Long COVID

In early September, about a week after recovering from COVID-19, Barri Sanders went to the bank to pay a bill. But by mistake, she transferred a large amount of money from the wrong account.

“I’m talking about $20,000,” she said. “I had to go back [later] and fix it.”

Ms. Sanders, 83, had not had confusion like that before. Suddenly, the Albuquerque, N.M., resident found herself looking up from a book and not remembering what she had just read. She would stand up from her chair and forget what she meant to do.

“I kind of thought it was just the aging process,” she said. Combined with sudden balance issues, insomnia, and a nagging postnasal drip, the overall effect was “subtle, but scary,” she said.

After 5 days of this, she went to bed and slept the whole night through. She woke up in the morning to find her balanced restored, her sinuses clear, and the mental fog gone. What she’d had, she realized, wasn’t a rapid start of dementia, but rather a mercifully short form of long COVID.

Somewhere between 22% and 32% of people who recover from COVID-19 get “brain fog,” a nonscientific term used to describe slow or sluggish thinking. While this is disturbing at any age, it can be particularly upsetting to older patients and their caregivers, who fear they’re having or witnessing not just an after-effect of a disease, but the start of a permanent loss of thinking skills. And some scientists are starting to confirm what doctors, patients, and their families can already see: Older patients who have had COVID-19 have a higher risk of getting dementia or, if they already have mental confusion, the illness may worsen their condition.

British scientists who studied medical records from around the world reported in the journal The Lancet Psychiatry that people who recovered from COVID-19 had a higher risk of problems with their thinking and dementia even after 2 years had passed.

Another 2022 study, published in JAMA Neurology, looked at older COVID-19 patients for a year after they were discharged from hospitals in Wuhan, China. Compared with uninfected people, those who survived a severe case of COVID-19 were at higher risk for early onset, late-onset, and progressive decline in their thinking skills. Those who survived a mild infection were at a higher risk for early onset decline, the study found.

Eran Metzger, MD, assistant professor of psychiatry at Beth Israel Deaconess Medical Center in Boston, said he’s noticed that COVID-19 makes some older patients confused, and their brains don’t regain their former clarity.

“We see a stepwise decline in their cognition during the COVID episode, and then they never get back up to their baseline,” said Dr. Metzger, medical director at Hebrew SeniorLife.

New research is beginning to back up such findings.

People who got COVID-19 were twice as likely to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID, according to a study published in the journal Nature Medicine , which analyzed the health care databases of the U.S. Department of Veterans Affairs.

Joshua Cahan, MD, a cognitive neurologist at Northwestern University, Chicago, advises caution about applying such a specific label simply from a patient’s medical chart. After all, he noted, few patients get tested to confirm that they have the proteins linked to Alzheimer’s.

“Probably the most appropriate conclusion from that is that there’s an increased risk of dementia after a COVID infection,” he said, “but we don’t know whether it’s truly Alzheimer’s disease or not.”

There could be a number of reasons why COVID-19 triggers a decline in thinking skills, says Michelle Monje, MD, a neuroscientist and neuro-oncologist at Stanford (Calif.) University.

In a paper published in the journal Neuron, Dr. Monje and her coauthor, Akiko Iwasaki, PhD, professor of immunobiology at Yale University, New Haven, Conn., propose possible triggers for brain fog caused by COVID: inflammation in the lungs and respiratory passages that leads to inflammation and dysregulation of the central nervous system; autoimmune reactions that damage the central nervous system; brain infection directly caused by the coronavirus (though, they note, this appears rare); a reactivation of an Epstein-Barr virus, which can lead to neuroinflammation; triggered by the coronavirus; and/or complications from severe cases of COVID-19, possibly involving periods of low blood oxygen and multi-organ failure.

Scientific understanding of brain fog is “part of an emerging picture that inflammation elsewhere in the body can be transmitted to become inflammation in the brain,” Dr. Monje said. “And once there’s inflammation in the brain … that can dysregulate other cell types that normally support healthy cognitive function.”

One issue with the concept of brain fog is that, like the term itself, the condition can be tough to define for doctors and patients alike and difficult, if not impossible, to capture on common cognition tests.

These days, patients often arrive at the Center of Excellence for Alzheimer’s Disease, in Syracuse, N.Y., complaining that they “don’t feel the same” as they did before contracting COVID-19, said Sharon Brangman, MD, the center’s director and the chair of the geriatrics department at Upstate Medical University.

But the evidence of diminished cognition just isn’t there.

“There’s nothing that we can find, objectively, that’s wrong with them,” she said. “They’re not severe enough to score low on mental status testing.”

But specialized, directed testing can find some probable signs, said Dr. Cahan, who evaluates patient cognition in a long COVID clinic at Northwestern University.

He often finds that his long COVID patients score in the low normal range on cognitive testing.

“Patients do have a complaint that something’s changed, and we don’t have prior testing,” he said. “So it’s possible that they were maybe in the high normal range or the superior range, but you just don’t know.”

He said he has seen very high-performing people, such as lawyers, executives, PhDs, and other professionals, who have tests that might be interpreted as normal, but given their level of achievement, “you would expect [higher scores].”

Like Ms. Sanders, many of those who do have muddled thinking after a COVID infection return to their former mental status. A study published in the journal Brain Communications  found that people who had recovered from COVID-19, even if they had a mild illness, were significantly more likely to have memory and other cognition issues in the months after infection. But after 9 months, the former COVID patients had returned to their normal level of cognition, the team at Britain’s University of Oxford reported.

Notably, though, the average age of the people in the study was 28.6.

At the Northwestern clinic, Dr. Cahan treats patients who have struggled with COVID-induced cognition issues for months or even years. A rehabilitation program involves working with patients to come up with ways to compensate for cognitive deficits – such as making lists – as well as brain exercises, Dr. Cahan said. Over time, patients may achieve a 75% to 85% improvement, he said.

Dr. Monje hopes that one day, science will come up with ways to fully reverse the decline.

“I think what is likely the most common contributor to brain fog is this neuroinflammation, causing dysfunction of other cell types,” she said. “And, at least in the laboratory, we can rescue that in mouse models of chemotherapy brain fog, which gives me hope that we can rescue that for people.”
 

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

In early September, about a week after recovering from COVID-19, Barri Sanders went to the bank to pay a bill. But by mistake, she transferred a large amount of money from the wrong account.

“I’m talking about $20,000,” she said. “I had to go back [later] and fix it.”

Ms. Sanders, 83, had not had confusion like that before. Suddenly, the Albuquerque, N.M., resident found herself looking up from a book and not remembering what she had just read. She would stand up from her chair and forget what she meant to do.

“I kind of thought it was just the aging process,” she said. Combined with sudden balance issues, insomnia, and a nagging postnasal drip, the overall effect was “subtle, but scary,” she said.

After 5 days of this, she went to bed and slept the whole night through. She woke up in the morning to find her balanced restored, her sinuses clear, and the mental fog gone. What she’d had, she realized, wasn’t a rapid start of dementia, but rather a mercifully short form of long COVID.

Somewhere between 22% and 32% of people who recover from COVID-19 get “brain fog,” a nonscientific term used to describe slow or sluggish thinking. While this is disturbing at any age, it can be particularly upsetting to older patients and their caregivers, who fear they’re having or witnessing not just an after-effect of a disease, but the start of a permanent loss of thinking skills. And some scientists are starting to confirm what doctors, patients, and their families can already see: Older patients who have had COVID-19 have a higher risk of getting dementia or, if they already have mental confusion, the illness may worsen their condition.

British scientists who studied medical records from around the world reported in the journal The Lancet Psychiatry that people who recovered from COVID-19 had a higher risk of problems with their thinking and dementia even after 2 years had passed.

Another 2022 study, published in JAMA Neurology, looked at older COVID-19 patients for a year after they were discharged from hospitals in Wuhan, China. Compared with uninfected people, those who survived a severe case of COVID-19 were at higher risk for early onset, late-onset, and progressive decline in their thinking skills. Those who survived a mild infection were at a higher risk for early onset decline, the study found.

Eran Metzger, MD, assistant professor of psychiatry at Beth Israel Deaconess Medical Center in Boston, said he’s noticed that COVID-19 makes some older patients confused, and their brains don’t regain their former clarity.

“We see a stepwise decline in their cognition during the COVID episode, and then they never get back up to their baseline,” said Dr. Metzger, medical director at Hebrew SeniorLife.

New research is beginning to back up such findings.

People who got COVID-19 were twice as likely to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID, according to a study published in the journal Nature Medicine , which analyzed the health care databases of the U.S. Department of Veterans Affairs.

Joshua Cahan, MD, a cognitive neurologist at Northwestern University, Chicago, advises caution about applying such a specific label simply from a patient’s medical chart. After all, he noted, few patients get tested to confirm that they have the proteins linked to Alzheimer’s.

“Probably the most appropriate conclusion from that is that there’s an increased risk of dementia after a COVID infection,” he said, “but we don’t know whether it’s truly Alzheimer’s disease or not.”

There could be a number of reasons why COVID-19 triggers a decline in thinking skills, says Michelle Monje, MD, a neuroscientist and neuro-oncologist at Stanford (Calif.) University.

In a paper published in the journal Neuron, Dr. Monje and her coauthor, Akiko Iwasaki, PhD, professor of immunobiology at Yale University, New Haven, Conn., propose possible triggers for brain fog caused by COVID: inflammation in the lungs and respiratory passages that leads to inflammation and dysregulation of the central nervous system; autoimmune reactions that damage the central nervous system; brain infection directly caused by the coronavirus (though, they note, this appears rare); a reactivation of an Epstein-Barr virus, which can lead to neuroinflammation; triggered by the coronavirus; and/or complications from severe cases of COVID-19, possibly involving periods of low blood oxygen and multi-organ failure.

Scientific understanding of brain fog is “part of an emerging picture that inflammation elsewhere in the body can be transmitted to become inflammation in the brain,” Dr. Monje said. “And once there’s inflammation in the brain … that can dysregulate other cell types that normally support healthy cognitive function.”

One issue with the concept of brain fog is that, like the term itself, the condition can be tough to define for doctors and patients alike and difficult, if not impossible, to capture on common cognition tests.

These days, patients often arrive at the Center of Excellence for Alzheimer’s Disease, in Syracuse, N.Y., complaining that they “don’t feel the same” as they did before contracting COVID-19, said Sharon Brangman, MD, the center’s director and the chair of the geriatrics department at Upstate Medical University.

But the evidence of diminished cognition just isn’t there.

“There’s nothing that we can find, objectively, that’s wrong with them,” she said. “They’re not severe enough to score low on mental status testing.”

But specialized, directed testing can find some probable signs, said Dr. Cahan, who evaluates patient cognition in a long COVID clinic at Northwestern University.

He often finds that his long COVID patients score in the low normal range on cognitive testing.

“Patients do have a complaint that something’s changed, and we don’t have prior testing,” he said. “So it’s possible that they were maybe in the high normal range or the superior range, but you just don’t know.”

He said he has seen very high-performing people, such as lawyers, executives, PhDs, and other professionals, who have tests that might be interpreted as normal, but given their level of achievement, “you would expect [higher scores].”

Like Ms. Sanders, many of those who do have muddled thinking after a COVID infection return to their former mental status. A study published in the journal Brain Communications  found that people who had recovered from COVID-19, even if they had a mild illness, were significantly more likely to have memory and other cognition issues in the months after infection. But after 9 months, the former COVID patients had returned to their normal level of cognition, the team at Britain’s University of Oxford reported.

Notably, though, the average age of the people in the study was 28.6.

At the Northwestern clinic, Dr. Cahan treats patients who have struggled with COVID-induced cognition issues for months or even years. A rehabilitation program involves working with patients to come up with ways to compensate for cognitive deficits – such as making lists – as well as brain exercises, Dr. Cahan said. Over time, patients may achieve a 75% to 85% improvement, he said.

Dr. Monje hopes that one day, science will come up with ways to fully reverse the decline.

“I think what is likely the most common contributor to brain fog is this neuroinflammation, causing dysfunction of other cell types,” she said. “And, at least in the laboratory, we can rescue that in mouse models of chemotherapy brain fog, which gives me hope that we can rescue that for people.”
 

