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COVERING

LONG COVID

Informed by data, public records

& patient experiences

Tipsheet: bit.ly/NICAR23_LongCOVID

Betsy Ladyzhets

MuckRock & Freelance

NICAR 2023, 3/3/2023

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What is Long COVID?

Term coined by patients
Broadly defined as long-term symptoms following a coronavirus infection
CDC: symptoms present 4 weeks after infection, continue for 3+ months
WHO: symptoms present up to 3 months after infection, continue for 2+ months
May include sub-categories

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Other key terms

Post-acute sequelae of COVID-19 (PASC)
Post-COVID conditions
Long-hauler
NIH RECOVER
Related conditions:

ME/CFS
Dysautonomia, POTS
Mast Cell Activation Syndrome
Autoimmunity

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How we track Long COVID

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Cohort studies
Electronic health record studies
Reviews, meta-analyses

Scientific papers

Household Pulse Survey
NYC Community Health Survey

Surveys (national, local)

Labor force updates
Disability benefits (SSA, state/local programs)

Economic data

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Lists of Long COVID or post-COVID clinics
Patient support & advocacy groups

Patient resources

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More reporting resources

Contact info for 200+ patients, experts interested in talking to journalists

Long COVID source list

Reference for journalists, advocates writing about Long COVID

Body Politic guide

A group of Long COVID patient-researchers leading new science and advocacy

Patient-Led Research Collaborative

Detailed mortality data on COVID-19 and other causes of death

CDC WONDER

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Common mistakes to avoid

Overstating a prevalence estimate from one source
Focusing on one narrow group of patients
Characterizing Long COVID as “psychological”
Writing about it as “new” or “mysterious”
Not talking to patient sources

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Tweet: https://twitter.com/julierehmeyer/status/1628543038619279360

More detailed notes in the tipsheet

Overstating a prevalence estimate from one source:

Scientific studies with different methodologies may have wildly different estimates of how many people get long-term symptoms after acute COVID-19.

Focusing on one narrow group of patients:

Long COVID is very broad; some researchers now say it may be a group of related conditions (similar to cancer)
Overly focusing on people who were hospitalized, those who are fully disabled, those who were entirely healthy before, etc. may lead to misleading narratives.

Characterizing Long COVID as “psychological”:

We have overwhelming evidence at this point showing that patients have very real organ damage, including brain damage. It’s not “all in people’s heads.”
For more detail, see this feature in Scientific American.

Writing about it as “new” or “mysterious”:

There are thousands of scientific papers describing Long COVID; we’ve learned a lot about it in the last three years.
Pre-pandemic, patients were suffering from related post-infectious chronic diseases (ME/CFS, POTS, etc.)

Not talking to patient sources:

Patients are the ultimate experts! The best source for a story is often someone with lived experience as well as professional experience in your topic of interest.

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Tips for talking to patient sources

Above all, be empathetic to what your sources have gone through!

EMPATHY!

Be flexible on:

Timing
Format
Advanced prep

FLEXIBILITY

Patient sources are experts on their condition; you can ask hard questions without being disrespectful.

EXPERTISE

Sources might “crash” after (or even while) talking to you.

FATIGUE

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Coverage beyond science & health

Investigative/data stories
Public policy
Labor
Food & drink
Lifestyle
Technology

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Brainstorming!

Open a couple of data sources and/or resources from the session and use them to identify 1-2 Long COVID story ideas for your community or beat.

Recommendations for this exercise:

Long COVID source list
Map of clinics (Science News)
Household Pulse Survey
CDC WONDER

Tipsheet: bit.ly/NICAR23_LongCOVID

Contact me: