COVID-19 Data Dispatch

Category: Long COVID

  • COVID source shout-out: Patient-Led Research Collaborative

    In this final newsletter, I wanted to highlight one of my favorite sources for new research on COVID-19 and Long COVID (and one that published a new paper recently): the Patient-Led Research Collaborative (PLRC). PLRC is an independent research group including people with Long COVID and related chronic diseases, such as ME/CFS and POTS, who also have scientific research experience.

    This organization has been a leader in Long COVID research since May 2020, when it published a study describing persistent symptoms among people who got COVID-19 earlier that spring. The group’s further papers have included comprehensive analyses of Long COVID symptoms and reviews of other research. In addition to running studies, the organization funds biomedical research, publishes patient-generated hypotheses for scientists, and advocates for better patient engagement in Long COVID research.

    PLRC has regularly pushed the Long COVID field forward, with papers addressing under-studied topics like reproductive health and mental health. Their latest paper similarly provides data about working with Long COVID, an issue that is under-studied yet frequently discussed in the Long COVID community. The paper summarizes results from a survey of about 500 people with Long COVID describing the condition’s impact on their work.

    From the survey results, the researchers found four primary themes: 1) people with Long COVID want to return to work, motivated by financial pressures and a sense of purpose for their jobs; 2) diverse, complex, and sometimes inconsistent Long COVID symptoms can interfere with work and other day-to-day tasks; 3) people face disbelief and stigma due to Long COVID; and 4) support from medical providers is important for returning to work. These findings align with stories I’ve heard from people with Long COVID whom I’ve interviewed for stories, as well as conversations I’ve read online.

    If you’re looking to keep up with impactful Long COVID research, PLRC—along with the organization’s collaborators and projects it has funded—is an important group to follow.

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  • Sources and updates, October 29

    • Healthcare worker burnout trend backed up by new data: The COVID-19 pandemic has exacerbated a growing burnout crisis among healthcare workers in the U.S., as many articles and scientific papers have explored in the last couple of years. Two studies from the past week add more data to back up the trend. CDC researchers shared the results of a survey of about 2,000 workers, finding that workers were more likely to report poor mental health and burnout in 2022 than in 2018, while harassment and a lack of support at work contributed to increased burnout. Another research group (at the University of North Carolina at Greensboro and Washington University in St. Louis) also surveyed healthcare workers and found that many experienced food insecurity and financial challenges; workers with worse employer benefits were more likely to increase these challenges.
    • Viral load not necessarily associated with symptoms: This paper is a rare, relatively recent update on how COVID-19 symptoms connect to viral load, or the amount of virus that a patient has in their respiratory tract. The higher a patient’s viral load, the more likely they are to infect others, making this an important metric for contagiousness. Researchers at Emory University studied viral loads in about 350 people diagnosed with Omicron variants between April 2022 and April 2023. Patients tended to have their highest viral loads around the fourth day of symptoms, a change from studies done on earlier variants (when viral loads tended to peak along with symptoms starting). As Mara Aspinall and Liz Ruark explain in their testing newsletter, these results have implications for rapid at-home tests, which are most accurate when viral loads are high: if you’re symptomatic but negative on a rapid test, keep testing for several days, and consider isolating anyway.
    • Updated vaccines are key for protection: Another recent paper, in The Lancet Respiratory Medicine, examines how last year’s bivalent COVID-19 vaccines worked against recent coronavirus variants using data from the Kaiser Permanente health system. The study included records from about 123,000 people who had received at least the original vaccine series, examining health system visits from August 2022 to April 2023. People who received an updated vaccine in fall 2022 were significantly less likely to have severe COVID-19, the researchers found. “By mid-April, 2023, individuals previously vaccinated only with wild-type vaccines had little protection against COVID-19,” the researchers wrote. This year’s updated vaccine may have a similar impact through spring 2024.
    • Gut fungi as a potential driver for Long COVID: Long COVID, like ME/CFS and other chronic conditions, may be associated with problems in patients’ gut microbiomes, i.e. the communities of microorganisms that live in our digestive systems. A new paper in Nature Immunology from researchers at Weill Cornell Medicine hones in on one fungal species that may be particularly good at causing problems. The species, Candida albicans, can grow in the intestines of severe COVID-19 and Long COVID patients, triggering to inflammation and other immune system issues. This paper describes results from patient samples as well as a mouse model mimicking how this fungal species grows in COVID-19 patients’ guts.
    • Another potential Long COVID biomarker: One more notable Long COVID paper from this week: researchers at the University of Alberta studied blood samples from people with the condition, and compared their results to people who had acute COVID-19 but didn’t go on to develop long-term symptoms. The scientists used machine learning to develop a computer model differentiating between blood composition of people who did and didn’t develop Long COVID. They identified taurine as one specific amino acid that might be particularly important, as levels of taurine were lower among patients with more Long COVID symptoms. The study could be used to inform diagnostic tests of Long COVID, as well as potential treatments to restore taurine.