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

In early September, about a week after recovering from COVID-19, Barri Sanders went to the bank to pay a bill. But by mistake, she transferred a large amount of money from the wrong account.

“I’m talking about $20,000,” she said. “I had to go back [later] and fix it.”

Ms. Sanders, 83, had not had confusion like that before. Suddenly, the Albuquerque, N.M., resident found herself looking up from a book and not remembering what she had just read. She would stand up from her chair and forget what she meant to do.

“I kind of thought it was just the aging process,” she said. Combined with sudden balance issues, insomnia, and a nagging postnasal drip, the overall effect was “subtle, but scary,” she said.

After 5 days of this, she went to bed and slept the whole night through. She woke up in the morning to find her balanced restored, her sinuses clear, and the mental fog gone. What she’d had, she realized, wasn’t a rapid start of dementia, but rather a mercifully short form of long COVID.

Somewhere between 22% and 32% of people who recover from COVID-19 get “brain fog,” a nonscientific term used to describe slow or sluggish thinking. While this is disturbing at any age, it can be particularly upsetting to older patients and their caregivers, who fear they’re having or witnessing not just an after-effect of a disease, but the start of a permanent loss of thinking skills. And some scientists are starting to confirm what doctors, patients, and their families can already see: Older patients who have had COVID-19 have a higher risk of getting dementia or, if they already have mental confusion, the illness may worsen their condition.

British scientists who studied medical records from around the world reported in the journal The Lancet Psychiatry that people who recovered from COVID-19 had a higher risk of problems with their thinking and dementia even after 2 years had passed.

Another 2022 study, published in JAMA Neurology, looked at older COVID-19 patients for a year after they were discharged from hospitals in Wuhan, China. Compared with uninfected people, those who survived a severe case of COVID-19 were at higher risk for early onset, late-onset, and progressive decline in their thinking skills. Those who survived a mild infection were at a higher risk for early onset decline, the study found.

Eran Metzger, MD, assistant professor of psychiatry at Beth Israel Deaconess Medical Center in Boston, said he’s noticed that COVID-19 makes some older patients confused, and their brains don’t regain their former clarity.

“We see a stepwise decline in their cognition during the COVID episode, and then they never get back up to their baseline,” said Dr. Metzger, medical director at Hebrew SeniorLife.

New research is beginning to back up such findings.

People who got COVID-19 were twice as likely to receive a diagnosis of Alzheimer’s disease in the 12 months after infection, compared to those who didn’t get COVID, according to a study published in the journal Nature Medicine , which analyzed the health care databases of the U.S. Department of Veterans Affairs.

Joshua Cahan, MD, a cognitive neurologist at Northwestern University, Chicago, advises caution about applying such a specific label simply from a patient’s medical chart. After all, he noted, few patients get tested to confirm that they have the proteins linked to Alzheimer’s.

“Probably the most appropriate conclusion from that is that there’s an increased risk of dementia after a COVID infection,” he said, “but we don’t know whether it’s truly Alzheimer’s disease or not.”

There could be a number of reasons why COVID-19 triggers a decline in thinking skills, says Michelle Monje, MD, a neuroscientist and neuro-oncologist at Stanford (Calif.) University.

In a paper published in the journal Neuron, Dr. Monje and her coauthor, Akiko Iwasaki, PhD, professor of immunobiology at Yale University, New Haven, Conn., propose possible triggers for brain fog caused by COVID: inflammation in the lungs and respiratory passages that leads to inflammation and dysregulation of the central nervous system; autoimmune reactions that damage the central nervous system; brain infection directly caused by the coronavirus (though, they note, this appears rare); a reactivation of an Epstein-Barr virus, which can lead to neuroinflammation; triggered by the coronavirus; and/or complications from severe cases of COVID-19, possibly involving periods of low blood oxygen and multi-organ failure.

Scientific understanding of brain fog is “part of an emerging picture that inflammation elsewhere in the body can be transmitted to become inflammation in the brain,” Dr. Monje said. “And once there’s inflammation in the brain … that can dysregulate other cell types that normally support healthy cognitive function.”

One issue with the concept of brain fog is that, like the term itself, the condition can be tough to define for doctors and patients alike and difficult, if not impossible, to capture on common cognition tests.

These days, patients often arrive at the Center of Excellence for Alzheimer’s Disease, in Syracuse, N.Y., complaining that they “don’t feel the same” as they did before contracting COVID-19, said Sharon Brangman, MD, the center’s director and the chair of the geriatrics department at Upstate Medical University.

But the evidence of diminished cognition just isn’t there.

“There’s nothing that we can find, objectively, that’s wrong with them,” she said. “They’re not severe enough to score low on mental status testing.”

But specialized, directed testing can find some probable signs, said Dr. Cahan, who evaluates patient cognition in a long COVID clinic at Northwestern University.

He often finds that his long COVID patients score in the low normal range on cognitive testing.

“Patients do have a complaint that something’s changed, and we don’t have prior testing,” he said. “So it’s possible that they were maybe in the high normal range or the superior range, but you just don’t know.”

He said he has seen very high-performing people, such as lawyers, executives, PhDs, and other professionals, who have tests that might be interpreted as normal, but given their level of achievement, “you would expect [higher scores].”

Like Ms. Sanders, many of those who do have muddled thinking after a COVID infection return to their former mental status. A study published in the journal Brain Communications  found that people who had recovered from COVID-19, even if they had a mild illness, were significantly more likely to have memory and other cognition issues in the months after infection. But after 9 months, the former COVID patients had returned to their normal level of cognition, the team at Britain’s University of Oxford reported.

Notably, though, the average age of the people in the study was 28.6.

At the Northwestern clinic, Dr. Cahan treats patients who have struggled with COVID-induced cognition issues for months or even years. A rehabilitation program involves working with patients to come up with ways to compensate for cognitive deficits – such as making lists – as well as brain exercises, Dr. Cahan said. Over time, patients may achieve a 75% to 85% improvement, he said.

Dr. Monje hopes that one day, science will come up with ways to fully reverse the decline.

“I think what is likely the most common contributor to brain fog is this neuroinflammation, causing dysfunction of other cell types,” she said. “And, at least in the laboratory, we can rescue that in mouse models of chemotherapy brain fog, which gives me hope that we can rescue that for people.”
 

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

Diagnosing long COVID is something of an art for doctors who, without any formal criteria, say they know it when they see it. Treating the condition requires equal combinations of skill, experience, and intuition, and doctors waiting for guidelines have started cobbling together treatment plans designed to ease the worst symptoms.

Their work is urgent. In the United States alone, as many as 29 million people have long COVID, according to estimates from the American Academy of Physical Medicine and Rehabilitation.

“Patients with long COVID have on average at least 14 different symptoms involving nine or more different organ systems, so a holistic approach to treatment is essential,” said Janna Friedly, MD, executive director of the Post-COVID Rehabilitation and Recovery Clinic at the University of Washington in Seattle. 

For acute COVID cases, the National Institutes of Health has treatment guidelines that are taking a lot of the guesswork out of managing patients’ complex mix of symptoms. This has made it easier for primary care providers to manage people with milder cases and for specialists to come up with effective treatment plans for those with severe illness. But no such guidelines exist for long COVID, and this is making it harder for many doctors – particularly in primary care – to determine the best treatment. 

While there isn’t a single treatment that is effective for all long-COVID symptoms – and nothing is approved by the Food and Drug Administration specifically for this syndrome – doctors do have tools, Dr. Friedly said. 

“We always start with the basics – making sure we help patients get enough restorative sleep, optimizing their nutrition, ensuring proper hydration, reducing stress, breathing exercises, and restorative exercise – because all of these are critically important to helping people’s immune system stay as healthy as possible,” she said. “In addition, we help people manage the anxiety and depression that may be exacerbating their symptoms.”

Fatigue is an obvious target. Widely available screening tools, including assessments that have been used in cancer patients and people with chronic fatigue syndrome, can pinpoint how bad symptoms are in long-COVID patients. 

“Fatigue is generally the No. 1 symptom,” said Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the COVID-19 Recovery Clinic at the University of Texas Health Science Center in San Antonio. “If a patient has this, then their therapy program has to look very different, because they actually do better with pacing themselves.”

This was the first symptom tackled in a series of long-COVID treatment guidelines issued by the medical society representing many of the providers on the front lines with these patients every day – the American Academy of Physical Medicine and Rehabilitation. These fatigue guidelines stress the importance of rest, energy conservation, and proper hydration. 

For patients with only mild fatigue who can still keep up with essential activities like work and school, activity programs may begin with a gradual return to daily routines such as housework or going out with friends. As long as they have no setbacks, patients can also start with light aerobic exercise and make it more intense and frequent over time. As long as they have no setbacks in symptoms, they can ramp up exercise by about 10% every 10 days. 

But with severe fatigue, this is too much, too soon. Activity plans are more apt to start with only light stretching and progress to light muscle strengthening before any aerobic exercise enters the picture. 

“Traditional exercise programs may be harmful to some patients with long COVID,” said Dr. Verduzco-Gutierrez. “Many cannot tolerate graded exercise [where exertion slowly ramps up], and it actually can make them worse.” 

There’s less consensus on other options for treating fatigue, like prescription medications, dietary supplements, and acupuncture. Some doctors have tried prescription drugs like the antiviral and movement disorder medication amantadine, the narcolepsy drug modafinil, and the stimulant methylphenidate, which have been studied for managing fatigue in patients with other conditions like cancer, multiple sclerosis, traumatic brain injuries, and Parkinson’s disease. But there isn’t yet clear evidence from clinical trials about how well these options work for long COVID. 

Similarly, interventions to tackle neurological symptoms and cognitive problems borrow a page from treatments used for other conditions like stroke and dementia – but require changes to meet the needs of those with long COVID. Four in five long-COVID patients with neurological and cognitive issues have brain fog, while more than two-thirds have headaches, and more than half have numbness and tingling in their extremities, loss of taste, loss of smell, and muscle pain, one study suggests.

Patients with deficits in areas like memory, attention, executive function, and visual and spatial planning may get speech therapy or occupational therapy, for example – both approaches that are common in people with cognitive decline caused by other medical conditions. 

Doctors also promote good sleep practices and treating any mood disorders – both of which can contribute to cognitive problems. But they often have to skip one of the best interventions for improving brain function – exercise – because so many long-COVID patients struggle with fatigue and exertion or have cardiovascular issues that limit their exercise. 

The lack of formal guidelines is especially a problem because there aren’t nearly enough specialists to manage the surge of patients who need treatment for issues like fatigue and brain fog. And without guidelines, primary care providers lack a reliable road map to guide referrals that many patients may need. 

“Given the complexity of long COVID and the wide range of symptoms and medical issues associated with long COVID, most physicians, regardless of specialty, will need to evaluate and treat long-COVID symptoms,” said Dr. Friedly. “And yet, most do not have the knowledge or experience to effectively manage long-COVID symptoms, so having guidelines that can be updated as more research is conducted is critical.”

One barrier to developing guidelines for long COVID is the lack of research into the biological causes of fatigue and autonomic dysfunction – nervous system damage that can impact critical things like blood pressure, digestion, and body temperature – that affect so many long-COVID patients, said Alba Miranda Azola, MD, codirector of the Post-Acute COVID-19 Team at Johns Hopkins University in Baltimore. 

Research is also progressing much more slowly for long COVID than it did for those hospitalized with severe acute infections. The logistics of running rigorous studies to prove which treatments work best for specific symptoms – information needed to create definitive treatment guidelines – are much more complicated for people with long COVID who live at home and may be too exhausted or too preoccupied with their daily lives to take part in research. 

The vast number of symptoms, surfacing in different ways for each patient, also make it hard to isolate specific ways to manage specific long-COVID symptoms. Even when two patients have fatigue and brain fog, they may still need different treatments based on the complex mix of other symptoms they have. 

“All long-COVID patients are not equal, and it is critical that research focuses on establishing specific descriptions of the disease,” Dr. Azola said. 

The National Institutes of Health is working on this through its long-COVID Recover Initiative. It’s unclear how long it will take for this research to yield enough definitive information to inform long-COVID treatment guidelines similar to what the agency produced for acute coronavirus infections, and it didn’t respond to questions about the timeline. 

