Covid ICYMI

Poor-quality sleep and irregular sleep could be important drivers of breathlessness in patients who were previously hospitalized for COVID-19, according to data from the U.K.’s CircCOVID study.

The researchers, led by John Blaikley, MRCP, PhD, respiratory physician and clinical scientist from the University of Manchester (England), found that sleep disturbance is a common problem after hospital admission for COVID-19 and may last for at least 1 year.

The study also showed that sleep disturbance after COVID hospitalization was associated with dyspnea and lower lung function. Further in-depth analysis revealed that the effects of sleep disturbance on dyspnea were partially mediated through both anxiety and muscle weakness; however, “this does not fully explain the association, suggesting other pathways are involved,” said Dr. Blaikley.

The study was jointly conducted by researchers from the University of Leicester (England), as well as 20 other U.K. institutes and the University of Helsinki. It was presented at the European Congress of Clinical Microbiology & Infectious Diseases and was simultaneously published in The Lancet Respiratory Medicine.

“Sleep disturbance is a common problem after hospitalization for COVID-19 and is associated with several symptoms in the post-COVID syndrome,” said Dr. Blaikley. “Clinicians should be aware of this association in their post-COVID syndrome clinics.”

He added that further work needs to be done to define the mechanism and to see whether the links are causal. “However, if they are, then treating sleep disturbance could have beneficial effects beyond improving sleep quality,” he said in an interview.

A large study recently showed that 4 in 10 people with post-COVID syndrome had moderate to severe sleep problems. Black people were at least three times more likely than White people to experience sleep problems. A total of 59% of all participants with long COVID reported having normal sleep or mild sleep disturbances, and 41% reported having moderate to severe sleep disturbances.

Unlike prior studies that evaluated sleep quality after COVID-19, which used either objective or subjective measures of sleep disturbance, the current study used both. “Using both measures revealed previously poorly described associations between sleep disturbance, breathlessness, reduced lung function, anxiety, and muscle weakness,” Dr. Blaikley pointed out.

Subjective and objective measures of sleep

The multicenter CircCOVID cohort study aimed to shed light on the prevalence and nature of sleep disturbance after patients are discharged from hospital for COVID-19 and to assess whether this was associated with dyspnea.

The study recruited a total of 2,320 participants who were part of a larger parent PHOSP-COVID study. After attending an early follow-up visit (at a median of 5 months after discharge from 83 U.K. hospitals for COVID-19), 638 participants provided data for analysis as measured by the Pittsburgh Sleep Quality Index (a subjective measure of sleep quality); 729 participants provided data for analysis as measured by actigraphy (an objective, wrist-worn, device-based measure of sleep quality) at a median of 7 months.

Breathlessness, the primary outcome, was assessed using the Dyspnea-12 validated questionnaire.

Actigraphy measurements were compared with an age-matched, sex-matched, body mass index (BMI)–matched, and time from discharge–matched cohort from the UK Biobank (a prepandemic comparator longitudinal cohort of 502,540 individuals, one-fifth of whom wore actigraphy devices). Sleep regularity was found to be 19% less in previously hospitalized patients with post-COVID syndrome, compared with matched controls who had been hospitalized for other reasons.

This “revealed that the actigraphy changes may be, in part, due to COVID-19 rather than hospitalization alone,” said Dr. Blaikley.

Data were collected at two time points after hospital discharge: 2-7 months (early), and 10-14 months (late). At the early time point, participants were clinically assessed with respect to anxiety, muscle function, and dyspnea, and lung function.

After discharge from hospital, the majority (62%) of post–COVID-19 participants reported poor sleep quality on the Pittsburgh Sleep Quality Index questionnaire. A “comparable” proportion (53%) felt that their quality of sleep had deteriorated following hospital discharge according to the numerical rating scale (subjective measure).

Also, sleep disturbance was found likely to persist for at least 12 months, since subjective sleep quality hardly changed between the early and late time points after hospital discharge.

Both subjective metrics (sleep quality and sleep quality deterioration after hospital discharge) and objective, device-based metrics (sleep regularity) were found to be associated with dyspnea and reduced lung function in patients with post-COVID syndrome.

“One of the striking findings in our study is the consistency with breathlessness and reduced lung function across different methods used to evaluate sleep,” highlighted Dr. Blaikley.

“The other striking finding was that participants following COVID-19 hospitalization actually slept longer [65 min; 95% confidence interval, 59-71 min] than participants hospitalized for non-COVID; however, their bedtimes were irregular, and it was this irregularity that was associated with breathlessness,” he added.

In comparison with nonhospitalized controls, also from the UK Biobank, study participants with lower sleep regularity had higher Dyspnea-12 scores (unadjusted effect estimate, 4.38; 95%: CI, 2.10-6.65). Those with poor sleep quality overall also had higher Dyspnea-12 scores (unadjusted effect estimate, 3.94; 95% CI, 2.78-5.10), and those who reported sleep quality deterioration had higher Dyspnea-12 scores (unadjusted effect estimate, 3,00; 95% CI, 1.82-4.28).

In comparison with hospitalized controls, CircCOVID participants had lower sleep regularity index (–19%; 95% CI, –20 to –16) and lower sleep efficiency (3.83 percentage points; 95% CI, 3.40-4.26).

Sleep disturbance after COVID hospitalization was also associated with lower lung function, from a 7% to a 14% reduction in predicted forced vital capacity, depending on which sleep measure used.

In an analysis of mediating factors active in the relationship between sleep disturbance and dyspnea/decreased lung function, the researchers found that reduced muscle function and anxiety, which are both recognized causes of dyspnea, could partially contribute to the association.

Regarding anxiety, and depending on the sleep metric, anxiety mediated 18%-39% of the effect of sleep disturbance on dyspnea, while muscle weakness mediated 27%-41% of this effect, reported Dr. Blaikley. Those with poor sleep quality were more likely to have mild, moderate, or severe anxiety, compared with participants who reported good-quality sleep.

A similar association was observed between anxiety and sleep quality deterioration.

“Two key questions are raised by our study: Do sleep interventions have a beneficial effect in post–COVID-19 syndrome, and are the associations causal?” asked Dr. Blaikley. “We hope to do a sleep intervention trial to answer these questions to explore if this is an effective treatment for post–COVID-19 syndrome.”

‘Underlying mechanisms remain unclear’

Amitava Banerjee, MD, professor of clinical data science and honorary consultant cardiologist, Institute of Health Informatics, UCL, London, welcomed the study but noted that it did not include nonhospitalized post-COVID patients.

“The majority of people with long COVID were not hospitalized for COVID, so the results may not be generalizable to this larger group,” she said in an interview. “Good-quality sleep is important for health and reduces risk of chronic diseases; quality of sleep is therefore likely to be important for those with long COVID in reducing their risk of chronic disease, but the role of sleep in the mechanism of long COVID needs further research.”

In a commentary also published in The Lancet Respiratory Medicine, W. Cameron McGuire, MD, pulmonary and critical care specialist from San Diego, California, and colleagues wrote: “These findings suggest that sleep disturbance, dyspnea, and anxiety are common after COVID-19 and are associated with one another, although the underlying mechanisms remain unclear.”

The commentators “applauded” the work overall but noted that the findings represent correlation rather than causation. “It is unclear whether sleep disturbance is causing anxiety or whether anxiety is contributing to poor sleep. ... For the sleep disturbances, increased BMI in the cohort reporting poor sleep, compared with those reporting good sleep might suggest underlying obstructive sleep apnea,” they wrote.

Dr. McGuire and colleagues added that many questions remain for researchers and clinicians, including “whether anxiety and dyspnoea are contributing to a low arousal threshold [disrupting sleep] ... whether the observed abnormalities (e.g., in dyspnea score) are clinically significant,” and “whether therapies such as glucocorticoids, anticoagulants, or previous vaccinations mitigate the observed abnormalities during COVID-19 recovery.”

Dr. Blaikley has received support to his institute from an MRC Transition Fellowship, Asthma + Lung UK, NIHR Manchester BRC, and UKRI; grants to his institution from the Small Business Research Initiative Home Spirometer and the National Institute of Academic Anaesthesia; and support from TEVA and Therakos for attending meetings. He is a committee member of the Royal Society of Medicine. A coauthor received funding from the National Institutes of Health and income for medical education from Zoll, Livanova, Jazz, and Eli Lilly. Dr. Banerjee is the chief investigator of STIMULATE-ICP (an NIHR-funded study) and has received research funding from AstraZeneca.

A version of this article first appeared on Medscape.com.

Poor-quality sleep and irregular sleep could be important drivers of breathlessness in patients who were previously hospitalized for COVID-19, according to data from the U.K.’s CircCOVID study.

The researchers, led by John Blaikley, MRCP, PhD, respiratory physician and clinical scientist from the University of Manchester (England), found that sleep disturbance is a common problem after hospital admission for COVID-19 and may last for at least 1 year.

The study also showed that sleep disturbance after COVID hospitalization was associated with dyspnea and lower lung function. Further in-depth analysis revealed that the effects of sleep disturbance on dyspnea were partially mediated through both anxiety and muscle weakness; however, “this does not fully explain the association, suggesting other pathways are involved,” said Dr. Blaikley.

The study was jointly conducted by researchers from the University of Leicester (England), as well as 20 other U.K. institutes and the University of Helsinki. It was presented at the European Congress of Clinical Microbiology & Infectious Diseases and was simultaneously published in The Lancet Respiratory Medicine.

“Sleep disturbance is a common problem after hospitalization for COVID-19 and is associated with several symptoms in the post-COVID syndrome,” said Dr. Blaikley. “Clinicians should be aware of this association in their post-COVID syndrome clinics.”

He added that further work needs to be done to define the mechanism and to see whether the links are causal. “However, if they are, then treating sleep disturbance could have beneficial effects beyond improving sleep quality,” he said in an interview.

A large study recently showed that 4 in 10 people with post-COVID syndrome had moderate to severe sleep problems. Black people were at least three times more likely than White people to experience sleep problems. A total of 59% of all participants with long COVID reported having normal sleep or mild sleep disturbances, and 41% reported having moderate to severe sleep disturbances.

Unlike prior studies that evaluated sleep quality after COVID-19, which used either objective or subjective measures of sleep disturbance, the current study used both. “Using both measures revealed previously poorly described associations between sleep disturbance, breathlessness, reduced lung function, anxiety, and muscle weakness,” Dr. Blaikley pointed out.

Subjective and objective measures of sleep

The multicenter CircCOVID cohort study aimed to shed light on the prevalence and nature of sleep disturbance after patients are discharged from hospital for COVID-19 and to assess whether this was associated with dyspnea.

The study recruited a total of 2,320 participants who were part of a larger parent PHOSP-COVID study. After attending an early follow-up visit (at a median of 5 months after discharge from 83 U.K. hospitals for COVID-19), 638 participants provided data for analysis as measured by the Pittsburgh Sleep Quality Index (a subjective measure of sleep quality); 729 participants provided data for analysis as measured by actigraphy (an objective, wrist-worn, device-based measure of sleep quality) at a median of 7 months.

Breathlessness, the primary outcome, was assessed using the Dyspnea-12 validated questionnaire.

Actigraphy measurements were compared with an age-matched, sex-matched, body mass index (BMI)–matched, and time from discharge–matched cohort from the UK Biobank (a prepandemic comparator longitudinal cohort of 502,540 individuals, one-fifth of whom wore actigraphy devices). Sleep regularity was found to be 19% less in previously hospitalized patients with post-COVID syndrome, compared with matched controls who had been hospitalized for other reasons.

This “revealed that the actigraphy changes may be, in part, due to COVID-19 rather than hospitalization alone,” said Dr. Blaikley.

Data were collected at two time points after hospital discharge: 2-7 months (early), and 10-14 months (late). At the early time point, participants were clinically assessed with respect to anxiety, muscle function, and dyspnea, and lung function.

After discharge from hospital, the majority (62%) of post–COVID-19 participants reported poor sleep quality on the Pittsburgh Sleep Quality Index questionnaire. A “comparable” proportion (53%) felt that their quality of sleep had deteriorated following hospital discharge according to the numerical rating scale (subjective measure).

Also, sleep disturbance was found likely to persist for at least 12 months, since subjective sleep quality hardly changed between the early and late time points after hospital discharge.

Both subjective metrics (sleep quality and sleep quality deterioration after hospital discharge) and objective, device-based metrics (sleep regularity) were found to be associated with dyspnea and reduced lung function in patients with post-COVID syndrome.

“One of the striking findings in our study is the consistency with breathlessness and reduced lung function across different methods used to evaluate sleep,” highlighted Dr. Blaikley.

“The other striking finding was that participants following COVID-19 hospitalization actually slept longer [65 min; 95% confidence interval, 59-71 min] than participants hospitalized for non-COVID; however, their bedtimes were irregular, and it was this irregularity that was associated with breathlessness,” he added.

In comparison with nonhospitalized controls, also from the UK Biobank, study participants with lower sleep regularity had higher Dyspnea-12 scores (unadjusted effect estimate, 4.38; 95%: CI, 2.10-6.65). Those with poor sleep quality overall also had higher Dyspnea-12 scores (unadjusted effect estimate, 3.94; 95% CI, 2.78-5.10), and those who reported sleep quality deterioration had higher Dyspnea-12 scores (unadjusted effect estimate, 3,00; 95% CI, 1.82-4.28).

In comparison with hospitalized controls, CircCOVID participants had lower sleep regularity index (–19%; 95% CI, –20 to –16) and lower sleep efficiency (3.83 percentage points; 95% CI, 3.40-4.26).

Sleep disturbance after COVID hospitalization was also associated with lower lung function, from a 7% to a 14% reduction in predicted forced vital capacity, depending on which sleep measure used.

In an analysis of mediating factors active in the relationship between sleep disturbance and dyspnea/decreased lung function, the researchers found that reduced muscle function and anxiety, which are both recognized causes of dyspnea, could partially contribute to the association.

Regarding anxiety, and depending on the sleep metric, anxiety mediated 18%-39% of the effect of sleep disturbance on dyspnea, while muscle weakness mediated 27%-41% of this effect, reported Dr. Blaikley. Those with poor sleep quality were more likely to have mild, moderate, or severe anxiety, compared with participants who reported good-quality sleep.

A similar association was observed between anxiety and sleep quality deterioration.

“Two key questions are raised by our study: Do sleep interventions have a beneficial effect in post–COVID-19 syndrome, and are the associations causal?” asked Dr. Blaikley. “We hope to do a sleep intervention trial to answer these questions to explore if this is an effective treatment for post–COVID-19 syndrome.”

‘Underlying mechanisms remain unclear’

Amitava Banerjee, MD, professor of clinical data science and honorary consultant cardiologist, Institute of Health Informatics, UCL, London, welcomed the study but noted that it did not include nonhospitalized post-COVID patients.

“The majority of people with long COVID were not hospitalized for COVID, so the results may not be generalizable to this larger group,” she said in an interview. “Good-quality sleep is important for health and reduces risk of chronic diseases; quality of sleep is therefore likely to be important for those with long COVID in reducing their risk of chronic disease, but the role of sleep in the mechanism of long COVID needs further research.”

In a commentary also published in The Lancet Respiratory Medicine, W. Cameron McGuire, MD, pulmonary and critical care specialist from San Diego, California, and colleagues wrote: “These findings suggest that sleep disturbance, dyspnea, and anxiety are common after COVID-19 and are associated with one another, although the underlying mechanisms remain unclear.”

The commentators “applauded” the work overall but noted that the findings represent correlation rather than causation. “It is unclear whether sleep disturbance is causing anxiety or whether anxiety is contributing to poor sleep. ... For the sleep disturbances, increased BMI in the cohort reporting poor sleep, compared with those reporting good sleep might suggest underlying obstructive sleep apnea,” they wrote.

Dr. McGuire and colleagues added that many questions remain for researchers and clinicians, including “whether anxiety and dyspnoea are contributing to a low arousal threshold [disrupting sleep] ... whether the observed abnormalities (e.g., in dyspnea score) are clinically significant,” and “whether therapies such as glucocorticoids, anticoagulants, or previous vaccinations mitigate the observed abnormalities during COVID-19 recovery.”

Dr. Blaikley has received support to his institute from an MRC Transition Fellowship, Asthma + Lung UK, NIHR Manchester BRC, and UKRI; grants to his institution from the Small Business Research Initiative Home Spirometer and the National Institute of Academic Anaesthesia; and support from TEVA and Therakos for attending meetings. He is a committee member of the Royal Society of Medicine. A coauthor received funding from the National Institutes of Health and income for medical education from Zoll, Livanova, Jazz, and Eli Lilly. Dr. Banerjee is the chief investigator of STIMULATE-ICP (an NIHR-funded study) and has received research funding from AstraZeneca.

A version of this article first appeared on Medscape.com.

Poor-quality sleep and irregular sleep could be important drivers of breathlessness in patients who were previously hospitalized for COVID-19, according to data from the U.K.’s CircCOVID study.

The researchers, led by John Blaikley, MRCP, PhD, respiratory physician and clinical scientist from the University of Manchester (England), found that sleep disturbance is a common problem after hospital admission for COVID-19 and may last for at least 1 year.

The study also showed that sleep disturbance after COVID hospitalization was associated with dyspnea and lower lung function. Further in-depth analysis revealed that the effects of sleep disturbance on dyspnea were partially mediated through both anxiety and muscle weakness; however, “this does not fully explain the association, suggesting other pathways are involved,” said Dr. Blaikley.

