citizen science
Trying to Make Sense of Long COVID Syndrome
Posted on by Dr. Francis Collins
More than 400,000 Americans have now lost their lives to COVID-19. But thousands of others who’ve gotten sick and survived COVID-19 are finding that a full recovery can be surprisingly elusive. Weeks and months after seemingly recovering from even mild cases of COVID-19, many battle a wide range of health problems.
Indeed, new results from the largest global study of this emerging “Long COVID syndrome” highlight just how real and pressing this public health concern really is. The study, reported recently as a pre-print on medRxiv, is based on survey results from more than 3,700 self-described COVID “Long Haulers” in 56 countries [1]. They show nearly half couldn’t work full time six months after unexpectedly developing prolonged symptoms of COVID-19. A small percentage of respondents, thankfully, seemed to have bounced back from brief bouts of Long COVID, though time will tell whether they have fully recovered.
These findings are the second installment from the online Body Politic COVID-19 Support Group and its Patient-Led Research for COVID-19, which consists of citizen scientists with a wide range of expertise in the arts and sciences who are struggling with the prolonged effects of COVID-19 themselves. In an earlier survey, this group provided a first-draft description of Long COVID syndrome, based on the self-reported experiences of 640 respondents.
In the new survey-based study led by Athena Akrami, with Patient-Led Research for COVID-19 and University College London, England, the goal was to characterize the experiences of many more people with Long COVID syndrome. They now define the syndrome as a collection of symptoms lasting for more than 28 days.
This second survey emphasizes the course and severity of more than 200 symptoms over time, including those affecting the heart, lungs, gastrointestinal system, muscles, and joints. It took a particularly in-depth look at neurological and neuropsychiatric symptoms, along with the ability of COVID-19 survivors to return to work and participate in other aspects of everyday life.
The 3,762 individuals who responded to the survey were predominately white females, between the ages of 30 and 60, who lived in the United States. As in the previous survey, the study included adults with symptoms consistent with COVID-19, whether or not the infection had been confirmed by a viral or antibody test. That is a potential weakness of the study, as some of these individuals may have had some other inciting illness. But many of the study’s participants developed symptoms early on in the pandemic, when testing was much more limited than it is now.
More than half never sought hospital care. Only 8 percent said that they’d been admitted to the hospital for COVID-19. And yet, 2,464 respondents reported COVID-19 symptoms lasting six months or longer. Most of the remaining respondents also continued to have symptoms, although they had not yet reached the six-month mark.
Among the most common symptoms were fatigue, worsening of symptoms after physical or mental activity, shortness of breath, trouble sleeping, and “brain fog,” or difficulty thinking clearly. The majority—88 percent—said they coped with some form of cognitive dysfunction or memory loss that to varying degrees affected their everyday lives. That includes the ability to make decisions, have conversations, follow instructions, and drive.
Those who had prolonged symptoms of COVID-19 for more than six months reported contending with about 14 symptoms on average. Most also reported that they’d had a relapse of symptoms, seemingly triggered by exercise, mental activity, or just everyday stress. When surveyed, nearly half of respondents said they’d had to reduce their hours at work due to the severity of their symptoms. Another 22 percent weren’t working at all due to their Long COVID.
The findings show that—even in those people who don’t require hospitalization for severe COVID-19—the condition’s prolonged symptoms are having a major impact on lives and livelihoods, both here and around the world. While the number of people affected isn’t yet known, if even a small proportion of the vast numbers of people infected with COVID-19 develop Long COVID syndrome, it represents a significant public health concern.
Another recent study from China further documents the tendency of COVID-19-related symptoms to linger past the usual recovery time for a respiratory virus [2]. The study, published in Lancet, showed that six months after the onset of illness, more than 75 percent of people hospitalized with COVID-19 in Wuhan between January and May 2020 continued to report at least one symptom. Fatigue, muscle weakness, sleep difficulties, anxiety, and depression all were common. More than half of individuals also had significant persistent lung abnormalities, which were more common in those who’d been more severely ill.
It’s essential for us to learn all we can about how SARS-CoV-2, which is the coronavirus that causes COVID-19, leads to such widespread symptoms. It’s also essential that we develop ways to better treat or prevent these symptoms. The NIH held a workshop last month to summarize what is known and fill in key gaps in our knowledge about Long COVID syndrome, which is clinically known as post-acute sequelae of COVID-19 (PASC). In December, Congress authorized funding for continued research on PASC, including an appropriation of funds for NIH to support continued study of these prolonged health consequences.
As these efforts and others proceed in the coming months, the hope is that we’ll gain much more insight and get some answers soon. And, if you’ve had or are currently experiencing symptoms of COVID-19, there’s still time to share your data by participating in the Patient-Led Research for COVID-19’s second survey.