But over the next few months, the National Institutes of Health expects to begin several clinical trials focused on some of the symptoms that doctors are seeing most often in their clinics, like fatigue, brain fog, exercise intolerance, sleep disturbances, and changes in the nervous system’s ability to regulate key functions like heart rate and body temperature. 

One trial starting in January will examine whether the COVID-19 drug Paxlovid can help. A recent preprint Department of Veterans Affairs study showed patients treated with Paxlovid were less likely to get long COVID in the first place.

Some professionals aren’t waiting for the agency. The LongCovid Research Consortium links researchers from Harvard and Stanford universities; the University of California, San Francisco; the J. Craig Venter Institute; Johns Hopkins University; the University of Pennsylvania; Mount Sinai; Cardiff; and Yale who are studying, for instance, whether tiny blood clots contribute to long COVID and whether drugs can reduce or eliminate them.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” said Gary H. Gibbons, MD, director of the National Heart, Lung, and Blood Institute at the National Institutes of Health. “This is why there will be multiple clinical trials over the coming months that study a range of symptoms, underlying causes, risk factors, outcomes, and potential strategies for treatment and prevention, in people of all races, ethnicities, genders, and ages.”

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

Diagnosing long COVID is something of an art for doctors who, without any formal criteria, say they know it when they see it. Treating the condition requires equal combinations of skill, experience, and intuition, and doctors waiting for guidelines have started cobbling together treatment plans designed to ease the worst symptoms.

Their work is urgent. In the United States alone, as many as 29 million people have long COVID, according to estimates from the American Academy of Physical Medicine and Rehabilitation.

“Patients with long COVID have on average at least 14 different symptoms involving nine or more different organ systems, so a holistic approach to treatment is essential,” said Janna Friedly, MD, executive director of the Post-COVID Rehabilitation and Recovery Clinic at the University of Washington in Seattle. 

For acute COVID cases, the National Institutes of Health has treatment guidelines that are taking a lot of the guesswork out of managing patients’ complex mix of symptoms. This has made it easier for primary care providers to manage people with milder cases and for specialists to come up with effective treatment plans for those with severe illness. But no such guidelines exist for long COVID, and this is making it harder for many doctors – particularly in primary care – to determine the best treatment. 

While there isn’t a single treatment that is effective for all long-COVID symptoms – and nothing is approved by the Food and Drug Administration specifically for this syndrome – doctors do have tools, Dr. Friedly said. 

“We always start with the basics – making sure we help patients get enough restorative sleep, optimizing their nutrition, ensuring proper hydration, reducing stress, breathing exercises, and restorative exercise – because all of these are critically important to helping people’s immune system stay as healthy as possible,” she said. “In addition, we help people manage the anxiety and depression that may be exacerbating their symptoms.”

Fatigue is an obvious target. Widely available screening tools, including assessments that have been used in cancer patients and people with chronic fatigue syndrome, can pinpoint how bad symptoms are in long-COVID patients. 

“Fatigue is generally the No. 1 symptom,” said Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the COVID-19 Recovery Clinic at the University of Texas Health Science Center in San Antonio. “If a patient has this, then their therapy program has to look very different, because they actually do better with pacing themselves.”

This was the first symptom tackled in a series of long-COVID treatment guidelines issued by the medical society representing many of the providers on the front lines with these patients every day – the American Academy of Physical Medicine and Rehabilitation. These fatigue guidelines stress the importance of rest, energy conservation, and proper hydration. 

For patients with only mild fatigue who can still keep up with essential activities like work and school, activity programs may begin with a gradual return to daily routines such as housework or going out with friends. As long as they have no setbacks, patients can also start with light aerobic exercise and make it more intense and frequent over time. As long as they have no setbacks in symptoms, they can ramp up exercise by about 10% every 10 days. 

But with severe fatigue, this is too much, too soon. Activity plans are more apt to start with only light stretching and progress to light muscle strengthening before any aerobic exercise enters the picture. 

“Traditional exercise programs may be harmful to some patients with long COVID,” said Dr. Verduzco-Gutierrez. “Many cannot tolerate graded exercise [where exertion slowly ramps up], and it actually can make them worse.” 

There’s less consensus on other options for treating fatigue, like prescription medications, dietary supplements, and acupuncture. Some doctors have tried prescription drugs like the antiviral and movement disorder medication amantadine, the narcolepsy drug modafinil, and the stimulant methylphenidate, which have been studied for managing fatigue in patients with other conditions like cancer, multiple sclerosis, traumatic brain injuries, and Parkinson’s disease. But there isn’t yet clear evidence from clinical trials about how well these options work for long COVID. 

Similarly, interventions to tackle neurological symptoms and cognitive problems borrow a page from treatments used for other conditions like stroke and dementia – but require changes to meet the needs of those with long COVID. Four in five long-COVID patients with neurological and cognitive issues have brain fog, while more than two-thirds have headaches, and more than half have numbness and tingling in their extremities, loss of taste, loss of smell, and muscle pain, one study suggests.

Patients with deficits in areas like memory, attention, executive function, and visual and spatial planning may get speech therapy or occupational therapy, for example – both approaches that are common in people with cognitive decline caused by other medical conditions. 

Doctors also promote good sleep practices and treating any mood disorders – both of which can contribute to cognitive problems. But they often have to skip one of the best interventions for improving brain function – exercise – because so many long-COVID patients struggle with fatigue and exertion or have cardiovascular issues that limit their exercise. 

The lack of formal guidelines is especially a problem because there aren’t nearly enough specialists to manage the surge of patients who need treatment for issues like fatigue and brain fog. And without guidelines, primary care providers lack a reliable road map to guide referrals that many patients may need. 

“Given the complexity of long COVID and the wide range of symptoms and medical issues associated with long COVID, most physicians, regardless of specialty, will need to evaluate and treat long-COVID symptoms,” said Dr. Friedly. “And yet, most do not have the knowledge or experience to effectively manage long-COVID symptoms, so having guidelines that can be updated as more research is conducted is critical.”

One barrier to developing guidelines for long COVID is the lack of research into the biological causes of fatigue and autonomic dysfunction – nervous system damage that can impact critical things like blood pressure, digestion, and body temperature – that affect so many long-COVID patients, said Alba Miranda Azola, MD, codirector of the Post-Acute COVID-19 Team at Johns Hopkins University in Baltimore. 

Research is also progressing much more slowly for long COVID than it did for those hospitalized with severe acute infections. The logistics of running rigorous studies to prove which treatments work best for specific symptoms – information needed to create definitive treatment guidelines – are much more complicated for people with long COVID who live at home and may be too exhausted or too preoccupied with their daily lives to take part in research. 

The vast number of symptoms, surfacing in different ways for each patient, also make it hard to isolate specific ways to manage specific long-COVID symptoms. Even when two patients have fatigue and brain fog, they may still need different treatments based on the complex mix of other symptoms they have. 

“All long-COVID patients are not equal, and it is critical that research focuses on establishing specific descriptions of the disease,” Dr. Azola said. 

The National Institutes of Health is working on this through its long-COVID Recover Initiative. It’s unclear how long it will take for this research to yield enough definitive information to inform long-COVID treatment guidelines similar to what the agency produced for acute coronavirus infections, and it didn’t respond to questions about the timeline. 

But over the next few months, the National Institutes of Health expects to begin several clinical trials focused on some of the symptoms that doctors are seeing most often in their clinics, like fatigue, brain fog, exercise intolerance, sleep disturbances, and changes in the nervous system’s ability to regulate key functions like heart rate and body temperature. 

One trial starting in January will examine whether the COVID-19 drug Paxlovid can help. A recent preprint Department of Veterans Affairs study showed patients treated with Paxlovid were less likely to get long COVID in the first place.

Some professionals aren’t waiting for the agency. The LongCovid Research Consortium links researchers from Harvard and Stanford universities; the University of California, San Francisco; the J. Craig Venter Institute; Johns Hopkins University; the University of Pennsylvania; Mount Sinai; Cardiff; and Yale who are studying, for instance, whether tiny blood clots contribute to long COVID and whether drugs can reduce or eliminate them.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” said Gary H. Gibbons, MD, director of the National Heart, Lung, and Blood Institute at the National Institutes of Health. “This is why there will be multiple clinical trials over the coming months that study a range of symptoms, underlying causes, risk factors, outcomes, and potential strategies for treatment and prevention, in people of all races, ethnicities, genders, and ages.”

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

Diagnosing long COVID is something of an art for doctors who, without any formal criteria, say they know it when they see it. Treating the condition requires equal combinations of skill, experience, and intuition, and doctors waiting for guidelines have started cobbling together treatment plans designed to ease the worst symptoms.

Their work is urgent. In the United States alone, as many as 29 million people have long COVID, according to estimates from the American Academy of Physical Medicine and Rehabilitation.

“Patients with long COVID have on average at least 14 different symptoms involving nine or more different organ systems, so a holistic approach to treatment is essential,” said Janna Friedly, MD, executive director of the Post-COVID Rehabilitation and Recovery Clinic at the University of Washington in Seattle. 

For acute COVID cases, the National Institutes of Health has treatment guidelines that are taking a lot of the guesswork out of managing patients’ complex mix of symptoms. This has made it easier for primary care providers to manage people with milder cases and for specialists to come up with effective treatment plans for those with severe illness. But no such guidelines exist for long COVID, and this is making it harder for many doctors – particularly in primary care – to determine the best treatment. 

While there isn’t a single treatment that is effective for all long-COVID symptoms – and nothing is approved by the Food and Drug Administration specifically for this syndrome – doctors do have tools, Dr. Friedly said. 

“We always start with the basics – making sure we help patients get enough restorative sleep, optimizing their nutrition, ensuring proper hydration, reducing stress, breathing exercises, and restorative exercise – because all of these are critically important to helping people’s immune system stay as healthy as possible,” she said. “In addition, we help people manage the anxiety and depression that may be exacerbating their symptoms.”

Fatigue is an obvious target. Widely available screening tools, including assessments that have been used in cancer patients and people with chronic fatigue syndrome, can pinpoint how bad symptoms are in long-COVID patients. 

“Fatigue is generally the No. 1 symptom,” said Monica Verduzco-Gutierrez, MD, chair of rehabilitation medicine and director of the COVID-19 Recovery Clinic at the University of Texas Health Science Center in San Antonio. “If a patient has this, then their therapy program has to look very different, because they actually do better with pacing themselves.”

This was the first symptom tackled in a series of long-COVID treatment guidelines issued by the medical society representing many of the providers on the front lines with these patients every day – the American Academy of Physical Medicine and Rehabilitation. These fatigue guidelines stress the importance of rest, energy conservation, and proper hydration. 

For patients with only mild fatigue who can still keep up with essential activities like work and school, activity programs may begin with a gradual return to daily routines such as housework or going out with friends. As long as they have no setbacks, patients can also start with light aerobic exercise and make it more intense and frequent over time. As long as they have no setbacks in symptoms, they can ramp up exercise by about 10% every 10 days. 

But with severe fatigue, this is too much, too soon. Activity plans are more apt to start with only light stretching and progress to light muscle strengthening before any aerobic exercise enters the picture. 

“Traditional exercise programs may be harmful to some patients with long COVID,” said Dr. Verduzco-Gutierrez. “Many cannot tolerate graded exercise [where exertion slowly ramps up], and it actually can make them worse.” 

There’s less consensus on other options for treating fatigue, like prescription medications, dietary supplements, and acupuncture. Some doctors have tried prescription drugs like the antiviral and movement disorder medication amantadine, the narcolepsy drug modafinil, and the stimulant methylphenidate, which have been studied for managing fatigue in patients with other conditions like cancer, multiple sclerosis, traumatic brain injuries, and Parkinson’s disease. But there isn’t yet clear evidence from clinical trials about how well these options work for long COVID. 

Similarly, interventions to tackle neurological symptoms and cognitive problems borrow a page from treatments used for other conditions like stroke and dementia – but require changes to meet the needs of those with long COVID. Four in five long-COVID patients with neurological and cognitive issues have brain fog, while more than two-thirds have headaches, and more than half have numbness and tingling in their extremities, loss of taste, loss of smell, and muscle pain, one study suggests.

Patients with deficits in areas like memory, attention, executive function, and visual and spatial planning may get speech therapy or occupational therapy, for example – both approaches that are common in people with cognitive decline caused by other medical conditions. 

