COVID-19 Data Dispatch

Category: Long COVID

  • 12 statistics showing the pandemic isn’t over

    12 statistics showing the pandemic isn’t over

    Long COVID and ME/CFS patients protest in front of the White House, telling Biden that the pandemic is not over and demanding action on their conditions. Image courtesy of ME Action.

    Last Sunday, 60 Minutes aired an interview with President Joe Biden in which he declared the pandemic is “over.”

    “The pandemic is over,” Biden said, while walking through the Detroit Auto Show with 60 Minutes correspondent Scott Pelley. “We still have a problem with COVID. We’re still doing a lot of work on it. But the pandemic is over. If you notice, nobody’s wearing masks, everybody seems to be in pretty good shape.”

    Most of the debate and dissection of this interview has focused on Biden’s statement that the “pandemic is over.” Is it, actually? (Epidemiologists say no.) Does he have the authority to declare it over? (No, that’s a job for the WHO.) Was his statement just reflecting what most Americans are already thinking? (Depends on who you call “most Americans.”)

    See, I think the key part of Biden’s quote here actually comes at the end: “everybody seems to be in pretty good shape.” Seems to be is doing a lot of work here. In the interview, Biden is strolling through the auto show, through groups of unmasked people looking at car exhibits.

    He is not actually talking to these bystanders, asking them whether they’ve lost loved ones to COVID-19, lost work during the pandemic, or faced any lingering symptoms after catching the virus themselves. Biden also isn’t considering the people who were excluded from this auto show: the Americans who were left disabled with Long COVID, and those still taking safety precautions due to other health conditions.

    Images of the auto show, like those of packed indoor restaurants or maskless stadiums, seem to suggest that, yeah, Americans no longer care about COVID-19. But there are plenty of other images that don’t make it into high-profile media settings like Biden’s interview. 

    Today, I invite you to consider a few of the images that Biden isn’t seeing. Here are 12 statistics showing how the COVID-19 pandemic continues to have a massive impact on Americans:

    • At least 400 Americans are dying with COVID-19 every day, about 47,000 deaths total between June and September 2022. Daily death data tend to be underestimates, because it can take weeks to process death certificates (and numbers are often retroactively edited up). But we can still see that hundreds of people are dying each day. As Sarah Zhang points out in The Atlantic, this is several times the threshold experts set in early 2021 for calling the pandemic at an end.
    • About 25,000 people are currently hospitalized with COVID-19 cases. Yes, many of the people included in this statistic probably entered the hospital for another reason, then tested positive as part of routine screening. But incidental coronavirus infections still put pressure on the hospitals caring for these patients, and can intersect with a wide variety of other health conditions, potentially causing long-term issues for patients.
    • About 7.6% of adults are currently experiencing some form of Long COVID, as of early August. This estimate, which I pulled from the Census and CDC’s Household Pulse Survey, rises for certain demographics: almost 10% of women, 11% of transgender adults, 11% of adults with less than a high school diploma, and 15% of adults with a disability are currently experiencing Long COVID.
    • Hundreds of Long COVID and ME/CFS patients protested at the White House and online on Monday. Biden’s statement coincidentally landed the night before a planned protest, in which patient-advocates called for the president to declare a national emergency around Long COVID and ME/CFS. The protest was covered in the New York Times, MedPage Today, the BMJ, and other outlets.
    • 19 patients, patient-advocates, and experts testified at a New York City Council hearing about Long COVID and gender on Thursday. Long COVID patients and those with related conditions (like ME/CFS and HIV) talked about dismissals from doctors and inability to return to their pre-COVID lives. They called for more comprehensive medical care and other forms of financial and social support for patients. I covered the hearing for Gothamist/WNYC.
    • About 2.5 million adults were recently out of work due to a COVID-19 case, either because they were sick themselves or were caring for a sick person. Another 1.6 million adults were out of work due to concern about getting or spreading COVID-19. These statistics come from the most recent iteration of the Household Pulse Survey, conducted from July 27 to August 8, 2022.
    • About 2.2 million adults were recently laid off or furloughed due to the COVID-19 pandemic. Another one million had their employers go out of business due to the pandemic, and 900,000 had their employers close temporarily due to COVID-19. These data are from the same Household Pulse Survey.
    • Over 50 million adults experienced symptoms of anxiety for at least half the days in the last two weeks, at the time of the most recent Household Pulse Survey. Almost 40 million adults experienced symptoms of depression for at least half the days in the same two-week period.
    • Over 80% of Americans still support the federal government providing free COVID-19 vaccines, treatments, and tests to anyone who needs them, according to an Axios-Ipsos poll conducted in early September. A past iteration of that poll, from March 2022, found that 74% of Americans reported they were “likely to wear a mask outside the home if COVID-19 cases surge again in their area.”
    • About 3% of Americans, or around 12 million people, are immunocompromised and still have reason to take intense COVID-19 precautions. Immunocompromised people have been eligible for extra vaccine doses, but are still more vulnerable to both severe COVID-19 symptoms and Long COVID.
    • Over one million seniors live in nursing homes, and almost one million more live in assisted living and other forms of long-term care facilities. Seniors in long-term care have represented a hugely disproportionate share of deaths from COVID-19, and the CDC just made its mask recommendations for these facilities much more lenient—putting many vulnerable adults at risk.
    • 2.5 billion people worldwide still haven’t been vaccinated, according to estimates from Our World in Data. Bloomberg’s vaccine tracker estimates that, at the current pace of first doses administered, it will take another 10 months for just 75% of the global population to have received at least one COVID-19 shot. As long as COVID-19 continues to spread anywhere in the world, new variants can be a threat everywhere.

