COVID-19 Data Dispatch

Category: Long COVID

  • The NIH says it “inappropriately” censored Long COVID patients on social media

    The NIH says it “inappropriately” censored Long COVID patients on social media

    This Tweet, from the NIH’s Community Engagement Alliance, sparked criticism on social media—some of which was hidden by the NIH account.

    By Miles W. Griffis

    The National Institute of Health (NIH) is under fire for censoring comments from patients on social media — the latest in a trend of heavy criticism from people living with Long COVID for failing to listen to patients and implement their input into its $1.15 billion study, RECOVER. Patient concerns have been echoed by both scientists and healthcare professionals who have criticized the study’s lack of results, glacial pace, potentially harmful clinical trials, and wasted funds.

    Last month, the NIH Community Engagement Alliance (NIH CEAL) tweeted, “Some people don’t feel sick when they have #COVID19 but develop symptoms of #LongCOVID later on. If this sounds familiar, speak with your health care provider to find a treatment plan that works for you.” The controversial tweet received over one hundred responses, many from people with Long COVID and other infection-associated illnesses.

    Patients claimed the post contained misinformation about Long COVID treatments, as this debilitating multi-systemic condition affecting millions does not have any approved treatments or cures. Other commenters shared their negative experiences with their primary health care providers, who they say didn’t offer them any treatment plans or worse, gaslit them and wrote their symptoms off completely. Over 35 of these comments were hidden by the NIH CEAL account.

    When asked about this comment hiding, the NIH told me that their social media policy was “overapplied” and that comments on the post were “inappropriately hidden.”

    Olenka Sayko, a person with Long COVID whose comment was hidden, said the censorship added to a feeling of hopelessness: “Are we ever going to find solutions for Long COVID if patient voices aren’t being listened to?” She said the censorship is especially concerning since it came from an NIH account dedicated to community engagement. “Who are they engaging with? They’re hiding comments.” Lauren, another person with Long COVID who also was censored, said that the NIH CEAL’s tweet rhetoric sweeps Long COVID and the people experiencing it “under the rug.”

    NIH CEAL clarified their tweet earlier this month. “While there’s no cure for Long COVID,” the new post read, “there may be treatment options that can address one’s symptoms & may help people living with Long COVID have better days.” 

    Although there are no treatments or cures for Long COVID, there are some treatments for conditions associated with or triggered by COVID-19 or Long COVID, including dysautonomia, cardiac disease, diabetes, and others. Many healthcare professionals recommend that patients who have prolonged symptoms following COVID-19 should be screened for life-threatening medical events that can be caused by COVID-19 or Long COVID, including pulmonary embolisms, deep vein thrombosis, or strokes. Long COVID can be fatal. A CDC analysis found that more than 3,500 people have died of the condition, though many experts believe this is a vast undercount. 

    And while there are many Long COVID clinics around the country that may give the illusion of successful treatment plans, patients often don’t have successful experiences. In an article I wrote for Popular Science, I found that some clinics recommend potentially harmful treatments like graded exercise therapy. Others rejected and gaslit patients. Some only offered generic informational handouts.

    During an August 31 NIH RECOVER press conference, the director of the National Institute of Neurological Disorders and Stroke (NINDS), Walter Koroshetz, responded to my question about what Long COVID treatment plans the NIH CEAL account was referring to. He said that the NIH does not make treatment recommendations, adding that the NIH CEAL tweet might have been a misunderstanding. When I asked why the agency was censoring tweets from Long COVID patients, Lawrence Tabek, the acting director of the NIH, said he couldn’t speak to my question and said he has “no idea how social media works”.

    I later followed up with the NIH over email about the censored comments. The agency wrote that “The National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD) co-manage the NIH Community Engagement Alliance (CEAL) social media accounts and follow the NHLBI Privacy Statement and Comment Policy.” The policy states commenters should post “on topic,” “be respectful,” and “truthful.” It also prohibits spam and product endorsements.

    The NIH wrote over email that, in the case of the censored comments on the July 25th tweet, their policy was “overapplied” and that comments on the post were “inappropriately hidden.” They added that upon further review, comments on the post are now “public,” or unhidden. Some comments, however, were still hidden at the time of publication.