Doctors also promote good sleep practices and treating any mood disorders – both of which can contribute to cognitive problems. But they often have to skip one of the best interventions for improving brain function – exercise – because so many long-COVID patients struggle with fatigue and exertion or have cardiovascular issues that limit their exercise. 

The lack of formal guidelines is especially a problem because there aren’t nearly enough specialists to manage the surge of patients who need treatment for issues like fatigue and brain fog. And without guidelines, primary care providers lack a reliable road map to guide referrals that many patients may need. 

“Given the complexity of long COVID and the wide range of symptoms and medical issues associated with long COVID, most physicians, regardless of specialty, will need to evaluate and treat long-COVID symptoms,” said Dr. Friedly. “And yet, most do not have the knowledge or experience to effectively manage long-COVID symptoms, so having guidelines that can be updated as more research is conducted is critical.”

One barrier to developing guidelines for long COVID is the lack of research into the biological causes of fatigue and autonomic dysfunction – nervous system damage that can impact critical things like blood pressure, digestion, and body temperature – that affect so many long-COVID patients, said Alba Miranda Azola, MD, codirector of the Post-Acute COVID-19 Team at Johns Hopkins University in Baltimore. 

Research is also progressing much more slowly for long COVID than it did for those hospitalized with severe acute infections. The logistics of running rigorous studies to prove which treatments work best for specific symptoms – information needed to create definitive treatment guidelines – are much more complicated for people with long COVID who live at home and may be too exhausted or too preoccupied with their daily lives to take part in research. 

The vast number of symptoms, surfacing in different ways for each patient, also make it hard to isolate specific ways to manage specific long-COVID symptoms. Even when two patients have fatigue and brain fog, they may still need different treatments based on the complex mix of other symptoms they have. 

“All long-COVID patients are not equal, and it is critical that research focuses on establishing specific descriptions of the disease,” Dr. Azola said. 

The National Institutes of Health is working on this through its long-COVID Recover Initiative. It’s unclear how long it will take for this research to yield enough definitive information to inform long-COVID treatment guidelines similar to what the agency produced for acute coronavirus infections, and it didn’t respond to questions about the timeline. 

But over the next few months, the National Institutes of Health expects to begin several clinical trials focused on some of the symptoms that doctors are seeing most often in their clinics, like fatigue, brain fog, exercise intolerance, sleep disturbances, and changes in the nervous system’s ability to regulate key functions like heart rate and body temperature. 

One trial starting in January will examine whether the COVID-19 drug Paxlovid can help. A recent preprint Department of Veterans Affairs study showed patients treated with Paxlovid were less likely to get long COVID in the first place.

Some professionals aren’t waiting for the agency. The LongCovid Research Consortium links researchers from Harvard and Stanford universities; the University of California, San Francisco; the J. Craig Venter Institute; Johns Hopkins University; the University of Pennsylvania; Mount Sinai; Cardiff; and Yale who are studying, for instance, whether tiny blood clots contribute to long COVID and whether drugs can reduce or eliminate them.

“Given the widespread and diverse impact the virus has on the human body, it is unlikely that there will be one cure, one treatment,” said Gary H. Gibbons, MD, director of the National Heart, Lung, and Blood Institute at the National Institutes of Health. “This is why there will be multiple clinical trials over the coming months that study a range of symptoms, underlying causes, risk factors, outcomes, and potential strategies for treatment and prevention, in people of all races, ethnicities, genders, and ages.”

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

After recovery from acute infection with SARS-CoV-2, major stressful life events such as the death of a loved one or financial insecurity can have a significant impact on the development of long COVID symptoms, new research suggests.

Major life stressors in the year after hospital discharge for COVID-19 are “strongly predictive of a lot of the important outcomes that people may face after COVID,” lead investigator Jennifer A. Frontera, MD, a professor in the department of neurology at New York University Langone Health, said in an interview.

These outcomes include depression, brain fog, fatigue, trouble sleeping, and other long COVID symptoms.

The findings were published online in the Journal of the Neurological Sciences.
 

Major stressful events common

Dr. Frontera and the NYU Neurology COVID-19 study team evaluated 451 adults who survived a COVID hospital stay. Of these, 383 completed a 6-month follow-up, 242 completed a 12-month follow-up, and 174 completed follow-up at both time points. 

Within 1 year of discharge, 77 (17%) patients died and 51% suffered a major stressful life event.

In multivariable analyses, major life stressors – including financial insecurity, food insecurity, death of a close contact, and new disability – were strong independent predictors of disability, trouble with activities of daily living, depression, fatigue, sleep problems, and prolonged post-acute COVID symptoms. The adjusted odds ratios for these outcomes ranged from 2.5 to 20.8. 

The research also confirmed the contribution of traditional risk factors for long COVID symptoms, as shown in past studies. These include older age, poor pre-COVID functional status, and more severe initial COVID-19 infection.

Long-term sequelae of COVID are increasingly recognized as major public health issues. 

It has been estimated that roughly 16 million U.S. adults aged 18-65 years ave long COVID, with the often debilitating symptoms keeping up to 4 million out of work. 
 

Holistic approach

Dr. Frontera said it’s important to realize that “sleep, fatigue, anxiety, depression, even cognition are so interwoven with each other that anything that impacts any one of them could have repercussions on the other.”

She added that it “certainly makes sense that there is an interplay or even a bidirectional relationship between the stressors that people face and how well they can recover after COVID.”

Therapies that lessen the trauma of the most stress-inducing life events need to be a central part of treatment for long COVID, with more research needed to validate the best approaches, Dr. Frontera said.

She also noted that social services or case management resources may be able to help address at least some of the stressors that individuals are under – and it is important to refer them to these resources. Referral to mental health services is also important.

“I think it’s really important to take a holistic approach and try to deal with whatever the problem may be,” said Dr. Frontera.

“I’m a neurologist, but as part of my evaluation, I really need to address if there are life stressors or mental health issues that may be impacting this person’s function,” she added.

The study had no commercial funding. The investigators reported no relevant financial relationships.

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

After recovery from acute infection with SARS-CoV-2, major stressful life events such as the death of a loved one or financial insecurity can have a significant impact on the development of long COVID symptoms, new research suggests.

Major life stressors in the year after hospital discharge for COVID-19 are “strongly predictive of a lot of the important outcomes that people may face after COVID,” lead investigator Jennifer A. Frontera, MD, a professor in the department of neurology at New York University Langone Health, said in an interview.

These outcomes include depression, brain fog, fatigue, trouble sleeping, and other long COVID symptoms.

The findings were published online in the Journal of the Neurological Sciences.
 

Major stressful events common

Dr. Frontera and the NYU Neurology COVID-19 study team evaluated 451 adults who survived a COVID hospital stay. Of these, 383 completed a 6-month follow-up, 242 completed a 12-month follow-up, and 174 completed follow-up at both time points. 

Within 1 year of discharge, 77 (17%) patients died and 51% suffered a major stressful life event.

In multivariable analyses, major life stressors – including financial insecurity, food insecurity, death of a close contact, and new disability – were strong independent predictors of disability, trouble with activities of daily living, depression, fatigue, sleep problems, and prolonged post-acute COVID symptoms. The adjusted odds ratios for these outcomes ranged from 2.5 to 20.8. 

The research also confirmed the contribution of traditional risk factors for long COVID symptoms, as shown in past studies. These include older age, poor pre-COVID functional status, and more severe initial COVID-19 infection.

Long-term sequelae of COVID are increasingly recognized as major public health issues. 

It has been estimated that roughly 16 million U.S. adults aged 18-65 years ave long COVID, with the often debilitating symptoms keeping up to 4 million out of work. 
 

Holistic approach

Dr. Frontera said it’s important to realize that “sleep, fatigue, anxiety, depression, even cognition are so interwoven with each other that anything that impacts any one of them could have repercussions on the other.”

She added that it “certainly makes sense that there is an interplay or even a bidirectional relationship between the stressors that people face and how well they can recover after COVID.”

Therapies that lessen the trauma of the most stress-inducing life events need to be a central part of treatment for long COVID, with more research needed to validate the best approaches, Dr. Frontera said.

She also noted that social services or case management resources may be able to help address at least some of the stressors that individuals are under – and it is important to refer them to these resources. Referral to mental health services is also important.

“I think it’s really important to take a holistic approach and try to deal with whatever the problem may be,” said Dr. Frontera.

“I’m a neurologist, but as part of my evaluation, I really need to address if there are life stressors or mental health issues that may be impacting this person’s function,” she added.

The study had no commercial funding. The investigators reported no relevant financial relationships.

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

After recovery from acute infection with SARS-CoV-2, major stressful life events such as the death of a loved one or financial insecurity can have a significant impact on the development of long COVID symptoms, new research suggests.

Major life stressors in the year after hospital discharge for COVID-19 are “strongly predictive of a lot of the important outcomes that people may face after COVID,” lead investigator Jennifer A. Frontera, MD, a professor in the department of neurology at New York University Langone Health, said in an interview.

These outcomes include depression, brain fog, fatigue, trouble sleeping, and other long COVID symptoms.

The findings were published online in the Journal of the Neurological Sciences.
 

Major stressful events common

Dr. Frontera and the NYU Neurology COVID-19 study team evaluated 451 adults who survived a COVID hospital stay. Of these, 383 completed a 6-month follow-up, 242 completed a 12-month follow-up, and 174 completed follow-up at both time points. 

Within 1 year of discharge, 77 (17%) patients died and 51% suffered a major stressful life event.

In multivariable analyses, major life stressors – including financial insecurity, food insecurity, death of a close contact, and new disability – were strong independent predictors of disability, trouble with activities of daily living, depression, fatigue, sleep problems, and prolonged post-acute COVID symptoms. The adjusted odds ratios for these outcomes ranged from 2.5 to 20.8. 

The research also confirmed the contribution of traditional risk factors for long COVID symptoms, as shown in past studies. These include older age, poor pre-COVID functional status, and more severe initial COVID-19 infection.

Long-term sequelae of COVID are increasingly recognized as major public health issues. 

It has been estimated that roughly 16 million U.S. adults aged 18-65 years ave long COVID, with the often debilitating symptoms keeping up to 4 million out of work. 
 

Holistic approach

Dr. Frontera said it’s important to realize that “sleep, fatigue, anxiety, depression, even cognition are so interwoven with each other that anything that impacts any one of them could have repercussions on the other.”

She added that it “certainly makes sense that there is an interplay or even a bidirectional relationship between the stressors that people face and how well they can recover after COVID.”

Therapies that lessen the trauma of the most stress-inducing life events need to be a central part of treatment for long COVID, with more research needed to validate the best approaches, Dr. Frontera said.

She also noted that social services or case management resources may be able to help address at least some of the stressors that individuals are under – and it is important to refer them to these resources. Referral to mental health services is also important.

“I think it’s really important to take a holistic approach and try to deal with whatever the problem may be,” said Dr. Frontera.

“I’m a neurologist, but as part of my evaluation, I really need to address if there are life stressors or mental health issues that may be impacting this person’s function,” she added.

The study had no commercial funding. The investigators reported no relevant financial relationships.

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

Roughly 7% of all adult Americans may currently have had long COVID, with symptoms that have lasted 3 months or longer, according to the latest U.S. government survey done in October. More than a quarter say their condition is severe enough to significantly limit their day-to-day activities – yet the problem is only barely starting to get the attention of employers, the health care system, and policymakers.

With no cure or treatment in sight, long COVID is already burdening not only the health care system, but also the economy – and that burden is set to grow. Many experts worry about the possible long-term ripple effects, from increased spending on medical care costs to lost wages due to not being able to work, as well as the policy implications that come with addressing these issues.

“At this point, anyone who’s looking at this seriously would say this is a huge deal,” says senior Brookings Institution fellow Katie Bach, the author of a study that analyzed long COVID’s impact on the labor market.

“We need a real concerted focus on treating these people, which means both research and the clinical side, and figuring out how to build a labor market that is more inclusive of people with disabilities,” she said.

It’s not only that many people are affected. It’s that they are often affected for months and possibly even years.