    More on Long COVID

  • COVID source shout-out: Millions Missing protest

    COVID source shout-out: Millions Missing protest

    Flyer for the Long COVID and ME/CFS-led protest, happening tomorrow at the White House. Image via ME Action.

    Tomorrow afternoon, patient-advocates living with Long COVID and other chronic diseases will be at the White House demanding that the federal government act urgently to address these conditions. ME Action, an advocacy group focused on myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), is the leading organization behind the protest.

    The protest’s demands include nationwide education on ME/CFS and Long COVID, education specifically for doctors in diagnosing these conditions, funding for research and potential treatments, and economic support for patients.

    While the main event will take place in Washington, D.C., organizers are also encouraging people from other parts of the country to participate online. You can learn more about the event here. (I personally plan to watch and cover the protest remotely.)

    Patient advocacy around Long COVID and related conditions like ME/CFS has grown mostly remotely over the last two years, so it’s a major milestone for patient groups to converge on the White House in an event like this one. For any journalists interested in covering the protest, feel free to email or DM me for background info, connections to organizers, etc!

    more source spotlights

  • Sources and updates, September 18

    • COVID-19’s impact on the workforce: Economists at the National Bureau of Economic Research released a new working paper this week, showing that COVID-19 has “persistently” reduced the U.S.’s labor supply. Using data from the Census’ Current Population Survey, the researchers found that workers who had to take off at least a week from work due to COVID-19 were seven percentage points less likely to still be in the labor force a year later, compared to those who didn’t miss a week. Overall, Long COVID pushed about 500,000 people out of the workforce, the paper estimates. Notably, this estimate is much lower than the analysis from the Brookings Institution published last month; the gap between these two reports suggests a need for more robust data collection on Long COVID and work.
    • Long COVID prevalence from a population survey: Last week, I shared a new preprint from Denis Nash and his team at the City University of New York, reporting on the results of a national survey used to determine true COVID-19 prevalence during the BA.5 surge. This week, Nash et al. shared another preprint from that same survey, focused on Long COVID. Based on the nationally-representative survey (sample size: about 3,000), the researchers estimate about 7.3% of U.S. adults are currently experiencing Long COVID symptoms—matching estimates from the Household Pulse Survey. One-quarter of those Long COVID patients surveyed reported that their day-to-day life activities were significantly impacted.
    • Lancet COVID-19 Commission shares lessons from the pandemic: The Lancet COVID-19 Commission is an interdisciplinary group of scientists convened by the journal to study the COVID-19 crisis and make recommendations for the future. In the group’s final report, released this week, the scientists focus on “failures of international cooperation” that have contributed to unnecessary illness and deaths. Those failures include delays in acknowledging that the coronavirus spreads through the air, not enough funding for low- and middle-income countries, “the lack of timely, accurate, and systematic data,” and more.
    • COVID-19 archive of Dr. Fauci’s emails: The COVID-19 Archive is a project aiming to compile digital documents tracing the early phases of the pandemic. Its prototype iteration allows users to search and sort through the early-COVID inbox of Dr. Anthony Fauci, via email records contributed by investigative reporter Jason Leopold. (MuckRock, where I work part-time, is a collaborator on the project, but I’m not personally involved with it.)