    But Eric Goldman, the co-director of the High Tech Law Institute at Santa Clara University School of Law, said this very policy may not be even constitutional. “Assuming that the NIH is a state actor, then anytime they take an action on social media to control the conversation, their decisions are governed by the First Amendment, which protects our right to free speech,” he said.

    Instances like the NIH censoring comments on social media are complicated, but upcoming Supreme Court cases may provide some clarity, Goldman said. 

    Two cases, Lindke v. Freed (from the 6th Circuit Court of Appeals) and Garnier v. O’Connor-Ratcliff (from the 9th Circuit Court of Appeals) may be heard by the Supreme Court this fall. Both involved government officials blocking members of the public on social media, but each led to a different result. The 9th Circuit found impermissible censorship, while the 6th Circuit did not. Due to the complexity of internet law, it’s unlikely Americans will feel good about the rule of law that will be articulated by the Supreme Court,” he said.

    Still, if the NIH is “selectively listening to people online, then that’s hugely problematic,” Goldman said. In particular, the NIH could be denying the patients’ ability to learn and talk with each other. “Selective intervention by the NIH takes away that potential,” he said.

    Advocates say the censorship has further eroded trust between the Long COVID community and the NIH. “It’s not just a one off,” Billy Hanlon, the director of advocacy and outreach for the Minnesota ME/CFS Alliance said, “It’s a pattern.” The agency fails to value the lived experience of patients with infection-associated illnesses, even though these illnesses have a quality of life worse than some advanced-stage cancers, Hanlon said.

    “I can see why people were furious,” said JD Davids about the censorship “It’s an insult upon injury.” As the co-director of the advocacy group Long COVID Justice, Davids said that if the NIH wants to truly work and engage with patients, they need to work closely with people living with Long COVID and certainly not silence their lived experience.

    “We need a government-wide response to Long COVID,” he said, describing the necessity for patients and complex chronic disease experts to be consulted on major decisions at the NIH and beyond. Tweeting that there is a treatment plan for a condition with no treatments or cures, Davids said, creates an illusion of a broader treatment plan for Long COVID, when there isn’t one. It confuses the public and creates doubt about people living with Long COVID. “It has huge unintended consequences,” Davids said.

    Editor’s note: JD Davids has donated to the COVID-19 Data Dispatch. This had no influence on the article, as the author talked to him before the CDD decided to publish it.

    Miles W. Griffis is an independent journalist based in Los Angeles, California. He’s written for High Country News, National Geographic, The New York Times, and many others.

    If you are able to contribute a tip for this reporting, please Venmo @miles-griffis.

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  • Sources and updates, August 13

    • CDC identifies continued Long COVID risk: A new study from the CDC this week, published in the agency’s Morbidity and Mortality Weekly Report, summarizes data from the CDC and Census Household Pulse Survey examining Long COVID prevalence in the U.S. According to the survey, Long COVID prevalence declined slightly from summer 2022 to early 2023, but has remained consistent this year at about 6% of all U.S. adults. The survey also found that about one in four adults with Long COVID consistently report “significant activity limitations” from the condition, meaning they are less able to work and participate in other aspects of daily life. Treating Long COVID and supporting long-haulers should be priorities for the healthcare system, the study’s authors write.
    • Mitochondrial dysfunction in Long COVID: Another new paper, published this week in Science Translational Medicine, demonstrates the role that mitochondria may play in Long COVID. Researchers at the Children’s Hospital of Philadelphia studied tissue samples from autopsies and animals infected with COVID-19, finding that the coronavirus led to malfunctioning mitochondria in several key organ systems. These malfunctions may contribute to Long COVID symptoms such as fatigue and brain fog, and could be a target for future treatments. Elizabeth Cooney at STAT News covered the study in more detail.
    • Benefits of vaccination during pregnancy: One more notable new study: researchers at the National Institute of Allergy and Infectious Diseases (or NIAID, part of the NIH) tracked the impacts of COVID-19 vaccination for pregnant people. The study included 240 vaccinated participants who contributed blood samples, between July 2021 through January 2022. Both the parents and their newborns developed antibodies against the coronvirus following infection, the researchers found. While previous papers have demonstrated the value of vaccination for new parents, this study is one of the largest so far to show that protection is conferred to newborns.
    • Wastewater surveillance webinar from the People’s CDC: If you’ve been following wastewater data to keep up with COVID-19 trends but have had questions about how this form of surveillance works, you may find it helpful to watch this recorded webinar from health advocacy organization the People’s CDC. In the video, Marc Johnson, a professor at the University of Missouri and director of the state’s wastewater surveillance program, talks through how wastewater is tested for the coronavirus (and variants), how to interpret wastewater data, cryptic lineages, and more. Understanding this novel data source is increasingly important now, as traditional healthcare data on COVID-19 are less reliable.
    • New federal heat surveillance dashboard: Finally, in other public health news, the federal government has launched a new dashboard to track heat-related health issues. The dashboard compiles data from Emergency Medical Services reports across the country, representing responses to 911 calls for any health reason related to heat stress. (You can see the list of potential health events in the dashboard’s documentation.) Currently, many southern states are experiencing high levels of heat-related health problems, according to the dashboard. Many of the same states are also experiencing COVID-19 upticks right now—trends that may be related, as more people gather inside during hot weather.