  • Sources and updates, October 22

    • Serotonin as a potential Long COVID biomarker: The chemical messenger serotonin might play a role in causing Long COVID symptoms, according to a new paper published this week in Cell. Researchers at the University of Pennsylvania and colleagues studied blood samples of people with Long COVID and animal models of the condition. They found that people with Long COVID have reduced levels of serotonin throughout their bodies, and that these reductions are correlated with common Long COVID symptoms such as brain fog and autonomic dysfunction. The study also examines biological mechanisms that could play a role in causing reduced serotonin; it provides new information about how a coronavirus infection could trigger long-term symptoms, as well as potential biomarkers for clinical trials. For more context, see this coverage in STAT News.
    • Healthcare costs of Long COVID: Another Long COVID study from this week, posted as a preprint in The Lancet: researchers at University College London tracked about 282,000 people with Long COVID over the course of two years, compiling their healthcare costs from National Health System (NHS) data. The study included people diagnosed with Long COVID between January 2020 and January 2023, compared with people who did not have Long COVID but had similar demographic characteristics. Long COVID led to higher healthcare spending, the study found, costing about 3,400 British pounds per patient per year. The researchers also noted that, for people with Long COVID, cost increased progressively over time. These costs are far greater for people in the U.S. where most healthcare is privatized.
    • Hospital-acquired COVID-19 cases: And another British study: researchers at the U.K. Health Security Agency and London School of Hygiene & Tropical Medicine analyzed data from about 350 British hospitals to estimate the prevalence of hospital-acquired coronavirus infections, or people who got the virus while in the hospital for something else. The team found that hospital-acquired infections represented 95,000 to 167,000 cases between June 2020 and March 2021 (i.e. 1% to 2% of all hospital admissions during this period). The researchers also found that people who got COVID-19 at the hospital were more likely to transmit it to other patients, and that more crowded hospitals with fewer single rooms were more likely to have in-hospital transmission. This study demonstrates a need for better infection control measures in hospitals, such as masking, improved ventilation, etc.
    • Wastewater surveillance for climate-resilient pathogens: In a new article in Science, researchers at the Rockefeller Foundation and the Santa Fe Institute argue that wastewater surveillance should be expanded on a global scale with a interest in tracking pathogens that are resilient to climate change. Pathogens like cholera, Lyme disease, dengue virus, and Zika virus, which can spread more widely in a warming planet, are posing increased risks to global health, the authors explain. Wastewater surveillance—as a population-level, potentially-quick-responding monitoring tool—can help track these pathogens more quickly than traditional tracking methods that rely on medical facilities sharing individual health data. The authors also explain barriers to global wastewater surveillance such as the cost of these programs and their prevalence so far in higher-income countries, as opposed to in some countries where surveillance may be most needed. Significant investment is necessary to build a truly effective system, they argue.

  • COVID source shout-out: Diagnosing and managing ME/CFS

    As research on Long COVID progresses, many scientists and clinicians working on this disease are learning from other chronic conditions that share symptoms with—and are often co-diagnosed with—Long COVID. One of the most common is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition characterized by extreme fatigue that often gets worse after physical or mental exertion.

    Despite impacting millions of people prior to the pandemic, ME/CFS is not well studied; research into the condition is underfunded, and doctors typically don’t learn about it during their training. A new paper from the Rochester Mayo Clinic and ME Action, a ME/CFS advocacy group, may help change this, by offering guidelines for doctors who have patients with this condition.