    • U.S. has active circulation of vaccine-derived polio: This week, the CDC and World Health Organization formally announced that the polioviruses spreading in New York state constitute active circulation of vaccine-derived polio. Most other countries that meet this WHO classification are developing nations in Africa, as well as Israel, the U.K., and Ukraine. For more on what exactly “vaccine-derived polio” means and how the disease made a comeback in the U.S., I recommend reading Maryn McKenna in WIRED.
    • Neurological symptoms associated with monkeypox: Here’s one study in the CDC’s Morbidity and Mortality Weekly Report that caught my eye this week: the agency has identified two cases in which monkeypox patients faced inflammation in their brains (called encephalomyelitis), leading to neurological symptoms. Both patients were hospitalized and required weeks of rehab, including use of walkers. The CDC says these symptoms are rare but worth monitoring, and is encouraging local health agencies to report any further cases.

    All featured sources

  • Sources and updates, September 11

    • White House plans for annual boosters: This week, Biden administration officials announced a plan for one COVID-19 shot each year, on a similar timeline to the flu shots distributed every fall. In this plan, this fall’s Omicron-specific boosters are the first iteration of annual boosters. Some scientists are skeptical about the plan, given that (as I discussed last week) we have very little data on how well the new boosters work. It could be preemptive to say just one shot each year will be enough, and the federal government should also be investing in next-generation vaccines that might better prevent infection and transmission.
    • Urgency of Equity Toolkit: The People’s CDC, a health advocacy organization aiming to fill gaps in COVID-19 guidance left by the official CDC, has published a toolkit focused on school safety for the fall. The presentation walks readers through why public health measures are still needed in K-12 schools and potential layers of protection, such as improved ventilation, surveillance testing, and improving pediatric vaccination rates.
    • Parents and caregivers lost to COVID-19: Speaking of protecting children, a new study published in JAMA Pediatrics this week estimates how many children have lost parents or caregivers during the pandemic. The researchers (an international group including experts at the World Health Organization, World Health Organization, and others) produced their estimates based on global excess mortality data—going beyond deaths officially reported as COVID-19. In total, the study estimates about 10.5 million lost parents or caregivers and 7.5 million became orphans worldwide.
    • True virus prevalence during the BA.5 surge: I’ve previously cited the work of Denis Nash and his team at the City University of New York; they utilized a population survey to estimate how many New Yorkers actually got COVID-19 during the city’s spring surge. This week, the team shared a new study that uses the same approach for the whole country. While their sample size was fairly small (about 3,000 people) and the study has yet to be peer-reviewed, its findings are striking: about 17% of U.S. adults surveyed were infected by the coronavirus during a two-week period from late June to early July, around the peak of the BA.5 surge.
    • New independent effort to study Long COVID: This week, a group of researchers, clinicians, and patients announced the Long Covid Research Initiative, a new collaborative effort to study the condition and identify potential treatments. The group has raised $15 million in private funding and aims to move more quickly than public or academic efforts that have been bogged down in bureaucracy (among other challenges). I’m excited to see what this new group finds.

