COVID-19 Data Dispatch

Category: Source spotlight

  • 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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  • COVID source callout: Lack of transparency from CDC committee

    Last week, I shared an update about the Healthcare Infection Control Practices Advisory Committee (HICPAC), a group of advisors to the CDC that has been working on updated guidelines for limiting infectious disease spread in healthcare settings. The committee has faced criticism for failing to incorporate lessons from COVID-19 into its guidance, as well as for a lack of transparency in its operations.

    The transparency issues continued this week, according to a press release by National Nurses United (NNU), a nurses union that’s been at the forefront of advocacy for better infection control guidelines. HICPAC only released a draft of its updated guidance on November 2, the day before it voted on the document. And it’s only giving the American public five days to review the document and provide feedback through public comments.

    “HICPAC’s draft is permissive and weak and seeks not just to maintain existing practice — which has been shown to be inadequately protective — but even rolls back the use of some important measures, such as airborne infection isolation rooms,” said NNU president Zenei Triunfo-Cortez in a statement.

    Despite calls to delay a vote on this document until hearing from healthcare workers and public health experts, HICPAC voted unanimously to finalize the guidance draft during its meeting this week. The vote indicates a lack of public transparency and a lack of consideration for relevant health expertise—which is troubling considering how influential this guidance is for setting standards in healthcare centers across the country.

    For more details about HICPAC and instructions on making public comments, see this CDC webpage.

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  • COVID source shout-out: Organizing for safety in healthcare settings

    A couple of months ago, I wrote about the Healthcare Infection Control Practices Advisory Committee (HICPAC), a group of experts that’s been working on updating CDC guidance for infectious disease safety measures in healthcare settings. The committee’s work has come under scrutiny for failing to actually improve safety with lessons learned from COVID-19.

    As outside health experts and advocates push HICPAC to consider improving mask standards, ventilation, and related guidance in healthcare settings, one group has led the advocacy effort: National Nurses United (NNU). This group is the largest nurses union in the U.S., with nearly 225,000 members and a lot of professional experience supporting better healthcare safety.

    NNU’s organizing efforts around the HICPAC guidance have included a number of letters and petitions to the CDC, organizing speakers at the public comment sections of HICPAC meetings, and pushing for greater transparency around how the committee makes decisions. The nurses’ organization recently released documents summarizing meetings of HICPAC committee members working on the new infection control guidance, which it received through public records requests. The documents show how this group “has prioritized employer costs and profits over robust protections for health care workers and patients,” NNU says.

    I’m writing about NNU’s efforts again now because HICPAC has another public meeting coming up this week, on November 2 and 3. If you’re interested in advocating for the committee to prioritize safety for workers and patients—not costs and profits—you can register to make a comment at the meeting. You can also sign onto a NNU petition asking the CDC to release the draft of HICPAC’s updated safety guidance.

    For more context about this issue, see the previous CDD post and this recent episode of the Death Panel podcast.

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  • COVID source shout-out: Biobot’s dashboard is still sharing COVID-19 data

    Two weeks ago I wrote an article explaining that the CDC has a new wastewater contract, essentially transferring responsibility for COVID-19 testing at hundreds of wastewater treatment plants across the country from Biobot Analytics to a company called Verily, which is affiliated with Google. In the time since that post, I have seen some other articles and social media posts alleging that, thanks to the contract change, Biobot will no longer be posting any COVID-19 data on their dashboard. This is inaccurate! 

    It is true that Biobot no longer has access to data from about 400 sites that were part of the CDC contract. But Biobot still has its own testing network separate from the CDC’s—which actually predated its contract with the agency—and which includes hundreds of other sites across the country that either have individual contracts with Biobot or are receiving free testing in exchange for sharing data.

    Copying from my post two weeks ago: on Biobot’s dashboard, “County-level data won’t change. National and regional data will still be available, but are likely to be less comprehensive pictures of wastewater trends across the U.S., if I’m right about Biobot no longer including CDC contract sites in those visualizations.” In fact, Biobot updated its dashboard this past Friday and will resume weekly updates soon, after making some changes to its data processing systems, according to social media posts from the company.

    Meanwhile, it is currently unclear how the new contract will impact data on the CDC’s wastewater dashboard as well as on Verily’s own dashboard. On the CDC dashboard, you can see that contract sites are not reporting wastewater data while they switch testing providers. Verily has a dashboard that currently shows data from WastewaterSCAN, a separate program that already uses Verily to test its samples; this dashboard hasn’t added CDC sites yet as far as I know.

    I’m not sharing the inaccurate posts I mentioned to avoid giving them extra attention, but I wanted to provide this extra update in case any readers had seen those posts and were confused. Once again: Biobot is still sharing data, it’s just less comprehensive, and I would still recommend going to their dashboard for COVID-19 trends. In this era of fragmented surveillance, it’s always good to rely on multiple dashboards (eg. CDC, Biobot, WastewaterSCAN) rather than just one.

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  • 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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  • COVID source shout-out: Novavax’s booster is now available

    This week, the FDA authorized Novavax’s updated COVID-19 vaccine. The CDC’s fall vaccine recommendations were already set up to include Novavax once it was authorized, so pharmacies and health providers can start administering it without any additional hurdles at the federal level.

    Novavax’s new vaccine, like the options from Pfizer and Moderna for this fall, is designed to protect against XBB.1.5, a recently circulating variant that is closely related to most of the strains causing disease in the U.S. right now. But unlike the Pfizer and Moderna vaccines (which use mRNA technology), Novavax’s uses a piece of viral spike protein to teach recipients’ immune systems how to recognize the coronavirus.