  • NIH RECOVER’s Long COVID trials unlikely to lead to successful treatments, experts say

    NIH RECOVER’s Long COVID trials unlikely to lead to successful treatments, experts say

    The NIH has primarily spent its funds for Long COVID research on observational studies rather than clinical trials, according to new data shared with my article this week.

    Last week, the National Institutes of Health and Duke University announced five Long COVID clinical trials as part of the NIH’s RECOVER initiative. This might sound like an exciting milestone for the millions of people dealing with long-term symptoms—but in fact, experts and long-haulers are disappointed by the trials, I learned when covering this news for MuckRock and STAT News.

    RECOVER is the largest Long COVID research effort in the world; the NIH received $1.15 billion for it, provided by Congress in late 2020. It’s also been plagued by delays and criticisms, as I’ve reported before. As we approach the three-year mark of the initial funding, long-haulers are becoming increasingly frustrated with RECOVER’s lack of results.

    My latest story for MuckRock and STAT focuses on the clinical trials, but connects to larger issues with RECOVER and with the federal government’s response to Long COVID in general. Read it on STAT’s site here or on MuckRock’s here.

    A few key points from the story:

    • RECOVER is only testing a handful of drugs for Long COVID, instead focusing on behavioral interventions that outside experts say are unlikely to address underlying causes of symptoms. There are several lists of potential drugs that should be (and aren’t) prioritized, including one compiled by members of an advisory committee to RECOVER.
    • Looking more closely at the drug trials, experts shared concerns about the study designs, suggesting that RECOVER’s choices of controls, outcomes measures, and other aspects of the studies may lead to inaccurate results. For example, dysautonomia expert Lauren Stiles told me that the trial testing drugs for autonomic symptoms may fail to accurately capture whether those drugs help with Long COVID.
    • At this point, the NIH has no plans for further Long COVID trials or other research going beyond RECOVER. The initiative has almost fully allocated all of its $1.15 billion in funding, and NIH officials haven’t shared details about how they will continue Long COVID research after this study concludes (though they acknowledge more research will be necessary).

    RECOVER failed to put much funding in clinical trials to begin with, focusing instead on observational studies aiming to track Long COVID symptoms over time. While such studies could be valuable for better understanding the condition, RECOVER has largely replicated other research and hasn’t contributed useful, new information to the field, experts have told me. In fact, over 40,000 people have petitioned the NIH to retract RECOVER’s first paper based on its observational research.

    Many of RECOVER’s errors, such as choosing the wrong treatments to prioritize and focusing on observational studies over clinical trials, could’ve been avoided if the initiative had listened more to long-haulers and learned from experts in other post-infectious diseases. Long-haulers have done plenty of research themselves in the last three years, ranging from informal tests of different treatments to formal studies conducted by the Patient-Led Research Collaborative; yet these studies have not informed RECOVER.