The study was jointly conducted by researchers from the University of Leicester (England), as well as 20 other U.K. institutes and the University of Helsinki. It was presented at the European Congress of Clinical Microbiology & Infectious Diseases and was simultaneously published in The Lancet Respiratory Medicine.

“Sleep disturbance is a common problem after hospitalization for COVID-19 and is associated with several symptoms in the post-COVID syndrome,” said Dr. Blaikley. “Clinicians should be aware of this association in their post-COVID syndrome clinics.”

He added that further work needs to be done to define the mechanism and to see whether the links are causal. “However, if they are, then treating sleep disturbance could have beneficial effects beyond improving sleep quality,” he said in an interview.

A large study recently showed that 4 in 10 people with post-COVID syndrome had moderate to severe sleep problems. Black people were at least three times more likely than White people to experience sleep problems. A total of 59% of all participants with long COVID reported having normal sleep or mild sleep disturbances, and 41% reported having moderate to severe sleep disturbances.

Unlike prior studies that evaluated sleep quality after COVID-19, which used either objective or subjective measures of sleep disturbance, the current study used both. “Using both measures revealed previously poorly described associations between sleep disturbance, breathlessness, reduced lung function, anxiety, and muscle weakness,” Dr. Blaikley pointed out.

Subjective and objective measures of sleep

The multicenter CircCOVID cohort study aimed to shed light on the prevalence and nature of sleep disturbance after patients are discharged from hospital for COVID-19 and to assess whether this was associated with dyspnea.

The study recruited a total of 2,320 participants who were part of a larger parent PHOSP-COVID study. After attending an early follow-up visit (at a median of 5 months after discharge from 83 U.K. hospitals for COVID-19), 638 participants provided data for analysis as measured by the Pittsburgh Sleep Quality Index (a subjective measure of sleep quality); 729 participants provided data for analysis as measured by actigraphy (an objective, wrist-worn, device-based measure of sleep quality) at a median of 7 months.

Breathlessness, the primary outcome, was assessed using the Dyspnea-12 validated questionnaire.

Actigraphy measurements were compared with an age-matched, sex-matched, body mass index (BMI)–matched, and time from discharge–matched cohort from the UK Biobank (a prepandemic comparator longitudinal cohort of 502,540 individuals, one-fifth of whom wore actigraphy devices). Sleep regularity was found to be 19% less in previously hospitalized patients with post-COVID syndrome, compared with matched controls who had been hospitalized for other reasons.

This “revealed that the actigraphy changes may be, in part, due to COVID-19 rather than hospitalization alone,” said Dr. Blaikley.

Data were collected at two time points after hospital discharge: 2-7 months (early), and 10-14 months (late). At the early time point, participants were clinically assessed with respect to anxiety, muscle function, and dyspnea, and lung function.

After discharge from hospital, the majority (62%) of post–COVID-19 participants reported poor sleep quality on the Pittsburgh Sleep Quality Index questionnaire. A “comparable” proportion (53%) felt that their quality of sleep had deteriorated following hospital discharge according to the numerical rating scale (subjective measure).

Also, sleep disturbance was found likely to persist for at least 12 months, since subjective sleep quality hardly changed between the early and late time points after hospital discharge.

Both subjective metrics (sleep quality and sleep quality deterioration after hospital discharge) and objective, device-based metrics (sleep regularity) were found to be associated with dyspnea and reduced lung function in patients with post-COVID syndrome.

“One of the striking findings in our study is the consistency with breathlessness and reduced lung function across different methods used to evaluate sleep,” highlighted Dr. Blaikley.

“The other striking finding was that participants following COVID-19 hospitalization actually slept longer [65 min; 95% confidence interval, 59-71 min] than participants hospitalized for non-COVID; however, their bedtimes were irregular, and it was this irregularity that was associated with breathlessness,” he added.

In comparison with nonhospitalized controls, also from the UK Biobank, study participants with lower sleep regularity had higher Dyspnea-12 scores (unadjusted effect estimate, 4.38; 95%: CI, 2.10-6.65). Those with poor sleep quality overall also had higher Dyspnea-12 scores (unadjusted effect estimate, 3.94; 95% CI, 2.78-5.10), and those who reported sleep quality deterioration had higher Dyspnea-12 scores (unadjusted effect estimate, 3,00; 95% CI, 1.82-4.28).

In comparison with hospitalized controls, CircCOVID participants had lower sleep regularity index (–19%; 95% CI, –20 to –16) and lower sleep efficiency (3.83 percentage points; 95% CI, 3.40-4.26).

Sleep disturbance after COVID hospitalization was also associated with lower lung function, from a 7% to a 14% reduction in predicted forced vital capacity, depending on which sleep measure used.

In an analysis of mediating factors active in the relationship between sleep disturbance and dyspnea/decreased lung function, the researchers found that reduced muscle function and anxiety, which are both recognized causes of dyspnea, could partially contribute to the association.

Regarding anxiety, and depending on the sleep metric, anxiety mediated 18%-39% of the effect of sleep disturbance on dyspnea, while muscle weakness mediated 27%-41% of this effect, reported Dr. Blaikley. Those with poor sleep quality were more likely to have mild, moderate, or severe anxiety, compared with participants who reported good-quality sleep.

A similar association was observed between anxiety and sleep quality deterioration.

“Two key questions are raised by our study: Do sleep interventions have a beneficial effect in post–COVID-19 syndrome, and are the associations causal?” asked Dr. Blaikley. “We hope to do a sleep intervention trial to answer these questions to explore if this is an effective treatment for post–COVID-19 syndrome.”

‘Underlying mechanisms remain unclear’

Amitava Banerjee, MD, professor of clinical data science and honorary consultant cardiologist, Institute of Health Informatics, UCL, London, welcomed the study but noted that it did not include nonhospitalized post-COVID patients.

“The majority of people with long COVID were not hospitalized for COVID, so the results may not be generalizable to this larger group,” she said in an interview. “Good-quality sleep is important for health and reduces risk of chronic diseases; quality of sleep is therefore likely to be important for those with long COVID in reducing their risk of chronic disease, but the role of sleep in the mechanism of long COVID needs further research.”

In a commentary also published in The Lancet Respiratory Medicine, W. Cameron McGuire, MD, pulmonary and critical care specialist from San Diego, California, and colleagues wrote: “These findings suggest that sleep disturbance, dyspnea, and anxiety are common after COVID-19 and are associated with one another, although the underlying mechanisms remain unclear.”

The commentators “applauded” the work overall but noted that the findings represent correlation rather than causation. “It is unclear whether sleep disturbance is causing anxiety or whether anxiety is contributing to poor sleep. ... For the sleep disturbances, increased BMI in the cohort reporting poor sleep, compared with those reporting good sleep might suggest underlying obstructive sleep apnea,” they wrote.

Dr. McGuire and colleagues added that many questions remain for researchers and clinicians, including “whether anxiety and dyspnoea are contributing to a low arousal threshold [disrupting sleep] ... whether the observed abnormalities (e.g., in dyspnea score) are clinically significant,” and “whether therapies such as glucocorticoids, anticoagulants, or previous vaccinations mitigate the observed abnormalities during COVID-19 recovery.”

Dr. Blaikley has received support to his institute from an MRC Transition Fellowship, Asthma + Lung UK, NIHR Manchester BRC, and UKRI; grants to his institution from the Small Business Research Initiative Home Spirometer and the National Institute of Academic Anaesthesia; and support from TEVA and Therakos for attending meetings. He is a committee member of the Royal Society of Medicine. A coauthor received funding from the National Institutes of Health and income for medical education from Zoll, Livanova, Jazz, and Eli Lilly. Dr. Banerjee is the chief investigator of STIMULATE-ICP (an NIHR-funded study) and has received research funding from AstraZeneca.

A version of this article first appeared on Medscape.com.

The new COVID-19 strain known as “Arcturus” has increased in the United States so much that it has been added to the Centers for Disease and Control’s watch list.

Officially labeled XBB.1.16, Arcturus is a subvariant of Omicron that was first seen in India and has been on the World Health Organization’s watchlist since the end of March. The CDC’s most recent update now lists Arcturus as causing 7% of U.S. coronavirus cases, landing it in second place behind its long-predominant Omicron cousin XBB.1.5, which causes 78% of cases.

Arcturus is more transmissible but not more dangerous than recent chart-topping strains, experts say.

“It is causing increasing case counts in certain parts of the world, including India. We’re not seeing high rates of XBB.1.16 yet in the United States, but it may become more prominent in coming weeks,” Mayo Clinic viral disease expert Matthew Binnicker, PhD, told The Seattle Times.

Arcturus has been causing a new symptom in children, Indian medical providers have reported.

“One new feature of cases caused by this variant is that it seems to be causing conjunctivitis, or red and itchy eyes, in young patients,” Dr. Binnicker said. “This is not something that we’ve seen with prior strains of the virus.”

More than 11,000 people in the United States remained hospitalized with COVID at the end of last week, and 1,327 people died of the virus last week, CDC data show. To date, 6.9 million people worldwide have died from COVID, the WHO says. Of those deaths, more than 1.1 million occurred in the U.S.

A version of this article originally appeared on WebMD.com.

The new COVID-19 strain known as “Arcturus” has increased in the United States so much that it has been added to the Centers for Disease and Control’s watch list.

Officially labeled XBB.1.16, Arcturus is a subvariant of Omicron that was first seen in India and has been on the World Health Organization’s watchlist since the end of March. The CDC’s most recent update now lists Arcturus as causing 7% of U.S. coronavirus cases, landing it in second place behind its long-predominant Omicron cousin XBB.1.5, which causes 78% of cases.

Arcturus is more transmissible but not more dangerous than recent chart-topping strains, experts say.

“It is causing increasing case counts in certain parts of the world, including India. We’re not seeing high rates of XBB.1.16 yet in the United States, but it may become more prominent in coming weeks,” Mayo Clinic viral disease expert Matthew Binnicker, PhD, told The Seattle Times.

Arcturus has been causing a new symptom in children, Indian medical providers have reported.

“One new feature of cases caused by this variant is that it seems to be causing conjunctivitis, or red and itchy eyes, in young patients,” Dr. Binnicker said. “This is not something that we’ve seen with prior strains of the virus.”

More than 11,000 people in the United States remained hospitalized with COVID at the end of last week, and 1,327 people died of the virus last week, CDC data show. To date, 6.9 million people worldwide have died from COVID, the WHO says. Of those deaths, more than 1.1 million occurred in the U.S.

A version of this article originally appeared on WebMD.com.

The new COVID-19 strain known as “Arcturus” has increased in the United States so much that it has been added to the Centers for Disease and Control’s watch list.

Officially labeled XBB.1.16, Arcturus is a subvariant of Omicron that was first seen in India and has been on the World Health Organization’s watchlist since the end of March. The CDC’s most recent update now lists Arcturus as causing 7% of U.S. coronavirus cases, landing it in second place behind its long-predominant Omicron cousin XBB.1.5, which causes 78% of cases.

Arcturus is more transmissible but not more dangerous than recent chart-topping strains, experts say.

“It is causing increasing case counts in certain parts of the world, including India. We’re not seeing high rates of XBB.1.16 yet in the United States, but it may become more prominent in coming weeks,” Mayo Clinic viral disease expert Matthew Binnicker, PhD, told The Seattle Times.

Arcturus has been causing a new symptom in children, Indian medical providers have reported.

“One new feature of cases caused by this variant is that it seems to be causing conjunctivitis, or red and itchy eyes, in young patients,” Dr. Binnicker said. “This is not something that we’ve seen with prior strains of the virus.”

More than 11,000 people in the United States remained hospitalized with COVID at the end of last week, and 1,327 people died of the virus last week, CDC data show. To date, 6.9 million people worldwide have died from COVID, the WHO says. Of those deaths, more than 1.1 million occurred in the U.S.

A version of this article originally appeared on WebMD.com.

The 30-second commercial, part of the government’s We Can Do This campaign, shows everyday people going about their lives, then reminds them that, “because COVID is still out there and so are you,” it might be time to update your vaccine.

But in real life, the message that COVID-19 is still a major concern is muffled if not absent for many. Many data tracking sources, both federal and others, are no longer reporting, as often, the number of COVID cases, hospitalizations, and deaths. 

The Department of Health & Human Services in February stopped updating its public COVID data site, instead directing all queries to the Centers for Disease Control and Prevention, which itself has been updating only weekly instead of daily since 2022. 

Nongovernmental sources, such as John Hopkins University, stopped reporting pandemic data in March, The New York Times also ended its COVID data-gathering project in March, stating that “the comprehensive real-time reporting that The Times has prioritized is no longer possible.” It will rely on reporting weekly CDC data moving forward. 

Along with the tracking sites, masking and social distancing mandates have mostly disappeared. President Joe Biden signed a bipartisan bill on April 10 that ended the national emergency for COVID. While some programs will stay in place for now, such as free vaccines, treatments, and tests, that too will go away when the federal public health emergency expires on May 11. The HHS already has issued its transition roadmap.

Many Americans, meanwhile, are still on the fence about the pandemic. A Gallup poll from March shows that about half of the American public say it’s over, and about half disagree. 

Are we closing up shop on COVID-19 too soon, or is it time? Not surprisingly, experts don’t agree. Some say the pandemic is now endemic – which broadly means the virus and its patterns are predictable and steady in designated regions – and that it’s critical to catch up on health needs neglected during the pandemic, such as screenings and other vaccinations

But others don’t think it’s reached that stage yet, saying that we are letting our guard down too soon and we can’t be blind to the possibility of another strong variant – or pandemic – emerging. Surveillance must continue, not decline, and be improved.
 

Time to move on?

In its transition roadmap released in February, the HHS notes that daily COVID reported cases are down over 90%, compared with the peak of the Omicron surge at the end of January 2022; deaths have declined by over 80%; and new hospitalizations caused by COVID have dropped by nearly 80%.

It is time to move on, said Ali Mokdad, PhD, a professor and chief strategy officer of population health at the Institute for Health Metrics and Evaluation at the University of Washington, Seattle. 

“Many people were delaying a lot of medical care, because they were afraid” during COVID’s height, he said, explaining that elective surgeries were postponed, prenatal care went down, as did screenings for blood pressure and diabetes.

His institute was tracking COVID projections every week but stopped in December.

As for emerging variants, “we haven’t seen a variant that scares us since Omicron” in November 2021, said Dr. Mokdad, who agrees that COVID is endemic now. The subvariants that followed it are very similar, and the current vaccines are working. 

“We can move on, but we cannot drop the ball on keeping an eye on the genetic sequencing of the virus,” he said. That will enable quick identification of new variants.

If a worrisome new variant does surface, Dr. Mokdad said, certain locations and resources will be able to gear up quickly, while others won’t be as fast, but overall the United States is in a much better position now. 

Amesh Adalja, MD, a senior scholar at the Johns Hopkins Center for Health Security, Baltimore, also believes the pandemic phase is behind us

“This can’t be an emergency in perpetuity,” he said “Just because something is not a pandemic [anymore] does not mean that all activities related to it cease.”

COVID is highly unlikely to overwhelm hospitals again, and that was the main reason for the emergency declaration, he said. 

“It’s not all or none – collapsing COVID-related [monitoring] activities into the routine monitoring that is done for other infectious disease should be seen as an achievement in taming the virus,” he said.
 

Not endemic yet

Closing up shop too early could mean we are blindsided, said Rajendram Rajnarayanan, PhD, an assistant dean of research and associate professor at the New York Institute of Technology College of Osteopathic Medicine at Arkansas State University in Jonesboro. 

Already, he said, large labs have closed or scaled down as testing demand has declined, and many centers that offered community testing have also closed. Plus, home test results are often not reported.

Continued monitoring is key, he said. “You have to maintain a base level of sequencing for new variants,” he said. “Right now, the variant that is ‘top dog’ in the world is XBB.1.16.” 

That’s an Omicron subvariant that the World Health Organization is currently keeping its eye on, according to a media briefing on March 29. There are about 800 sequences of it from 22 countries, mostly India, and it’s been in circulation a few months. 

Dr. Rajnarayanan said he’s not overly worried about this variant, but surveillance must continue. His own breakdown of XBB.1.16 found the subvariant in 27 countries, including the United States, as of April 10.

Ideally, Dr. Rajnarayanan would suggest four areas to keep focusing on, moving forward:

• Active, random surveillance for new variants, especially in hot spots.
• Hospital surveillance and surveillance of long-term care, especially in congregate settings where people can more easily spread the virus.
• Travelers’ surveillance, now at , according to the CDC.
• Surveillance of animals such as mink and deer, because these animals can not only pick up the virus, but the virus can mutate in the animals, which could then transmit it back to people. 

With less testing, baseline surveillance for new variants has declined. The other three surveillance areas need improvement, too, he said, as the reporting is often delayed. 

Continued surveillance is crucial, agreed Katelyn Jetelina, PhD, an epidemiologist and data scientist who publishes a newsletter, Your Local Epidemiologist, updating developments in COVID and other pressing health issues. 

“It’s a bit ironic to have a date for the end of a public health emergency; viruses don’t care about calendars,” said Dr. Jetelina, who is also director of population health analytics for the Meadows Mental Health Policy Institute. “COVID-19 is still going to be here, it’s still going to mutate,” and still cause grief for those affected. “I’m most concerned about our ability to track the virus. It’s not clear what surveillance we will still have in the states and around the globe.” 

