By Bara Vaida and Tara Haelle
In the coming year, more clues are expected to emerge aimed at unraveling the mystery of long COVID as dozens of global study results are released.
To help you with your coverage, here is a summary of what is known (as of October 2022) about long COVID, resources for finding studies to follow, and advice for writing about these Long COVID medical studies, how to find patients, and some experts to call.
Why use the term “long COVID”?
Before we can discuss the characteristics or research of this condition, we have to decide what to call it. Other terms for long COVID include long-hauler COVID, post-COVID syndrome, post-acute COVID-19, chronic COVID and, as the CDC calls it, post-acute sequelae SARS-CoV2 syndrome or PASC.
We have explicitly chosen to use “long COVID” and encourage other journalists to use “long COVID” because it’s the term that originated from the patient community experiencing it — also the people whose advocacy forced public health officials, physicians and researchers to take note of it which is why those patients prefer the term. For an in-depth understanding of the term’s evolution, see this article from two public health researchers who also have long COVID, including Dr. Elisa Perego, who first coined the hashtag #longcovid on Twitter. This shorter, more direct article explains why long COVID is preferred over other terms, starting with the need to ensure research and discussion about long COVID remains patient-centered at all times.
We won’t repeat all the arguments here, but in short, there’s been a long history of medical dismissal and neglect for patients who have disabilities and/or experience long-term, persistent health problems. The best example is chronic fatigue syndrome, whose sufferers were marginalized, causing delays and gaps in research and treatment and plenty of gaslighting of patients at medical visits. Terms such as “post”, “syndrome” and “chronic” can delegitmize suffering and make it harder to access care, Perego and her fellow long COVID researcher-advocates argue. Those terms also “carry assumptions about the condition’s underlying physiology that have not yet been properly investigated.” A major strength of the term “long COVID” is its lack of specificity: we still don’t know what causes long-term symptoms, why some experience them and some don’t, how long the symptoms last, or many other aspects of the condition. “Long COVID” makes explicit the only thing we know: it lasts a long time after getting COVID.
The term long COVID also emphasizes the morbidity of COVID-19 when early discussions focused primarily on hospitalization and death. “Long COVID” also calls into question whether “mild” COVID is truly “mild” — since some mild cases lead to long COVID — and neuters the claim that only people who are old or have underlying conditions are at risk for complications, since plenty of previously healthy individuals suffer from long COVID. Finally, the term long COVID is simple, direct and accessible to the general public whereas terms like the CDC’s PASC for “post-acute sequelae SARS-CoV2 syndrome” is too medicalized and jargony to have any real meaning for patients and therefore delegitimizes the seriousness of the condition.
What is the correct definition for long COVID?
The definition of long COVID is still evolving — again the reason it’s helpful to use this term instead of terms such as “post-acute” that presume a specific “before” and “after” for symptoms that simply never go away.
The CDC defines it as someone that has at least one of a wide range of COVID-19 symptoms lingering for four weeks or longer after SARS-COV-2 infection — most often symptoms like severe fatigue, brain fog or trouble with breathing — and the symptoms are inhibiting the ability to perform daily activities and to work. It can be qualified as a disability under the Americans with Disabilities Act.
The World Health Organization defines it as having symptoms for 8 weeks or longer, within 3 months of infection.
What do journalists need to know about the studies so far on long COVID?
The most important thing to know straight off is that the lack of a single agreed-upon definition (or even term) means that the research is all over the place for long COVID. Incidence and prevalence estimates will vary greatly depending on how the authors of a particular study define long COVID and how many symptoms they include. Severity will also vary, as will the duration of long COVID.
It’s important to be transparent with audiences about the uncertainty and changing nature of the evidence when reporting on long COVID research and to be conscientious about how people may interpret high, low, or seemingly contradictory numbers. For example, on the one hand, it can unnecessarily frighten, or even jade, people if they read that half of everyone who gets COVID develops long COVID. But stating that only 5% develop it can understate the risk so that people don’t take it as seriously. It’s possible both of those statistics are accurate: maybe half of people have mild shortness of breath for a few months here and there, but only 5% experience such severe symptoms that they cannot work or leave home. Specifying those differences is important. Even terms in the middle, such as the “1 in 20” found in a CDC survey, can risk both problems: sounding exaggerated to some and underplayed to others unless you provide context for what, actually, those “1 in 20” people are experiencing. This is a huge challenge for journalists, especially since, as one epidemiologist told Nature, “The public does not react very well to saying ‘between 15% and 50%’.”
That means that much of what researchers have learned about long COVID may not be representative of the broader population. The earliest research published was from the patient population, and it’s still difficult to find reliable data on long COVID incidence and prevalence. It’s also important to pay attention to whether a study was conducted before or after the rollout of vaccines, even though the relationship between vaccinations and long COVID risk still isn’t clear.
Nearly all studies on long COVID are observational, so pay close attention to how the participants were selected and how diverse they are or aren’t. A study conducted in Sweden is unlikely to have much relevance in the U.S., for example, because population-wide differences are so substantial. It’s also important to consider how social determinants of health intersect with long COVID experiences and care. Finally, keep in mind the wide range of possible biases that can exist with observational studies and how outcomes are defined.