    Plus, scientists with expertise in ME/CFS, dysautonomia, HIV/AIDS, and many other similar diseases could share lessons with RECOVER—but they aren’t leading the initiative. I thought Todd Davenport, a rehabilitation expert at University of the Pacific who’s studied ME/CFS, put it well when he said that RECOVER scientists “have parachuted into post-infectious illness and are now trying these things for the first time, to them. But it’s clear they haven’t done the reading.”

    I hope to continue covering RECOVER and other issues with Long COVID research in the U.S. If you have any tips or stories to share with me on this topic, please reach out.

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  • COVID source shout-out: Ed Yong’s Long COVID coverage

    Ed Yong, a widely-admired science journalist, recently announced that he’s leaving his position at The Atlantic after eight years at the publication. He also published the latest in a series of articles explaining the challenges of Long COVID, a subject that he’s become well-known for covering.

    I have been a big fan of Yong’s for a long time; reading his work when I was in college was one of my inspirations for getting into science writing. But his COVID-19 coverage has been especially informative and inspirational. In particular, he was one of the first journalists to write about Long COVID back in 2020 and has remained a leading writer on the topic since then. His work has brought wider recognition to the long-haulers seeking research and support.

    His latest story, like his others, is a master class in weaving together patient experiences and scientific insights. It covers fatigue and post-exertional malaise, two of the most common—and most debilitating—symptoms of Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). As people with those conditions have shared the article on social media, I’ve seen many say that it offers poignant descriptions of these symptoms and insightful understanding of their experiences.

    If you haven’t read this article yet, please check it out. (Feel free to email me if you have a hard time accessing it through the paywall.) And I think I can speak for many readers here when I express gratitude for Ed Yong’s COVID-19 work over the last three years, and excitement for what he’ll do next!  

    more source spotlights

  • Sources and updates, July 30

    • New papers show wastewater’s predictive value: This week, I noted three recently-published papers that all demonstrate wastewater surveillance’s value for flagging changes in COVID-19 trends before other metrics, such as hospitalizations. One paper, in Nature, found that wastewater trends preempted hospitalization trends by one to four weeks, in 150 U.S. counties. Another paper, in JAMA Network Open, found that wastewater trends tracked with case trends in 268 U.S. counties from January through September 2022; however, the correlation became weaker with reduced clinical testing over time. And a third paper, in PNAS, shares an algorithm that can flag community-level COVID-19 surges before they show up in other metrics, using data from North Carolina’s wastewater surveillance.
    • Long COVID’s impact on employment: The Urban Institute, a think tank focused on economic and social policy research, published a report exploring employment challenges and related hardships among people with Long COVID. The researchers (a group that included Lisa McCorkell from the Patient-Led Research Collaborative) analyzed results from Long COVID questions included in an Urban Institute survey, conducted among more than 7,500 American adults across the country in December 2022. Among the findings: 10% of adults with Long COVID stopped working for a period due to their symptoms while another 5% reduced their work hours; 24% limited activities outside of work; 42% reported food insecurity in the last year; 20% reported difficulty paying their rent or mortgage.
    • Characterizing potential Long COVID phenotypes: Another Long COVID study from this week, published in The Lancet: a research consortium including several medical centers across Europe tracked patients over time, seeking to better understand different subtypes of the condition. The study included about 1,000 people with at least one Long COVID symptom, tracked over one year from their initial COVID-19 diagnosis. Researchers found four potential subtypes: one similar to ME/CFS (including fatigue and cognitive symptoms), one with respiratory symptoms, one with chronic pain, and one with changes to taste and smell. The researchers also noted some patient characteristics and aspects of acute illness that may contribute to increased risk of different subtypes.
    • Outdoor transmission at a night market: One more notable new paper: researchers at local health agencies in China’s Zhejiang province reported on coronavirus transmission at an outdoor night market, in Frontiers in Public Health. In one day at the night market, three infected visitors led to 131 secondary cases, the researchers found. Based on samples from both people at the market and surfaces, the researchers estimated that particles of an Omicron BA.5 strain could linger for over an hour and still be contagious. The study suggests that, even in outdoor settings, transmission is still possible when other precautions aren’t taken.
    • Acute Hospital at Home data: The Data Liberation Project, which collects and shares data from public records requests, recently published a dataset from a COVID-era program by the Centers for Medicare and Medicaid Services (CMS) which allowed hospitals to treat patients in their homes. Early this year, the project filed a FOIA request for data indicating which hospitals applied to participate in the program and how their patients fared. CMS completed the request in June, and DLP is working to process and understand the resulting data. If you’re interested in using the data, you can check out the documentation and sign up for updates.
    • Diagnosis challenges with alpha-gal syndrome: Finally, a bit of non-COVID public health news: the CDC recently released some data showing challenges with diagnosing alpha-gal syndrome—a disease transmitted by tick bites that leads to new allergies—despite recent increases in its spread. The CDC estimates that up to 450,000 people in the U.S. may have been impacted by this disease, potentially developing new allergies to meat and other animal products. Yet in one CDC study, the majority of health providers surveyed were not confident in their ability to diagnose the syndrome. This trend reflects similar challenges for other chronic diseases that might be new or unfamiliar to providers, such as Long COVID.

