Investigating and covering emerging, controversial and contested disease stories

By Francesco Zangari

“How do you report on [diseases] where a lot of the tools that are often available to us as science writers, like the published scientific literature, are just not there?” asked Ed Yong, a science journalist for The Atlantic. Yong posed the question at the start of the ScienceWriters2020 session “Covering Emerging, Controversial, and Contested Disease.”

This is a problem often faced by those covering unexplained illnesses.

The session, organized by Pamela Weintraub, a senior editor at Aeon, and Ryan Prior, a journalist at CNN, focused on illnesses like chronic fatigue syndrome (CFS, also called myalgic encephalomyelitis or ME), fibromyalgia, chemical sensitivities, and long term COVID-19. Often these illnesses lack apparent causes or have unclear treatments, making many dispute their existence. During the session, the panelists discussed best practices when covering this class of diseases.

A sentiment strongly echoed by all panelists was the need to be compassionate and empathetic of patients' situations. “Empathy is incredibly important and one thing to remember about people with long-term illnesses is that they've often been gaslighted for years and for decades,” explained David Tuller, a senior fellow at the University of California, Berkeley. “If you have been told your illness is psychogenic and you are over emphasizing your symptoms, then you might be upset and difficult to talk to.”

Yong also spoke about the importance of considering people's energy levels, as often you are speaking with people who have little energy to offer. Frequent breaks, rescheduling interviews, and maintaining flexibility is crucial to interviewing patients humanely.

Delving into the existing narratives and literature is also a critical skill to assess the quality of science surrounding these illnesses. “One thing we have to do as science journalists is listen very carefully to the debate between groups of scientists and try to see where the bulk of the evidence is,” said Apoorva Mandavilli, a reporter at The New York Times.

“Scientists, doctors, patients, and government agencies - they all disagree and they don't just disagree with one another, they disagree among themselves. So as journalists, we have to embrace that complexity,” says Julie Rehenyer, a freelance science and math writer.

Equally important is recognizing the roles race and gender play in reporting on health. Data regarding emerging diseases often lacks information regarding disparate health outcomes. Julia Craven, a reporter for Slate magazine, details the importance of looking at a broader depth to highlight systemic inequality.

For freelance journalist Maya Dusenbery, the emphasis was on gender-based health disparities, as contested illnesses often get viewed through the lens of hysteria when found primarily in women.

“It’s really critical that journalists covering any sort of contested or emerging diseases have a good understanding of these gender biases in medicine and interrogate faulty assumptions,” Dusenbury said.

The session was capped off with an additional discussion, which highlighted taking into account patient expertise, humanizing patients, and avoiding language traps by lumping contested/controversial diseases together.

Francesco Zangari is a Ph.D. researcher at the University of Toronto in the Department of Molecular Genetics. He is a Toronto-based writer covering science and business news stories. He has contributed to the Varsity, the University of Toronto's student newspaper of record and Canada's largest student newspaper. He has also written for Sinai Health Foundation and Massive Science. Follow him on Twitter @franthewriter1.