The U.S. government figures suggest more than 18 million people could have symptoms of long COVID right now. The latest Household Pulse Survey by the Census Bureau and the National Center for Health Statistics takes data from 41,415 people.

A preprint of a study by researchers from City University of New York, posted on medRxiv in September and based on a similar population survey done between June 30 and July 2, drew comparable results. The study has not been peer reviewed.

More than 7% of all those who answered said they had long COVID at the time of the survey, which the researchers said corresponded to approximately 18.5 million U.S. adults. The same study found that a quarter of those, or an estimated 4.7 million adults, said their daily activities were impacted “a lot.”

This can translate into pain not only for the patients, but for governments and employers, too.

In high-income countries around the world, government surveys and other studies are shedding light on the extent to which post-COVID-19 symptoms – commonly known as long COVID – are affecting populations. While results vary, they generally fall within similar ranges.

The World Health Organization estimates that between 10% and 20% of those with COVID-19 go on to have an array of medium- to long-term post-COVID-19 symptoms that range from mild to debilitating. The U.S. Government Accountability Office puts that estimate at 10% to 30%; one of the latest studies published at the end of October in The Journal of the American Medical Association found that 15% of U.S. adults who had tested positive for COVID-19 reported current long COVID symptoms. Elsewhere, a study from the Netherlands published in The Lancet in August found that one in eight COVID-19 cases, or 12.7%, were likely to become long COVID.

“It’s very clear that the condition is devastating people’s lives and livelihoods,” WHO Director-General Tedros Adhanom Ghebreyesus wrote in an article for The Guardian newspaper in October.

“The world has already lost a significant number of the workforce to illness, death, fatigue, unplanned retirement due to an increase in long-term disability, which not only impacts the health system, but is a hit to the overarching economy … the impact of long COVID for all countries is very serious and needs immediate and sustained action equivalent to its scale.”
 

Global snapshot: Lasting symptoms, impact on activities

Patients describe a spectrum of persistent issues, with extreme fatigue, brain fog or cognitive problems, and shortness of breath among the most common complaints. Many also have manageable symptoms that worsen significantly after even mild physical or mental exertion.

Women appear almost twice as likely as men to get long COVID. Many patients have other medical conditions and disabilities that make them more vulnerable to the condition. Those who face greater obstacles accessing health care due to discrimination or socioeconomic inequity are at higher risk as well. 

While many are older, a large number are also in their prime working age. The Census Bureau data show that people ages 40-49 are more likely than any other group to get long COVID, which has broader implications for labor markets and the global economy. Already, experts have estimated that long COVID is likely to cost the U.S. trillions of dollars and affect multiple industries.

“Whether they’re in the financial world, the medical system, lawyers, they’re telling me they’re sitting at the computer screen and they’re unable to process the data,” said Zachary Schwartz, MD, medical director for Vancouver General Hospital’s Post-COVID-19 Recovery Clinic.

“That is what’s most distressing for people, in that they’re not working, they’re not making money, and they don’t know when, or if, they’re going to get better.”

Nearly a third of respondents in the Census Bureau’s Household Pulse Survey who said they have had COVID-19 reported symptoms that lasted 3 months or longer. People between the ages of 30 and 59 were the most affected, with about 32% reporting symptoms. Across the entire adult U.S. population, the survey found that 1 in 7 adults have had long COVID at some point during the pandemic, with about 1 in 18 saying it limited their activity to some degree, and 1 in 50 saying they have faced “a lot” of limits on their activities. Any way these numbers are dissected, long COVID has impacted a large swath of the population.

Yet research into the causes and possible treatments of long COVID is just getting underway.

“The amount of energy and time devoted to it is way, way less than it should, given how many people are likely affected,” said David Cutler, PhD, professor of economics at Harvard University, Cambridge, Mass., who has written about the economic cost of long COVID. “We’re way, way underdoing it here. And I think that’s really a terrible thing.”

Population surveys and studies from around the world show that long COVID lives up to its name, with people reporting serious symptoms for months on end.

In October, Statistics Canada and the Public Health Agency of Canada published early results from a questionnaire done between spring and summer 2022 that found just under 15% of adults who had a confirmed or suspected case of COVID-19 went on to have new or continuing symptoms 3 or more months later. Nearly half, or 47.3%, dealt with symptoms that lasted a year or more. More than one in five said their symptoms “often or always” limited their day-to-day activities, which included routine tasks such as preparing meals, doing errands and chores, and basic functions such as personal care and moving around in their homes.

Nearly three-quarters of workers or students said they missed an average of 20 days of work or school. 

“We haven’t yet been able to determine exactly when symptoms resolve,” said Rainu Kaushal, MD, the senior associate dean for clinical research at Weill Cornell Medicine in New York. She is co-leading a national study on long COVID in adults and children, funded by the National Institutes of Health RECOVER Initiative.

“But there does seem to be, for many of the milder symptoms, resolution at about 4-6 weeks. There seems to be a second point of resolution around 6 months for certain symptoms, and then some symptoms do seem to be permanent, and those tend to be patients who have underlying conditions,” she said.
 

Reducing the risk

Given all the data so far, experts recommend urgent policy changes to help people with long COVID.

“The population needs to be prepared, that understanding long COVID is going to be a very long and difficult process,” said Alexander Charney, MD, PhD, associate professor and the lead principal investigator of the RECOVER adult cohort at Icahn School of Medicine at Mount Sinai in New York. He said the government can do a great deal to help, including setting up a network of connected clinics treating long COVID, standardizing best practices, and sharing information.

“That would go a long way towards making sure that every person feels like they’re not too far away from a clinic where they can get treated for this particular condition,” he said.

But the only known way to prevent long COVID is to prevent COVID-19 infections in the first place, experts say. That means equitable access to tests, therapeutics, and vaccines.

“I will say that avoiding COVID remains the best treatment in the arsenal right now,” said Dr. Kaushal. This means masking, avoiding crowded places with poor ventilation and high exposure risk, and being up to date on vaccinations, she said.

A number of papers – including a large U.K. study published in May 2022, another one from July, and the JAMA study from October – all suggest that vaccinations can help reduce the risk of long COVID.

“I am absolutely of the belief that vaccination has reduced the incidence and overall amount of long COVID … [and is] still by far the best thing the public can do,” said Dr. Schwartz.

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

Roughly 7% of all adult Americans may currently have had long COVID, with symptoms that have lasted 3 months or longer, according to the latest U.S. government survey done in October. More than a quarter say their condition is severe enough to significantly limit their day-to-day activities – yet the problem is only barely starting to get the attention of employers, the health care system, and policymakers.

With no cure or treatment in sight, long COVID is already burdening not only the health care system, but also the economy – and that burden is set to grow. Many experts worry about the possible long-term ripple effects, from increased spending on medical care costs to lost wages due to not being able to work, as well as the policy implications that come with addressing these issues.

“At this point, anyone who’s looking at this seriously would say this is a huge deal,” says senior Brookings Institution fellow Katie Bach, the author of a study that analyzed long COVID’s impact on the labor market.

“We need a real concerted focus on treating these people, which means both research and the clinical side, and figuring out how to build a labor market that is more inclusive of people with disabilities,” she said.

It’s not only that many people are affected. It’s that they are often affected for months and possibly even years.

The U.S. government figures suggest more than 18 million people could have symptoms of long COVID right now. The latest Household Pulse Survey by the Census Bureau and the National Center for Health Statistics takes data from 41,415 people.

A preprint of a study by researchers from City University of New York, posted on medRxiv in September and based on a similar population survey done between June 30 and July 2, drew comparable results. The study has not been peer reviewed.

More than 7% of all those who answered said they had long COVID at the time of the survey, which the researchers said corresponded to approximately 18.5 million U.S. adults. The same study found that a quarter of those, or an estimated 4.7 million adults, said their daily activities were impacted “a lot.”

This can translate into pain not only for the patients, but for governments and employers, too.

In high-income countries around the world, government surveys and other studies are shedding light on the extent to which post-COVID-19 symptoms – commonly known as long COVID – are affecting populations. While results vary, they generally fall within similar ranges.

The World Health Organization estimates that between 10% and 20% of those with COVID-19 go on to have an array of medium- to long-term post-COVID-19 symptoms that range from mild to debilitating. The U.S. Government Accountability Office puts that estimate at 10% to 30%; one of the latest studies published at the end of October in The Journal of the American Medical Association found that 15% of U.S. adults who had tested positive for COVID-19 reported current long COVID symptoms. Elsewhere, a study from the Netherlands published in The Lancet in August found that one in eight COVID-19 cases, or 12.7%, were likely to become long COVID.

“It’s very clear that the condition is devastating people’s lives and livelihoods,” WHO Director-General Tedros Adhanom Ghebreyesus wrote in an article for The Guardian newspaper in October.

“The world has already lost a significant number of the workforce to illness, death, fatigue, unplanned retirement due to an increase in long-term disability, which not only impacts the health system, but is a hit to the overarching economy … the impact of long COVID for all countries is very serious and needs immediate and sustained action equivalent to its scale.”
 

Global snapshot: Lasting symptoms, impact on activities

Patients describe a spectrum of persistent issues, with extreme fatigue, brain fog or cognitive problems, and shortness of breath among the most common complaints. Many also have manageable symptoms that worsen significantly after even mild physical or mental exertion.

Women appear almost twice as likely as men to get long COVID. Many patients have other medical conditions and disabilities that make them more vulnerable to the condition. Those who face greater obstacles accessing health care due to discrimination or socioeconomic inequity are at higher risk as well. 

While many are older, a large number are also in their prime working age. The Census Bureau data show that people ages 40-49 are more likely than any other group to get long COVID, which has broader implications for labor markets and the global economy. Already, experts have estimated that long COVID is likely to cost the U.S. trillions of dollars and affect multiple industries.

“Whether they’re in the financial world, the medical system, lawyers, they’re telling me they’re sitting at the computer screen and they’re unable to process the data,” said Zachary Schwartz, MD, medical director for Vancouver General Hospital’s Post-COVID-19 Recovery Clinic.

“That is what’s most distressing for people, in that they’re not working, they’re not making money, and they don’t know when, or if, they’re going to get better.”

Nearly a third of respondents in the Census Bureau’s Household Pulse Survey who said they have had COVID-19 reported symptoms that lasted 3 months or longer. People between the ages of 30 and 59 were the most affected, with about 32% reporting symptoms. Across the entire adult U.S. population, the survey found that 1 in 7 adults have had long COVID at some point during the pandemic, with about 1 in 18 saying it limited their activity to some degree, and 1 in 50 saying they have faced “a lot” of limits on their activities. Any way these numbers are dissected, long COVID has impacted a large swath of the population.

Yet research into the causes and possible treatments of long COVID is just getting underway.

“The amount of energy and time devoted to it is way, way less than it should, given how many people are likely affected,” said David Cutler, PhD, professor of economics at Harvard University, Cambridge, Mass., who has written about the economic cost of long COVID. “We’re way, way underdoing it here. And I think that’s really a terrible thing.”

Population surveys and studies from around the world show that long COVID lives up to its name, with people reporting serious symptoms for months on end.

In October, Statistics Canada and the Public Health Agency of Canada published early results from a questionnaire done between spring and summer 2022 that found just under 15% of adults who had a confirmed or suspected case of COVID-19 went on to have new or continuing symptoms 3 or more months later. Nearly half, or 47.3%, dealt with symptoms that lasted a year or more. More than one in five said their symptoms “often or always” limited their day-to-day activities, which included routine tasks such as preparing meals, doing errands and chores, and basic functions such as personal care and moving around in their homes.

Nearly three-quarters of workers or students said they missed an average of 20 days of work or school. 

“We haven’t yet been able to determine exactly when symptoms resolve,” said Rainu Kaushal, MD, the senior associate dean for clinical research at Weill Cornell Medicine in New York. She is co-leading a national study on long COVID in adults and children, funded by the National Institutes of Health RECOVER Initiative.

“But there does seem to be, for many of the milder symptoms, resolution at about 4-6 weeks. There seems to be a second point of resolution around 6 months for certain symptoms, and then some symptoms do seem to be permanent, and those tend to be patients who have underlying conditions,” she said.
 

Reducing the risk

Given all the data so far, experts recommend urgent policy changes to help people with long COVID.