    All featured sources
  • Sources and updates, September 4

    Sources and updates, September 4

    Omicron BA.4.6, a newer version of BA.4, is currently more prevalent in the Midwest than other regions of the country. Chart via the CDC, retrieved September 4.
    • Slow rise of BA.4.6 is worth watching: As I mentioned in today’s National Numbers post, a newer subvariant labeled BA.4.6 is gaining ground over other versions of Omicron in the U.S. BA.4.6 evolved from BA.4, and has an additional mutation in the virus’ spike protein that enables it to bypass protection from prior infections. It’s unclear whether BA.4.6 will be able to fully outcompete BA.5, which is currently causing the vast majority of U.S. COVID-19 cases—these two strains are similar enough that the competition may go slowly. So far, the subvariant has been more prevalent in the Midwest than other regions of the country, according to CDC data. Also worth watching: BA.2.75, a subvariant that is dominating some European countries but hasn’t shown up significantly in the U.S. yet.
    • Up to 4 million people may be out of work due to Long COVID: Last week, policy research organization the Brookings Institute published a new report discussing the massive impacts Long COVID is having on America’s labor force. The report utilizes recent data from the Household Pulse Survey (released in June) estimating Long COVID prevalence, in conjunction with research on how many long-haulers might be out of work due to their condition. The results: between two and four million Americans potentially lost their jobs (or are working significantly less) due to Long COVID, costing at least $170 billion a year in lost wages. Even the low ends of these estimates are staggering.
    • U.S. life expectancy declined again in 2021: Americans born in 2021 may expect to live for 76 years on average, according to the CDC’s National Vital Statistics System. This is the lowest life expectancy has been since 1996. CDC researchers attribute the sharp decline in the last two years to the pandemic and drug overdose deaths. Disparities in life expectancy have also increased: Native Americans born in 2021 may expect to live only 65 years on average and Black Americans may expect to live 71 years, compared to 76 years for white Americans.
    • Biobot expands wastewater surveillance for opioid tracking: In the last couple of months, we’ve seen wastewater used to track monkeypox and polio, in addition to COVID-19—suggesting the technology’s capacity for broader public health surveillance. This week, leading wastewater company Biobot announced a new initiative to track opioid use and other high-risk substance use through a similar platform to its current COVID-19 efforts. Tracking the opioid crisis was actually the original focus for Biobot’s founders pre-pandemic, so it’s notable to see the company expanding in this direction now.
    • New technical report on monkeypox outbreak: Speaking of monkeypox, the CDC recently released a detailed report on how the disease has spread through the U.S. and other countries. It’s a new reporting format for the CDC, with the agency releasing data more rapidly than it might have in a scientific study—possibly emulating the U.K. Health Security Agency’s Technical Briefings. Notably, the CDC Center for Forecasting and Outbreak Analytics, the agency’s new modeling center, was a key contributor to the report. Former CFA leader Caitlin Rivers shared key findings from the report here. (And for more on CFA, see this story I wrote for FiveThirtyEight in June.)

    All featured sources
  • Two major Long COVID reports are coming in August

    Two major Long COVID reports are coming in August

    Two new White House/HHS reports about Long COVID and other long-term pandemic impacts will be released next month. Screenshot via Twitter.

    This past Friday, the White House and the Department of Health and Human Services held a briefing previewing two major reports about Long COVID.

    The reports, which the Biden administration plans to release in August, will share government resources and research priorities for Long COVID, as well as priorities for other groups impacted long-term by the pandemic, such as healthcare workers and people who lost loved ones to COVID-19. Friday’s briefing served to give people and organizations most directly impacted by this work (particularly Long COVID patients) advanced notice about the reports and future related efforts.

