. When he encouraged his co-authors to admit to that failing in their paper, they refused, insisting (correctly) that they had followed the published criteria for the disorder.
Results:
Reaction to the Globe Magazine story was overwhelming. Hundreds of people wrote in with deeply personal stories. Many more spread it through social media. Most interesting was the large number of people from the medical field who spoke about their troubling experiences dealing with the medical establishment, despite being part of it. We’re happy to report that the article, by going deeper and not being satisfied with the locked-in positions of people on opposite sides of the debate, has broken new ground. There is now a new, fully vetted mainstream resource that explains what we know and what we still don’t know about this mystery.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No
Advice to other journalists planning a similar story or project.
Let your curiosity guide you. Don’t settle for pat positions. Search for movement in your sources’ thinking. Be honest with everyone about where you’re coming from and if you have a personal experience, but be just as honest with them (and yourself) about being open to changing your mind if someone can present you with persuasive evidence.