It’s a bit ironic to have a date for the end of a public health emergency; viruses don’t care about calendars.

For surveillance, she calls wastewater monitoring “the lowest-hanging fruit.” That’s because it “is not based on bias testing and has the potential to help with other outbreaks, too.” Hospitalization data is also essential, she said, as that information is the basis for public health decisions on updated vaccines and other protective measures.

While Dr. Jetelina is hopeful that COVID will someday be universally viewed as endemic, with predictable seasonal patterns, “I don’t think we are there yet. We still need to approach this virus with humility; that’s at least what I will continue to do.”

Dr. Rajnarayanan agreed that the pandemic has not yet reached endemic phase, though the situation is much improved. “Our vaccines are still protecting us from severe disease and hospitalization, and [the antiviral drug] Paxlovid is a great tool that works.”
 

Keeping tabs

While some data tracking has been eliminated, not all has, or will be. The CDC, as mentioned, continues to post cases, deaths, and a daily average of new hospital admissions weekly. The WHO’s dashboard tracks deaths, cases, and vaccine doses globally. 

In March, the WHO updated its working definitions and tracking system for SARS-CoV-2 variants of concern and variants of interest, with goals of evaluating the sublineages independently and to classify new variants more clearly when that’s needed. 

Still, WHO is considering ending its declaration of COVID as a public health emergency of international concern sometime in 2023.

Some public companies are staying vigilant. The drugstore chain Walgreens said it plans to maintain its COVID-19 Index, which launched in January 2022. 

“Data regarding spread of variants is important to our understanding of viral transmission and, as new variants emerge, it will be critical to continue to track this information quickly to predict which communities are most at risk,” Anita Patel, PharmD, vice president of pharmacy services development for Walgreens, said in a statement.

The data also reinforces the importance of vaccinations and testing in helping to stop the spread of COVID-19, she said.

A version of this article first appeared on WebMD.com.

The 30-second commercial, part of the government’s We Can Do This campaign, shows everyday people going about their lives, then reminds them that, “because COVID is still out there and so are you,” it might be time to update your vaccine.

But in real life, the message that COVID-19 is still a major concern is muffled if not absent for many. Many data tracking sources, both federal and others, are no longer reporting, as often, the number of COVID cases, hospitalizations, and deaths. 

The Department of Health & Human Services in February stopped updating its public COVID data site, instead directing all queries to the Centers for Disease Control and Prevention, which itself has been updating only weekly instead of daily since 2022. 

Nongovernmental sources, such as John Hopkins University, stopped reporting pandemic data in March, The New York Times also ended its COVID data-gathering project in March, stating that “the comprehensive real-time reporting that The Times has prioritized is no longer possible.” It will rely on reporting weekly CDC data moving forward. 

Along with the tracking sites, masking and social distancing mandates have mostly disappeared. President Joe Biden signed a bipartisan bill on April 10 that ended the national emergency for COVID. While some programs will stay in place for now, such as free vaccines, treatments, and tests, that too will go away when the federal public health emergency expires on May 11. The HHS already has issued its transition roadmap.

Many Americans, meanwhile, are still on the fence about the pandemic. A Gallup poll from March shows that about half of the American public say it’s over, and about half disagree. 

Are we closing up shop on COVID-19 too soon, or is it time? Not surprisingly, experts don’t agree. Some say the pandemic is now endemic – which broadly means the virus and its patterns are predictable and steady in designated regions – and that it’s critical to catch up on health needs neglected during the pandemic, such as screenings and other vaccinations

But others don’t think it’s reached that stage yet, saying that we are letting our guard down too soon and we can’t be blind to the possibility of another strong variant – or pandemic – emerging. Surveillance must continue, not decline, and be improved.
 

Time to move on?

In its transition roadmap released in February, the HHS notes that daily COVID reported cases are down over 90%, compared with the peak of the Omicron surge at the end of January 2022; deaths have declined by over 80%; and new hospitalizations caused by COVID have dropped by nearly 80%.

It is time to move on, said Ali Mokdad, PhD, a professor and chief strategy officer of population health at the Institute for Health Metrics and Evaluation at the University of Washington, Seattle. 

“Many people were delaying a lot of medical care, because they were afraid” during COVID’s height, he said, explaining that elective surgeries were postponed, prenatal care went down, as did screenings for blood pressure and diabetes.

His institute was tracking COVID projections every week but stopped in December.

As for emerging variants, “we haven’t seen a variant that scares us since Omicron” in November 2021, said Dr. Mokdad, who agrees that COVID is endemic now. The subvariants that followed it are very similar, and the current vaccines are working. 

“We can move on, but we cannot drop the ball on keeping an eye on the genetic sequencing of the virus,” he said. That will enable quick identification of new variants.

If a worrisome new variant does surface, Dr. Mokdad said, certain locations and resources will be able to gear up quickly, while others won’t be as fast, but overall the United States is in a much better position now. 

Amesh Adalja, MD, a senior scholar at the Johns Hopkins Center for Health Security, Baltimore, also believes the pandemic phase is behind us

“This can’t be an emergency in perpetuity,” he said “Just because something is not a pandemic [anymore] does not mean that all activities related to it cease.”

COVID is highly unlikely to overwhelm hospitals again, and that was the main reason for the emergency declaration, he said. 

“It’s not all or none – collapsing COVID-related [monitoring] activities into the routine monitoring that is done for other infectious disease should be seen as an achievement in taming the virus,” he said.
 

Not endemic yet

Closing up shop too early could mean we are blindsided, said Rajendram Rajnarayanan, PhD, an assistant dean of research and associate professor at the New York Institute of Technology College of Osteopathic Medicine at Arkansas State University in Jonesboro. 

Already, he said, large labs have closed or scaled down as testing demand has declined, and many centers that offered community testing have also closed. Plus, home test results are often not reported.

Continued monitoring is key, he said. “You have to maintain a base level of sequencing for new variants,” he said. “Right now, the variant that is ‘top dog’ in the world is XBB.1.16.” 

That’s an Omicron subvariant that the World Health Organization is currently keeping its eye on, according to a media briefing on March 29. There are about 800 sequences of it from 22 countries, mostly India, and it’s been in circulation a few months. 

Dr. Rajnarayanan said he’s not overly worried about this variant, but surveillance must continue. His own breakdown of XBB.1.16 found the subvariant in 27 countries, including the United States, as of April 10.

Ideally, Dr. Rajnarayanan would suggest four areas to keep focusing on, moving forward:

• Active, random surveillance for new variants, especially in hot spots.
• Hospital surveillance and surveillance of long-term care, especially in congregate settings where people can more easily spread the virus.
• Travelers’ surveillance, now at , according to the CDC.
• Surveillance of animals such as mink and deer, because these animals can not only pick up the virus, but the virus can mutate in the animals, which could then transmit it back to people. 

With less testing, baseline surveillance for new variants has declined. The other three surveillance areas need improvement, too, he said, as the reporting is often delayed. 

Continued surveillance is crucial, agreed Katelyn Jetelina, PhD, an epidemiologist and data scientist who publishes a newsletter, Your Local Epidemiologist, updating developments in COVID and other pressing health issues. 

“It’s a bit ironic to have a date for the end of a public health emergency; viruses don’t care about calendars,” said Dr. Jetelina, who is also director of population health analytics for the Meadows Mental Health Policy Institute. “COVID-19 is still going to be here, it’s still going to mutate,” and still cause grief for those affected. “I’m most concerned about our ability to track the virus. It’s not clear what surveillance we will still have in the states and around the globe.” 

It’s a bit ironic to have a date for the end of a public health emergency; viruses don’t care about calendars.

For surveillance, she calls wastewater monitoring “the lowest-hanging fruit.” That’s because it “is not based on bias testing and has the potential to help with other outbreaks, too.” Hospitalization data is also essential, she said, as that information is the basis for public health decisions on updated vaccines and other protective measures.

While Dr. Jetelina is hopeful that COVID will someday be universally viewed as endemic, with predictable seasonal patterns, “I don’t think we are there yet. We still need to approach this virus with humility; that’s at least what I will continue to do.”

Dr. Rajnarayanan agreed that the pandemic has not yet reached endemic phase, though the situation is much improved. “Our vaccines are still protecting us from severe disease and hospitalization, and [the antiviral drug] Paxlovid is a great tool that works.”
 

Keeping tabs

While some data tracking has been eliminated, not all has, or will be. The CDC, as mentioned, continues to post cases, deaths, and a daily average of new hospital admissions weekly. The WHO’s dashboard tracks deaths, cases, and vaccine doses globally. 

In March, the WHO updated its working definitions and tracking system for SARS-CoV-2 variants of concern and variants of interest, with goals of evaluating the sublineages independently and to classify new variants more clearly when that’s needed. 

Still, WHO is considering ending its declaration of COVID as a public health emergency of international concern sometime in 2023.

Some public companies are staying vigilant. The drugstore chain Walgreens said it plans to maintain its COVID-19 Index, which launched in January 2022. 

“Data regarding spread of variants is important to our understanding of viral transmission and, as new variants emerge, it will be critical to continue to track this information quickly to predict which communities are most at risk,” Anita Patel, PharmD, vice president of pharmacy services development for Walgreens, said in a statement.

The data also reinforces the importance of vaccinations and testing in helping to stop the spread of COVID-19, she said.

A version of this article first appeared on WebMD.com.

The 30-second commercial, part of the government’s We Can Do This campaign, shows everyday people going about their lives, then reminds them that, “because COVID is still out there and so are you,” it might be time to update your vaccine.

But in real life, the message that COVID-19 is still a major concern is muffled if not absent for many. Many data tracking sources, both federal and others, are no longer reporting, as often, the number of COVID cases, hospitalizations, and deaths. 

The Department of Health & Human Services in February stopped updating its public COVID data site, instead directing all queries to the Centers for Disease Control and Prevention, which itself has been updating only weekly instead of daily since 2022. 

Nongovernmental sources, such as John Hopkins University, stopped reporting pandemic data in March, The New York Times also ended its COVID data-gathering project in March, stating that “the comprehensive real-time reporting that The Times has prioritized is no longer possible.” It will rely on reporting weekly CDC data moving forward. 

Along with the tracking sites, masking and social distancing mandates have mostly disappeared. President Joe Biden signed a bipartisan bill on April 10 that ended the national emergency for COVID. While some programs will stay in place for now, such as free vaccines, treatments, and tests, that too will go away when the federal public health emergency expires on May 11. The HHS already has issued its transition roadmap.

Many Americans, meanwhile, are still on the fence about the pandemic. A Gallup poll from March shows that about half of the American public say it’s over, and about half disagree. 

Are we closing up shop on COVID-19 too soon, or is it time? Not surprisingly, experts don’t agree. Some say the pandemic is now endemic – which broadly means the virus and its patterns are predictable and steady in designated regions – and that it’s critical to catch up on health needs neglected during the pandemic, such as screenings and other vaccinations

But others don’t think it’s reached that stage yet, saying that we are letting our guard down too soon and we can’t be blind to the possibility of another strong variant – or pandemic – emerging. Surveillance must continue, not decline, and be improved.
 

Time to move on?

In its transition roadmap released in February, the HHS notes that daily COVID reported cases are down over 90%, compared with the peak of the Omicron surge at the end of January 2022; deaths have declined by over 80%; and new hospitalizations caused by COVID have dropped by nearly 80%.

It is time to move on, said Ali Mokdad, PhD, a professor and chief strategy officer of population health at the Institute for Health Metrics and Evaluation at the University of Washington, Seattle. 

“Many people were delaying a lot of medical care, because they were afraid” during COVID’s height, he said, explaining that elective surgeries were postponed, prenatal care went down, as did screenings for blood pressure and diabetes.

His institute was tracking COVID projections every week but stopped in December.

As for emerging variants, “we haven’t seen a variant that scares us since Omicron” in November 2021, said Dr. Mokdad, who agrees that COVID is endemic now. The subvariants that followed it are very similar, and the current vaccines are working. 

“We can move on, but we cannot drop the ball on keeping an eye on the genetic sequencing of the virus,” he said. That will enable quick identification of new variants.

If a worrisome new variant does surface, Dr. Mokdad said, certain locations and resources will be able to gear up quickly, while others won’t be as fast, but overall the United States is in a much better position now. 

Amesh Adalja, MD, a senior scholar at the Johns Hopkins Center for Health Security, Baltimore, also believes the pandemic phase is behind us

“This can’t be an emergency in perpetuity,” he said “Just because something is not a pandemic [anymore] does not mean that all activities related to it cease.”

COVID is highly unlikely to overwhelm hospitals again, and that was the main reason for the emergency declaration, he said. 

“It’s not all or none – collapsing COVID-related [monitoring] activities into the routine monitoring that is done for other infectious disease should be seen as an achievement in taming the virus,” he said.
 

Not endemic yet

Closing up shop too early could mean we are blindsided, said Rajendram Rajnarayanan, PhD, an assistant dean of research and associate professor at the New York Institute of Technology College of Osteopathic Medicine at Arkansas State University in Jonesboro. 

Already, he said, large labs have closed or scaled down as testing demand has declined, and many centers that offered community testing have also closed. Plus, home test results are often not reported.

Continued monitoring is key, he said. “You have to maintain a base level of sequencing for new variants,” he said. “Right now, the variant that is ‘top dog’ in the world is XBB.1.16.” 

That’s an Omicron subvariant that the World Health Organization is currently keeping its eye on, according to a media briefing on March 29. There are about 800 sequences of it from 22 countries, mostly India, and it’s been in circulation a few months. 

Dr. Rajnarayanan said he’s not overly worried about this variant, but surveillance must continue. His own breakdown of XBB.1.16 found the subvariant in 27 countries, including the United States, as of April 10.

Ideally, Dr. Rajnarayanan would suggest four areas to keep focusing on, moving forward:

• Active, random surveillance for new variants, especially in hot spots.
• Hospital surveillance and surveillance of long-term care, especially in congregate settings where people can more easily spread the virus.
• Travelers’ surveillance, now at , according to the CDC.
• Surveillance of animals such as mink and deer, because these animals can not only pick up the virus, but the virus can mutate in the animals, which could then transmit it back to people. 

With less testing, baseline surveillance for new variants has declined. The other three surveillance areas need improvement, too, he said, as the reporting is often delayed. 

Continued surveillance is crucial, agreed Katelyn Jetelina, PhD, an epidemiologist and data scientist who publishes a newsletter, Your Local Epidemiologist, updating developments in COVID and other pressing health issues. 

“It’s a bit ironic to have a date for the end of a public health emergency; viruses don’t care about calendars,” said Dr. Jetelina, who is also director of population health analytics for the Meadows Mental Health Policy Institute. “COVID-19 is still going to be here, it’s still going to mutate,” and still cause grief for those affected. “I’m most concerned about our ability to track the virus. It’s not clear what surveillance we will still have in the states and around the globe.” 

It’s a bit ironic to have a date for the end of a public health emergency; viruses don’t care about calendars.

For surveillance, she calls wastewater monitoring “the lowest-hanging fruit.” That’s because it “is not based on bias testing and has the potential to help with other outbreaks, too.” Hospitalization data is also essential, she said, as that information is the basis for public health decisions on updated vaccines and other protective measures.

While Dr. Jetelina is hopeful that COVID will someday be universally viewed as endemic, with predictable seasonal patterns, “I don’t think we are there yet. We still need to approach this virus with humility; that’s at least what I will continue to do.”

Dr. Rajnarayanan agreed that the pandemic has not yet reached endemic phase, though the situation is much improved. “Our vaccines are still protecting us from severe disease and hospitalization, and [the antiviral drug] Paxlovid is a great tool that works.”
 

Keeping tabs

While some data tracking has been eliminated, not all has, or will be. The CDC, as mentioned, continues to post cases, deaths, and a daily average of new hospital admissions weekly. The WHO’s dashboard tracks deaths, cases, and vaccine doses globally. 

In March, the WHO updated its working definitions and tracking system for SARS-CoV-2 variants of concern and variants of interest, with goals of evaluating the sublineages independently and to classify new variants more clearly when that’s needed. 

Still, WHO is considering ending its declaration of COVID as a public health emergency of international concern sometime in 2023.

Some public companies are staying vigilant. The drugstore chain Walgreens said it plans to maintain its COVID-19 Index, which launched in January 2022. 

“Data regarding spread of variants is important to our understanding of viral transmission and, as new variants emerge, it will be critical to continue to track this information quickly to predict which communities are most at risk,” Anita Patel, PharmD, vice president of pharmacy services development for Walgreens, said in a statement.

The data also reinforces the importance of vaccinations and testing in helping to stop the spread of COVID-19, she said.

A version of this article first appeared on WebMD.com.

Life expectancy in New York City fell to 78 years from 2019 to 2020, a 4.6-year drop mostly caused by the COVID-19 pandemic, NYC Health said in releasing its annual summary of vital statistics. 

Non-White demographic groups had the highest drops. Life expectancy fell to 73 years for Black New Yorkers (a 5.5-year drop from 2019) and 77.3 years for Hispanic/Latino New Yorkers (a 6-year drop.) For White New Yorkers life expectancy only fell to 80.1 years (about a 3-year drop.)

Overall, the city had a mortality rate of 241.3 deaths per 100,000 population in 2020. That’s even higher than the 228.9 deaths per 100,000 reported during the 2018 influenza pandemic, NYC Health said in a news release. 