    It was also, apparently, closed to the press—a fact that I did not learn until I had already publicly livetweeted half of the meeting. I later confirmed with other journalist friends that the White House and HHS press offices did not do a great job of communicating the meeting’s supposedly closed status, as none of us knew this beforehand.

    https://twitter.com/fi_lowenstein/status/1548067218306387979

    Officials honestly didn’t share much information at this briefing that I didn’t already know, so it’s not as though I obtained a huge scoop by watching it. (For transparency’s sake: I received a link to register for the Zoom meeting via the COVID-19 Longhauler Advocacy Project’s listserv, and identified myself as a journalist when I signed up.)

    Due to confusion around the briefing’s status and the fact that other attendees (besides myself) livetweeted it, I feel comfortable sharing a few key points from the call. If this gets me in trouble with the HHS press office, well
 they’ve never answered my emails anyway.

    Key points:

    • These upcoming August reports are responding to a memorandum that the Biden administration issued in April calling for action on Long COVID. 
    • Over ten federal government agencies have been involved in producing the reports, which officials touted as an example of their comprehensive response to this condition.
    • One report will focus on services for Long COVID patients and others facing long-term impacts from the pandemic. My impression is that this will mostly highlight existing services, rather than creating new COVID-focused services (though the latter could be developed in the future).
    • The second report will focus on Long COVID research, providing priorities for both public and private scientific and medical research efforts. Worth noting: existing public Long COVID research is not going well so far, for reasons I have covered extensively.
    • An HHS team focused on human-centered design has been pursuing an “effort to better understand Long COVID” (quoting from their web page). This project is currently wrapping up its first stage, and expects to publish a report in late 2022.
    • Some Long COVID patients and advocates would like to see more urgent action from the federal government than what they felt was on display at this briefing.

    Here are a couple of Tweets from advocates who attended:

    I look forward to covering the reports when they’re released in August.

    More Long COVID reporting

  • Staggering new Long COVID research, and a correction

    Staggering new Long COVID research, and a correction

    The Census and NCHS are releasing new, comprehensive data on Long COVID prevalence based on a nationally representative survey.

    I’m doing another post dedicated to Long COVID research this week, unpacking a noteworthy new data source. Also, I have an update about a Long COVID study that I shared in last week’s issue.

    First: new data from the Household Pulse Survey suggests that almost 20% of Americans who got COVID-19 are currently experiencing Long COVID symptoms. The Household Pulse Survey is a long-running Census project that provides data on how the pandemic has impacted Americans, with questions ranging from job loss to healthcare access.

    In the most recent iteration of this survey, which started on June 1, the Census is asking respondents about Long COVID: specifically, respondents can share whether they had COVID-related symptoms that lasted three months or longer. The first round of data from this updated survey were released last week (representing respondents surveyed between June 1 and June 13), in a collaboration between the Census and the CDC’s National Center for Health Statistics (NCHS).

    The numbers are staggering. Here are a few notable findings, sourced from the NCHS press release:

    • An estimated 14% of all U.S. adults have experienced Long COVID symptoms at some point during the pandemic.
    • About 7.5% of all U.S. adults are currently experiencing Long COVID symptoms, representing about one in 13 Americans.
    • Out of U.S. adults who have ever had COVID-19, about 19% are currently experiencing Long COVID symptoms.
    • Older adults are more likely to report Long COVID than younger adults, while women are more likely to report it than men.
    • About 8.8% of Hispanic or Latino adults are currently experiencing Long COVID, compared to 6.8% of Black adults and 7.5% of White adults.
    • Bisexual and transgender adults were more likely to report current Long COVID symptoms (12.1% and 14.9%, respectively) than those of other sexualities and genders.
    • States with higher Long COVID prevalence included Southern states like Kentucky, Alabama, and Tennessee.