“The population needs to be prepared, that understanding long COVID is going to be a very long and difficult process,” said Alexander Charney, MD, PhD, associate professor and the lead principal investigator of the RECOVER adult cohort at Icahn School of Medicine at Mount Sinai in New York. He said the government can do a great deal to help, including setting up a network of connected clinics treating long COVID, standardizing best practices, and sharing information.

“That would go a long way towards making sure that every person feels like they’re not too far away from a clinic where they can get treated for this particular condition,” he said.

But the only known way to prevent long COVID is to prevent COVID-19 infections in the first place, experts say. That means equitable access to tests, therapeutics, and vaccines.

“I will say that avoiding COVID remains the best treatment in the arsenal right now,” said Dr. Kaushal. This means masking, avoiding crowded places with poor ventilation and high exposure risk, and being up to date on vaccinations, she said.

A number of papers – including a large U.K. study published in May 2022, another one from July, and the JAMA study from October – all suggest that vaccinations can help reduce the risk of long COVID.

“I am absolutely of the belief that vaccination has reduced the incidence and overall amount of long COVID … [and is] still by far the best thing the public can do,” said Dr. Schwartz.

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

Roughly 7% of all adult Americans may currently have had long COVID, with symptoms that have lasted 3 months or longer, according to the latest U.S. government survey done in October. More than a quarter say their condition is severe enough to significantly limit their day-to-day activities – yet the problem is only barely starting to get the attention of employers, the health care system, and policymakers.

With no cure or treatment in sight, long COVID is already burdening not only the health care system, but also the economy – and that burden is set to grow. Many experts worry about the possible long-term ripple effects, from increased spending on medical care costs to lost wages due to not being able to work, as well as the policy implications that come with addressing these issues.

“At this point, anyone who’s looking at this seriously would say this is a huge deal,” says senior Brookings Institution fellow Katie Bach, the author of a study that analyzed long COVID’s impact on the labor market.

“We need a real concerted focus on treating these people, which means both research and the clinical side, and figuring out how to build a labor market that is more inclusive of people with disabilities,” she said.

It’s not only that many people are affected. It’s that they are often affected for months and possibly even years.

The U.S. government figures suggest more than 18 million people could have symptoms of long COVID right now. The latest Household Pulse Survey by the Census Bureau and the National Center for Health Statistics takes data from 41,415 people.

A preprint of a study by researchers from City University of New York, posted on medRxiv in September and based on a similar population survey done between June 30 and July 2, drew comparable results. The study has not been peer reviewed.

More than 7% of all those who answered said they had long COVID at the time of the survey, which the researchers said corresponded to approximately 18.5 million U.S. adults. The same study found that a quarter of those, or an estimated 4.7 million adults, said their daily activities were impacted “a lot.”

This can translate into pain not only for the patients, but for governments and employers, too.

In high-income countries around the world, government surveys and other studies are shedding light on the extent to which post-COVID-19 symptoms – commonly known as long COVID – are affecting populations. While results vary, they generally fall within similar ranges.

The World Health Organization estimates that between 10% and 20% of those with COVID-19 go on to have an array of medium- to long-term post-COVID-19 symptoms that range from mild to debilitating. The U.S. Government Accountability Office puts that estimate at 10% to 30%; one of the latest studies published at the end of October in The Journal of the American Medical Association found that 15% of U.S. adults who had tested positive for COVID-19 reported current long COVID symptoms. Elsewhere, a study from the Netherlands published in The Lancet in August found that one in eight COVID-19 cases, or 12.7%, were likely to become long COVID.

“It’s very clear that the condition is devastating people’s lives and livelihoods,” WHO Director-General Tedros Adhanom Ghebreyesus wrote in an article for The Guardian newspaper in October.

“The world has already lost a significant number of the workforce to illness, death, fatigue, unplanned retirement due to an increase in long-term disability, which not only impacts the health system, but is a hit to the overarching economy … the impact of long COVID for all countries is very serious and needs immediate and sustained action equivalent to its scale.”
 

Global snapshot: Lasting symptoms, impact on activities

Patients describe a spectrum of persistent issues, with extreme fatigue, brain fog or cognitive problems, and shortness of breath among the most common complaints. Many also have manageable symptoms that worsen significantly after even mild physical or mental exertion.

Women appear almost twice as likely as men to get long COVID. Many patients have other medical conditions and disabilities that make them more vulnerable to the condition. Those who face greater obstacles accessing health care due to discrimination or socioeconomic inequity are at higher risk as well. 

While many are older, a large number are also in their prime working age. The Census Bureau data show that people ages 40-49 are more likely than any other group to get long COVID, which has broader implications for labor markets and the global economy. Already, experts have estimated that long COVID is likely to cost the U.S. trillions of dollars and affect multiple industries.

“Whether they’re in the financial world, the medical system, lawyers, they’re telling me they’re sitting at the computer screen and they’re unable to process the data,” said Zachary Schwartz, MD, medical director for Vancouver General Hospital’s Post-COVID-19 Recovery Clinic.

“That is what’s most distressing for people, in that they’re not working, they’re not making money, and they don’t know when, or if, they’re going to get better.”

Nearly a third of respondents in the Census Bureau’s Household Pulse Survey who said they have had COVID-19 reported symptoms that lasted 3 months or longer. People between the ages of 30 and 59 were the most affected, with about 32% reporting symptoms. Across the entire adult U.S. population, the survey found that 1 in 7 adults have had long COVID at some point during the pandemic, with about 1 in 18 saying it limited their activity to some degree, and 1 in 50 saying they have faced “a lot” of limits on their activities. Any way these numbers are dissected, long COVID has impacted a large swath of the population.

Yet research into the causes and possible treatments of long COVID is just getting underway.

“The amount of energy and time devoted to it is way, way less than it should, given how many people are likely affected,” said David Cutler, PhD, professor of economics at Harvard University, Cambridge, Mass., who has written about the economic cost of long COVID. “We’re way, way underdoing it here. And I think that’s really a terrible thing.”

Population surveys and studies from around the world show that long COVID lives up to its name, with people reporting serious symptoms for months on end.

In October, Statistics Canada and the Public Health Agency of Canada published early results from a questionnaire done between spring and summer 2022 that found just under 15% of adults who had a confirmed or suspected case of COVID-19 went on to have new or continuing symptoms 3 or more months later. Nearly half, or 47.3%, dealt with symptoms that lasted a year or more. More than one in five said their symptoms “often or always” limited their day-to-day activities, which included routine tasks such as preparing meals, doing errands and chores, and basic functions such as personal care and moving around in their homes.

Nearly three-quarters of workers or students said they missed an average of 20 days of work or school. 

“We haven’t yet been able to determine exactly when symptoms resolve,” said Rainu Kaushal, MD, the senior associate dean for clinical research at Weill Cornell Medicine in New York. She is co-leading a national study on long COVID in adults and children, funded by the National Institutes of Health RECOVER Initiative.

“But there does seem to be, for many of the milder symptoms, resolution at about 4-6 weeks. There seems to be a second point of resolution around 6 months for certain symptoms, and then some symptoms do seem to be permanent, and those tend to be patients who have underlying conditions,” she said.
 

Reducing the risk

Given all the data so far, experts recommend urgent policy changes to help people with long COVID.

“The population needs to be prepared, that understanding long COVID is going to be a very long and difficult process,” said Alexander Charney, MD, PhD, associate professor and the lead principal investigator of the RECOVER adult cohort at Icahn School of Medicine at Mount Sinai in New York. He said the government can do a great deal to help, including setting up a network of connected clinics treating long COVID, standardizing best practices, and sharing information.

“That would go a long way towards making sure that every person feels like they’re not too far away from a clinic where they can get treated for this particular condition,” he said.

But the only known way to prevent long COVID is to prevent COVID-19 infections in the first place, experts say. That means equitable access to tests, therapeutics, and vaccines.

“I will say that avoiding COVID remains the best treatment in the arsenal right now,” said Dr. Kaushal. This means masking, avoiding crowded places with poor ventilation and high exposure risk, and being up to date on vaccinations, she said.

A number of papers – including a large U.K. study published in May 2022, another one from July, and the JAMA study from October – all suggest that vaccinations can help reduce the risk of long COVID.

“I am absolutely of the belief that vaccination has reduced the incidence and overall amount of long COVID … [and is] still by far the best thing the public can do,” said Dr. Schwartz.

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

Dear Colleagues,

We have a mismatch. The evidence supporting treatment for Paxlovid is compelling for people aged 60 or over, but the older patients in the United States are much less likely to be treated. Not only was there a randomized, placebo-controlled trial of high-risk patients which showed 89% reduction of hospitalizations and deaths (median age, 45), but there have been multiple real-world effectiveness studies subsequently published that have partitioned the benefit for age 65 or older, such as the ones from Israel and Hong Kong (age 60+). Overall, the real-world effectiveness in the first month after treatment is at least as good, if not better, than in the high-risk randomized trial.

But it’s more likely in the United States for a person age 45-50 to get Paxlovid over people age 80 or older. Why? We’re doing the current survey to find out, but the most likely reasons include (1) lack of confidence of benefit; (2) medication interactions; and (3) concerns over rebound.

Let me address each of these briefly. The lack of confidence in benefit stems from the fact that the initial high-risk trial was in unvaccinated individuals. That concern can now be put aside because all of the several real-world studies confirming the protective benefit against hospitalizations and deaths are in people who have been vaccinated, and a significant proportion received booster shots.

The potential medication interactions due to the ritonavir component of the Paxlovid drug combination, attributable to its cytochrome P450 3A4 inhibition, have been unduly emphasized. There are many drug-interaction checkers for Paxlovid, but this one from the University of Liverpool is user friendly, color- and icon-coded, and shows that the vast majority of interactions can be sidestepped by discontinuing the medication of concern for the length of the Paxlovid treatment, 5 days. The simple chart is provided in my recent substack newsletter.

As far as rebound, this problem has unfortunately been exaggerated because of lack of prospective systematic studies and appreciation that a positive test of clinical symptom rebound can occur without Paxlovid. There are soon to be multiple reports that the incidence of Paxlovid rebound is fairly low, in the range of 10%. That concern should not be a reason to withhold treatment.

Now the plot thickens. A new preprint report from the Veterans Health Administration, the largest health care system in the United States, looks at 90-day outcomes of about 9,000 Paxlovid-treated patients and approximately 47,000 controls. Not only was there a 26% reduction in long COVID, but of the breakdown of 12 organs/systems and symptoms, 10 of 12 were significantly reduced with Paxlovid, including pulmonary embolism, deep vein thrombosis, and neurocognitive impairment. There was also a 48% reduction in death and a 30% reduction in hospitalizations after the first 30 days. I have reviewed all of these data and put them in context in a recent newsletter. A key point is that the magnitude of benefit was unaffected by vaccination or booster status, or prior COVID infections, or unvaccinated status. Also, it was the same for men and women, as well as for age > 70 and age < 60. These findings all emphasize a new reason to be using Paxlovid therapy, and if replicated, Paxlovid may even be indicated for younger patients (who are at low risk for hospitalizations and deaths but at increased risk for long COVID).

In summary, for older patients, we should be thinking of why we should be using Paxlovid rather than the reason not to treat. We’ll be interested in the survey results to understand the mismatch better, and we look forward to your ideas and feedback to make better use of this treatment for the people who need it the most.

Sincerely yours, Eric J. Topol, MD

Dr. Topol reports no conflicts of interest with Pfizer; he receives no honoraria or speaker fees, does not serve in an advisory role, and has no financial association with the company.

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

Dear Colleagues,

We have a mismatch. The evidence supporting treatment for Paxlovid is compelling for people aged 60 or over, but the older patients in the United States are much less likely to be treated. Not only was there a randomized, placebo-controlled trial of high-risk patients which showed 89% reduction of hospitalizations and deaths (median age, 45), but there have been multiple real-world effectiveness studies subsequently published that have partitioned the benefit for age 65 or older, such as the ones from Israel and Hong Kong (age 60+). Overall, the real-world effectiveness in the first month after treatment is at least as good, if not better, than in the high-risk randomized trial.

But it’s more likely in the United States for a person age 45-50 to get Paxlovid over people age 80 or older. Why? We’re doing the current survey to find out, but the most likely reasons include (1) lack of confidence of benefit; (2) medication interactions; and (3) concerns over rebound.