  • Sources and updates, July 23

    • Grants to help with global pandemic preparedness: This week, the World Bank’s Pandemic Fund announced the recipients of its first round of grants. The fund is a finance initiative to “strengthen pandemic prevention, preparedness, and response capacities,” particularly for low- and middle-income countries. Its first round of grants will go to 37 countries across 6 global regions, distributing $338 million in funding. The full list of awards is available on the World Bank’s website.
    • Genetic marker of asymptomatic COVID-19: A new paper published in Nature this week reports on a common genetic marker that may lead people to have symptom-free COVID-19 cases. The researchers (a team from the University of California San Francisco and other institutions) searched for genetic patterns among 30,000 people who shared their COVID-19 symptom information through a smartphone app. They found a correlation between asymptomatic infection and a specific version of a gene related to T cells. As Eric Topol notes in his newsletter, this study follows two others that examined genetic markers of Long COVID.
    • Quantifying cognitive symptoms of Long COVID: Speaking of Long COVID: researchers at Kings College London studied the condition’s cognitive symptoms (also called brain fog) by measuring patients’ performance in different mental tasks. The study included over 3,000 participants, more than half of whom completed two rounds of testing over two years. Overall, the researchers found that cognitive symptoms persisted for nearly two years after patients’ initial infections, and most severe for patients with the longest-lasting Long COVID impacts. For these patients, “the effect of COVID-19 on test accuracy was comparable in size to the effect of a 10-year increase in age,” per a press release by Kings College London.
    • Long COVID is common in children: Another Long COVID study published this week: researchers at a hospital in Toronto compiled a review paper examining the condition’s prevalence among children. Their review included 30 studies including about 15,000 total pediatric patients. Across all the studies, researchers reported that about 16% of children experienced at least one Long COVID symptom three or more months after their COVID-19 infections. However, compiling these data was a challenging task because different studies used different definitions of Long COVID, different methods of following up with patients over time, and other inconsistencies, the authors wrote.
    • Dogs detecting COVID-19 through scent: One more paper that stuck out to me this week: a pair of researchers (one at the University of California, Santa Barbara and one at a biotech company focused on sniffing for COVID-19) examined how well dogs can detect the coronavirus. This was also a review paper, including 29 studies and 31,000 COVID-19 test samples. Overall, the dogs performed with similar accuracy to PCR tests, researchers found. “We believe that scent dogs deserve their place as a serious diagnostic methodology that could be particularly useful during pandemics,” one of the authors said in a statement.
    • Monoclonal antibody to protect babies from RSV: Finally, a bit of good news for combatting another common respiratory virus: the FDA has approved a new monoclonal antibody treatment to protect infants and young children against RSV. The therapy is likely to be recommended by the CDC and manufactured in time for respiratory virus season this fall. In clinical trials, it lowered the risk of an RSV infection requiring medical care by about 76%—which is a big deal for a disease that leads to more babies in hospitals than any other in the U.S., reports Helen Branswell at STAT.