    This study is a big deal. The Household Pulse Survey is basically the closest comparison that the U.S. has to the U.K.’s highly-lauded Office for National Statistics survey, in that the survey can collect comprehensive data from a representative subset of Americans and use it to provide national estimates.

    In other words: two years into the pandemic, we finally have a viable estimate of how many people have Long COVID, and it is as large an estimate as Long COVID advocates warned us to expect. Plus, demographic data! State-by-state-data! This is incredibly valuable, moreso because the Household Pulse Survey will continue incorporating Long COVID into its questions.

    Also, it’s important to note that Long COVID patients were involved in advocating for and shaping the new survey questions. Big thanks to the Patient-Led Research Collaborative and Body Politic for their contributions!

    Next, two more Long COVID updates from the past week:

    • Outcomes of coronavirus reinfection: A new paper from Ziyad Al-Aly and his team at the Veterans Affairs Saint Louis healthcare system, currently under review at Nature, explores the risks associated with a second coronavirus infection. They found that a second infection led to higher risk of mortality (from any cause), hospitalization, and specific health outcomes such as cardiovascular disorders and diabetes. “The risks were evident in those who were unvaccinated, had 1 shot, or 2 or more shots prior to the second infection,” the researchers wrote in their abstract.
    • NIH data now available for Long COVID research: The National Institutes of Health’s “All of Us” research program is releasing a dataset from almost 20,000 people who have had COVID-19 for scientists to study. The data come from clinical records, genomic sequencing, and patient-reported metrics; researchers can use them to examine Long COVID trends, similarly to the way in which Al-Aly’s team uses VA records to study COVID-19 outcomes.

    And finally, a correction: Last week, I shared a paper published in The Lancet which indicated Long COVID may be less likely after an Omicron infection compared to a Delta infection. A reader alerted me to some criticism of this study in the Long COVID community.

    Specifically, the estimates in the paper are much lower than those found by the U.K.’s ONS survey, which is considered more reliable. This Lancet paper was based not on surveys but on a health app which relies on self-reported, volunteer data. In addition, the researchers failed to break out Long COVID risk by how many vaccine doses patients had received, which may be a key aspect of protection.

    Finally, as I noted last week, even if the risk of Long COVID is lower after an Omicron infection, the risk is still there. And when millions of people are getting Omicron, a small share of Omicron infections leading to Long COVID still leads to millions of Long COVID cases.

    More Long COVID reporting

  • Star Trek predicted post-viral illness, but provided few tools to stop its spread

    Star Trek predicted post-viral illness, but provided few tools to stop its spread

    Spock finds some graffiti by an infected crew member in Star Trek: The Original Series episode The Naked Time. Image via the Memory Alpha wikipedia / Paramount Global.

    It’s been a somewhat slower week for COVID-19 news, so here’s something a little different: a reflection on a very old episode of Star Trek, in the context of post-viral illness.

    Star Trek: Strange New Worlds, one of the new shows airing on Paramount+, has got me on a bit of a kick for the franchise. So, I’ve been rewatching The Original Series (TOS), which was one of my favorite TV shows in high school. (My girlfriend, who hasn’t seen any of the old Star Trek shows, has humored me by watching with me.)

    Last week, we watched an episode I remembered as one of my favorites: The Naked Time, episode four in the first season. In this episode—which first aired in September 1966—a strange virus from an alien planet gets onto the Enterprise and infects a number of crew members. Once infected, crew members lose their inhibitions and behave as though emotionally naked; this leads to such iconic scenes as Spock “sobbing mathematically,” Sulu chasing his colleagues with a rapier, Uhura saying she’s neither fair nor a maiden, and so on.

    Rewatching this episode two years into the pandemic, it struck me that Star Trek predicted—like it predicted iPads, cellphones, and so many other things—neurological symptoms triggered by a viral infection. While the Epstein-Barr virus was discovered in 1964, it would be decades before scientists understood how viruses like this one could cause fatigue, chronic pain, post-exertional malaise, and other similar symptoms.