“The sharp decline in life expectancy from 2019 was largely due to the COVID-19 pandemic,” said NYC Health Commissioner Ashwin Vasan, MD.

Another factor was a 42.2% rise in unintentional drug overdoses from 2019 to 2020. Again, racial disparities were highlighted, with the drug-related death rate highest among Black New Yorkers.

The pandemic also affected the premature death rate, meaning deaths before age 65. That rate went up 48.8% from 2019 to 2020. In the 8 previous years, from 2011 to 2019, it fell 8.6%“New Yorkers’ lifespans are falling, on top of years of relative flattening before COVID, and that cannot continue,” Dr. Vasan said in a news release. 

“It is the great challenge of our time, our city, and our Department to lay out an agenda for the next era of public health, to reverse these trends, and set us out on a new path where all New Yorkers can lead healthier, longer lives,” Dr. Vasan said.

A version of this article first appeared on WebMD.com.

Life expectancy in New York City fell to 78 years from 2019 to 2020, a 4.6-year drop mostly caused by the COVID-19 pandemic, NYC Health said in releasing its annual summary of vital statistics. 

Non-White demographic groups had the highest drops. Life expectancy fell to 73 years for Black New Yorkers (a 5.5-year drop from 2019) and 77.3 years for Hispanic/Latino New Yorkers (a 6-year drop.) For White New Yorkers life expectancy only fell to 80.1 years (about a 3-year drop.)

Overall, the city had a mortality rate of 241.3 deaths per 100,000 population in 2020. That’s even higher than the 228.9 deaths per 100,000 reported during the 2018 influenza pandemic, NYC Health said in a news release. 

“The sharp decline in life expectancy from 2019 was largely due to the COVID-19 pandemic,” said NYC Health Commissioner Ashwin Vasan, MD.

Another factor was a 42.2% rise in unintentional drug overdoses from 2019 to 2020. Again, racial disparities were highlighted, with the drug-related death rate highest among Black New Yorkers.

The pandemic also affected the premature death rate, meaning deaths before age 65. That rate went up 48.8% from 2019 to 2020. In the 8 previous years, from 2011 to 2019, it fell 8.6%“New Yorkers’ lifespans are falling, on top of years of relative flattening before COVID, and that cannot continue,” Dr. Vasan said in a news release. 

“It is the great challenge of our time, our city, and our Department to lay out an agenda for the next era of public health, to reverse these trends, and set us out on a new path where all New Yorkers can lead healthier, longer lives,” Dr. Vasan said.

A version of this article first appeared on WebMD.com.

Life expectancy in New York City fell to 78 years from 2019 to 2020, a 4.6-year drop mostly caused by the COVID-19 pandemic, NYC Health said in releasing its annual summary of vital statistics. 

Non-White demographic groups had the highest drops. Life expectancy fell to 73 years for Black New Yorkers (a 5.5-year drop from 2019) and 77.3 years for Hispanic/Latino New Yorkers (a 6-year drop.) For White New Yorkers life expectancy only fell to 80.1 years (about a 3-year drop.)

Overall, the city had a mortality rate of 241.3 deaths per 100,000 population in 2020. That’s even higher than the 228.9 deaths per 100,000 reported during the 2018 influenza pandemic, NYC Health said in a news release. 

“The sharp decline in life expectancy from 2019 was largely due to the COVID-19 pandemic,” said NYC Health Commissioner Ashwin Vasan, MD.

Another factor was a 42.2% rise in unintentional drug overdoses from 2019 to 2020. Again, racial disparities were highlighted, with the drug-related death rate highest among Black New Yorkers.

The pandemic also affected the premature death rate, meaning deaths before age 65. That rate went up 48.8% from 2019 to 2020. In the 8 previous years, from 2011 to 2019, it fell 8.6%“New Yorkers’ lifespans are falling, on top of years of relative flattening before COVID, and that cannot continue,” Dr. Vasan said in a news release. 

“It is the great challenge of our time, our city, and our Department to lay out an agenda for the next era of public health, to reverse these trends, and set us out on a new path where all New Yorkers can lead healthier, longer lives,” Dr. Vasan said.

A version of this article first appeared on WebMD.com.

Filmmaker Gez Medinger and immunologist Danny Altmann have been dubbed by British media as “COVID’s odd couple,” and they don’t mind at all. Discussing their recent book, The Long COVID Handbook, the authors lean into their animated roles: Medinger is a passionate patient-researcher and “guinea pig” (his words) in search of his own healing, and Altmann is a no-nonsense, data-driven scientist and “Professor Boring” (as he puts it).

And the message they have about the impact of long COVID is stunning.

“The clinical burden [of long COVID] is somewhere on par with the whole of heart disease all over again, or the whole of oncology all over again, which are our biggest clinical bills concurrently,” Altmann said.

The pair met early in the pandemic, after Medinger became infected during the first wave and interviewed Altmann for his YouTube channel, which has more than 5 million views. 

“Danny was one of the first people from the medical establishment to sort of stand up on the parapet and wave a flag and say, ‘Hey, guys, there’s a problem here.’ And that was incredibly validating for 2 million people in the U.K. alone who were suffering with long COVID,” Medinger said. 

Their relationship works, not just for publishing one of the first definitive guides to long COVID, but also as a model for how patients with lived experiences can lead the way in medicine – from giving the condition its name to driving the medical establishment for recognition, clinical research, and therapeutic answers. 

With Altmann currently leading a major research project at Imperial College London on long COVID and Medinger’s social media platform and communication skills, they’re both advancing the world’s understanding of the disease in their own way.

“We’re now more than 3 years into this completely mysterious, uncharted disease process with a whole globe full of really desperate people,” said Altmann. “It’s a living, organic thing, and yet that also demands some kind of order and collation and pulling together into some kind of sense. So I was very pleased when Gez approached me to help him with the book.”

In it, they translate everything they’ve learned about the condition that’s “scattered in 100,000 places around the globe” into a digestible format. It tells two sides of the same story: the anecdotal experiences Medinger has undergone or observed in the long COVID community through more than a dozen of his own patient-led studies, as well the hard science and research that’s amassing in the medical world. 

In an interview, Medinger and Altmann discussed how their book can help both patients and clinicians, and the next steps needed to combat long COVID.
 

What are the book’s key takeaways for you?

Medinger: “I would say we put together an incredibly comprehensive couple of chapters on the hypotheses, big picture, what’s causing long COVID. And then the nitty-gritty research for everything that we’ve found out that is going on. ... And the other part of the book that I think is particularly important, beyond the tips for managing symptoms, is the content on mental health and the impact on your emotional state and your capacity and just how huge that is. ... That has been the most powerful thing for patients when they’ve read it. And they’ve said that they’ve just been crying all the way through those chapters because suddenly they feel heard and seen.”

Altmann: “Obviously, you’d expect me to say that the parts of the book that I love most are the kind of hard-nosed, medical, mechanistic bits. ... We’ve got 150 million-plus desperate people deciding or not deciding to go and see their general practitioner, getting a fair hearing or not getting a fair hearing. And the poor doctor has never learned this in medical school, has never read a textbook on it, and hasn’t a clue what’s coming through the door. 

How are they expected to know what to do? So I think the least we can do in some of those chapters is feed into their knowledge of general medicine and give them some clues. ... I think if we can explain to people what might be going on in them, and to their doctors, what on earth they might do about it, what kind of tests they might order, that helps a bit.”
 

How did you balance the more controversial parts of the book, including the chapter about so-called “treatments”? For instance, the book recounts Gez’s harrowing experience with ivermectin as a frightening warning. But Danny, you were nervous about even mentioning unproven and potentially dangerous treatments as things people have tried and have looked into. 

Medinger: “We had to try and work out how to handle the topic, how to handle those points of view, whilst at the same time still being informative. I think the book is stronger for that chapter, too. The other thing would certainly have been to just not address the subject, but it’s one of the things that people want to know the most about. And there’s also a lot of bad information floating around out there about certain treatments. Ivermectin, for example, and this is what happened to me when I tried it. ‘Don’t do it. It’s not recommended. Please don’t.’ 

I think it was also very important to include because that cautionary tale really applies to every single one of those treatments that people might be hearing about that hasn’t been backed up by efficacy and safety studies.”

Altmann: “I think Gez has been quite diplomatic. That chapter was, I think, a testament to the power of the book. And the biggest test of our marriage as ‘the odd couple.’ Because when I first read the first draft of what Gez had written, I said, ‘my name can’t even be on this book. Otherwise, I’ll be sacked.’ 

And we had to find marriage counseling after that, and a way back to write a version of that chapter that expressed both halves of those concerns in a way that did justice to those different viewpoints. And I think that makes it quite a strong chapter.”
 

What do you think are the most urgent next steps in the search for solving long COVID?

Medinger: “I would personally like to try and get some sort of answer on viral persistence. ... If there’s one thing that feels like it would be treatable in theory, and would make sense why we’re still getting all of these symptoms this whole time later, it’s that, so I would like to try and establish or eliminate viral persistence. So if you gave me Elon Musk’s wealth, that’s what I would throw a bunch of the money at, trying to either eliminate or establish that. 

And then, you know, the other important thing is a diagnostic test. Danny always talks about how important it is. Once you have that, it helps you suddenly open the doors to all these other things that you can do. And treatment trials. Let’s throw some meds at this so that we have an educated guess at what might work and put them into high-powered, randomized, controlled trials and see if anything comes out because from the patient perspective, I don’t think any of us wants to wait for 5 years for that stuff to start happening.”

Altmann: “I completely agree. If you go to a website, like clinicaltrials.gov, you’ll find an immense number of clinical trials on COVID. There isn’t really a shortage of them, some of them better-powered to get an answer than others.”

How do you think public policy needs to adapt for long COVID, including social safety nets such as workers’ compensation and disability benefits?

Medinger: “In terms of public policy, what I would like would be some public acknowledgment that it’s real from government sources. Just the acknowledgment that it’s real and it remains a risk even now.”

Altmann: “Nobody in politics asks my opinion. I think they’d hate to hear it. Because if I went to see them and said, well, actually, if you thought the COVID pandemic was bad, wait till you see what’s on the table now. We’ve created a disabled population in our country of 2 million, at least a portion if not more of people who are not fully contributory to the workforce anymore ... [with] legal wrangles about retirement and health insurance and pensions, and a human right to adequate health care. Which means, ideally, a purpose-built clinic where they can have their respiratory opinion and their rheumatology opinion and their endocrine opinion and their neurology opinion, all under one roof.”

You’ve both shown so much optimism. Why is that?

Altmann: “I’ve been an immunologist for a long time now, and written all my decades of grant applications, where as a community we made what, at the time, were kind of wild promises and wildly optimistic projections of how our knowledge of tumor immunity would revolutionize cancer care, and how knowledge of autoimmunity would revolutionize care of all the autoimmune diseases. 

And weirdly almost every word we wrote over those 25 or 30 years came true. Cancer immunotherapy was revolutionized, and biologics for diabetes, multiple sclerosis, and arthritis were revolutionized. So if I have faith that those things came true, I have complete faith in this as well.”

Medinger: “From the patient perspective, what I would say is that we are seeing people who’ve been ill for more than 2 years recover. People are suddenly turning the corner when they might not have expected to. 

And while we don’t quite know exactly why yet, and it’s not everyone, every single time I hear the story of someone saying, ‘I’m pretty much back to where I was, I feel like I’ve recovered,’ I feel great. Even if I haven’t. Because I know that every single time I hear someone say that, that just increases the probability that I will, too.”
 

A version of this article first appeared on WebMD.com.

Filmmaker Gez Medinger and immunologist Danny Altmann have been dubbed by British media as “COVID’s odd couple,” and they don’t mind at all. Discussing their recent book, The Long COVID Handbook, the authors lean into their animated roles: Medinger is a passionate patient-researcher and “guinea pig” (his words) in search of his own healing, and Altmann is a no-nonsense, data-driven scientist and “Professor Boring” (as he puts it).

And the message they have about the impact of long COVID is stunning.

“The clinical burden [of long COVID] is somewhere on par with the whole of heart disease all over again, or the whole of oncology all over again, which are our biggest clinical bills concurrently,” Altmann said.

The pair met early in the pandemic, after Medinger became infected during the first wave and interviewed Altmann for his YouTube channel, which has more than 5 million views. 

“Danny was one of the first people from the medical establishment to sort of stand up on the parapet and wave a flag and say, ‘Hey, guys, there’s a problem here.’ And that was incredibly validating for 2 million people in the U.K. alone who were suffering with long COVID,” Medinger said. 

Their relationship works, not just for publishing one of the first definitive guides to long COVID, but also as a model for how patients with lived experiences can lead the way in medicine – from giving the condition its name to driving the medical establishment for recognition, clinical research, and therapeutic answers. 

With Altmann currently leading a major research project at Imperial College London on long COVID and Medinger’s social media platform and communication skills, they’re both advancing the world’s understanding of the disease in their own way.

“We’re now more than 3 years into this completely mysterious, uncharted disease process with a whole globe full of really desperate people,” said Altmann. “It’s a living, organic thing, and yet that also demands some kind of order and collation and pulling together into some kind of sense. So I was very pleased when Gez approached me to help him with the book.”

In it, they translate everything they’ve learned about the condition that’s “scattered in 100,000 places around the globe” into a digestible format. It tells two sides of the same story: the anecdotal experiences Medinger has undergone or observed in the long COVID community through more than a dozen of his own patient-led studies, as well the hard science and research that’s amassing in the medical world. 

In an interview, Medinger and Altmann discussed how their book can help both patients and clinicians, and the next steps needed to combat long COVID.
 

What are the book’s key takeaways for you?

Medinger: “I would say we put together an incredibly comprehensive couple of chapters on the hypotheses, big picture, what’s causing long COVID. And then the nitty-gritty research for everything that we’ve found out that is going on. ... And the other part of the book that I think is particularly important, beyond the tips for managing symptoms, is the content on mental health and the impact on your emotional state and your capacity and just how huge that is. ... That has been the most powerful thing for patients when they’ve read it. And they’ve said that they’ve just been crying all the way through those chapters because suddenly they feel heard and seen.”

Altmann: “Obviously, you’d expect me to say that the parts of the book that I love most are the kind of hard-nosed, medical, mechanistic bits. ... We’ve got 150 million-plus desperate people deciding or not deciding to go and see their general practitioner, getting a fair hearing or not getting a fair hearing. And the poor doctor has never learned this in medical school, has never read a textbook on it, and hasn’t a clue what’s coming through the door. 

How are they expected to know what to do? So I think the least we can do in some of those chapters is feed into their knowledge of general medicine and give them some clues. ... I think if we can explain to people what might be going on in them, and to their doctors, what on earth they might do about it, what kind of tests they might order, that helps a bit.”
 

How did you balance the more controversial parts of the book, including the chapter about so-called “treatments”? For instance, the book recounts Gez’s harrowing experience with ivermectin as a frightening warning. But Danny, you were nervous about even mentioning unproven and potentially dangerous treatments as things people have tried and have looked into. 

Medinger: “We had to try and work out how to handle the topic, how to handle those points of view, whilst at the same time still being informative. I think the book is stronger for that chapter, too. The other thing would certainly have been to just not address the subject, but it’s one of the things that people want to know the most about. And there’s also a lot of bad information floating around out there about certain treatments. Ivermectin, for example, and this is what happened to me when I tried it. ‘Don’t do it. It’s not recommended. Please don’t.’ 

I think it was also very important to include because that cautionary tale really applies to every single one of those treatments that people might be hearing about that hasn’t been backed up by efficacy and safety studies.”

Altmann: “I think Gez has been quite diplomatic. That chapter was, I think, a testament to the power of the book. And the biggest test of our marriage as ‘the odd couple.’ Because when I first read the first draft of what Gez had written, I said, ‘my name can’t even be on this book. Otherwise, I’ll be sacked.’ 

And we had to find marriage counseling after that, and a way back to write a version of that chapter that expressed both halves of those concerns in a way that did justice to those different viewpoints. And I think that makes it quite a strong chapter.”
 

What do you think are the most urgent next steps in the search for solving long COVID?

Medinger: “I would personally like to try and get some sort of answer on viral persistence. ... If there’s one thing that feels like it would be treatable in theory, and would make sense why we’re still getting all of these symptoms this whole time later, it’s that, so I would like to try and establish or eliminate viral persistence. So if you gave me Elon Musk’s wealth, that’s what I would throw a bunch of the money at, trying to either eliminate or establish that. 

And then, you know, the other important thing is a diagnostic test. Danny always talks about how important it is. Once you have that, it helps you suddenly open the doors to all these other things that you can do. And treatment trials. Let’s throw some meds at this so that we have an educated guess at what might work and put them into high-powered, randomized, controlled trials and see if anything comes out because from the patient perspective, I don’t think any of us wants to wait for 5 years for that stuff to start happening.”

Altmann: “I completely agree. If you go to a website, like clinicaltrials.gov, you’ll find an immense number of clinical trials on COVID. There isn’t really a shortage of them, some of them better-powered to get an answer than others.”

How do you think public policy needs to adapt for long COVID, including social safety nets such as workers’ compensation and disability benefits?

Medinger: “In terms of public policy, what I would like would be some public acknowledgment that it’s real from government sources. Just the acknowledgment that it’s real and it remains a risk even now.”