  • Sources and updates, June 11

    • Quantifying Long COVID’s impact on day-to-day life: A new study published this week in the BMJ is one of the first I’ve seen to focus not on Long COVID’s symptoms, but on how it impacts quality of life for patients. Researchers at University College London assessed life impacts for about 3,700 Long COVID patients using surveys in an online health platform. The surveys found that “Long COVID can leave people with worse fatigue and quality of life than some cancers, yet the support and understanding is not at the same level,” study coauthor Dr. William Henley said in a statement about the research. This study confirms what I’ve heard from many long-haulers in interviews over the last couple of years.
    • Long COVID and ME/CFS similarities: Another notable Long COVID paper: two leading experts on chronic illness, Dr. Anthony Komaroff at Harvard Medical School and W. Ian Lipkin at Columbia University, wrote a detailed review identifying commonalities between Long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating condition with symptoms similar to Long COVID that often occurs after infection. ME/CFS has long been under-recognized and understudied, but there are still lessons from this condition that can inform Long COVID research and lead to answers for both diseases. The review paper points to directions for future study.
    • Metformin for Long COVID: One more Long COVID paper: a study published this week in The Lancet shares results from a Long COVID clinical trial at the University of Minnesota, which found that the diabetes drug metformin reduces the risk of developing long-term symptoms when patients take it early in the course of a COVID-19 case. I shared this study when it was first posted as a preprint in March, and also spoke to one of its authors for my STAT/MuckRock story about the RECOVER initiative. I’m glad to see that the major findings haven’t changed in this peer-reviewed version; metformin appears to be a promising treatment option, though more study is needed.
    • At-home test receives FDA approval: This week, the FDA approved an at-home, rapid COVID-19 test made by the company Cue Health. It’s the first at-home test to receive full approval, as these tests have previously received Emergency Use Authorization under public health emergency rules. With the federal emergency over, the FDA is encouraging test companies to apply for full approval so that at-home COVID-19 tests can be distributed (and marketed) like other commonly-available health products. The emerency authorizations still apply for tests that don’t have full approval yet, though.
    • COVID-19 Medicaid rules led to more coverage for children: For the first three years of the pandemic, federal rules tied to the public health emergency forbid states from kicking their residents off of Medicaid. The policy led to a significant increase in Americans with health insurance—and that includes children, according to a new paper published this week in Health Affairs. For states that changed their Medicaid rules for children due to the pandemic policy, coverage increased by about 5% from 2019 to 2021, representing thousands of kids who were able to get healthcare more easily. Of course, these kids and their family members are now likely to lose their health insurance, as the federal policy ended in April.
    • Animal behaviors changed during 2020 lockdowns: Remember when, in the early days of the pandemic, big cities with more stringent lockdowns saw more wild animals than normal? A new paper from a large coalition of scientists, published this week in Science, finds that this pattern wasn’t just anecdotal: animal behavior really did change. The scientists compiled a large dataset of animals tracked with GPS, representing 2,300 individuals from 43 different mammal species, and compared their behaviors in spring 2020 to the same period in 2019. Animals living in areas under strict lockdowns were more likely to travel outside their normal ranges, the researchers found.

  • COVID source shout-out: Body Politic

    Body Politic, a health justice organization that has led Long COVID organizing over the last three years, shut down its Slack support group this week. The group has been a valuable place for long-haulers to connect and find resources; it’s also helped launch other important projects, such as the Patient-Led Research Collaborative and the Long COVID Survival Guide.

    The organization isn’t ending its support of long-haulers, though: it’s partnered with New Health, a mobile app developed to continue community Long COVID support. “New Health will be hiring Body Politic moderators and board members as their first paid staff, and members of our community are currently testing their app,” Body Politic leaders wrote in an April blog post describing the transition.

    I’ve written previously about Body Politic’s fundraising efforts as the group sought to transition form a grassroots, all-volunteer organization to a format that was more sustainable, and I’m glad to see that the group’s leaders have found this solution. But it’s a bit sad to see the original Slack group close—the end of an era.

    Thank you to all the volunteers who made the Body Politic group possible, from a journalist who has relied on many of its members and resources in my reporting on Long COVID!

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  • What the new RECOVER study does—and doesn’t—tell us about Long COVID

    What the new RECOVER study does—and doesn’t—tell us about Long COVID

    The new RECOVER paper identifies 12 major Long COVID symptoms, but this is far from an exhaustive list defining the condition.