    Now, of course, the world is facing an epidemic of Long COVID, the most prevalent post-viral illness in history. Recent estimates from the U.K.’s Office for National Statistics suggest that two million people—or, 3% of the entire U.K. population—are living with Long COVID. And Long COVID is bringing renewed attention to other conditions like ME/CFS and dysautonomia, which have a lot of symptom overlap. It’s hard to deny that infectious diseases can have ramifications far beyond what we usually expect from a cold or the flu.

    My girlfriend, who previously hadn’t seen most of TOS, has commented on how much early Star Trek episodes center around psychological dilemmas. Rather than watching phaser battles, we’re watching characters grapple with questions like, “How do you stop a hormonal teenager with infinite power?” and, “What would happen if Captain Kirk were split into good and evil halves?”

    The Naked Time fits into this pattern, but it also feels more like a horror story than the others—especially when one watches it in the midst of a COVID-19 (and Long COVID) surge. Star Trek’s writers guessed, nearly 60 years ago, that an infectious disease could impact people’s minds. But here we are in 2022: Long COVID patients are still systematically discredited by doctors, unable to access treatment and financial support, and discarded by American leaders’ decision to “live with the virus.”

    The episode also offers some lessons in infection control measures by showing us what not to do when confronted with a novel illness. The alien virus gets onto the Enterprise in the first place because a crew member, investigating dead scientists on an abandoned planet, takes off his hazmat suit to touch his face; without realizing it, he transmits the virus from an infected surface to his skin. And after this index case starts acting strangely on the ship, other crew members don’t isolate him until it’s too late. Funny how our basic public health measures haven’t changed since the 60s, either.

    Anyway, because this is Star Trek, Dr. McCoy saves the day by quickly developing a cure for the virus. He has no trouble administering it to the crew—there’s no vaccine hesitancy on the Enterprise.

    Still, this episode sticks with me, more now than when I first watched it years ago. With all the new technology we have now to fight COVID-19, the basic measures we can take to control a novel virus haven’t changed. And the stakes are higher than ever.

    More on Long COVID

  • New Long COVID studies demonstrate danger of breakthrough cases

    New Long COVID studies demonstrate danger of breakthrough cases

    About one in five adults who have COVID-19 will face a health condition potentially related to long-term symptoms, a new CDC study found.

    Two new studies on Long COVID, published this week, provide an important reminder of the continued dangers this condition poses to people infected with the coronavirus—even after vaccination. Neither study provides wholly new information, but both are more comprehensive than many other U.S. papers on this condition as they’re based on large databases of electronic health records.

    First: a team at the Veterans Affairs (VA) Health Care System in St. Louis, Missouri used the VA’s extensive health records database to study breakthrough COVID-19 cases. The VA database includes more than 1,400 healthcare facilities serving veterans across the country; this St. Louis team has previously used it to characterize Long COVID symptoms more broadly, to study long-term heart disease risks of COVID-19, and for other research.

    In the new paper, published this week in Nature Medicine, the researchers put together a cohort of about 34,000 people who had breakthrough COVID-19 infections. They compared this group to larger control groups of people who hadn’t been infected and people who had been infected prior to vaccination, along with comparisons to the seasonal flu.

    Vaccination does reduce the risk of Long COVID, the researchers found: people with breakthrough cases were 15% less likely to report Long COVID symptoms than those who were infected prior to vaccination. Breakthrough Long COVID patients were notably less likely to have blood clots and respiratory symptoms than non-breakthrough patients.

    But a risk reduction of 15% is pretty minimal, compared to the protection that vaccination offers against COVID-related hospitalization and death. Moreover, for most Long COVID symptoms, patients who had breakthrough infections showed relatively little difference to those who had non-breakthroughs, the researchers found.