Altmann: “Nobody in politics asks my opinion. I think they’d hate to hear it. Because if I went to see them and said, well, actually, if you thought the COVID pandemic was bad, wait till you see what’s on the table now. We’ve created a disabled population in our country of 2 million, at least a portion if not more of people who are not fully contributory to the workforce anymore ... [with] legal wrangles about retirement and health insurance and pensions, and a human right to adequate health care. Which means, ideally, a purpose-built clinic where they can have their respiratory opinion and their rheumatology opinion and their endocrine opinion and their neurology opinion, all under one roof.”

You’ve both shown so much optimism. Why is that?

Altmann: “I’ve been an immunologist for a long time now, and written all my decades of grant applications, where as a community we made what, at the time, were kind of wild promises and wildly optimistic projections of how our knowledge of tumor immunity would revolutionize cancer care, and how knowledge of autoimmunity would revolutionize care of all the autoimmune diseases. 

And weirdly almost every word we wrote over those 25 or 30 years came true. Cancer immunotherapy was revolutionized, and biologics for diabetes, multiple sclerosis, and arthritis were revolutionized. So if I have faith that those things came true, I have complete faith in this as well.”

Medinger: “From the patient perspective, what I would say is that we are seeing people who’ve been ill for more than 2 years recover. People are suddenly turning the corner when they might not have expected to. 

And while we don’t quite know exactly why yet, and it’s not everyone, every single time I hear the story of someone saying, ‘I’m pretty much back to where I was, I feel like I’ve recovered,’ I feel great. Even if I haven’t. Because I know that every single time I hear someone say that, that just increases the probability that I will, too.”
 

A version of this article first appeared on WebMD.com.

Filmmaker Gez Medinger and immunologist Danny Altmann have been dubbed by British media as “COVID’s odd couple,” and they don’t mind at all. Discussing their recent book, The Long COVID Handbook, the authors lean into their animated roles: Medinger is a passionate patient-researcher and “guinea pig” (his words) in search of his own healing, and Altmann is a no-nonsense, data-driven scientist and “Professor Boring” (as he puts it).

And the message they have about the impact of long COVID is stunning.

“The clinical burden [of long COVID] is somewhere on par with the whole of heart disease all over again, or the whole of oncology all over again, which are our biggest clinical bills concurrently,” Altmann said.

The pair met early in the pandemic, after Medinger became infected during the first wave and interviewed Altmann for his YouTube channel, which has more than 5 million views. 

“Danny was one of the first people from the medical establishment to sort of stand up on the parapet and wave a flag and say, ‘Hey, guys, there’s a problem here.’ And that was incredibly validating for 2 million people in the U.K. alone who were suffering with long COVID,” Medinger said. 

Their relationship works, not just for publishing one of the first definitive guides to long COVID, but also as a model for how patients with lived experiences can lead the way in medicine – from giving the condition its name to driving the medical establishment for recognition, clinical research, and therapeutic answers. 

With Altmann currently leading a major research project at Imperial College London on long COVID and Medinger’s social media platform and communication skills, they’re both advancing the world’s understanding of the disease in their own way.

“We’re now more than 3 years into this completely mysterious, uncharted disease process with a whole globe full of really desperate people,” said Altmann. “It’s a living, organic thing, and yet that also demands some kind of order and collation and pulling together into some kind of sense. So I was very pleased when Gez approached me to help him with the book.”

In it, they translate everything they’ve learned about the condition that’s “scattered in 100,000 places around the globe” into a digestible format. It tells two sides of the same story: the anecdotal experiences Medinger has undergone or observed in the long COVID community through more than a dozen of his own patient-led studies, as well the hard science and research that’s amassing in the medical world. 

In an interview, Medinger and Altmann discussed how their book can help both patients and clinicians, and the next steps needed to combat long COVID.
 

What are the book’s key takeaways for you?

Medinger: “I would say we put together an incredibly comprehensive couple of chapters on the hypotheses, big picture, what’s causing long COVID. And then the nitty-gritty research for everything that we’ve found out that is going on. ... And the other part of the book that I think is particularly important, beyond the tips for managing symptoms, is the content on mental health and the impact on your emotional state and your capacity and just how huge that is. ... That has been the most powerful thing for patients when they’ve read it. And they’ve said that they’ve just been crying all the way through those chapters because suddenly they feel heard and seen.”

Altmann: “Obviously, you’d expect me to say that the parts of the book that I love most are the kind of hard-nosed, medical, mechanistic bits. ... We’ve got 150 million-plus desperate people deciding or not deciding to go and see their general practitioner, getting a fair hearing or not getting a fair hearing. And the poor doctor has never learned this in medical school, has never read a textbook on it, and hasn’t a clue what’s coming through the door. 

How are they expected to know what to do? So I think the least we can do in some of those chapters is feed into their knowledge of general medicine and give them some clues. ... I think if we can explain to people what might be going on in them, and to their doctors, what on earth they might do about it, what kind of tests they might order, that helps a bit.”
 

How did you balance the more controversial parts of the book, including the chapter about so-called “treatments”? For instance, the book recounts Gez’s harrowing experience with ivermectin as a frightening warning. But Danny, you were nervous about even mentioning unproven and potentially dangerous treatments as things people have tried and have looked into. 

Medinger: “We had to try and work out how to handle the topic, how to handle those points of view, whilst at the same time still being informative. I think the book is stronger for that chapter, too. The other thing would certainly have been to just not address the subject, but it’s one of the things that people want to know the most about. And there’s also a lot of bad information floating around out there about certain treatments. Ivermectin, for example, and this is what happened to me when I tried it. ‘Don’t do it. It’s not recommended. Please don’t.’ 

I think it was also very important to include because that cautionary tale really applies to every single one of those treatments that people might be hearing about that hasn’t been backed up by efficacy and safety studies.”

Altmann: “I think Gez has been quite diplomatic. That chapter was, I think, a testament to the power of the book. And the biggest test of our marriage as ‘the odd couple.’ Because when I first read the first draft of what Gez had written, I said, ‘my name can’t even be on this book. Otherwise, I’ll be sacked.’ 

And we had to find marriage counseling after that, and a way back to write a version of that chapter that expressed both halves of those concerns in a way that did justice to those different viewpoints. And I think that makes it quite a strong chapter.”
 

What do you think are the most urgent next steps in the search for solving long COVID?

Medinger: “I would personally like to try and get some sort of answer on viral persistence. ... If there’s one thing that feels like it would be treatable in theory, and would make sense why we’re still getting all of these symptoms this whole time later, it’s that, so I would like to try and establish or eliminate viral persistence. So if you gave me Elon Musk’s wealth, that’s what I would throw a bunch of the money at, trying to either eliminate or establish that. 

And then, you know, the other important thing is a diagnostic test. Danny always talks about how important it is. Once you have that, it helps you suddenly open the doors to all these other things that you can do. And treatment trials. Let’s throw some meds at this so that we have an educated guess at what might work and put them into high-powered, randomized, controlled trials and see if anything comes out because from the patient perspective, I don’t think any of us wants to wait for 5 years for that stuff to start happening.”

Altmann: “I completely agree. If you go to a website, like clinicaltrials.gov, you’ll find an immense number of clinical trials on COVID. There isn’t really a shortage of them, some of them better-powered to get an answer than others.”

How do you think public policy needs to adapt for long COVID, including social safety nets such as workers’ compensation and disability benefits?

Medinger: “In terms of public policy, what I would like would be some public acknowledgment that it’s real from government sources. Just the acknowledgment that it’s real and it remains a risk even now.”

Altmann: “Nobody in politics asks my opinion. I think they’d hate to hear it. Because if I went to see them and said, well, actually, if you thought the COVID pandemic was bad, wait till you see what’s on the table now. We’ve created a disabled population in our country of 2 million, at least a portion if not more of people who are not fully contributory to the workforce anymore ... [with] legal wrangles about retirement and health insurance and pensions, and a human right to adequate health care. Which means, ideally, a purpose-built clinic where they can have their respiratory opinion and their rheumatology opinion and their endocrine opinion and their neurology opinion, all under one roof.”

You’ve both shown so much optimism. Why is that?

Altmann: “I’ve been an immunologist for a long time now, and written all my decades of grant applications, where as a community we made what, at the time, were kind of wild promises and wildly optimistic projections of how our knowledge of tumor immunity would revolutionize cancer care, and how knowledge of autoimmunity would revolutionize care of all the autoimmune diseases. 

And weirdly almost every word we wrote over those 25 or 30 years came true. Cancer immunotherapy was revolutionized, and biologics for diabetes, multiple sclerosis, and arthritis were revolutionized. So if I have faith that those things came true, I have complete faith in this as well.”

Medinger: “From the patient perspective, what I would say is that we are seeing people who’ve been ill for more than 2 years recover. People are suddenly turning the corner when they might not have expected to. 

And while we don’t quite know exactly why yet, and it’s not everyone, every single time I hear the story of someone saying, ‘I’m pretty much back to where I was, I feel like I’ve recovered,’ I feel great. Even if I haven’t. Because I know that every single time I hear someone say that, that just increases the probability that I will, too.”
 

A version of this article first appeared on WebMD.com.

NEW ORLEANS – Parents’ concerns about vaccinating their children against COVID-19 remain a substantial barrier to immunizing children against the disease, whether those children have chronic rheumatologic conditions or a history of multisystem inflammatory syndrome in children (MIS-C), according to two studies presented at the Pediatric Rheumatology Symposium.

Parents of children who developed MIS-C after a SARS-CoV-2 infection were particularly hesitant to vaccinate, despite strong encouragement from health care professionals at Baylor College of Medicine, Houston, said the presenter of one of the studies.

“Unfortunately, it remains unclear who is susceptible and what the mechanisms are” when it comes to MIS-C, Mariana Sanchez Villa, MS, a research coordinator at Baylor, told attendees. “Because of this, there is much hesitancy to vaccinate children with a history of MIS-C against COVID-19 out of a fear that hyperinflammation may occur.”

Ms. Sanchez Villa reported findings on the vaccination rate among patients who had been hospitalized with MIS-C. The researchers included all 295 patients who presented at the hospital with MIS-C between May 2020 and October 2022. Overall, 5% of these patients had been vaccinated against COVID-19 before they were diagnosed with MIS-C. When all these patients and their families came to outpatient follow-up appointments after discharge, the subspecialist clinicians recommended the children receive the COVID-19 vaccine 3 months after discharge. The researchers then reviewed the patients’ charts to see who did and did not receive the vaccine, which they confirmed through the state’s immunization registry.

Among the 295 patients with MIS-C, 1 died, and 99 (34%) received at least one COVID-19 vaccine dose after their diagnosis, including 7 of the 15 who had also been vaccinated prior to their MIS-C diagnosis. Just over half of the vaccinated patients (58%) were male. They received their vaccine an average 8.8 months after their hospitalization, when they were an average 10 years old, and all but one of the vaccine doses they received were the Pfizer/BioNTech mRNA vaccine.

Only 9 of the 99 vaccinated patients are fully vaccinated, defined as receiving the primary series plus the recommended boosters. Of the other patients, 13 received only one dose of the vaccine, 60 received two doses, and 17 received at least three doses of the primary series doses but no bivalent boosters. Over a subsequent average 11 months of follow-up, none of the vaccinated patients returned to the hospital with a recurrence of MIS-C or any other hyperinflammatory condition. The seven patients who had been vaccinated both before and after their MIS-C diagnosis have also not had any recurrence of a hyperinflammatory condition.

“SARS-CoV-2 vaccination is well-tolerated by children with a history of MIS-C,” the researchers concluded. Ms. Sanchez Villa referenced two other studies, in The Pediatric Infectious Disease Journal and in JAMA Network Open, with similar findings on the safety of COVID-19 vaccination in patients who have had MIS-C. “This is reassuring as SARS-CoV-2 becomes endemic and annual vaccination against SARS-CoV-2 is considered.”

Dilan Dissanayake, MD, PhD, a rheumatologist at The Hospital for Sick Children in Toronto, who attended the presentation, told this news organization that data increasingly show a “synergistic protective effect” from COVID-19 infection and vaccination. That is, “having COVID or having MIS-C once doesn’t necessarily preclude you from having it again,” thereby supporting the importance of vaccination after an MIS-C diagnosis. In talking to parents about vaccinating, he has found it most helpful for them to hear about rheumatologists’ experience regarding COVID-19 vaccination.

“Particularly as the pandemic went on, being able to comfortably say that we have this large patient group, as well as collaborators across the world who have been monitoring for any safety issues, and that all the data has been reassuring” has been most useful for parents to hear, Dr. Dissanayake said.

The other study, led by Beth Rutstein, MD, MSCE, an attending rheumatologist at Children’s Hospital of Philadelphia, focused on the population of pediatric rheumatology patients by surveying pediatric rheumatologists who were members of the Childhood Arthritis and Rheumatology Research Alliance. The survey, conducted from March to May 2022, included questions about the rheumatologists’ COVID-19 vaccination practices as well as perceptions of the vaccine by the parents of their patients.

The 219 respondents included 74% pediatric rheumatologists and 21% fellows. Nearly all the respondents (98%) believed that any disease flares after COVID-19 vaccination would be mild and/or rare, and nearly all (98%) recommend their patients be vaccinated against COVID-19.

The primary finding from the study was that “we [rheumatologists] have different concerns from the families,” coauthor and presenter Vidya Sivaraman, MD, a pediatric rheumatologist at Nationwide Children’s Hospital and the Ohio State University in Columbus, told this news organization. “We’re more worried about the efficacy of the vaccine on immunosuppressive medications,” such as rituximab, which depletes B cells, Dr. Sivaraman said, but concerns about the vaccine’s immunogenicity or efficacy were very low among parents.

Just over half the clinicians surveyed (59%) were concerned about how effective the vaccine would be for their patients, especially those receiving immunosuppressive therapy. Health care professionals were most concerned about patients on rituximab – all clinicians reported concerns about the vaccine’s effectiveness in these patients – followed by patients taking systemic corticosteroids (86%), mycophenolate mofetil (59%), and Janus kinase inhibitors (46%).

Most clinicians (88%) reported that they had temporarily modified a patient’s immunosuppressive therapy to allow for vaccination, following guidelines by the American College of Rheumatology. Aside from a small proportion of health care professionals who checked patients’ post-vaccination serology primarily for research purposes, most clinicians (82%) did not collect this serology.

In regard to adverse events, the concern cited most often by respondents was myocarditis (76%), followed by development of new autoimmune conditions (29%) and thrombosis (22%), but the clinicians ranked these adverse events as low risk.

Meanwhile, the top three concerns about vaccination among parents, as reported to physicians, were worries about side effects, lack of long-term safety data on the vaccine, and misinformation they had heard, such as anxiety about changes to their child’s genetics or vaccination causing a COVID-19 infection. “They’re seeing things on social media from other parents [saying that COVID-19 vaccines are] going to affect their fertility, so they don’t want their daughters to get it,” Dr. Sivaraman said as another example of commonly cited misinformation.

Nearly half of the respondents (47%) said more than half of their families had concerns about side effects and the lack of data on long-term outcomes after vaccination. Only 8.5% of physicians said that fewer than 10% of their families were anxious about side effects. In addition, 39% of physicians said more than half of their families had concerns about misinformation they had heard, and only 16% of physicians had heard about misinformation concerns from fewer than 10% of their patients.

Other concerns cited by parents included their child’s disease flaring; lack of data on how well the vaccine would stimulate their child’s immune system; their child having already had COVID-19; and not believing COVID-19 was a major health risk to their child. Nearly every respondent (98%) said they had parents who turned down COVID-19 vaccination, and a majority (75%) reported that more than 10% of their patients had parents who were hesitant about COVID-19 vaccination.

No external funding was noted for either study. Ms. Sanchez Villa had no relevant financial relationships, but two abstract coauthors reported financial relationships with Pfizer and Moderna, and one reported a financial relationship with Novartis. Dr. Rutstein, Dr. Sivaraman, and Dr. Dissanayake had no relevant financial relationships.

A version of this article first appeared on Medscape.com.

NEW ORLEANS – Parents’ concerns about vaccinating their children against COVID-19 remain a substantial barrier to immunizing children against the disease, whether those children have chronic rheumatologic conditions or a history of multisystem inflammatory syndrome in children (MIS-C), according to two studies presented at the Pediatric Rheumatology Symposium.

Parents of children who developed MIS-C after a SARS-CoV-2 infection were particularly hesitant to vaccinate, despite strong encouragement from health care professionals at Baylor College of Medicine, Houston, said the presenter of one of the studies.

“Unfortunately, it remains unclear who is susceptible and what the mechanisms are” when it comes to MIS-C, Mariana Sanchez Villa, MS, a research coordinator at Baylor, told attendees. “Because of this, there is much hesitancy to vaccinate children with a history of MIS-C against COVID-19 out of a fear that hyperinflammation may occur.”

Ms. Sanchez Villa reported findings on the vaccination rate among patients who had been hospitalized with MIS-C. The researchers included all 295 patients who presented at the hospital with MIS-C between May 2020 and October 2022. Overall, 5% of these patients had been vaccinated against COVID-19 before they were diagnosed with MIS-C. When all these patients and their families came to outpatient follow-up appointments after discharge, the subspecialist clinicians recommended the children receive the COVID-19 vaccine 3 months after discharge. The researchers then reviewed the patients’ charts to see who did and did not receive the vaccine, which they confirmed through the state’s immunization registry.