References:
[1] Characterizing Long COVID in an international cohort: 7 months of symptoms and their impact. David HE et al. Medrxiv. 27 December 27 2020.
[2] 6-month consequences of COVID-19 in patients discharged from hospital: a cohort study. Huang C, Huang L, et al. Lancet. 2021 Jan 16;397(10270):220-232.
Links:
COVID-19 Research (NIH)
Akrami Lab (Sainsbury Wellcome Center, University College London, England)
Patient-led Research for COVID-19
Video: Workshop on Post-Acute Sequelae of COVID-19 (NIH)
Citizen Scientists Take on the Challenge of Long-Haul COVID-19
Posted on by Dr. Francis Collins
Coronaviruses are a frequent cause of the common cold. Most of us bounce back from colds without any lasting health effects. So, you might think that individuals who survive other infectious diseases caused by coronaviruses—including COVID-19—would also return to normal relatively quickly. While that can be the case for some people, others who’ve survived even relatively mild COVID-19 are experiencing health challenges that may last for weeks or even months. In fact, the situation is so common, that some of these folks have banded together and given their condition a name: the COVID “long-haulers.”
Among the many longer-term health problems that have been associated with COVID-19 are shortness of breath, fatigue, cognitive issues, erratic heartbeat, gastrointestinal issues, low-grade fever, intolerance to physical or mental activity, and muscle and joint pains. COVID-19 survivors report that these symptoms flair up unpredictably, often in different combinations, and can be debilitating for days and weeks at a time. Because COVID-19 is such a new disease, little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers.
More information is now emerging from the first detailed patient survey of post-COVID syndrome, also known as Long COVID [1]. What’s unique about the survey is that it has been issued by a group of individuals who are struggling with the syndrome themselves. These citizen scientists, who belong to the online Body Politic COVID-19 Support Group, decided to take matters into their own hands. They already had a pretty good grip on what sort of questions to ask, as well as online access to hundreds of long-haulers to whom they could pose the questions.
The citizen scientists’ group, known as the Patient-led Research for COVID-19, brought a lot of talent and creativity to the table. Members reside in the United States, Canada, and England, and none have ever met face to face. But, between their day jobs, managing time differences, and health challenges, each team member spends about 20 hours per week working on their patient-led research, and are now putting the final touches on a follow-up survey that will get underway in the next few weeks.
For their first survey, the group members faced the difficult decision of whom to contact. First, they needed to define long hauler. For that, they decided to target people whose symptoms persisted for more than 2 weeks after their initial recovery from COVID-19. The 640 individuals who responded to the survey were predominately white females between the ages of 30 to 49 who lived in the United States. The members said that the gender bias may stem from women being more likely to join support groups and complete surveys, though there may be a gender component to Long COVID as well. About 10 percent of respondents reported that they had ultimately recovered from this post-COVID syndrome.
Another important issue revolved around COVID-19 testing. Most long-haulers in the online group had gotten sick in March and April, but weren’t so sick that they needed to be hospitalized. Because COVID-19 testing during those months was often limited to people hospitalized with severe respiratory problems, many long-haulers with mild or moderate COVID-like symptoms weren’t tested. Others were tested relatively late in the course of their illness, which can increase the likelihood of false negatives.
The team opted to cast a wide investigative net, concluding that limiting its data to only people who tested positive for COVID-19 might lead to the loss of essential information on long-haulers. It turns out that half of the respondents hadn’t been tested for SARS-CoV-2, the virus that causes COVID-19. The other half was divided almost equally between those who tested positive and those who tested negative. Here are some highlights of the survey’s findings:
Top 10 Symptoms: Respondents were asked to rank their most common symptoms and their relative severity. From highest to lowest, they were: mild shortness of breath, mild tightness of chest, moderate fatigue, mild fatigue, chills or sweats, mild body aches, dry cough, elevated temperature (98.8-100), mild headache, and brain fog/concentration challenges. Highlighting the value of patient-led research, the team was able to assemble an initial list of 62 symptoms that long-haulers often discuss in support groups. The survey revealed common symptoms that have been greatly underreported in the media, such as neurological symptoms. These include brain fog, concentration challenges, and dizziness.
Making a Recovery: Of the 60 respondents who had recovered, the average time to recovery was 27 days. The respondents who had not recovered had managed their symptoms for 40 days on average, with most dealing with health problems for 5 to 7 weeks. The report shows that the chance of full recovery by day 50 is less than 20 percent.