Let me address each of these briefly. The lack of confidence in benefit stems from the fact that the initial high-risk trial was in unvaccinated individuals. That concern can now be put aside because all of the several real-world studies confirming the protective benefit against hospitalizations and deaths are in people who have been vaccinated, and a significant proportion received booster shots.

The potential medication interactions due to the ritonavir component of the Paxlovid drug combination, attributable to its cytochrome P450 3A4 inhibition, have been unduly emphasized. There are many drug-interaction checkers for Paxlovid, but this one from the University of Liverpool is user friendly, color- and icon-coded, and shows that the vast majority of interactions can be sidestepped by discontinuing the medication of concern for the length of the Paxlovid treatment, 5 days. The simple chart is provided in my recent substack newsletter.

As far as rebound, this problem has unfortunately been exaggerated because of lack of prospective systematic studies and appreciation that a positive test of clinical symptom rebound can occur without Paxlovid. There are soon to be multiple reports that the incidence of Paxlovid rebound is fairly low, in the range of 10%. That concern should not be a reason to withhold treatment.

Now the plot thickens. A new preprint report from the Veterans Health Administration, the largest health care system in the United States, looks at 90-day outcomes of about 9,000 Paxlovid-treated patients and approximately 47,000 controls. Not only was there a 26% reduction in long COVID, but of the breakdown of 12 organs/systems and symptoms, 10 of 12 were significantly reduced with Paxlovid, including pulmonary embolism, deep vein thrombosis, and neurocognitive impairment. There was also a 48% reduction in death and a 30% reduction in hospitalizations after the first 30 days. I have reviewed all of these data and put them in context in a recent newsletter. A key point is that the magnitude of benefit was unaffected by vaccination or booster status, or prior COVID infections, or unvaccinated status. Also, it was the same for men and women, as well as for age > 70 and age < 60. These findings all emphasize a new reason to be using Paxlovid therapy, and if replicated, Paxlovid may even be indicated for younger patients (who are at low risk for hospitalizations and deaths but at increased risk for long COVID).

In summary, for older patients, we should be thinking of why we should be using Paxlovid rather than the reason not to treat. We’ll be interested in the survey results to understand the mismatch better, and we look forward to your ideas and feedback to make better use of this treatment for the people who need it the most.

Sincerely yours, Eric J. Topol, MD

Dr. Topol reports no conflicts of interest with Pfizer; he receives no honoraria or speaker fees, does not serve in an advisory role, and has no financial association with the company.

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

Dear Colleagues,

We have a mismatch. The evidence supporting treatment for Paxlovid is compelling for people aged 60 or over, but the older patients in the United States are much less likely to be treated. Not only was there a randomized, placebo-controlled trial of high-risk patients which showed 89% reduction of hospitalizations and deaths (median age, 45), but there have been multiple real-world effectiveness studies subsequently published that have partitioned the benefit for age 65 or older, such as the ones from Israel and Hong Kong (age 60+). Overall, the real-world effectiveness in the first month after treatment is at least as good, if not better, than in the high-risk randomized trial.

But it’s more likely in the United States for a person age 45-50 to get Paxlovid over people age 80 or older. Why? We’re doing the current survey to find out, but the most likely reasons include (1) lack of confidence of benefit; (2) medication interactions; and (3) concerns over rebound.

Let me address each of these briefly. The lack of confidence in benefit stems from the fact that the initial high-risk trial was in unvaccinated individuals. That concern can now be put aside because all of the several real-world studies confirming the protective benefit against hospitalizations and deaths are in people who have been vaccinated, and a significant proportion received booster shots.

The potential medication interactions due to the ritonavir component of the Paxlovid drug combination, attributable to its cytochrome P450 3A4 inhibition, have been unduly emphasized. There are many drug-interaction checkers for Paxlovid, but this one from the University of Liverpool is user friendly, color- and icon-coded, and shows that the vast majority of interactions can be sidestepped by discontinuing the medication of concern for the length of the Paxlovid treatment, 5 days. The simple chart is provided in my recent substack newsletter.

As far as rebound, this problem has unfortunately been exaggerated because of lack of prospective systematic studies and appreciation that a positive test of clinical symptom rebound can occur without Paxlovid. There are soon to be multiple reports that the incidence of Paxlovid rebound is fairly low, in the range of 10%. That concern should not be a reason to withhold treatment.

Now the plot thickens. A new preprint report from the Veterans Health Administration, the largest health care system in the United States, looks at 90-day outcomes of about 9,000 Paxlovid-treated patients and approximately 47,000 controls. Not only was there a 26% reduction in long COVID, but of the breakdown of 12 organs/systems and symptoms, 10 of 12 were significantly reduced with Paxlovid, including pulmonary embolism, deep vein thrombosis, and neurocognitive impairment. There was also a 48% reduction in death and a 30% reduction in hospitalizations after the first 30 days. I have reviewed all of these data and put them in context in a recent newsletter. A key point is that the magnitude of benefit was unaffected by vaccination or booster status, or prior COVID infections, or unvaccinated status. Also, it was the same for men and women, as well as for age > 70 and age < 60. These findings all emphasize a new reason to be using Paxlovid therapy, and if replicated, Paxlovid may even be indicated for younger patients (who are at low risk for hospitalizations and deaths but at increased risk for long COVID).

In summary, for older patients, we should be thinking of why we should be using Paxlovid rather than the reason not to treat. We’ll be interested in the survey results to understand the mismatch better, and we look forward to your ideas and feedback to make better use of this treatment for the people who need it the most.

Sincerely yours, Eric J. Topol, MD

Dr. Topol reports no conflicts of interest with Pfizer; he receives no honoraria or speaker fees, does not serve in an advisory role, and has no financial association with the company.

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

Getting COVID-19 a second time doubles a person’s chance of dying and triples the likelihood of being hospitalized in the next 6 months, a new study found.

Vaccination and booster status did not improve survival or hospitalization rates among people who were infected more than once.

“Reinfection with COVID-19 increases the risk of both acute outcomes and long COVID,” study author Ziyad Al-Aly, MD, told Reuters. “This was evident in unvaccinated, vaccinated and boosted people.”

The study was published in the journal Nature Medicine.

Researchers analyzed U.S. Department of Veterans Affairs data, including 443,588 people with a first infection of SARS-CoV-2, 40,947 people who were infected two or more times, and 5.3 million people who had not been infected with coronavirus, whose data served as the control group.

“During the past few months, there’s been an air of invincibility among people who have had COVID-19 or their vaccinations and boosters, and especially among people who have had an infection and also received vaccines; some people started to [refer] to these individuals as having a sort of superimmunity to the virus,” Dr. Al-Aly said in a press release from Washington University in St. Louis. “Without ambiguity, our research showed that getting an infection a second, third or fourth time contributes to additional health risks in the acute phase, meaning the first 30 days after infection, and in the months beyond, meaning the long COVID phase.”

Being infected with COVID-19 more than once also dramatically increased the risk of developing lung problems, heart conditions, or brain conditions. The heightened risks persisted for 6 months.

Researchers said a limitation of their study was that data primarily came from White males.

An expert not involved in the study told Reuters that the Veterans Affairs population does not reflect the general population. Patients at VA health facilities are generally older with more than normal health complications, said John Moore, PhD, a professor of microbiology and immunology at Weill Cornell Medicine, New York.

Dr. Al-Aly encouraged people to be vigilant as they plan for the holiday season, Reuters reported.

“We had started seeing a lot of patients coming to the clinic with an air of invincibility,” he told Reuters. “They wondered, ‘Does getting a reinfection really matter?’ The answer is yes, it absolutely does.”

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

Getting COVID-19 a second time doubles a person’s chance of dying and triples the likelihood of being hospitalized in the next 6 months, a new study found.

Vaccination and booster status did not improve survival or hospitalization rates among people who were infected more than once.

“Reinfection with COVID-19 increases the risk of both acute outcomes and long COVID,” study author Ziyad Al-Aly, MD, told Reuters. “This was evident in unvaccinated, vaccinated and boosted people.”

The study was published in the journal Nature Medicine.

Researchers analyzed U.S. Department of Veterans Affairs data, including 443,588 people with a first infection of SARS-CoV-2, 40,947 people who were infected two or more times, and 5.3 million people who had not been infected with coronavirus, whose data served as the control group.

“During the past few months, there’s been an air of invincibility among people who have had COVID-19 or their vaccinations and boosters, and especially among people who have had an infection and also received vaccines; some people started to [refer] to these individuals as having a sort of superimmunity to the virus,” Dr. Al-Aly said in a press release from Washington University in St. Louis. “Without ambiguity, our research showed that getting an infection a second, third or fourth time contributes to additional health risks in the acute phase, meaning the first 30 days after infection, and in the months beyond, meaning the long COVID phase.”

Being infected with COVID-19 more than once also dramatically increased the risk of developing lung problems, heart conditions, or brain conditions. The heightened risks persisted for 6 months.

Researchers said a limitation of their study was that data primarily came from White males.

An expert not involved in the study told Reuters that the Veterans Affairs population does not reflect the general population. Patients at VA health facilities are generally older with more than normal health complications, said John Moore, PhD, a professor of microbiology and immunology at Weill Cornell Medicine, New York.

Dr. Al-Aly encouraged people to be vigilant as they plan for the holiday season, Reuters reported.

“We had started seeing a lot of patients coming to the clinic with an air of invincibility,” he told Reuters. “They wondered, ‘Does getting a reinfection really matter?’ The answer is yes, it absolutely does.”

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

Getting COVID-19 a second time doubles a person’s chance of dying and triples the likelihood of being hospitalized in the next 6 months, a new study found.

Vaccination and booster status did not improve survival or hospitalization rates among people who were infected more than once.

“Reinfection with COVID-19 increases the risk of both acute outcomes and long COVID,” study author Ziyad Al-Aly, MD, told Reuters. “This was evident in unvaccinated, vaccinated and boosted people.”

The study was published in the journal Nature Medicine.

Researchers analyzed U.S. Department of Veterans Affairs data, including 443,588 people with a first infection of SARS-CoV-2, 40,947 people who were infected two or more times, and 5.3 million people who had not been infected with coronavirus, whose data served as the control group.

“During the past few months, there’s been an air of invincibility among people who have had COVID-19 or their vaccinations and boosters, and especially among people who have had an infection and also received vaccines; some people started to [refer] to these individuals as having a sort of superimmunity to the virus,” Dr. Al-Aly said in a press release from Washington University in St. Louis. “Without ambiguity, our research showed that getting an infection a second, third or fourth time contributes to additional health risks in the acute phase, meaning the first 30 days after infection, and in the months beyond, meaning the long COVID phase.”

Being infected with COVID-19 more than once also dramatically increased the risk of developing lung problems, heart conditions, or brain conditions. The heightened risks persisted for 6 months.

Researchers said a limitation of their study was that data primarily came from White males.

An expert not involved in the study told Reuters that the Veterans Affairs population does not reflect the general population. Patients at VA health facilities are generally older with more than normal health complications, said John Moore, PhD, a professor of microbiology and immunology at Weill Cornell Medicine, New York.

Dr. Al-Aly encouraged people to be vigilant as they plan for the holiday season, Reuters reported.

“We had started seeing a lot of patients coming to the clinic with an air of invincibility,” he told Reuters. “They wondered, ‘Does getting a reinfection really matter?’ The answer is yes, it absolutely does.”

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

MONTREAL – Patients hospitalized with severe COVID-19 and no prior history of thyroid dysfunction show signs of thyroiditis that, although asymptomatic, continue to persist for up to a year after infection, according to research that adds to evidence on the complex involvement of the thyroid in COVID-19.

“To our knowledge these findings are novel,” first author Ilaria Muller, MD, PhD, an assistant professor in endocrinology in the department of clinical sciences and community health, University of Milan, told this news organization.

“Little has been written about the long-term follow-up of thyroid function after severe COVID-19 disease, and we have followed patients up to 1 year after infection.”

The effects are seen in about 10%-15% of patients, and “[while] the thyroid dysfunction is transient, ultrasound areas of thyroiditis may persist after 1 year, even if they progressively shrink,” said Dr. Muller, who presented the findings at the American Thyroid Association annual meeting.
 