    The paper describes common ME/CFS symptoms, provides guidance on diagnosing the condition, explains how ME/CFS may intersect with other chronic conditions, and shares symptom management techniques, such as pacing to avoid post-exertional malaise and monitoring symptoms over time. Mayo Clinic clinicians can read the paper for continuing medical education credit.

    In the week since it was published, the paper has seen wildly high engagement metrics as people with ME/CFS and Long COVID have shared it, study author Jaime Seltzer (from ME Action) wrote on Twitter. Seltzer encouraged people in these communities to share the paper with their clinicians, as a resource for doctors who weren’t previously familiar with ME/CFS.

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  • Sources and updates, October 15

    • Directory of COVID-19 advocacy groups: The COVID Advocacy Initiative, a group working to advocate for better COVID-19 safety measures and form connections among advocates, compiled this directory of advocacy groups across the U.S. and Canada. If you’re looking to get involved with organizing for improved public health, you can likely find a group near you on this list—or get inspired to start a new one!
    • HHS funds next-generation vaccine candidates: In an update for the Department of Health and Human Services (HHS)’s Project Next Gen, the agency announced funding for three next-gen vaccine candidates: two nasal vaccines developed by companies CastleVax and Codaenix, and one self-amplifying mRNA vaccine developed by Gritstone Bio. HHS also announced funding for companies that will support clinical trials of these vaccines, monoclonal antibody research, testing research, and other preparedness efforts. The awards add up to $500 million, out of $5 billion in total dedicated to Project Next Gen.
    • Wastewater surveillance of variants in South Africa: Speaking of improved testing, a new paper in Nature Communications this week reports on how wastewater surveillance may be used to monitor SARS-CoV-2 variants. Researchers in Johannesburg, South Africa (at the country’s national health agency and a local university) sampled sewage from several metro areas, then used sequencing to identify coronavirus variants. Sequencing data from the wastewater samples consistently matched samples from patients, the researchers found, and even identified new variants. The study adds to other evidence demonstrating wastewater’s value for tracking the coronavirus’ continued evolution.
    • Vascular function issues in Long COVID and ME/CFS: Another new paper that caught my attention this week: researchers at the University of the West of Scotland in Glasgow studied cardiovascular issues among people with Long COVID and ME/CFS. Upon testing patients in both groups (as well as controls, or people who don’t have either condition) to measure their blood flow, the researchers found that these patients have worse circulation. Such vascular dysfunction could contribute to cardiovascular and respiratory symptoms common in Long COVID and ME/CFS, and align with other research about microclots in Long COVID, the researchers wrote.
    • Monoclonal antibody infusions for Long COVID: One more notable Long COVID paper: a group of researchers in Florida, including well-known ME/CFS clinician Nancy Klimas, report that three people with Long COVID experienced remission from their symptoms following monoclonal antibody infusions. The patients received a treatment made by Regeneron, which is a cocktail of two monoclonal antibodies; it used to be a common treatment for acute COVID-19, but doesn’t work well against newer variants. While a small study (again, case study of three patients!), the paper suggests that monoclonal antibodies could be helpful for people whose Long COVID followed infection with an earlier, pre-Delta variant. A clinical trial of a similar treatment is currently progressing at te University of California San Francisco.