Among the 295 patients with MIS-C, 1 died, and 99 (34%) received at least one COVID-19 vaccine dose after their diagnosis, including 7 of the 15 who had also been vaccinated prior to their MIS-C diagnosis. Just over half of the vaccinated patients (58%) were male. They received their vaccine an average 8.8 months after their hospitalization, when they were an average 10 years old, and all but one of the vaccine doses they received were the Pfizer/BioNTech mRNA vaccine.

Only 9 of the 99 vaccinated patients are fully vaccinated, defined as receiving the primary series plus the recommended boosters. Of the other patients, 13 received only one dose of the vaccine, 60 received two doses, and 17 received at least three doses of the primary series doses but no bivalent boosters. Over a subsequent average 11 months of follow-up, none of the vaccinated patients returned to the hospital with a recurrence of MIS-C or any other hyperinflammatory condition. The seven patients who had been vaccinated both before and after their MIS-C diagnosis have also not had any recurrence of a hyperinflammatory condition.

“SARS-CoV-2 vaccination is well-tolerated by children with a history of MIS-C,” the researchers concluded. Ms. Sanchez Villa referenced two other studies, in The Pediatric Infectious Disease Journal and in JAMA Network Open, with similar findings on the safety of COVID-19 vaccination in patients who have had MIS-C. “This is reassuring as SARS-CoV-2 becomes endemic and annual vaccination against SARS-CoV-2 is considered.”

Dilan Dissanayake, MD, PhD, a rheumatologist at The Hospital for Sick Children in Toronto, who attended the presentation, told this news organization that data increasingly show a “synergistic protective effect” from COVID-19 infection and vaccination. That is, “having COVID or having MIS-C once doesn’t necessarily preclude you from having it again,” thereby supporting the importance of vaccination after an MIS-C diagnosis. In talking to parents about vaccinating, he has found it most helpful for them to hear about rheumatologists’ experience regarding COVID-19 vaccination.

“Particularly as the pandemic went on, being able to comfortably say that we have this large patient group, as well as collaborators across the world who have been monitoring for any safety issues, and that all the data has been reassuring” has been most useful for parents to hear, Dr. Dissanayake said.

The other study, led by Beth Rutstein, MD, MSCE, an attending rheumatologist at Children’s Hospital of Philadelphia, focused on the population of pediatric rheumatology patients by surveying pediatric rheumatologists who were members of the Childhood Arthritis and Rheumatology Research Alliance. The survey, conducted from March to May 2022, included questions about the rheumatologists’ COVID-19 vaccination practices as well as perceptions of the vaccine by the parents of their patients.

The 219 respondents included 74% pediatric rheumatologists and 21% fellows. Nearly all the respondents (98%) believed that any disease flares after COVID-19 vaccination would be mild and/or rare, and nearly all (98%) recommend their patients be vaccinated against COVID-19.

The primary finding from the study was that “we [rheumatologists] have different concerns from the families,” coauthor and presenter Vidya Sivaraman, MD, a pediatric rheumatologist at Nationwide Children’s Hospital and the Ohio State University in Columbus, told this news organization. “We’re more worried about the efficacy of the vaccine on immunosuppressive medications,” such as rituximab, which depletes B cells, Dr. Sivaraman said, but concerns about the vaccine’s immunogenicity or efficacy were very low among parents.

Just over half the clinicians surveyed (59%) were concerned about how effective the vaccine would be for their patients, especially those receiving immunosuppressive therapy. Health care professionals were most concerned about patients on rituximab – all clinicians reported concerns about the vaccine’s effectiveness in these patients – followed by patients taking systemic corticosteroids (86%), mycophenolate mofetil (59%), and Janus kinase inhibitors (46%).

Most clinicians (88%) reported that they had temporarily modified a patient’s immunosuppressive therapy to allow for vaccination, following guidelines by the American College of Rheumatology. Aside from a small proportion of health care professionals who checked patients’ post-vaccination serology primarily for research purposes, most clinicians (82%) did not collect this serology.

In regard to adverse events, the concern cited most often by respondents was myocarditis (76%), followed by development of new autoimmune conditions (29%) and thrombosis (22%), but the clinicians ranked these adverse events as low risk.

Meanwhile, the top three concerns about vaccination among parents, as reported to physicians, were worries about side effects, lack of long-term safety data on the vaccine, and misinformation they had heard, such as anxiety about changes to their child’s genetics or vaccination causing a COVID-19 infection. “They’re seeing things on social media from other parents [saying that COVID-19 vaccines are] going to affect their fertility, so they don’t want their daughters to get it,” Dr. Sivaraman said as another example of commonly cited misinformation.

Nearly half of the respondents (47%) said more than half of their families had concerns about side effects and the lack of data on long-term outcomes after vaccination. Only 8.5% of physicians said that fewer than 10% of their families were anxious about side effects. In addition, 39% of physicians said more than half of their families had concerns about misinformation they had heard, and only 16% of physicians had heard about misinformation concerns from fewer than 10% of their patients.

Other concerns cited by parents included their child’s disease flaring; lack of data on how well the vaccine would stimulate their child’s immune system; their child having already had COVID-19; and not believing COVID-19 was a major health risk to their child. Nearly every respondent (98%) said they had parents who turned down COVID-19 vaccination, and a majority (75%) reported that more than 10% of their patients had parents who were hesitant about COVID-19 vaccination.

No external funding was noted for either study. Ms. Sanchez Villa had no relevant financial relationships, but two abstract coauthors reported financial relationships with Pfizer and Moderna, and one reported a financial relationship with Novartis. Dr. Rutstein, Dr. Sivaraman, and Dr. Dissanayake had no relevant financial relationships.

A version of this article first appeared on Medscape.com.

NEW ORLEANS – Parents’ concerns about vaccinating their children against COVID-19 remain a substantial barrier to immunizing children against the disease, whether those children have chronic rheumatologic conditions or a history of multisystem inflammatory syndrome in children (MIS-C), according to two studies presented at the Pediatric Rheumatology Symposium.

Parents of children who developed MIS-C after a SARS-CoV-2 infection were particularly hesitant to vaccinate, despite strong encouragement from health care professionals at Baylor College of Medicine, Houston, said the presenter of one of the studies.

“Unfortunately, it remains unclear who is susceptible and what the mechanisms are” when it comes to MIS-C, Mariana Sanchez Villa, MS, a research coordinator at Baylor, told attendees. “Because of this, there is much hesitancy to vaccinate children with a history of MIS-C against COVID-19 out of a fear that hyperinflammation may occur.”

Ms. Sanchez Villa reported findings on the vaccination rate among patients who had been hospitalized with MIS-C. The researchers included all 295 patients who presented at the hospital with MIS-C between May 2020 and October 2022. Overall, 5% of these patients had been vaccinated against COVID-19 before they were diagnosed with MIS-C. When all these patients and their families came to outpatient follow-up appointments after discharge, the subspecialist clinicians recommended the children receive the COVID-19 vaccine 3 months after discharge. The researchers then reviewed the patients’ charts to see who did and did not receive the vaccine, which they confirmed through the state’s immunization registry.

Among the 295 patients with MIS-C, 1 died, and 99 (34%) received at least one COVID-19 vaccine dose after their diagnosis, including 7 of the 15 who had also been vaccinated prior to their MIS-C diagnosis. Just over half of the vaccinated patients (58%) were male. They received their vaccine an average 8.8 months after their hospitalization, when they were an average 10 years old, and all but one of the vaccine doses they received were the Pfizer/BioNTech mRNA vaccine.

Only 9 of the 99 vaccinated patients are fully vaccinated, defined as receiving the primary series plus the recommended boosters. Of the other patients, 13 received only one dose of the vaccine, 60 received two doses, and 17 received at least three doses of the primary series doses but no bivalent boosters. Over a subsequent average 11 months of follow-up, none of the vaccinated patients returned to the hospital with a recurrence of MIS-C or any other hyperinflammatory condition. The seven patients who had been vaccinated both before and after their MIS-C diagnosis have also not had any recurrence of a hyperinflammatory condition.

“SARS-CoV-2 vaccination is well-tolerated by children with a history of MIS-C,” the researchers concluded. Ms. Sanchez Villa referenced two other studies, in The Pediatric Infectious Disease Journal and in JAMA Network Open, with similar findings on the safety of COVID-19 vaccination in patients who have had MIS-C. “This is reassuring as SARS-CoV-2 becomes endemic and annual vaccination against SARS-CoV-2 is considered.”

Dilan Dissanayake, MD, PhD, a rheumatologist at The Hospital for Sick Children in Toronto, who attended the presentation, told this news organization that data increasingly show a “synergistic protective effect” from COVID-19 infection and vaccination. That is, “having COVID or having MIS-C once doesn’t necessarily preclude you from having it again,” thereby supporting the importance of vaccination after an MIS-C diagnosis. In talking to parents about vaccinating, he has found it most helpful for them to hear about rheumatologists’ experience regarding COVID-19 vaccination.

“Particularly as the pandemic went on, being able to comfortably say that we have this large patient group, as well as collaborators across the world who have been monitoring for any safety issues, and that all the data has been reassuring” has been most useful for parents to hear, Dr. Dissanayake said.

The other study, led by Beth Rutstein, MD, MSCE, an attending rheumatologist at Children’s Hospital of Philadelphia, focused on the population of pediatric rheumatology patients by surveying pediatric rheumatologists who were members of the Childhood Arthritis and Rheumatology Research Alliance. The survey, conducted from March to May 2022, included questions about the rheumatologists’ COVID-19 vaccination practices as well as perceptions of the vaccine by the parents of their patients.

The 219 respondents included 74% pediatric rheumatologists and 21% fellows. Nearly all the respondents (98%) believed that any disease flares after COVID-19 vaccination would be mild and/or rare, and nearly all (98%) recommend their patients be vaccinated against COVID-19.

The primary finding from the study was that “we [rheumatologists] have different concerns from the families,” coauthor and presenter Vidya Sivaraman, MD, a pediatric rheumatologist at Nationwide Children’s Hospital and the Ohio State University in Columbus, told this news organization. “We’re more worried about the efficacy of the vaccine on immunosuppressive medications,” such as rituximab, which depletes B cells, Dr. Sivaraman said, but concerns about the vaccine’s immunogenicity or efficacy were very low among parents.

Just over half the clinicians surveyed (59%) were concerned about how effective the vaccine would be for their patients, especially those receiving immunosuppressive therapy. Health care professionals were most concerned about patients on rituximab – all clinicians reported concerns about the vaccine’s effectiveness in these patients – followed by patients taking systemic corticosteroids (86%), mycophenolate mofetil (59%), and Janus kinase inhibitors (46%).

Most clinicians (88%) reported that they had temporarily modified a patient’s immunosuppressive therapy to allow for vaccination, following guidelines by the American College of Rheumatology. Aside from a small proportion of health care professionals who checked patients’ post-vaccination serology primarily for research purposes, most clinicians (82%) did not collect this serology.

In regard to adverse events, the concern cited most often by respondents was myocarditis (76%), followed by development of new autoimmune conditions (29%) and thrombosis (22%), but the clinicians ranked these adverse events as low risk.

Meanwhile, the top three concerns about vaccination among parents, as reported to physicians, were worries about side effects, lack of long-term safety data on the vaccine, and misinformation they had heard, such as anxiety about changes to their child’s genetics or vaccination causing a COVID-19 infection. “They’re seeing things on social media from other parents [saying that COVID-19 vaccines are] going to affect their fertility, so they don’t want their daughters to get it,” Dr. Sivaraman said as another example of commonly cited misinformation.

Nearly half of the respondents (47%) said more than half of their families had concerns about side effects and the lack of data on long-term outcomes after vaccination. Only 8.5% of physicians said that fewer than 10% of their families were anxious about side effects. In addition, 39% of physicians said more than half of their families had concerns about misinformation they had heard, and only 16% of physicians had heard about misinformation concerns from fewer than 10% of their patients.

Other concerns cited by parents included their child’s disease flaring; lack of data on how well the vaccine would stimulate their child’s immune system; their child having already had COVID-19; and not believing COVID-19 was a major health risk to their child. Nearly every respondent (98%) said they had parents who turned down COVID-19 vaccination, and a majority (75%) reported that more than 10% of their patients had parents who were hesitant about COVID-19 vaccination.

No external funding was noted for either study. Ms. Sanchez Villa had no relevant financial relationships, but two abstract coauthors reported financial relationships with Pfizer and Moderna, and one reported a financial relationship with Novartis. Dr. Rutstein, Dr. Sivaraman, and Dr. Dissanayake had no relevant financial relationships.

A version of this article first appeared on Medscape.com.

More than 3 years into the COVID-19 pandemic, lasting symptoms are becoming quite common, with residents of certain states, women, Hispanic people, and transgender people more at risk, a new report shows. 

More than one in four adults sickened by the virus go on to have long COVID, according to a new report from the U.S. Census Bureau. Overall, nearly 15% of all American adults – more than 38 million people nationwide – have had long COVID at some point since the start of the pandemic, according to the report. 

The report, based on survey data collected between March 1 and 13, defines long COVID as symptoms lasting at least 3 months that people didn’t have before getting infected with the virus. 

It is the second recent look at who is most likely to face long COVID. A similar study, published in March, found that women, smokers, and those who had severe COVID-19 infections are most likely to have the disorder

The Census Bureau report found that while 27% of adults nationwide have had long COVID after getting infected with the virus, the condition has impacted some states more than others. The proportion of residents hit with long COVID ranged from a low of 18.8% in New Jersey to a high of 40.7% in West Virginia. 

Other states with long COVID rates well below the national average include Alaska, Maryland, New York, and Wisconsin. At the other end of the spectrum, the states with rates well above the national average include Kentucky, Mississippi, New Mexico, Nevada, South Carolina, South Dakota, and Wyoming.

Long COVID rates also varied by age, gender, and race. People in their 50s were most at risk, with about 31% of those infected by the virus going on to have long COVID, followed by those in their 40s, at more than 29%. 

Far more women (almost 33%) than men (21%) with COVID infections got long COVID. And when researchers looked at long COVID rates based on gender identity, they found that transgender adults were more than twice as likely to have long COVID than cisgender males. Bisexual adults also had much higher long COVID rates than straight, gay, or lesbian people. 

Long COVID was also much more common among Hispanic adults, affecting almost 29% of those infected with the virus, than among White or Black people, who had long COVID rates similar to the national average of 27%. Asian adults had lower long COVID rates than the national average, at less than 20%.

People with disabilities were also at higher risk, with long COVID rates of almost 47%, compared with 24% among adults without disabilities.
 

A version of this article first appeared on WebMD.com.

More than 3 years into the COVID-19 pandemic, lasting symptoms are becoming quite common, with residents of certain states, women, Hispanic people, and transgender people more at risk, a new report shows. 

More than one in four adults sickened by the virus go on to have long COVID, according to a new report from the U.S. Census Bureau. Overall, nearly 15% of all American adults – more than 38 million people nationwide – have had long COVID at some point since the start of the pandemic, according to the report. 

The report, based on survey data collected between March 1 and 13, defines long COVID as symptoms lasting at least 3 months that people didn’t have before getting infected with the virus. 

It is the second recent look at who is most likely to face long COVID. A similar study, published in March, found that women, smokers, and those who had severe COVID-19 infections are most likely to have the disorder

The Census Bureau report found that while 27% of adults nationwide have had long COVID after getting infected with the virus, the condition has impacted some states more than others. The proportion of residents hit with long COVID ranged from a low of 18.8% in New Jersey to a high of 40.7% in West Virginia. 

Other states with long COVID rates well below the national average include Alaska, Maryland, New York, and Wisconsin. At the other end of the spectrum, the states with rates well above the national average include Kentucky, Mississippi, New Mexico, Nevada, South Carolina, South Dakota, and Wyoming.

Long COVID rates also varied by age, gender, and race. People in their 50s were most at risk, with about 31% of those infected by the virus going on to have long COVID, followed by those in their 40s, at more than 29%. 

Far more women (almost 33%) than men (21%) with COVID infections got long COVID. And when researchers looked at long COVID rates based on gender identity, they found that transgender adults were more than twice as likely to have long COVID than cisgender males. Bisexual adults also had much higher long COVID rates than straight, gay, or lesbian people. 

Long COVID was also much more common among Hispanic adults, affecting almost 29% of those infected with the virus, than among White or Black people, who had long COVID rates similar to the national average of 27%. Asian adults had lower long COVID rates than the national average, at less than 20%.

People with disabilities were also at higher risk, with long COVID rates of almost 47%, compared with 24% among adults without disabilities.
 

A version of this article first appeared on WebMD.com.

More than 3 years into the COVID-19 pandemic, lasting symptoms are becoming quite common, with residents of certain states, women, Hispanic people, and transgender people more at risk, a new report shows. 

More than one in four adults sickened by the virus go on to have long COVID, according to a new report from the U.S. Census Bureau. Overall, nearly 15% of all American adults – more than 38 million people nationwide – have had long COVID at some point since the start of the pandemic, according to the report. 

The report, based on survey data collected between March 1 and 13, defines long COVID as symptoms lasting at least 3 months that people didn’t have before getting infected with the virus. 