Exercise Capacity: About 65 percent of respondents now consider themselves mostly sedentary. Most had been highly physically active before developing COVID-19. Many long-haulers expressed concern that overexertion causes relapses
Testing. Respondents who reported testing positive for SARS-CoV-2 were tested on average earlier in their illness (by day 10) than those who reported testing negative (by day 16). The team noted that their findings parallel those in a recent published scientific study, which found false-negative rates for current PCR-based assays rose as the time between SARS-CoV-2 infection and testing increased [2]. In that published study, by day 21, the false-negative rate reached 66 percent. Only two symptoms (loss of smell and loss of taste) occurred more frequently in respondents who tested positive; the other 60 symptoms were statistically the same between groups. The citizen scientists speculate that testing is not capturing a subset of COVID patients, and more investigation is required.
Since issuing their survey results on May 11, the team has met with staff from the Centers for Disease Control and Prevention and the World Health Organization. Their work also been mentioned in magazine articles and even cited in some papers published in scientific journals.
In their next survey, these citizen scientists hope to fill in gaps in their first report, including examining antibody testing results, neurological symptoms, and the role of mental health. To increase geographic and demographic diversity, they will also translate the survey into 10 languages. If you’re a COVID-19 long-hauler and would like to find out how to get involved, there’s still time to take part in the next survey.
References:
[1] “What Does COVID-19 Recovery Actually Look Like?” Patient-led Research for COVID-19. May 11, 2020.
[2] Variation in False-Negative Rate of Reverse Transcriptase Polymerase Chain Reaction-Based SARS-CoV-2 Tests by Time Since Exposure. Kucirka LM, Lauer SA, Laeyendecker O, Boon D, Lessler J. Ann Intern Med. 2020 Aug 18;173(4):262-267.
Links:
Coronavirus (COVID-19) (NIH)
Exploring the Universality of Human Song
Posted on by Dr. Francis Collins
It’s often said that music is a universal language. But is it really universal? Some argue that humans are just too culturally complex and their music is far too varied to expect any foundational similarity. Yet some NIH-funded researchers recently decided to take on the challenge, using the tools of computational social science to analyze recordings of human songs and other types of data gathered from more than 300 societies around the globe.
In a study published in the journal Science [1], the researchers conclude that music is indeed universal. Their analyses showed that all of the cultures studied used song in four similar behavioral contexts: dance, love, healing, and infant care. What’s more, no matter where in the world one goes, songs used in each of those ways were found to share certain musical features, including tone, pitch, and rhythm.
As exciting as the new findings may be for those who love music (like me), the implications may extend far beyond music itself. The work may help to shed new light on the complexities of the human brain, as well as inform efforts to enhance the role of music in improving human health. The healing power of music is a major focus of the NIH-supported Sound Health Initiative.
Samuel Mehr, a researcher at Harvard University, Cambridge, MA, led this latest study, funded in part by an NIH Director’s Early Independence Award. His multi-disciplinary team included anthropologists Manvir Singh, Harvard, and Luke Glowacki, Penn State University, State College; computational linguist Timothy O’Donnell, McGill University, Montreal, Canada; and political scientists Dean Knox, Princeton University, Princeton, NJ, and Christopher Lucas, Washington University, St. Louis.
In work published last year [2], Mehr’s team found that untrained listeners in 60 countries could on average discern the human behavior associated with culturally unfamiliar musical forms. These behaviors included dancing, soothing a baby, seeking to heal illness, or expressing love to another person.
In the latest study, the team took these initial insights and applied them more broadly to the universality of music. They started with the basic question: Do all human societies make music?
To find the answer, the team accessed Yale University’s Human Relations Area Files, an internationally recognized database for cultural anthropologists. This rich resource contains high-quality data for 319 mostly tribal societies across the planet, allowing the researchers to search archival information for mentions of music. Their search pulled up music tags for 309 societies. Digging deeper in other historical records not in the database, the team confirmed that the remaining six societies did indeed make music.
The researchers propose that these 319 societies provide a representative cross section of humanity. They thus conclude that it is statistically probable that music is in fact found in all human societies.
What exactly is so universal about music? To begin answering this complex question, the researchers tapped into more than a century of musicology to build a vast, multi-faceted database that they call the Natural History of Song (NHS).
Drawing from the NHS database, the researchers focused on nearly 5,000 vocally performed songs from 60 carefully selected human societies on all continents. By statistically analyzing those musical descriptions, they found that the behaviors associated with songs vary along three dimensions, which the researchers refer to as formality, arousal, and religiosity.
When the researchers mapped the four types of songs from their earlier study—love, dance, lullaby, and healing—onto these dimensions, they found that songs used in similar behavioral contexts around the world clustered together. For instance, across human societies, dance songs tend to appear in more formal contexts with large numbers of people. They also tend to be upbeat and energetic and don’t usually appear as part of religious ceremonies. In contrast, love songs tend to be more informal and less energetic.