  • Sources and updates, October 8

    • Vaccination disparities in long-term care facilities: A new study in the CDC’s Morbidity and Mortality Weekly Report shares vaccination patterns from about 1,800 nursing homes, assisted living facilities, and other long-term care facilities across the U.S., focusing on the bivalent booster (or, last fall’s vaccine). The CDC researchers found significant disparities in these vaccinations: vaccine coverage was lowest among Black and Hispanic residents compared to other demographics, and was lowest in the South and Southeast compared to other regions. Future vaccination campaigns need to make it easy for these groups to get their shots, the authors suggest; but based on how the 2023 rollout has gone so far, this trend seems likely to continue.
    • Reasons for poor bivalent booster uptake: Speaking of last fall’s boosters, a study from researchers at the University of Arizona suggests reasons why people didn’t get the shots last year. Researchers surveyed about 2,200 Arizona residents who had received at least one COVID-19 vaccine dose. Among the survey respondents who didn’t get last year’s booster, the most common reason for not doing so was a belief that a prior infection made the shot unnecessary (40%), concerns about vaccine side effects (32%), believing the booster wouldn’t provide additional protection over prior shots (29%), and safety concerns (23%). As with the study above, this paper shows weaknesses in the U.S.’s recent vaccine promotion strategies.
    • At-home tests are useful but far from perfect: Researchers at Nagoya University and the University of Oxford used mathematical models to study how different safety measures impact chances of COVID-19 outbreaks. The researchers developed models based on contact tracing data reflecting how Omicron spreads through groups. Rapid, at-home, antigen tests are a useful but imperfect method for reducing outbreak risk, the study found, with daily testing reducing the risk of a school or workplace outbreak by 45% compared to a scenario in which new cases are identified by symptoms only. “In high-contact settings, or when a new variant emerges, mitigations other than antigen tests will be necessary,” one of the scientists said in a statement.
    • Long-term symptoms from non-COVID infections: The prevalence of Long COVID has led many scientists to develop new interest in chronic conditions that may arise after other common infections, such as the flu and other respiratory viruses. One recent study from Queen Mary University of London identifies a potential pattern, using data from COVIDENCE UK, a long-term study tracking about 20,000 people through monthly surveys. Researchers compared symptoms between people who had a COVID-19 diagnosis and those with other respiratory infections, looking at the month following infection. They found similar risks of health issues in the one-month timeframe for both groups, though specific symptoms (loss of taste and smell, dizziness) were more specific to Long COVID. Of course, some people in the “non-COVID” group could have had COVID-19 without a positive test; still, the data indicate more, longer-term research is needed.
    • Autoimmune disorders following COVID-19: In another Long COVID-related paper, researchers at Yonsei University and St. Vincent’s Hospital in South Korea found that patients had increased risks of autoimmune and autoinflammatory disorders following COVID-19 cases. The study used patient records from South Korea’s national public health system, comparing about 354,000 people who had COVID-19 diagnoses to 6.1 million controls. COVID-19 patients had a significant risk of new autoimmune issues within several months after infection; new diagnoses included alopecia (or hair loss), Crohn’s disease (inflammatory bowel issues), sarcoidosis (overactive immune system), and more. These conditions should be considered by doctors evaluating potential Long COVID patients, the researchers wrote in their paper.
    • New climate vulnerability index: This last item isn’t directly COVID-19 related, but may be useful in evaluating community risks for public health threats. The Environmental Defense Fund, Texas A&M University, and other partners have launched the U.S. Climate Vulnerability Index, a database providing Census tract-level information about how our changing climate will impact different communities. Communities are ranked from low to high climate vulnerability, with detailed data available on sociodemographic characteristics as well as potential extreme weather events and health trends.

  • COVID source shout-out: Moving closer to Long COVID biomarkers

    Scientists are moving closer to biomarkers, or clear biological indicators, of Long COVID. A new study—posted this week in Nature ahead of full publication—identifies clear differences between blood samples of people who have the condition and those who don’t.

    The study was a collaborative effort between researchers at Mount Sinai (David Putrino and his team) and Yale University (Akiko Iwasaki and her team). Both of these research groups have been leaders in studying Long COVID: Mount Sinai was one of the first health institutions to start caring for people with Long COVID back in spring 2020, while the Yale group has analyzed patients’ immune systems in ways that go far beyond typical medical testing.

    The differences identified by this study fall into “three big areas,” Putrino wrote in a Twitter thread describing the findings. These are hormonal differences (particularly low cortisol levels in the Long COVID group during morning hours), immune differences (particularly differences in T cell and B cells for people with Long COVID), and evidence of a coronavirus infection re-activating other viruses that might have already been present in people with Long COVID.

    While other research has pointed at these Long COVID markers before, the new study goes further in connecting a Long COVID diagnosis to specific medical tests. If backed up by further research, those tests could be used as biomarkers, informing clinical trials of Long COVID treatments. Notably, as Iwasaki pointed out in a statement, the tests done in this study would not be included in a patient’s “routine lab work,” signifying the higher level of inquiry needed to understand this condition.