    RECOVER, the U.S.’s largest initiative to understand Long COVID, published a major scientific study this week in JAMA. The paper goes over key Long COVID symptoms and other findings from nearly 10,000 adults who have joined the project’s research cohort. Its authors propose a new, more specific definition for Long COVID, which will be used in future studies from this project.

    This is a big milestone for RECOVER; it’s the first paper to actually share data from the study’s patient cohort, rather than from electronic health records. While the paper doesn’t provide any truly novel, previously unreported information about Long COVID, it confirms findings from smaller studies and validates patient experiences. It’ll certainly be valuable for thousands of scientists around the country struggling to understand this debilitating condition, though patients have expressed some concerns about the paper’s central framework.

    This study is also a rather late milestone, considering that the National Institutes of Health received $1 billion in funding from Congress for this initiative in December 2020 (two and a half years ago), and started enrolling patients in fall 2021. For more details on RECOVER’s delays—and many criticisms it’s faced from patients and experts—please check out this investigation by me and Rachel Cohrs, at STAT News and MuckRock.

    Here are a few key things you should know about the paper, and that you should watch out for while reading other articles about it:

    • The authors’ main goal was to determine which symptoms can specifically be used to diagnose long-term symptoms following a coronavirus infection. Using survey data from RECOVER’s participants, the researchers developed a framework that sorts patients into three categories: definitely having symptoms due to a past coronavirus infection (or “infected”), not having symptoms due to a past infection (“uninfected”), and possibly having symptoms due to a past infection (“unspecified”). This framework prioritizes symptoms unique to Long COVID, such as the loss of smell or taste, over those symptoms that are actually more debilitating for patients, such as chest pain or chronic fatigue. Also, as patient-expert Lisa McCorkell pointed out on Twitter, the unspecified category includes people with Long COVID.
    • The paper highlights 12 Long COVID-specific symptoms; there are a lot more. I’ve seen some articles covering this study frame it as, “these are the 12 definitive symptoms of Long COVID.” That’s a misrepresentation of the results. In fact, the authors selected 12 common symptoms that are helpful for their framework (i.e. determining who had a coronavirus infection); we know from other research that Long COVID can include up to 200 different symptoms. RECOVER leader Leora Horwitz even acknowledged in a Twitter thread describing the paper that “these are not the ONLY symptoms that people have, nor are they necessarily the most important to patients, the most common, the most severe or most burdensome.”
    • Long COVID is a spectrum, with different clusters of symptoms. This paper adds more evidence to support a hypothesis I’ve heard from many experts, that Long COVID is not one condition but a variety of overlapping conditions all caused by SARS-CoV-2. Different symptoms might be caused by different biological processes, and different patient groups could require different treatments. RECOVER has identified potential patient groups, which the researchers will study further (including through clinical trials, projected to start this summer).
    • Long COVID has a wide variety of impacts on day-to-day life, but the most severe patients might not have the best proof. Using this paper’s framework, long-haulers can give themselves a “Long COVID score” reflecting how likely they are to have symptoms caused by a past coronavirus infection. But, as patient-expert Chris Maddison explained, a higher score doesn’t necessarily mean Long COVID has more drastically impacted the patient’s day-to-day life. “I would prefer to flip this, i.e., a def. that centers folks who are suffering regardless of whether we can accurately predict prior infection,” he wrote.
    • Infection post-vaccination or with Omicron can lead to lower—but still significant—Long COVID risk, compared to earlier in the pandemic. Since RECOVER started recruiting in fall 2021, the study includes some people who were first infected during the first Omicron wave, then developed Long COVID symptoms afterward. About 10% of the patients infected during Omicron later developed symptoms, which pretty close to the study’s overall estimate of Long COVID prevalence (also about 10%). Vaccination or infection with an Omicron variant may make you less likely to get Long COVID, this study suggests, but the risk is still very present.
    • Repeat infections may increase Long COVID risk. RECOVER was able to follow 2,150 people who got infected during the Omicron wave, including 81 who had multiple infections. Of those with multiple infections, 16 people—or one in five—had Long COVID symptoms within six months. That’s double the prevalence rate of those who just had one infection in the same timeframe (10%). While these are small numbers, the finding is certainly worth further study; see this thread from patient-expert Hannah Davis for more details.
    • This is not a prevalence paper, and it does not provide a clinical definition of Long COVID. Some media coverage might suggest that this paper has “defined Long COVID,” which is a misrepresentation of the study. While the authors do propose a new framework for evaluating potential Long COVID patients, they make it clear that a lot more research and iteration will be needed before any RECOVER findings should be used in the doctor’s office. The paper also doesn’t provide a definitive answer on how many people get Long COVID, since it includes a relatively small number of people who were uninfected when they joined the study. Quoting Lisa McCorkell again: “It is very clear throughout the paper that in order for this to be actionable at all, iterative refinement is needed.”
    • This won’t be the last paper sharing findings from the RECOVER cohort. This study presented data from patients’ symptom surveys, which is just one small part of the RECOVER cohort’s activities. The enrolled patients have also undergone extensive medical testing and symptom tracking over time, which will be the subject of future studies—and will be used to refine RECOVER’s Long COVID framework. Clinical trials will (eventually) provide more data as well.