Interestingly, the team also replicated its previous study in a citizen-science experiment with nearly 30,000 participants living in over 100 countries worldwide. They found again that listeners could tell what kinds of songs they were listening to, even when those songs came from faraway places. They went on to show that certain acoustic features of songs, like tempo, melody, and pitch, help to predict a song’s primary behavioral function across societies.
In many musical styles, melodies are composed of a fixed set of distinct tones organized around a tonal center (sometimes called the “tonic,” it’s the “do” in “do-re-mi”). For instance, the researchers explain, the tonal center of “Row Your Boat” is found in each “row” as well as the last “merrily,” and the final “dream.”
Their analyses show that songs with such basic tonal melodies are widespread and perhaps even universal. This suggests that tonality could be a means to delve even deeper into the natural history of world music and other associated behaviors, such as play, mourning, and fighting.
While some aspects of music may be universal, others are quite diverse. That’s particularly true within societies, where people may express different psychological states in song to capture their views of their culture. In fact, Mehr’s team found that the musical variation within a typical society is six times greater for that reason than the musical diversity across societies.
Following up on this work, Mehr’s team is now recruiting families with young infants for a study to understand how they respond to their varied collection of songs. Meanwhile, through the Sound Health Initiative, other research teams around the country are exploring many other ways in which listening to and creating music may influence and improve our health. As a scientist and amateur musician, I couldn’t be more excited to take part in this exceptional time of discovery at the intersection of health, neuroscience, and music.
References:
[1] Universality and diversity in human song. Mehr SA, Singh M, Knox D, Ketter DM, Pickens-Jones D, Atwood S, Lucas C, Jacoby N, Egner AA, Hopkins EJ, Howard RM, Hartshorne JK, Jennings MV, Simson J, Bainbridge CM, Pinker S, O’Donnell TJ, Krasnow MM, Glowacki L. Science. 2019 Nov 22;366(6468).
[2] Form and function in human song. Mehr SA, Singh M, York H, Glowacki L, Krasnow MM. Curr Biol. 2018 Feb 5;28(3):356-368.e5.
Links:
Sound Health Initiative (NIH)
Video: Music and the Mind—A Q & A with Renée Fleming & Francis Collins (YouTube)
The Music Lab (Harvard University, Cambridge, MA)
Samuel Mehr (Harvard)
NIH Director’s Early Independence Award (Common Fund)
NIH Support: Common Fund
Crowdsourcing 600 Years of Human History
Posted on by Dr. Francis Collins
Caption: A 6,000-person family tree, showing individuals spanning seven generations (green) and their marital links (red).
Credit: Columbia University, New York City
You may have worked on constructing your family tree, perhaps listing your ancestry back to your great-grandparents. Or with so many public records now available online, you may have even uncovered enough information to discover some unexpected long-lost relatives. Or maybe you’ve even submitted a DNA sample to one of the commercial sources to see what you could learn about your ancestry. But just how big can a family tree grow using today’s genealogical tools?
A recent paper offers a truly eye-opening answer. With permission to download the publicly available, online profiles of 86 million genealogy hobbyists, most of European descent, the researchers assembled more than 5 million family trees. The largest totaled more than 13 million people! By merging each tree from the crowd-sourced and public data, including the relatively modest 6,000-person seedling shown above, the researchers were able to go back 11 generations on average to the 15th century and the days of Christopher Columbus. Doubly exciting, these large datasets offer a powerful new resource to study human health, having already provided some novel insights into our family structures, genes, and longevity.
Powerful Antibiotics Found in Dirt
Posted on by Dr. Francis Collins
Caption: Researchers found a new class of antibiotics in a collection of about 2,000 soil samples.
Credit: Sean Brady, The Rockefeller University, New York City
Many of us think of soil as lifeless dirt. But, in fact, soil is teeming with a rich array of life: microbial life. And some of those tiny, dirt-dwelling microorganisms—bacteria that produce antibiotic compounds that are highly toxic to other bacteria—may provide us with valuable leads for developing the new drugs we so urgently need to fight antibiotic-resistant infections.
Recently, NIH-funded researchers discovered a new class of antibiotics, called malacidins, by analyzing the DNA of the bacteria living in more than 2,000 soil samples, including many sent by citizen scientists living all across the United States [1]. While more work is needed before malacidins can be tried in humans, the compounds successfully killed several types of multidrug-resistant bacteria in laboratory tests. Most impressive was the ability of malacadins to wipe out methicillin-resistant Staphylococcus aureus (MRSA) skin infections in rats. Often referred to as a “super bug,” MRSA threatens the lives of tens of thousands of Americans each year [2].
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