    Long COVID is incredibly complex and may have different causes from one person to another. So, any biomarkers (from this study or another one) likely would not be universal points of success for all patients. This study also isn’t “proof that Long COVID is real,” as you might have seen some headlines suggest; we’ve had plenty of proof for years now, from prior research and patient experiences. Still, the study is a major step forward in identifying key tests that may be used for diagnosis and treatment.

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  • Sources and updates, September 10

    • Cost details about new treatment from Project Next Gen: The Department of Health and Human Services (HHS) has recently started to share more details about Project Next Gen, a federal initiative to support new vaccines and treatments as the coronavirus continues evolving. This week, HHS announced details about its agreement with Regeneron, a company working on a new monoclonal antibody with federal funding. If a new treatment arises from this research, Regeneron cannot sell it for a higher price in the U.S. than elsewhere in the world, HHS said. This is a relatively small step for treatment access, but still could set a precedent for other products that come out of Project Next Gen.
    • Viral persistence in Long COVID: A new paper from some top Long COVID researchers (including Amy Proal, Michael VanElzakker, and others) reviews evidence about viral reservoirs, or pockets of coronavirus continuing to replicate in people’s bodies. Past studies have found these viral reservoirs throughout the body; Proal and her colleagues explain how they may contribute to different Long COVID symptoms. The review paper also recommends priorities for further research on this topic and potential treatment options. “Many aspects of SARS-CoV-2 reservoir in Long COVID require further study,” Proal wrote in a Twitter thread summarizing the paper. “For example, we need to better understand factors that differentiate SARS-CoV-2 persistence in Long COVID from persistence in asymptomatic individuals.”
    • Genetic factors for COVID-19 risk: In another notable paper from this week, researchers from a global consortium published results about how genetic factors may contribute to COVID-19 risk. The team reviewed genomic data from about 220,000 people who had COVID-19 and three million who had not tested positive. They found 51 areas of the genome that were statistically correlated to a higher risk for infection with SARS-CoV-2 or more severe symptoms. These findings could lead to “identification of the mechanisms involved in the susceptibility and the severe course of the disease,” one of the study’s lead authors said in a press release.
    • Updated Medicaid unwinding data from KFF: The Kaiser Family Foundation has updated its Medicaid Enrollment and Unwinding Tracker, which shares data about people losing their Medicaid coverage thanks to the end of the federal health emergency. As of September 8, at least 5.9 million people across 48 states and Washington, D.C. have lost their coverage, KFF reports. Disenrollment varies widely by state, from 9% in Michigan to 72% in Texas. And the majority of people who lost their Medicaid coverage have done so due to procedural reasons, meaning an error of lost paperwork (rather than an actual change in eligibility, in many cases).

  • Sources and updates, September 3

    • CDC respiratory virus updates: The CDC has a new webpage dedicated to “updates on the respiratory illness season.” So far, it just includes summaries of the agency’s two reports on new variant BA.2.86. Going forward, the page will be updated weekly with further information on COVID-19, flu, RSV, and other viruses spreading this fall and winter.
    • Potential biomarker for Long COVID brain fog: A new paper, published this week in Nature by a coalition of researchers in the U.K., connects blood clot issues during acute COVID-19 to cognitive symptoms later on. The researchers found that some patients had low levels of two specific proteins connected to blood clots, based on blood samples taken early in their infections; the same patients were likely to experience brain fog and similar symptoms. If these results are replicated in other studies, the proteins could be used as biomarkers (i.e. medical indicators) of Long COVID symptoms, potentially a big step for research and treatments.
    • Long COVID research presented at Keystone Symposia event: Speaking of Long COVID research: scientists gathered to discuss this condition at a conference last week in New Mexico. The conference was hosted by Keystone Symposia, an organization that convenes meetings on important life sciences topics. Highlights from the event included a presentation showing changes to muscle tissue during post-exertional malaise, along with presentations from the Patient-Led Research Collaborative, the National Institutes of Health, Resia Pretorius from Stellenbosch University in South Africa, Akiko Iwasaki from Yale University, and more. I look forward to seeing papers expanding on the talks that occurred at this meeting.
    • COVID-19’s impact on Native Americans: Another notable paper from this week examined COVID-19’s disproportionate impacts on Native Americans in New Mexico. Researchers at the University of New Mexico Hospital analyzed patient outcomes in early pandemic waves, from spring 2020 through winter 2021. Compared to white and Hispanic patients, Native Americans were more likely to experience severe COVID-19 outcomes such as more time spent in the hospital and going on a ventilator. “Self-reported AI/AN race/ethnicity emerged as the highest risk factor for severe COVID-19,” the researchers reported, suggesting that this vulnerable group of people deserves additional safety resources.
    • COVID-19 burden for cancer patients: One more study to highlight: researchers at Massachusetts General Hospital examined COVID-19 mortality among cancer patients during the first two years of the pandemic, using data from the CDC. People with cancer were more likely to die of COVID-19 during the winter Omicron wave in 2021-2022, compared to the surge during the prior winter (with 18% higher deaths). Meanwhile, deaths among the general population went down from the first to the second winters. Like the study above, this paper suggests that greater protections are needed for vulnerable people during times of high COVID-19 spread. (For example: we could keep masks in healthcare settings!)