    To my fellow journalists covering this study: I highly encourage you to present this paper as a small part of a complicated, iterative research process, rather than a definitive answer to long-standing questions about Long COVID. I also encourage you to talk to patient-experts and ask for their criticisms of the study (like those I’ve cited here), rather than just letting the RECOVER leadership go unchallenged.

    More Long COVID reporting

  • Sources and updates, May 14

    • CDC updates ventilation guidance: On Friday, the CDC made its first-ever official air quality recommendation for all indoor spaces, in an update to its overall ventilation guidance. The agency now says all buildings should strive for five air changes per hour (ACH) at a minimum; in other words, clean air should circulate through the space every 12 minutes or more. This update is a victory for many clean air advocates who’ve pushed for better guidelines during the pandemic as a way to reduce the risk of COVID-19 and other respiratory pathogens. As expert and advocate Devabhaktuni Srikrishna said to me on Twitter: “This is exactly the clarity we were pushing CDC for for since last year… Now the question becomes, how does everyone do it in their home, school, and office? How much does it cost? Where do you get it?” 
    • Millions Missing in Washington, D.C.: On Friday, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID patient advocates held a demonstration at the National Mall in Washington, D.C. to show U.S. leaders how chronic disease has pulled millions of Americans out of public life. The demonstration, organized by ME Action and Body Politic, included an installation of 300 cots with hand-made pillowcases created by patients across the country. Each cot is intended to represent people who can no longer work or do other day-to-day activities that were routine before they got sick with Long COVID or a similar chronic illness. You can learn more by watching ME Action’s press conference from the demonstration.
    • Post-PHE prices for COVID-19 testing: Researchers at the Kaiser Family Foundation put together a new report describing how much Americans will likely pay for PCR and at-home tests now that the federal government no longer supports blanket insurance coverage. At-home test prices range from $6 to $25 per test, depending on the brand and number of tests purchased at once, the KFF analysis found based on a variety of data sources. PCR tests and others performed in healthcare settings range from $25 to $150 per test, with medians around $50. Tests including COVID-19 and other pathogens are the priciest.
    • Sleep apnea and Long COVID risk: A new paper, published this week in the journal SLEEP, finds that people with sleep apnea have a higher risk of developing Long COVID compared to those who don’t have this condition. Researchers at New York University (and other institutions) compared Long COVID symptoms among adults and children with and without sleep apnea through multiple electronic health record databases, finding people with sleep apnea had up to a 75% higher risk of long-term COVID-19 symptoms. This study was supported by the National Institutes of Health’s RECOVER initiative. Like other papers to come out of RECOVER (including another recent study looking at comorbidities), it’s utilized health records rather than the actual cohort of patients recruited into the NIH’s research program.
    • Diagnosing COVID-19 through breath: Another notable recent paper, published in the Journal of Breath Research in April: researchers at the University of Colorado Boulder and the National Institute of Standards and Technology have found they can identify whether a patient has COVID-19 by testing their breath. The technique involves using sensitive lasers and artificial intelligence to differentiate between chemicals in a patient’s breath; it’s similar to a breathalyzer for alcohol testing, though more complicated. In addition to COVID-19, breath testing might help identify other diseases.

    All featured sources