    “Overall, the burden of death and disease experienced by people with breakthrough SARS-CoV-2 infection is not trivial,” lead researcher Dr. Ziyad Al-Aly wrote in a Twitter thread summarizing the study. That’s scientist speak for, “A breakthrough COVID-19 case can really fuck you up in the long term!” Later in his thread, Dr. Al-Aly advocated for additional public health measures—beyond simply vaccines—to reduce Long COVID risks.

    And second: a paper from the CDC’s COVID-19 Emergency Response Team, published in the CDC’s Morbidity and Mortality Weekly Report (MMWR) last week, used electronic health records to examine overall Long COVID risk after an infection. These health records came from Cerner Real-World Data, a dataset including about 63.4 million records from over 100 health providers.

    The CDC researchers identified about 353,000 adults who had received either a COVID-19 diagnosis or a positive test result between March 2020 and November 2021. They matched this group of COVID-19 patients with a larger cohort of people who hadn’t tested positive, then looked at the COVID-19 patients’ risks of developing further symptoms more than a month after they were diagnosed.

    The findings are striking: About one in five COVID-19 survivors between the ages of 18 and 64 developed at least one “incident condition” (or, prolonged symptoms) that could be connected to their coronavirus infection. For COVID-19 survivors over age 65, that risk is one in four.

    Among the patients who potentially developed Long COVID, common symptoms were blockages in the lungs and other respiratory issues. Seniors were also likely to develop neurological and mental health symptoms, and the CDC researchers warned that Long COVID in this older age group could be linked to an increased risk of strokes and neurocognitive conditions, such as Alzheimers.

    In their paper, the CDC authors noted that patients represented in this health records database may not represent the U.S. overall, and that the methods used to identify possible Long COVID symptoms might be “biased toward a population that is seeking care.” Similar caveats apply to the VA study.

    Still, both studies clearly show the risk of just “letting COVID-19 rip” through the U.S. population, even after widespread vaccination. Studies like these should be headlines in every news publication, warning people that COVID-19 is not as mild as many of our leaders would like us to believe.

    Also, for journalists covering the pandemic: I highly recommend listening to this interview with Long COVID journalist and advocate Fiona Lowenstein, which aired on the WNYC show On the Media this weekend. (And I’m not just saying that because they plugged my recent story on the RECOVER study!) The Long COVID source list that Fiona and I collaborated on also continues to be a great resource for reporters covering this topic.

    More Long COVID reporting

  • Research opportunity for Long COVID and ME/CFS

    Research opportunity for Long COVID and ME/CFS

    While the U.S. federal government has, so far, failed to produce meaningful research on Long COVID, other organizations are working to fill this gap. One such organization is Solve M.E., an advocacy and research initiative focused on myalgic encephalomyelitis (ME), Long COVID, and other related post-viral illnesses.

    A friend who works on Solve M.E.’s You + ME Registry has asked me to share this research opportunity, on behalf of her organization. This program is providing funding for scientists to organize smaller-scale studies on Long COVID and ME, potentially leading to more substantial grants for larger studies. Solve M.E. hopes to invite new researchers who haven’t previously focused on post-viral illnesses into this space.

    Here’s the full info:

    Solve M.E. is accepting applications to study ME/CFS and Long COVID through May 23, 2022.

    Through the Ramsay Program, Solve M.E. invests in research studies in ME/CFS or Long COVID with a particular emphasis on engaging young investigators and researchers new to the field. This year, we are accepting applications for projects that aim to explore the mechanisms at play in people who go on to develop Long COVID. Collaborative proposals (involving two or more research groups) are encouraged.

    Ramsay 2022 marks the sixth cycle of the program, and we are excited to continue offering our rich longitudinal data set in the You + ME Registry.

    Learn more about applications, project scope, and lab vs. data-based grants here. Please contact Kate Mudie, registry research manager, at research@solvecfs.org with questions.