It is the second recent look at who is most likely to face long COVID. A similar study, published in March, found that women, smokers, and those who had severe COVID-19 infections are most likely to have the disorder

The Census Bureau report found that while 27% of adults nationwide have had long COVID after getting infected with the virus, the condition has impacted some states more than others. The proportion of residents hit with long COVID ranged from a low of 18.8% in New Jersey to a high of 40.7% in West Virginia. 

Other states with long COVID rates well below the national average include Alaska, Maryland, New York, and Wisconsin. At the other end of the spectrum, the states with rates well above the national average include Kentucky, Mississippi, New Mexico, Nevada, South Carolina, South Dakota, and Wyoming.

Long COVID rates also varied by age, gender, and race. People in their 50s were most at risk, with about 31% of those infected by the virus going on to have long COVID, followed by those in their 40s, at more than 29%. 

Far more women (almost 33%) than men (21%) with COVID infections got long COVID. And when researchers looked at long COVID rates based on gender identity, they found that transgender adults were more than twice as likely to have long COVID than cisgender males. Bisexual adults also had much higher long COVID rates than straight, gay, or lesbian people. 

Long COVID was also much more common among Hispanic adults, affecting almost 29% of those infected with the virus, than among White or Black people, who had long COVID rates similar to the national average of 27%. Asian adults had lower long COVID rates than the national average, at less than 20%.

People with disabilities were also at higher risk, with long COVID rates of almost 47%, compared with 24% among adults without disabilities.
 

A version of this article first appeared on WebMD.com.

Compared with infants who were not exposed to COVID-19 in the womb, those who were exposed had a lower weight and body mass index at birth, but greater weight gain, during the first year of life, in a new analysis.

This “exaggerated growth pattern observed among infants with COVID-19 exposure may in some cases be a catch-up response to a prenatal growth deficit,” Mollie W. Ockene and colleagues wrote in a report published recently in the Journal of Clinical Endocrinology & Metabolism.

But given that lower birth weight and accelerated postnatal weight gain are risk factors for cardiometabolic disease, the findings “raise concern” about whether children born to mothers with prenatal COVID-19 go on to develop obesity, diabetes, or cardiovascular disease, senior coauthors Andrea G. Edlow, MD, and Lindsay T. Fourman, MD, of Massachusetts General Hospital, Boston, told this news organization.

Further studies in larger numbers of patients with longer follow-up and detailed assessments are needed, the researchers said, but this points to “a potentially increased cardiometabolic disease risk for the large global population of children with in utero COVID-19 exposure.”

It will be “important for clinicians caring for children with in utero exposure to maternal COVID-19 to be aware of this history,” Dr. Edlow and Dr. Fourman added, “and to view the child’s growth trajectory and metabolic risk factors in a holistic context that includes this prenatal infection exposure.”
 

COVID-19 vaccination important during and prior to pregnancy

The study also underscores the importance of primary prevention of COVID-19 among women who are contemplating pregnancy or who are already pregnant, the researchers noted, “including the need for widespread implementation of protective measures such as indoor masking and COVID-19 vaccination and boosting during or prior to pregnancy.”

Dr. Edlow and Dr. Fourman added, “Given the disproportionate impact that COVID-19 has had on historically marginalized populations, adverse health outcomes following in utero exposure to maternal COVID-19 may threaten to widen existing disparities in child health.”

On the other hand, although “COVID-19 vaccination rates lagged behind in minority populations following the initial vaccine rollout,” they noted, “these differences have fortunately narrowed over time, particularly for Hispanic individuals, though they do still persist in the Black population,” according to a recent report.
 

BMI trajectories during first year of life

In utero exposure to COVID-19 has been linked to fetal/neonatal morbidity and mortality, including stillbirth, preterm birth, preeclampsia, and gestational hypertension, but less is known about infant outcomes during the first year of life.

The researchers aimed to compare weight, length, and BMI trajectories over the first year of life in infants with, versus without, in utero exposure to COVID-19.

They identified 149 infants with in utero exposure to COVID-19 and 127 unexposed infants; all were born between March 30, 2020, and May 30, 2021, to mothers who participated in the Mass General Brigham COVID-19 Perinatal Biorepository.

The study excluded infants whose mothers received the vaccine (n = 5) or who had unclear vaccination status during pregnancy (n = 4) to reduce sample heterogeneity.

At the time of the study, few women had received the COVID-19 vaccine because vaccines were approved by the Food and Drug Administration for emergency use in December 2020 and the CDC recommended them for all pregnant women much later, in August 2021.

The researchers examined the weight, length, and BMI of the infants at birth, and at 2, 6, and 12 months, standardized using World Health Organization (WHO) growth charts.

Compared with mothers who did not have COVID-19 during pregnancy, those who had COVID-19 were younger (mean age, 32 vs. 34 years) and had a higher earliest BMI during pregnancy (29 vs. 26 kg/m²) and greater parity (previous births, excluding the index pregnancy, 1.2 vs. 0.9), and they were more likely to be Hispanic or Black and less likely to have private insurance.

Compared with infants exposed to COVID-19 in utero, infants who were not exposed were more likely to be male (47% vs. 55%).

Both infant groups were equally likely to be breastfed (90%).

Compared with the unexposed infants, infants born to mothers with prenatal COVID-19 had lower BMI z-scores at birth (effect size, −0.35; P = .03) and greater gain in BMI z-scores from birth to 12 months (effect size, 0.53; P = .03), but they had similar length at birth and over 12 months, after adjustment for maternal age at delivery, ethnicity, parity, insurance status, and earliest BMI during pregnancy, as well as infant sex, date of birth, and if applicable, history of breastfeeding.

The study received funding from the National Institutes of Health, Harvard Nutrition Obesity Research Center, Boston Area Diabetes Endocrinology Research Centers, American Heart Association, and Simons Foundation. Ms. Ockene has reported no relevant financial relationships. Dr. Edlow has reported being a consultant for Mirvie and receiving research funding from Merck outside the study. Dr. Fourman has reported serving as a consultant and receiving grant funding to her institution from Amryt outside the study. Disclosures for the other authors are listed with the article.

Compared with infants who were not exposed to COVID-19 in the womb, those who were exposed had a lower weight and body mass index at birth, but greater weight gain, during the first year of life, in a new analysis.

This “exaggerated growth pattern observed among infants with COVID-19 exposure may in some cases be a catch-up response to a prenatal growth deficit,” Mollie W. Ockene and colleagues wrote in a report published recently in the Journal of Clinical Endocrinology & Metabolism.

But given that lower birth weight and accelerated postnatal weight gain are risk factors for cardiometabolic disease, the findings “raise concern” about whether children born to mothers with prenatal COVID-19 go on to develop obesity, diabetes, or cardiovascular disease, senior coauthors Andrea G. Edlow, MD, and Lindsay T. Fourman, MD, of Massachusetts General Hospital, Boston, told this news organization.

Further studies in larger numbers of patients with longer follow-up and detailed assessments are needed, the researchers said, but this points to “a potentially increased cardiometabolic disease risk for the large global population of children with in utero COVID-19 exposure.”

It will be “important for clinicians caring for children with in utero exposure to maternal COVID-19 to be aware of this history,” Dr. Edlow and Dr. Fourman added, “and to view the child’s growth trajectory and metabolic risk factors in a holistic context that includes this prenatal infection exposure.”
 

COVID-19 vaccination important during and prior to pregnancy

The study also underscores the importance of primary prevention of COVID-19 among women who are contemplating pregnancy or who are already pregnant, the researchers noted, “including the need for widespread implementation of protective measures such as indoor masking and COVID-19 vaccination and boosting during or prior to pregnancy.”

Dr. Edlow and Dr. Fourman added, “Given the disproportionate impact that COVID-19 has had on historically marginalized populations, adverse health outcomes following in utero exposure to maternal COVID-19 may threaten to widen existing disparities in child health.”

On the other hand, although “COVID-19 vaccination rates lagged behind in minority populations following the initial vaccine rollout,” they noted, “these differences have fortunately narrowed over time, particularly for Hispanic individuals, though they do still persist in the Black population,” according to a recent report.
 

BMI trajectories during first year of life

In utero exposure to COVID-19 has been linked to fetal/neonatal morbidity and mortality, including stillbirth, preterm birth, preeclampsia, and gestational hypertension, but less is known about infant outcomes during the first year of life.

The researchers aimed to compare weight, length, and BMI trajectories over the first year of life in infants with, versus without, in utero exposure to COVID-19.

They identified 149 infants with in utero exposure to COVID-19 and 127 unexposed infants; all were born between March 30, 2020, and May 30, 2021, to mothers who participated in the Mass General Brigham COVID-19 Perinatal Biorepository.

The study excluded infants whose mothers received the vaccine (n = 5) or who had unclear vaccination status during pregnancy (n = 4) to reduce sample heterogeneity.

At the time of the study, few women had received the COVID-19 vaccine because vaccines were approved by the Food and Drug Administration for emergency use in December 2020 and the CDC recommended them for all pregnant women much later, in August 2021.

The researchers examined the weight, length, and BMI of the infants at birth, and at 2, 6, and 12 months, standardized using World Health Organization (WHO) growth charts.

Compared with mothers who did not have COVID-19 during pregnancy, those who had COVID-19 were younger (mean age, 32 vs. 34 years) and had a higher earliest BMI during pregnancy (29 vs. 26 kg/m²) and greater parity (previous births, excluding the index pregnancy, 1.2 vs. 0.9), and they were more likely to be Hispanic or Black and less likely to have private insurance.

Compared with infants exposed to COVID-19 in utero, infants who were not exposed were more likely to be male (47% vs. 55%).

Both infant groups were equally likely to be breastfed (90%).

Compared with the unexposed infants, infants born to mothers with prenatal COVID-19 had lower BMI z-scores at birth (effect size, −0.35; P = .03) and greater gain in BMI z-scores from birth to 12 months (effect size, 0.53; P = .03), but they had similar length at birth and over 12 months, after adjustment for maternal age at delivery, ethnicity, parity, insurance status, and earliest BMI during pregnancy, as well as infant sex, date of birth, and if applicable, history of breastfeeding.

The study received funding from the National Institutes of Health, Harvard Nutrition Obesity Research Center, Boston Area Diabetes Endocrinology Research Centers, American Heart Association, and Simons Foundation. Ms. Ockene has reported no relevant financial relationships. Dr. Edlow has reported being a consultant for Mirvie and receiving research funding from Merck outside the study. Dr. Fourman has reported serving as a consultant and receiving grant funding to her institution from Amryt outside the study. Disclosures for the other authors are listed with the article.

Compared with infants who were not exposed to COVID-19 in the womb, those who were exposed had a lower weight and body mass index at birth, but greater weight gain, during the first year of life, in a new analysis.

This “exaggerated growth pattern observed among infants with COVID-19 exposure may in some cases be a catch-up response to a prenatal growth deficit,” Mollie W. Ockene and colleagues wrote in a report published recently in the Journal of Clinical Endocrinology & Metabolism.

But given that lower birth weight and accelerated postnatal weight gain are risk factors for cardiometabolic disease, the findings “raise concern” about whether children born to mothers with prenatal COVID-19 go on to develop obesity, diabetes, or cardiovascular disease, senior coauthors Andrea G. Edlow, MD, and Lindsay T. Fourman, MD, of Massachusetts General Hospital, Boston, told this news organization.

Further studies in larger numbers of patients with longer follow-up and detailed assessments are needed, the researchers said, but this points to “a potentially increased cardiometabolic disease risk for the large global population of children with in utero COVID-19 exposure.”

It will be “important for clinicians caring for children with in utero exposure to maternal COVID-19 to be aware of this history,” Dr. Edlow and Dr. Fourman added, “and to view the child’s growth trajectory and metabolic risk factors in a holistic context that includes this prenatal infection exposure.”
 

COVID-19 vaccination important during and prior to pregnancy

The study also underscores the importance of primary prevention of COVID-19 among women who are contemplating pregnancy or who are already pregnant, the researchers noted, “including the need for widespread implementation of protective measures such as indoor masking and COVID-19 vaccination and boosting during or prior to pregnancy.”

Dr. Edlow and Dr. Fourman added, “Given the disproportionate impact that COVID-19 has had on historically marginalized populations, adverse health outcomes following in utero exposure to maternal COVID-19 may threaten to widen existing disparities in child health.”

On the other hand, although “COVID-19 vaccination rates lagged behind in minority populations following the initial vaccine rollout,” they noted, “these differences have fortunately narrowed over time, particularly for Hispanic individuals, though they do still persist in the Black population,” according to a recent report.
 

BMI trajectories during first year of life

In utero exposure to COVID-19 has been linked to fetal/neonatal morbidity and mortality, including stillbirth, preterm birth, preeclampsia, and gestational hypertension, but less is known about infant outcomes during the first year of life.

The researchers aimed to compare weight, length, and BMI trajectories over the first year of life in infants with, versus without, in utero exposure to COVID-19.

They identified 149 infants with in utero exposure to COVID-19 and 127 unexposed infants; all were born between March 30, 2020, and May 30, 2021, to mothers who participated in the Mass General Brigham COVID-19 Perinatal Biorepository.

The study excluded infants whose mothers received the vaccine (n = 5) or who had unclear vaccination status during pregnancy (n = 4) to reduce sample heterogeneity.

At the time of the study, few women had received the COVID-19 vaccine because vaccines were approved by the Food and Drug Administration for emergency use in December 2020 and the CDC recommended them for all pregnant women much later, in August 2021.

The researchers examined the weight, length, and BMI of the infants at birth, and at 2, 6, and 12 months, standardized using World Health Organization (WHO) growth charts.

Compared with mothers who did not have COVID-19 during pregnancy, those who had COVID-19 were younger (mean age, 32 vs. 34 years) and had a higher earliest BMI during pregnancy (29 vs. 26 kg/m²) and greater parity (previous births, excluding the index pregnancy, 1.2 vs. 0.9), and they were more likely to be Hispanic or Black and less likely to have private insurance.

Compared with infants exposed to COVID-19 in utero, infants who were not exposed were more likely to be male (47% vs. 55%).

Both infant groups were equally likely to be breastfed (90%).

Compared with the unexposed infants, infants born to mothers with prenatal COVID-19 had lower BMI z-scores at birth (effect size, −0.35; P = .03) and greater gain in BMI z-scores from birth to 12 months (effect size, 0.53; P = .03), but they had similar length at birth and over 12 months, after adjustment for maternal age at delivery, ethnicity, parity, insurance status, and earliest BMI during pregnancy, as well as infant sex, date of birth, and if applicable, history of breastfeeding.

The study received funding from the National Institutes of Health, Harvard Nutrition Obesity Research Center, Boston Area Diabetes Endocrinology Research Centers, American Heart Association, and Simons Foundation. Ms. Ockene has reported no relevant financial relationships. Dr. Edlow has reported being a consultant for Mirvie and receiving research funding from Merck outside the study. Dr. Fourman has reported serving as a consultant and receiving grant funding to her institution from Amryt outside the study. Disclosures for the other authors are listed with the article.

Researchers have found for the first time that COVID infection has crossed the placenta and caused brain damage in two newborns, according to a study published online today in Pediatrics .

One of the infants died at 13 months and the other remained in hospice care at time of manuscript submission.

Lead author Merline Benny, MD, with the division of neonatology, department of pediatrics at University of Miami, and colleagues briefed reporters today ahead of the release.

Zelda Calvert

“This is a first,” said senior author Shahnaz Duara, MD, medical director of the Neonatal Intensive Care Unit at Holtz Children’s Hospital, Miami, explaining it is the first study to confirm cross-placental SARS-CoV-2 transmission leading to brain injury in a newborn.
 

Both infants negative for the virus at birth

The two infants were admitted in the early days of the pandemic in the Delta wave to the neonatal ICU at Holtz Children’s Hospital at University of Miami/Jackson Memorial Medical Center.

Both infants tested negative for the virus at birth, but had significantly elevated SARS-CoV-2 antibodies in their blood, indicating that either antibodies crossed the placenta, or the virus crossed and the immune response was the baby’s.

Dr. Benny explained that the researchers have seen, to this point, more than 700 mother/infant pairs in whom the mother tested positive for COVID in Jackson hospital.

Most who tested positive for COVID were asymptomatic and most of the mothers and infants left the hospital without complications.

“However, (these) two babies had a very unusual clinical picture,” Dr. Benny said.

Those infants were born to mothers who became COVID positive in the second trimester and delivered a few weeks later.

Seizures started on day 1 of life

The babies began to seize from the first day of life. They had profound low tone (hypotonia) in their clinical exam, Dr. Benny explained.

“We had absolutely no good explanation for the early seizures and the degree of brain injury we saw,” Dr. Duara said.

Dr. Benny said that as their bodies grew, they had very small head circumference. Unlike some babies born with the Zika virus, these babies were not microcephalic at birth. Brain imaging on the two babies indicated significant brain atrophy, and neurodevelopment exams showed significant delay.

Discussions began with the center’s multidisciplinary team including neurologists, pathologists, neuroradiologists, and obstetricians who cared for both the mothers and the babies.

The experts examined the placentas and found some characteristic COVID changes and presence of the COVID virus. This was accompanied by increased markers for inflammation and a severe reduction in a hormone critical for placental health and brain development.

Examining the infant’s autopsy findings further raised suspicions of maternal transmission, something that had not been documented before.

Coauthor Ali G. Saad, MD, pediatric and perinatal pathology director at Miami, said, “I have seen literally thousands of brains in autopsies over the last 14 years, and this was the most dramatic case of leukoencephalopathy or loss of white matter in a patient with no significant reason. That’s what triggered the investigation.”
 

