Resources for Journalists Covering Long COVID, Disability, and Complex Chronic Illnesses

Tipsheet On Covering Long COVID from the Investigative Reporters & Editors conference (NICAR 2022) by Betsy Ladyzhets

An introduction to the basics of covering Long COVID from a data/investigative perspective, including recommendations for datasources, records requests and patient interviews.

Long COVID source list, by Fiona Lowenstein and Betsy Ladyzhets

This source list includes categories for patients who are also experts, patients who wish to speak about their own experiences, experts with personal experience of Long COVID and related conditions, and others researching and treating the disease. As the sections are sorted alphabetically and load a handful of contacts at a time, pressing “Load More” (at times repeatedly) displays the full list of contacts within each section, with over 180 contacts in the patient expert category alone. Please also know that should you wish to speak to a particular contact, hovering over the header of each section displays a search field that allows you to search for a particular name for swifter locating. Please only use the source list for journalistic purposes; the people who have signed up for this list have not necessarily signed up to participate in research or answer medical questions from other patients.

Body Politic’s comprehensive guide to covering Long COVID, by Fiona Lowenstein

This ~20 page guide, written in summer 2021, covers many issues in Long COVID coverage and touches on lessons we can learn from other disease outbreaks and communities like people living with ME/CFS and HIV/AIDS. In the making of this guide, Lowenstein spoke with veteran health journalists Linda Villarosa, David Tuller, and Julie Rehmeyer, as well as patient-advocates from Body Politic and the Patient-Led Research Collaborative. The guide is long, but journalists can view an abbreviated summary of highlights below:

Long COVID coverage often falls short; but here’s how reporters can do better, by Fiona Lowenstein, USC’s Center for Health Journalism 

A shorter summary of Body Politic’s comprehensive guide that shares the motivation behind the guide and key quotes from journalists Linda Villarosa, David Tuller, Mara Gay, and others.

How to Cover Covid-19 Patients Sensitively, by Fiona Lowenstein, The Columbia Journalism Review

This article, written in summer 2020, provides basic information on writing about and interviewing Covid-19 patients – including the importance of offering multiple interview methods, tips on language, and thoughts on fact-checking with sensitivity and understanding of the barriers many Long COVID patients face in getting tested or diagnosed.

How to Report with Accuracy and Sensitivity on Contested Diseases, by Julie Rehmeyer, The Open Notebook

This guide, written in January 2021, covers best practices for reporting on “contested illnesses” – a term often used to describe illnesses whose existence and/or biomedical origin has been debated. The article is authored by a journalist living with ME/CFS and uses that disease as a template for understanding how to cover related illnesses. It is important to note that the vast majority of members of the medical and scientific establishment in the United States believe Long COVID exists and is triggered by a Covid-19 infection.

Covid-19 and Impacted Communities: A Media Communications Guide, by the COVID-19 Working Group-NY

This guide from 2020 covers best practices for covering Covid-19, pitfalls to avoid when reporting, navigating racism, scapegoating and health outcomes, and misinformation and disinformation. It was reviewed by members of Strategies for High Impact, #MEAction and Body Politic.

How to Cover Long Covid, On the Media interview with Brooke Gladstone and Fiona Lowenstein

This interview from May 2022 contains updates to the Body Politic guide listed above. Gladstone and Lowenstein discuss the overwhelming focus on white, young, and “healthy” long-haulers, who should be cited as an expert on Long COVID, and why media stories on the future of the pandemic must consider Long COVID.