Body Politic’s Comprehensive Guide to Covering Long COVID

The following guide is meant to be used as a reference tool for journalists and advocates shaping news coverage of long-term symptoms of Covid-19. See below for the full linked guide.

Introduction: What is Long COVID?

What is Long COVID?

“Long COVID” is a patient-coined term that is generally used to describe symptoms following a Covid-19 infection that last for more than four weeks. While the mainstream media began covering Covid-19 as early as December, 2019, mainstream news coverage of long-term symptoms of Covid-19 did not appear until April, 2020, and many outlets did not cover the topic until the summer and fall of 2020. 

Long COVID is an umbrella term, and can be used to describe patients with a diverse range of symptoms, experiences, and care opportunities, including people with post-ICU syndrome, hospitalized or non-hospitalized patients, people with visible organ damage, people with multi-system long-term symptoms that don’t always show up on tests, and people with initially mild or asymptomatic infections who develop long-term symptoms weeks or months later. Some patients received positive test results early in their infection, but testing opportunities were rare for people who became sick during the first wave in the United States, and testing reliability issues persist. Thus, some Long COVID patients do not have serological “proof” of infection. Instead, some have obtained clinical diagnoses from doctors who are familiar with the condition, while others have been unable to secure appointments with such clinicians and remain self-diagnosed. 

Some Long COVID patients seem to make full or nearly full recoveries. Others have been diagnosed with additional and/or related illnesses, including Myalgic Encephalomyelitis (ME/CFS), Mast Cell Activation Syndrome (MCAS), and various forms of Dysautonomia including Postural Orthostatic Tachycardia Syndrome (POTS). Some Long COVID patients remain ill more than a year after their initial symptom onset; some have made partial or full recoveries. The diversity of Covid-19 patient experiences means that patients’ likelihood of partial or full recoveries differs from patient to patient, and reporters should use caution when drawing conclusions about recovery or treatments relevant to all Long COVID patients, until further research has been completed. 

A brief history of patient-led efforts for recognition

The first accounts of Long COVID came from the Covid-19 patient community and related chronic illness and disability communities. People with other post-infectious illnesses, like ME/CFS, warned about the potential mass disabling impact of a Covid-19 pandemic as early as March 2020. That same spring, Covid-19 patients began speaking publicly about long-term symptoms, first via social media threads and then via articles in mainstream publications. A January 2021 article by Long COVID patients and academics Felicity Callard and Elisa Perego explains in greater detail the trajectory of the patient-led movement to name and address Long COVID.

Atlantic reporter Ed Yong’s articles on Long COVID from summer 2020 shined a greater light on the issue as both a significant long-term outcome of the pandemic, and a launching pad for patient-led activism. Long COVID patient activism has been covered in some outlets, including The Los Angeles Times and Medium, but has not received as much attention as Long COVID, itself. Journalists reporting on Long COVID should take time to research patient contributions to advocacy wins such as funding for research or interim guidance on the condition, as some news stories have unintentionally erased the patient-led efforts that influenced these decisions. 
Finally, patient-led communities like those that exist on social media and via online support groups can serve as excellent resources for journalists looking to connect with patients and understand Long COVID- related issues on a deeper level. However, it is important to understand the varying types of support groups and online communities that exist and to describe them accurately. Journalists should also use caution when extrapolating theories on demographics from support groups alone, as these communities can be self-selecting and are not always representative of the larger patient population (see more on this in the sections on demographics and prevalence, and interviewing patients).

Click here to read the full guide.

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Fiona Lowenstein (they/she) is a writer, speaker, TV producer, and media consultant focusing on how health, wellness, and science intersect with culture, politics, and social justice. Their writing has been published in The New York Times, Vox, and The Guardian, among other publications. Most recently, Fiona has been writing and speaking about the COVID-19 patient experience and long-haul COVID, as well as the emerging COVID patient advocacy movement. You can find them on Twitter and Instagram @fi_lowenstein.

Additional contributors can be found in the linked PDF.