Further Thoughts on that JAMA Network Open Article and Estimates of Long Covid Prevalence

By David Tuller, DrPH

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Last week, I wrote two posts–here and here–about a new Norwegian study in JAMA Network Open that was essentially designed not to find differences in the prevalence of prolonged symptoms in patients with and without coronavirus infection confirmed by PCR. The study reported that almost half of the sample in both the PCR-positive and PCR-negative groups met the authors’ operationalized version of criteria for what the WHO has named post-Covid-19 condition (PCC)—one of a number of definitions for what is commonly being called long Covid. 

The study provided an example of how applying loose criteria loosely is likely to yield a heterogeneous sample that includes an unknown number of people with something—but not necessarily the specific condition of interest. By then fashioning a problematic comparison group, the JAMA Network Open authors created an opportunity for themselves to question the links between an actual coronavirus infection and subsequent disabling symptoms. 

That also left them with an opening to propose the need to study non-pharmacologic treatments—the kinds of approaches, like graded exercise therapy and cognitive behavior therapy, that have already been studied ad nauseam for the cluster of illnesses variously called ME, CFS, ME/CFS and other iterations. As we know, these treatments have failed to demonstrate the benefits long claimed for them by the GET/CBT ideological brigades, including some authors of the study. 

In contrast, an analysis of U.S. adults last fall from the Center for Economic and Policy Research, a think tank in Washington, DC, reported that a more modest proportion of patients is suffering from long Covid. The analysis was based on the Census Bureau’s Household Pulse Survey, a 20-minute online questionnaire seeking to assess “how the coronavirus pandemic and other emergent issues are impacting households across the country from a social and economic perspective.” 

The survey included the following questions:

*”Of all adults, whether they have tested positive for COVID-19 (using a rapid point-of-care test, self-test, or laboratory test) or been told by a doctor or other health care provider that they have or have had COVID-19″

*”Of adults who have ever had COVID, whether they have ever had any Long COVID symptoms that lasted three months or longer”

*”Of adults who have ever had COVID, whether they currently have Long COVID conditions”

*”Of adults currently experiencing Long COVID, whether their day-to-day activities have been limited: a lot, a little, or not all)”

And here’s the key finding from that report: “Of the 119 million adults reported as having received a positive COVID-19 diagnosis as of late September 2022, 15 percent report current Long COVID symptoms (symptoms lasting longer than three months) and 29.6 percent have ever experienced Long COVID.” Needless to say, these estimates are closer to what is generally known about prolonged post-viral and post-infectious symptoms than those in the JAMA Network Open article; they should be taken as more credible than the almost 50% rate reported in the Norwegian study.

The survey data indicated that around 18 million reported having current long Covid symptoms and 36 million reported having had them at some point. Presumably many of those who no longer reported having long Covid symptoms experienced cases of natural but very slow and extended recovery from the acute infection.

The numbers of those reporting that they were very or somewhat limited by long Covid symptoms were a bit lower, albeit still enormous in absolute terms given the total base of infections: “In late September 2022, about 4.4 million adults reported current Long COVID symptoms that reduced their ability to carry out day-to-day activities by a lot. Another 9.9 million reported Long COVID-related impairments that slightly reduce their ability to participate in daily activities.” 

The analysis called on the federal government to create a new entity to study long Covid and other “complex chronic conditions.” Others have made similar recommendations. Last August, sociologist and New York Times columnist Zeynep Tufekci called for a National Institute for Postviral Conditions. Long Covid advocates have been making similar appeals. 

In any event, here’s the recommendation from CEPR’s report: 

“To better care for those currently experiencing debilitating effects of Long COVID and other complex chronic conditions, the US should establish a dedicated new National Institute within the National Institutes of Health. Given sufficient funding, this new Institute would facilitate research to improve our understanding of a variety of complex chronic conditions, including but not limited to Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Post-Treatment Lyme Disease Syndrome, dysautonomia, Mast Cell Activation Syndrome (MCAS), fibromyalgia, and Ehlers-Danlos Syndrome. The US must also ensure equitable access to medical treatment, workplace accommodations, and other services for those experiencing Long COVID and other chronic conditions.”