  • Sources and updates, August 27

    • Project Next Gen announces first grants: Project Next Gen, the federal government’s effort to support next-generation COVID-19 vaccines and treatments, announced its first round of scientific funding this week. The Department of Health and Human Services (HHS) has now allocated $1.4 billion of a total $5 billion in the program, with funding going to set up clinical trials for new vaccines and a new monoclonal antibody developed by Regeneron. HHS hasn’t actually selected vaccine candidates yet; that will come in a later announcement. Notably, as I reported on Twitter, HHS officials said during a press conference that they do not anticipate future Project Next Gen funding going towards Long COVID research.
    • Biobot Analytics expands to other respiratory viruses: Biobot Analytics, one of the leading COVID-19 wastewater surveillance companies, launched a new testing panel this week for a broader range of respiratory pathogens. The panel will allow health agencies to monitor their local sewersheds for COVID-19, flu, and RSV at the same time. Biobot is rolling this testing option out in time for this year’s respiratory virus season. While the company hasn’t announced this yet, I suspect Biobot will make some data from the respiratory virus testing available online, similar to its current COVID-19 and mpox dashboards.
    • KFF launches health misinformation tracker: The Kaiser Family Foundation has announced a new polling effort focused on health misinformation, and released the first round of data from this initiative. This release includes data about COVID-19 and vaccines, as well as other key areas of misinformation like reproductive health and firearms. According to KFF’s surveys, a majority of Americans have heard false claims about COVID-19, such as that the vaccines caused many sudden deaths in otherwise healthy people; smaller but still significant shares of people (around 20% to 30% depending on the statement) say these false claims are true.
    • Excess deaths in China after ending restrictions: Last winter, China abruptly ended its “zero COVID” policy (which had included strict quarantines, testing, and other measures), leading the coronavirus to spread widely—but with limited official data tracking its impacts. A new study from researchers at the Fred Hutchinson Cancer Research Center in Washington state examines excess deaths in China, or deaths above historical norms, following that policy change. About 1.87 million excess deaths occurred among Chinese adults over age 30 in just two months after the end of the zero COVID policy, the researchers estimated. These deaths mainly impacted older residents, many of whom weren’t vaccinated against newer variants.
    • Long COVID without a positive test: Another notable study from this week: researchers at Northwestern Medicine’s Long COVID clinic compared immune responses and symptoms among patients who did and did not have proof of their initial coronavirus infections. While this was a small study (including just 29 patients), the researchers found that the majority of those without proof of infection had COVID-related immune system signals similar to those patients who did have initial proof. The study offers further evidence to a trend that I’ve long heard in interviews with people with Long COVID: many patients weren’t able to get positive tests during their initial infections but still clearly have Long COVID, and they should not be excluded from research.
    • COVID-19 risk for essential workers: One more new study: researchers at the University of Gothenburg, in Sweden, used available occupational data to examine how people in specific jobs were at higher risk for COVID-19 cases. The study included 550,000 cases from October 2020 through December 2021. People working in public-facing jobs such as bus drivers, school staff, and nurses were at higher risk for getting COVID-19—and developing severe symptoms that required hospitalization—than those in less public-facing professions, the researchers found. Essential workers receive less attention now than they did early in the pandemic, but they still need protections to stay safe, the study suggests.