Thousands of death certificates previously tallied by the Centers for Disease Control and Prevention as COVID-19 fatalities were actually related to long COVID, the ongoing symptoms that some people struggle with for weeks, months or even years after their initial recovery from a coronavirus infection.
The new findings from the CDC's National Center for Health Statistics, published Wednesday, count at least 3,544 deaths involving long COVID through June 2022 — a number researchers say is likely an underestimate of the true toll.
The tally makes up just 0.3% of the more than one million COVID death certificates the agency reviewed. They searched for keywords in the reported cause of death linked to what doctors call "Post-Acute Sequelae of COVID-19" or PASC, including terms like "chronic COVID," "long COVID," "long haul COVID," and "post COVID syndrome."
Understanding of how to classify these symptoms by the coroners and doctors who fill out death certificates has evolved over the course of the pandemic, they say.
"We have limited information about long COVID mortality," NCHS official Farida Ahmad, one of the authors of the report, told a panel of the agency's outside advisers in October. "There are currently no estimates of the number of long COVID deaths in the U.S. and this is due to a number of challenges. Long COVID diagnostic guidelines are evolving over time as we understand more about the condition, so there's no simple diagnostic test for long COVID."
New federal guidance that aims to standardize reporting of these deaths has also yet to be published. Ahmad told the panel earlier this year that the agency planned to issue its new recommendations based in part on the report's findings. An NCHS spokesperson said the agency still planned to publish new recommendations, but said there was not yet a date for when they would be released.
Nearly 8 in 10 of the reported long COVID deaths occurred in seniors, with Americans aged 75-84 years old making up the largest percentage (28.8%) of these fatalities. Around 8 in 10 of the reported deaths were in White people, and the rates for men were higher than women in almost every age group.
Reports of long COVID deaths varied substantially over the course of the pandemic, with many reported around the Omicron surge last winter. The highest monthly toll was in February 2022.
More than two-thirds of the deaths mentioning long COVID were on certificates citing COVID-19 as the underlying cause of death. Heart disease was the second most frequent underlying cause, cited in 8.6% of long COVID deaths.
The symptoms and toll of long COVID
Scientists are continuing to study how to diagnose and treat the wide spectrum of reported long COVID symptoms, which can range from difficulty breathing to menstrual cycle changes. Some other common symptoms include fatigue; "post-exertional malaise," meaning feeling worse after exercise or exertion; "brain fog," headache, cough, chest pain or abdominal pain.
Patients may have organ damage that can persist long after the acute phase of the infection has passed.
A review from Veterans Affairs authors, published earlier this year, found major organ damage ranges between 2% and 22% in studies of COVID-19 patients after leaving the hospital. Some were at greater risk of new issues like stroke after being discharged.
An ongoing survey published by the CDC, in conjunction with the U.S. Census Bureau, estimated in November that around 5.4% of adults say they are experiencing limits to what they can do as a result of long COVID.
However, simply tallying long COVID's true prevalence remains elusive for scientists.
Many people may not even know that they had a COVID infection before developing symptoms, officials say, or they can struggle to figure out whether they have recovered from their long COVID symptoms.
Another NCHS project has been conducting in-depth "cognitive interviews" with COVID-19 survivors, gauging how they respond to survey questions about the lingering symptoms.
"Another follow-up question that we asked was: 'Do you still experience any of these symptoms now?' One respondent answered, 'I don't know,' Meredith Massey, an NCHS scientist taking part in the interviews, told the agency's October meeting.
"This respondent elaborated, 'Probably, I have no clue. I don't know if my taste is back entirely because the memory of what my taste used to be like is not the same,'" Massey added.
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