What are the studies to keep an eye on in the year ahead?
Results from broader and more rigorous studies are coming. Here’s a sampling of a few to watch out for:
In August, the Biden administration announced the National Research Action Plan on Long COVID and under that umbrella, the National Institutes of Health, launched the RECOVER program, and the CDC created the Inspire study. The Veteran’s Administration announced in April that it was expanding on its long COVID research initiative analyzing its patients records’ data. [To learn more about the Biden administration effort, see this interview with U.S. Health and Human Services Assistant Secretary Admiral Rachel Levine.]
The PolyBio Research Foundation created the Long COVID Research Initiative to coordinate clinical trials and studies with scientists at Cardiff University Hospital of Wales, Emory, Harvard, J. Craig Venter Institute, Johns Hopkins, Mt. Sinai Hospital, Stanford, University of California, San Francisco, University of Pennsylvania Vanderbilt and Yale. The Patient Led Research Collaborative is also funding several long-COVID studies. Check ClinicalTrials.gov and type in ‘long COVID’ to find additional studies.
One thing to consider in tracking long COVID studies is to look at those measuring more than just the epidemiology of the condition or treatments for it. Pay attention to studies that look at how public health officials, researchers, doctors, patients and the general public are talking about long COVID and how perception of the condition is changing. For example, one recent study looked at state health departments’ public communication about long COVID via their Facebook pages between January 2020 and January 2022 and found that posts about long COVID in general were very rare — even throughout 2021 when the condition had been fully recognized as real by the medical establishment. Studies like this can shed a light on how much or how little attention public health authorities are devoting to education on long COVID and may explain gaps in the general public’s knowledge.
What percent of those with infection go on to develop long-COVID?
For the reasons listed above, the answer is evolving. During a September 2022 SciLine media briefing, Emory University’s Dr. Alexander Truong, estimated that based on data and the patient population he treats, he estimates about 10% to 30% of those infected with SARS-CoV-2 have lingering symptoms for more than four weeks. University of Michigan’s Dr. Bhramar Mukherjee estimates that 8% to 17% suffer from long-term symptoms and about 1 to 5% report the long-term symptoms are debilitating. A new JAMA study however, found that about 15% of Americans report long COVID.
Who is at risk?
Those that seem to be at highest risk of long-COVID are unvaccinated, had been hospitalized for COVID-19, females between 40 and 50, had an existing medical condition before COVID such as asthma, poor mental health, obesity, Epstein-Barr syndrome, but University of Michigan’s Mukherjee cautioned that these risk factors may be biased based on data collection, i.e. women tend to seek medical help more often than men, and so may appear to have more long COVID symptoms than men.
Does being vaccinated reduce the chances of developing long COVID?
There still isn’t enough data yet to know. Initially the answer is yes, though less than perhaps had been hoped. A May 2022 Veterans Affairs study estimated vaccination reduced the risk of long COVID by 15%, while the United Kingdom’s Office for National Statistics estimates it reduces the risk by 41%.
Where can journalists find long COVID patients and interesting patient stories?
Independent journalist Kiera Butler told AHCJ that her favorite place to find patients is to head to Reddit and search the COVID forums. “It’s a treasure trove of information,” she said. Check out the Body Politic COVID-19 support group and the Twitter feed of Alison Sbrana. She is an advocate and board member of Body Politic. Twitter is also a rich pool for finding patients, especially since it’s where the long COVID patient population initially found one another and began organizing and advocating together. Simply use the #longcovid hashtag in the search function and limit your search to “People.” This will pull up all the people who have #longcovid in their bio. Some of these folks will be researchers or journalists, but many are long COVID patients and advocates, including researchers among them.
Who are some media savvy and reliable experts who are treating long COVID patients to call?
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Kathleen Bell, M.D., University of Texas Southwestern Medical Center professor and chair of the Department of Physical Medicine and Rehabilitation (@KathleenBellMD)
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W. Michael Brode, M.D., internal medicine specialist at the University of Texas at Austin Dell Medical School and medical director of UT Health Austin’s Post-COVID-19 Program (william.brode@austin.utexas.edu)
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Linda Geng, M.D., director of the Stanford Post-Acute COVID-19 Syndrome Clinic
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Bhramar Mukherjee, M.D. University of Michigan School of Public Health (bhramar@umich.edu, @BrahmarBiostat)
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Allison Navis, M.D., assistant professor in the Division of Neuro-Infectious Diseases, Icahn School of Medicine at Mount Sinai (212-241-7076)
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Christian Sandrock, M.D., University of California Davis School of Medicine (cesandrock@ucdavis.edu )
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Kristen Sexson Tejtel, M.D., Ph.D., M.P.H., a pediatric cardiologist at Texas Children’s Hospital and Baylor College of Medicine, treats pediatric long COVID (832-826-5600)
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Alexander Truong, M.D., Emory University, assistant professor of medicine (alex.d.truong@emory.edu)