Mothers had very different presentations

Coauthor Michael J. Paidas, MD, with the department of obstetrics, gynecology, and reproductive sciences at Miami, pointed out that the circumstances of the two mothers, who were in their 20s, were very different.

One mother delivered at 32 weeks and had a very severe COVID presentation and spent a month in the intensive care unit. The team decided to deliver the child to save the mother, Dr. Paidas said.

In contrast, the other mother had asymptomatic COVID infection in the second trimester and delivered at full term.

He said one of the early suspicions in the babies’ presentations was hypoxic ischemic encephalopathy. “But it wasn’t lack of blood flow to the placenta that caused this,” he said. “As best we can tell, it was the viral infection.”
 

Instances are rare

The researchers emphasized that these instances are rare and have not been seen before or since the period of this study to their knowledge.

Dr. Duara said, “This is something we want to alert the medical community to more than the general public. We do not want the lay public to be panicked. We’re trying to understand what made these two pregnancies different, so we can direct research towards protecting vulnerable babies.”

Previous data have indicated a relatively benign status in infants who test negative for the COVID virus after birth. Dr. Benny added that COVID vaccination has been found safe in pregnancy and both vaccination and breastfeeding can help passage of antibodies to the infant and help protect the baby. Because these cases happened in the early days of the pandemic, no vaccines were available.

Dr. Paidas received funding from BioIncept to study hypoxic-ischemic encephalopathy with Preimplantation Factor, is a scientific advisory board member, and has stock options. Dr. Paidas and coauthor Dr. Jayakumar are coinventors of SPIKENET, University of Miami, patent pending 2023. The other authors have no conflicts of interest to disclose.

Researchers have found for the first time that COVID infection has crossed the placenta and caused brain damage in two newborns, according to a study published online today in Pediatrics .

One of the infants died at 13 months and the other remained in hospice care at time of manuscript submission.

Lead author Merline Benny, MD, with the division of neonatology, department of pediatrics at University of Miami, and colleagues briefed reporters today ahead of the release.

Zelda Calvert

“This is a first,” said senior author Shahnaz Duara, MD, medical director of the Neonatal Intensive Care Unit at Holtz Children’s Hospital, Miami, explaining it is the first study to confirm cross-placental SARS-CoV-2 transmission leading to brain injury in a newborn.
 

Both infants negative for the virus at birth

The two infants were admitted in the early days of the pandemic in the Delta wave to the neonatal ICU at Holtz Children’s Hospital at University of Miami/Jackson Memorial Medical Center.

Both infants tested negative for the virus at birth, but had significantly elevated SARS-CoV-2 antibodies in their blood, indicating that either antibodies crossed the placenta, or the virus crossed and the immune response was the baby’s.

Dr. Benny explained that the researchers have seen, to this point, more than 700 mother/infant pairs in whom the mother tested positive for COVID in Jackson hospital.

Most who tested positive for COVID were asymptomatic and most of the mothers and infants left the hospital without complications.

“However, (these) two babies had a very unusual clinical picture,” Dr. Benny said.

Those infants were born to mothers who became COVID positive in the second trimester and delivered a few weeks later.

Seizures started on day 1 of life

The babies began to seize from the first day of life. They had profound low tone (hypotonia) in their clinical exam, Dr. Benny explained.

“We had absolutely no good explanation for the early seizures and the degree of brain injury we saw,” Dr. Duara said.

Dr. Benny said that as their bodies grew, they had very small head circumference. Unlike some babies born with the Zika virus, these babies were not microcephalic at birth. Brain imaging on the two babies indicated significant brain atrophy, and neurodevelopment exams showed significant delay.

Discussions began with the center’s multidisciplinary team including neurologists, pathologists, neuroradiologists, and obstetricians who cared for both the mothers and the babies.

The experts examined the placentas and found some characteristic COVID changes and presence of the COVID virus. This was accompanied by increased markers for inflammation and a severe reduction in a hormone critical for placental health and brain development.

Examining the infant’s autopsy findings further raised suspicions of maternal transmission, something that had not been documented before.

Coauthor Ali G. Saad, MD, pediatric and perinatal pathology director at Miami, said, “I have seen literally thousands of brains in autopsies over the last 14 years, and this was the most dramatic case of leukoencephalopathy or loss of white matter in a patient with no significant reason. That’s what triggered the investigation.”
 

Mothers had very different presentations

Coauthor Michael J. Paidas, MD, with the department of obstetrics, gynecology, and reproductive sciences at Miami, pointed out that the circumstances of the two mothers, who were in their 20s, were very different.

One mother delivered at 32 weeks and had a very severe COVID presentation and spent a month in the intensive care unit. The team decided to deliver the child to save the mother, Dr. Paidas said.

In contrast, the other mother had asymptomatic COVID infection in the second trimester and delivered at full term.

He said one of the early suspicions in the babies’ presentations was hypoxic ischemic encephalopathy. “But it wasn’t lack of blood flow to the placenta that caused this,” he said. “As best we can tell, it was the viral infection.”
 

Instances are rare

The researchers emphasized that these instances are rare and have not been seen before or since the period of this study to their knowledge.

Dr. Duara said, “This is something we want to alert the medical community to more than the general public. We do not want the lay public to be panicked. We’re trying to understand what made these two pregnancies different, so we can direct research towards protecting vulnerable babies.”

Previous data have indicated a relatively benign status in infants who test negative for the COVID virus after birth. Dr. Benny added that COVID vaccination has been found safe in pregnancy and both vaccination and breastfeeding can help passage of antibodies to the infant and help protect the baby. Because these cases happened in the early days of the pandemic, no vaccines were available.

Dr. Paidas received funding from BioIncept to study hypoxic-ischemic encephalopathy with Preimplantation Factor, is a scientific advisory board member, and has stock options. Dr. Paidas and coauthor Dr. Jayakumar are coinventors of SPIKENET, University of Miami, patent pending 2023. The other authors have no conflicts of interest to disclose.

Researchers have found for the first time that COVID infection has crossed the placenta and caused brain damage in two newborns, according to a study published online today in Pediatrics .

One of the infants died at 13 months and the other remained in hospice care at time of manuscript submission.

Lead author Merline Benny, MD, with the division of neonatology, department of pediatrics at University of Miami, and colleagues briefed reporters today ahead of the release.

Zelda Calvert

“This is a first,” said senior author Shahnaz Duara, MD, medical director of the Neonatal Intensive Care Unit at Holtz Children’s Hospital, Miami, explaining it is the first study to confirm cross-placental SARS-CoV-2 transmission leading to brain injury in a newborn.
 

Both infants negative for the virus at birth

The two infants were admitted in the early days of the pandemic in the Delta wave to the neonatal ICU at Holtz Children’s Hospital at University of Miami/Jackson Memorial Medical Center.

Both infants tested negative for the virus at birth, but had significantly elevated SARS-CoV-2 antibodies in their blood, indicating that either antibodies crossed the placenta, or the virus crossed and the immune response was the baby’s.

Dr. Benny explained that the researchers have seen, to this point, more than 700 mother/infant pairs in whom the mother tested positive for COVID in Jackson hospital.

Most who tested positive for COVID were asymptomatic and most of the mothers and infants left the hospital without complications.

“However, (these) two babies had a very unusual clinical picture,” Dr. Benny said.

Those infants were born to mothers who became COVID positive in the second trimester and delivered a few weeks later.

Seizures started on day 1 of life

The babies began to seize from the first day of life. They had profound low tone (hypotonia) in their clinical exam, Dr. Benny explained.

“We had absolutely no good explanation for the early seizures and the degree of brain injury we saw,” Dr. Duara said.

Dr. Benny said that as their bodies grew, they had very small head circumference. Unlike some babies born with the Zika virus, these babies were not microcephalic at birth. Brain imaging on the two babies indicated significant brain atrophy, and neurodevelopment exams showed significant delay.

Discussions began with the center’s multidisciplinary team including neurologists, pathologists, neuroradiologists, and obstetricians who cared for both the mothers and the babies.

The experts examined the placentas and found some characteristic COVID changes and presence of the COVID virus. This was accompanied by increased markers for inflammation and a severe reduction in a hormone critical for placental health and brain development.

Examining the infant’s autopsy findings further raised suspicions of maternal transmission, something that had not been documented before.

Coauthor Ali G. Saad, MD, pediatric and perinatal pathology director at Miami, said, “I have seen literally thousands of brains in autopsies over the last 14 years, and this was the most dramatic case of leukoencephalopathy or loss of white matter in a patient with no significant reason. That’s what triggered the investigation.”
 

Mothers had very different presentations

Coauthor Michael J. Paidas, MD, with the department of obstetrics, gynecology, and reproductive sciences at Miami, pointed out that the circumstances of the two mothers, who were in their 20s, were very different.

One mother delivered at 32 weeks and had a very severe COVID presentation and spent a month in the intensive care unit. The team decided to deliver the child to save the mother, Dr. Paidas said.

In contrast, the other mother had asymptomatic COVID infection in the second trimester and delivered at full term.

He said one of the early suspicions in the babies’ presentations was hypoxic ischemic encephalopathy. “But it wasn’t lack of blood flow to the placenta that caused this,” he said. “As best we can tell, it was the viral infection.”
 

Instances are rare

The researchers emphasized that these instances are rare and have not been seen before or since the period of this study to their knowledge.

Dr. Duara said, “This is something we want to alert the medical community to more than the general public. We do not want the lay public to be panicked. We’re trying to understand what made these two pregnancies different, so we can direct research towards protecting vulnerable babies.”

Previous data have indicated a relatively benign status in infants who test negative for the COVID virus after birth. Dr. Benny added that COVID vaccination has been found safe in pregnancy and both vaccination and breastfeeding can help passage of antibodies to the infant and help protect the baby. Because these cases happened in the early days of the pandemic, no vaccines were available.

Dr. Paidas received funding from BioIncept to study hypoxic-ischemic encephalopathy with Preimplantation Factor, is a scientific advisory board member, and has stock options. Dr. Paidas and coauthor Dr. Jayakumar are coinventors of SPIKENET, University of Miami, patent pending 2023. The other authors have no conflicts of interest to disclose.

Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID. 

“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”

Ms. McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she said many doctors still don’t know the hallmark symptoms of the condition or how to treat it. 

“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”

The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it. 

While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID. But with no standard diagnostic tests, treatment guidelines, standard care recommendations, and a large range of symptoms the condition can produce, doctors may not know what to look for, nor how to help patients.

“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center, New York. “It’s a complicated disease that can impact every organ system of the body.”

Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them: the key systems and organs impacted by the disease, the most common symptoms, useful therapeutic options for symptom management that have been found to help people with long COVID, and the best healthy lifestyle choices that doctors can recommend to help their patients 

Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors. 
 

Key systems, organs impacted

About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that Ms. McCorkell helped coauthor. But more than 3 years into the pandemic, much about the condition is still a mystery.

COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started. 

“We know that there are dozens of symptoms across multiple organ systems,” said Ms. McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”

A paper published in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups: 

• Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
• Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
• In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
• In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting

There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.

This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at New York University Langone Medical Center who also specializes in treating patients with long COVID. 

But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.
 

Checklist of symptoms 

Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID.

Postexertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York, who says that he sees it in about 90% of patients who come to his long COVID clinic. 

PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or 2 after the activity, but it can last for days, and sometimes weeks. 

“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”

Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy. 

“In my practice, about 80% of patients meet criteria for dysautonomia,” said Dr. Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.

One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.

Exercise intolerance. A review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors. 

“This is especially important because it can’t be explained just by deconditioning,” said Dr. Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause postexertional malaise, which sets patients back and delays recovery.”

While long COVID can cause dozens of symptoms, a paper Ms. McCorkell coauthored zeroed in on some of the most common ones: chest pain, heart palpitations, coughing, shortness of breath, belly pain, nausea, problems with mental skills, fatigue, disordered sleep, memory loss, ringing in the ears (tinnitus), erectile dysfunction, irregular menstruation, and worsened premenstrual syndrome.

While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others. 

“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Dr. Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.” 

It’s not just what symptoms are, but when they began to occur, he added. “Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or 2 after getting sick.”
 

Can you prevent long COVID?

You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%. 

In addition, a study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: a healthy weight (a body mass index between 18.5 and 24.7 kg/m²), never-smoker, moderate alcohol consumption, a high-quality diet, 7-9 hours of sleep a night, and at least 150 minutes per week of physical activity

But Ms. McCorkell noted that she herself had a healthy preinfection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.

“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”

A version of this article first appeared on WebMD.com.

Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID. 

“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”

Ms. McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she said many doctors still don’t know the hallmark symptoms of the condition or how to treat it. 

“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”

The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it. 

While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID. But with no standard diagnostic tests, treatment guidelines, standard care recommendations, and a large range of symptoms the condition can produce, doctors may not know what to look for, nor how to help patients.

“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center, New York. “It’s a complicated disease that can impact every organ system of the body.”

Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them: the key systems and organs impacted by the disease, the most common symptoms, useful therapeutic options for symptom management that have been found to help people with long COVID, and the best healthy lifestyle choices that doctors can recommend to help their patients 

Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors. 
 

Key systems, organs impacted

About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that Ms. McCorkell helped coauthor. But more than 3 years into the pandemic, much about the condition is still a mystery.

COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started. 

“We know that there are dozens of symptoms across multiple organ systems,” said Ms. McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”

A paper published in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups: 

• Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
• Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
• In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
• In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting

There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.

This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at New York University Langone Medical Center who also specializes in treating patients with long COVID. 

But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.
 

Checklist of symptoms 

Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID.

Postexertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York, who says that he sees it in about 90% of patients who come to his long COVID clinic. 

PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or 2 after the activity, but it can last for days, and sometimes weeks. 

“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”

Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy. 

“In my practice, about 80% of patients meet criteria for dysautonomia,” said Dr. Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.

One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.

Exercise intolerance. A review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors. 

“This is especially important because it can’t be explained just by deconditioning,” said Dr. Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause postexertional malaise, which sets patients back and delays recovery.”

While long COVID can cause dozens of symptoms, a paper Ms. McCorkell coauthored zeroed in on some of the most common ones: chest pain, heart palpitations, coughing, shortness of breath, belly pain, nausea, problems with mental skills, fatigue, disordered sleep, memory loss, ringing in the ears (tinnitus), erectile dysfunction, irregular menstruation, and worsened premenstrual syndrome.

While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others. 

“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Dr. Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.” 

It’s not just what symptoms are, but when they began to occur, he added. “Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or 2 after getting sick.”
 

Can you prevent long COVID?

You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%. 

In addition, a study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: a healthy weight (a body mass index between 18.5 and 24.7 kg/m²), never-smoker, moderate alcohol consumption, a high-quality diet, 7-9 hours of sleep a night, and at least 150 minutes per week of physical activity

But Ms. McCorkell noted that she herself had a healthy preinfection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.

“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”

A version of this article first appeared on WebMD.com.

Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID. 

“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”

Ms. McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she said many doctors still don’t know the hallmark symptoms of the condition or how to treat it. 

“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”

The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it. 

While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID. But with no standard diagnostic tests, treatment guidelines, standard care recommendations, and a large range of symptoms the condition can produce, doctors may not know what to look for, nor how to help patients.

“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center, New York. “It’s a complicated disease that can impact every organ system of the body.”

Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them: the key systems and organs impacted by the disease, the most common symptoms, useful therapeutic options for symptom management that have been found to help people with long COVID, and the best healthy lifestyle choices that doctors can recommend to help their patients 

Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors. 
 

Key systems, organs impacted

About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that Ms. McCorkell helped coauthor. But more than 3 years into the pandemic, much about the condition is still a mystery.

COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started. 

“We know that there are dozens of symptoms across multiple organ systems,” said Ms. McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”

A paper published in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups: 

• Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
• Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
• In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
• In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting

There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.

This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at New York University Langone Medical Center who also specializes in treating patients with long COVID. 

But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.
 

Checklist of symptoms 

Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID.

Postexertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York, who says that he sees it in about 90% of patients who come to his long COVID clinic. 

PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or 2 after the activity, but it can last for days, and sometimes weeks. 

“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”

Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy. 

“In my practice, about 80% of patients meet criteria for dysautonomia,” said Dr. Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.

One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.

Exercise intolerance. A review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors. 

“This is especially important because it can’t be explained just by deconditioning,” said Dr. Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause postexertional malaise, which sets patients back and delays recovery.”

While long COVID can cause dozens of symptoms, a paper Ms. McCorkell coauthored zeroed in on some of the most common ones: chest pain, heart palpitations, coughing, shortness of breath, belly pain, nausea, problems with mental skills, fatigue, disordered sleep, memory loss, ringing in the ears (tinnitus), erectile dysfunction, irregular menstruation, and worsened premenstrual syndrome.

While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others. 

“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Dr. Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.” 

It’s not just what symptoms are, but when they began to occur, he added. “Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or 2 after getting sick.”
 

Can you prevent long COVID?

You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%. 

In addition, a study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: a healthy weight (a body mass index between 18.5 and 24.7 kg/m²), never-smoker, moderate alcohol consumption, a high-quality diet, 7-9 hours of sleep a night, and at least 150 minutes per week of physical activity

But Ms. McCorkell noted that she herself had a healthy preinfection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.

“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”

A version of this article first appeared on WebMD.com.