    Some scientists and health advocates I follow have been particularly looking forward to the Novavax authorization, hoping to get their shot rather than one of the mRNA options. There are two main reasons for this choice, based on my reading:

    • The Novavax vaccine may have fewer or easier side effects than the mRNA vaccines. This is particularly appealing for some people who had poor reactions to earlier mRNA vaccine doses (including, in some cases, long-term issues similar to Long COVID), and some people with chronic conditions.
    • Some experts say that “mixing and matching” different types of vaccines might lead to a more robust, long-term immune response against the coronavirus, compared to sticking with one vaccine type. 

    A recent article in Science goes into more detail about these considerations. Writer Jennifer Couzin-Frankel walks through scientific studies that look at Novavax compared to the other vaccine options, and explains some of the questions that we don’t have sufficient data to answer yet. For example, as fewer people have received Novavax vaccines compared to the mRNA options, it’s harder to see signals for potential rare adverse reactions. More studies are coming in that will help address these questions, but for now, many people are making personal choices about which vaccine to get this fall.

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  • 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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  • COVID source shout-out: CDC’s respiratory virus surveillance

    As fall begins, we’re approaching respiratory virus season—that time of year when viruses like the flu, RSV, common coronaviruses, and adenoviruses all spread readily throughout the Northern Hemisphere. Tracking systems for these viruses may also be helpful for following COVID-19 this fall and winter.

    While COVID-19 doesn’t yet follow a predictable, seasonal pattern, its activity has increased with these other viruses in the last couple of years. (Indoor gatherings and travel, particularly around the holidays, lead to outbreaks of all kinds.)

    This year, experts anticipate COVID-19 will spread with the colder weather again. But we have fewer systems tracking it than we did during earlier pandemic winters: no more case data, testing and hospitalization data aren’t as comprehensive or reliable, death data are significantly delayed (and more likely than ever to undercount true COVID-19 deaths), etc.

    So, people seeking to keep up with disease trends in their areas might find it helpful to look at surveillance sources that include COVID-19 along with other respiratory diseases. The CDC’s FluView dashboard is one major source, presenting data from clinical testing laboratories and healthcare settings that participate in the agency’s regular surveillance programs.

    Despite the name, FluView includes data on all viruses that cause cold and flu symptoms, including COVID-19. (In fact, the same lab network that informs this dashboard is also the current source of the CDC’s COVID-19 test positivity data.) FluView is a helpful place to see overall respiratory disease activity for the U.S. as a whole and for particular states and regions. I find the state-by-state map of influenza-like activity particularly useful.

    Tracking COVID-19 during fall and winter 2023 is going to be harder than it’s been during prior years. But we aren’t entirely in the dark. The CDC’s respiratory virus surveillance programs are one helpful source to look at, along with wastewater surveillance and the other COVID-specific programs that remain active.

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  • COVID source callout: You can’t search for COVID-19 information on Threads

    Threads, the new text-based social media platform from Meta (the parent company of Facebook and Instagram), has blocked users from searching about COVID-19 or Long COVID. The block is a harmful choice by Meta, which will make it difficult for health experts, people with Long COVID, and other seeking information to find each other on this platform.

    A search function became available on Threads last week, reports Taylor Lorenz in The Washington Post. Health experts and COVID-conscious users tested it out, and quickly discovered that searching for “COVID” or “Long COVID” led to a blank screen with no seach results. Threads instead directed the users to the CDC’s website.

    Lorenz received a statement from Meta confirming that the company is blocking these search results:

    Meta acknowledged in a statement to The Washington Post that Threads is intentionally blocking the search terms and said that other terms are being blocked, but the company declined to provide a list of them. A search by The Post discovered that the words “sex,” “nude,” “gore,” “porn,” “coronavirus,” “vaccines” and “vaccination” are also among blocked words.

    “The search functionality temporarily doesn’t provide results for keywords that may show potentially sensitive content,” the statement said, adding that the company will add search functionality for terms only “once we are confident in the quality of the results.”

    It’s unclear what steps Meta is taking to improve the “quality of the results” when users search for COVID-19 information, or when these searches will be available. But for now, experts and advocates who spoke to Lorenz say that the information block is harmful. “Censoring searches for COVID and Long COVID will only leave an information gap that will be filled by misinformation from elsewhere,” said science communicator Lucky Tran.

    I personally am not on Threads, and this recent news makes me even more wary of the platform than I’d been already. If you’re looking for a Twitter/X alternative to follow me on, I’ve been trying out Mastodon and Bluesky.

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  • COVID source shout-out: Wastewater surveillance in Wyoming

    Wastewater surveillance is re-starting in some Wyoming sewersheds after an earlier iteration of the program ended in December 2021, according to local news reports. This monitoring is a good sign for expanded coverage across more rural parts of the U.S.

    Researchers at the University of Wyoming, working with the state health department, first started testing wastewater for SARS-CoV-2 in fall 2020. The program included about 50 testing sites across the state, according to public data shared by the researchers online.

    In December 2021, however, the testing program ran out of funding and had to scale back. The CDC’s wastewater dashboard includes just four sites in Wyoming that have reported to the National Wastewater Surveillance System in 2023. Data from these sites also appear on the Biobot dashboard, suggesting that they’re being monitored by the company in partnership with local health agencies.

    Now, the state’s surveillance program is getting renewed funding, according to a report by Caitlin Tan for Wyoming Public Radio. Tan writes that “some of the larger communities in Wyoming” will soon be testing their wastewater for the coronavirus and other viruses. Data will be posted by the CDC, and the surveillance will continue through at least July 2024, Tan reports.

    While the article doesn’t specify how many sites will participate, this is still good news for a state that’s had limited wastewater monitoring over the last two years. I hope to see other more rural states follow Wyoming’s lead.

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