Immunological scars? Clinical implications unclear

The nature and implications of the persistent thyroiditis areas are uncertain, Dr. Muller noted. “These areas of thyroiditis are likely a sort of ‘immunologic scar’ of the previous SARS-CoV-2 infection,” she explained. “We still don’t know if there are clinical implications, even if they seem unlikely.”

Of note, increases in autoimmune processes or a higher incidence of thyroid dysfunction after COVID-19 have not been observed, and the shrinkage of the areas of thyroiditis over time is encouraging, she said.

The reasons why some patients develop atypical thyroiditis and others don’t are also unclear, with Dr. Muller’s team investigating further. Importantly, similar effects have been associated with other severe infections, not just COVID-19. “It is well known that in classic subacute thyroiditis due to other viral infections, the areas of thyroiditis persist for months, so this phenomenon might not be unique to COVID-19,” she explained.

Commenting on the story, Jeffrey R. Garber, MD, also noted that such thyroiditis areas stemming from other types of infection may persist – but go unnoticed.

“Resolution is the clinical rule, [and] we generally do not restudy in detail those who clinically recover,” he said in an interview. “However, there is evidence of impaired thyroid reserve in those who recover from viral thyroiditis due to other sources.”

“Thyroid symptoms are often not specific, so ‘atypical’ [cases] are common, [and] resolution with restoring thyroid status to normal is mixed,” noted Dr. Garber, an associate professor of medicine at Harvard Medical School and chief of the division of endocrinology at Atrius Health, Boston.

In terms of clinical practice, while such issues should be kept in mind when evaluating abnormal thyroid tests during severe COVID-19, “it is not a call for routinely checking it in the absence of clinical suspicion,” he observed.
 

Study details

Dr. Muller and her team previously observed that patients hospitalized in intensive care with COVID-19 often had low or suppressed serum thyroid-stimulating hormone (TSH) levels, with and without elevated free thyroxine (FT₄) concentrations, suggestive of thyrotoxicosis.

Upon investigating those cases, they found, as in their previous study reported by this news organization, that a painless, atypical thyroiditis occurs with nonthyroidal illness syndrome among patients hospitalized with severe COVID-19. The atypical thyroiditis was slightly more common in men and was associated with lymphopenia.

To further investigate those cases and follow patients up to 1 year, the team conducted a longitudinal study of 183 patients hospitalized with severe COVID-19 in Italy. The patients, who had no known prior history of thyroid dysfunction, were assessed for serum thyroid function, autoantibodies, and inflammatory markers.

At baseline, 10% of the patients were found to have thyrotoxicosis, and ultrasound performed within 2-3 months postinfection on 65 patients showed that 18 (28%) had areas of thyroiditis.

Importantly, 60% of those patients with the areas of thyroiditis had low TSH levels, while 25% had normal TSH levels (P = .034).

In addition, those showing the presence of thyroiditis on ultrasound at 23 months were more likely to have elevated serum concentrations of FT₄ (P = .018) and higher levels of interleukin-26 (P = .016), compared with those with normal ultrasound readings.

In a longitudinal analysis further following patients post infection, among 15 patients who were evaluated at 6 months, most, 13 (87%), still had areas of thyroiditis, and 6 of 12 (50%) had thyroiditis areas that, though reduced in size, still persisted even at 12 months.

In terms of thyroid uptake, at 3 months, 14 of 17 patients (82%) had diffused or focal areas of a reduction of uptake. After 6 months, there was a recovery, with a median of 28% of thyroid uptake recovered, however, 67% of patients still had some focal or diffused reduction in thyroid uptake.

Of note, the indications of thyroiditis on imaging persisted even though patients’ TSH levels had quickly normalized at the end of infection and remained normal up to 1 year of follow-up.

The patients showed no apparent development of thyroglobulin antibody, thyroid peroxidase antibodies, or TSH receptor antibodies.

A further fine needle aspiration analysis of eight patients with atypical thyroiditis at 3 months after infection showed that those patients had tissue resident memory T cells (CD4+/CD8+/CD103+/CD69+) within the thyroid, but not in the blood as expected.

Additional assessments at 8 months after infection showed those tissue resident memory T cells continued to be present on imaging.

The results showed “SARS-CoV-2–specific T cells were enriched within the thyroid compared with the blood, many with a tissue resident phenotype,” Dr. Muller explained.

The findings are notable in that “such an in-depth characterization of areas of thyroiditis triggered by SARS-CoV-2 infection combining ultrasound, scintigraphy, and immunological phenotyping has not been performed so far,” she said.

“In particular, SARS-CoV-2–specific tissue-resident memory T lymphocytes have not been described before in the thyroid gland.”

Dr. Muller and Dr. Garber have reported no relevant financial relationships.

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

MONTREAL – Patients hospitalized with severe COVID-19 and no prior history of thyroid dysfunction show signs of thyroiditis that, although asymptomatic, continue to persist for up to a year after infection, according to research that adds to evidence on the complex involvement of the thyroid in COVID-19.

“To our knowledge these findings are novel,” first author Ilaria Muller, MD, PhD, an assistant professor in endocrinology in the department of clinical sciences and community health, University of Milan, told this news organization.

“Little has been written about the long-term follow-up of thyroid function after severe COVID-19 disease, and we have followed patients up to 1 year after infection.”

The effects are seen in about 10%-15% of patients, and “[while] the thyroid dysfunction is transient, ultrasound areas of thyroiditis may persist after 1 year, even if they progressively shrink,” said Dr. Muller, who presented the findings at the American Thyroid Association annual meeting.
 

Immunological scars? Clinical implications unclear

The nature and implications of the persistent thyroiditis areas are uncertain, Dr. Muller noted. “These areas of thyroiditis are likely a sort of ‘immunologic scar’ of the previous SARS-CoV-2 infection,” she explained. “We still don’t know if there are clinical implications, even if they seem unlikely.”

Of note, increases in autoimmune processes or a higher incidence of thyroid dysfunction after COVID-19 have not been observed, and the shrinkage of the areas of thyroiditis over time is encouraging, she said.

The reasons why some patients develop atypical thyroiditis and others don’t are also unclear, with Dr. Muller’s team investigating further. Importantly, similar effects have been associated with other severe infections, not just COVID-19. “It is well known that in classic subacute thyroiditis due to other viral infections, the areas of thyroiditis persist for months, so this phenomenon might not be unique to COVID-19,” she explained.

Commenting on the story, Jeffrey R. Garber, MD, also noted that such thyroiditis areas stemming from other types of infection may persist – but go unnoticed.

“Resolution is the clinical rule, [and] we generally do not restudy in detail those who clinically recover,” he said in an interview. “However, there is evidence of impaired thyroid reserve in those who recover from viral thyroiditis due to other sources.”

“Thyroid symptoms are often not specific, so ‘atypical’ [cases] are common, [and] resolution with restoring thyroid status to normal is mixed,” noted Dr. Garber, an associate professor of medicine at Harvard Medical School and chief of the division of endocrinology at Atrius Health, Boston.

In terms of clinical practice, while such issues should be kept in mind when evaluating abnormal thyroid tests during severe COVID-19, “it is not a call for routinely checking it in the absence of clinical suspicion,” he observed.
 

Study details

Dr. Muller and her team previously observed that patients hospitalized in intensive care with COVID-19 often had low or suppressed serum thyroid-stimulating hormone (TSH) levels, with and without elevated free thyroxine (FT₄) concentrations, suggestive of thyrotoxicosis.

Upon investigating those cases, they found, as in their previous study reported by this news organization, that a painless, atypical thyroiditis occurs with nonthyroidal illness syndrome among patients hospitalized with severe COVID-19. The atypical thyroiditis was slightly more common in men and was associated with lymphopenia.

To further investigate those cases and follow patients up to 1 year, the team conducted a longitudinal study of 183 patients hospitalized with severe COVID-19 in Italy. The patients, who had no known prior history of thyroid dysfunction, were assessed for serum thyroid function, autoantibodies, and inflammatory markers.

At baseline, 10% of the patients were found to have thyrotoxicosis, and ultrasound performed within 2-3 months postinfection on 65 patients showed that 18 (28%) had areas of thyroiditis.

Importantly, 60% of those patients with the areas of thyroiditis had low TSH levels, while 25% had normal TSH levels (P = .034).

In addition, those showing the presence of thyroiditis on ultrasound at 23 months were more likely to have elevated serum concentrations of FT₄ (P = .018) and higher levels of interleukin-26 (P = .016), compared with those with normal ultrasound readings.

In a longitudinal analysis further following patients post infection, among 15 patients who were evaluated at 6 months, most, 13 (87%), still had areas of thyroiditis, and 6 of 12 (50%) had thyroiditis areas that, though reduced in size, still persisted even at 12 months.

In terms of thyroid uptake, at 3 months, 14 of 17 patients (82%) had diffused or focal areas of a reduction of uptake. After 6 months, there was a recovery, with a median of 28% of thyroid uptake recovered, however, 67% of patients still had some focal or diffused reduction in thyroid uptake.

Of note, the indications of thyroiditis on imaging persisted even though patients’ TSH levels had quickly normalized at the end of infection and remained normal up to 1 year of follow-up.

The patients showed no apparent development of thyroglobulin antibody, thyroid peroxidase antibodies, or TSH receptor antibodies.

A further fine needle aspiration analysis of eight patients with atypical thyroiditis at 3 months after infection showed that those patients had tissue resident memory T cells (CD4+/CD8+/CD103+/CD69+) within the thyroid, but not in the blood as expected.

Additional assessments at 8 months after infection showed those tissue resident memory T cells continued to be present on imaging.

The results showed “SARS-CoV-2–specific T cells were enriched within the thyroid compared with the blood, many with a tissue resident phenotype,” Dr. Muller explained.

The findings are notable in that “such an in-depth characterization of areas of thyroiditis triggered by SARS-CoV-2 infection combining ultrasound, scintigraphy, and immunological phenotyping has not been performed so far,” she said.

“In particular, SARS-CoV-2–specific tissue-resident memory T lymphocytes have not been described before in the thyroid gland.”

Dr. Muller and Dr. Garber have reported no relevant financial relationships.

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

MONTREAL – Patients hospitalized with severe COVID-19 and no prior history of thyroid dysfunction show signs of thyroiditis that, although asymptomatic, continue to persist for up to a year after infection, according to research that adds to evidence on the complex involvement of the thyroid in COVID-19.

“To our knowledge these findings are novel,” first author Ilaria Muller, MD, PhD, an assistant professor in endocrinology in the department of clinical sciences and community health, University of Milan, told this news organization.

“Little has been written about the long-term follow-up of thyroid function after severe COVID-19 disease, and we have followed patients up to 1 year after infection.”

The effects are seen in about 10%-15% of patients, and “[while] the thyroid dysfunction is transient, ultrasound areas of thyroiditis may persist after 1 year, even if they progressively shrink,” said Dr. Muller, who presented the findings at the American Thyroid Association annual meeting.
 

Immunological scars? Clinical implications unclear

The nature and implications of the persistent thyroiditis areas are uncertain, Dr. Muller noted. “These areas of thyroiditis are likely a sort of ‘immunologic scar’ of the previous SARS-CoV-2 infection,” she explained. “We still don’t know if there are clinical implications, even if they seem unlikely.”

Of note, increases in autoimmune processes or a higher incidence of thyroid dysfunction after COVID-19 have not been observed, and the shrinkage of the areas of thyroiditis over time is encouraging, she said.

The reasons why some patients develop atypical thyroiditis and others don’t are also unclear, with Dr. Muller’s team investigating further. Importantly, similar effects have been associated with other severe infections, not just COVID-19. “It is well known that in classic subacute thyroiditis due to other viral infections, the areas of thyroiditis persist for months, so this phenomenon might not be unique to COVID-19,” she explained.

Commenting on the story, Jeffrey R. Garber, MD, also noted that such thyroiditis areas stemming from other types of infection may persist – but go unnoticed.

“Resolution is the clinical rule, [and] we generally do not restudy in detail those who clinically recover,” he said in an interview. “However, there is evidence of impaired thyroid reserve in those who recover from viral thyroiditis due to other sources.”

“Thyroid symptoms are often not specific, so ‘atypical’ [cases] are common, [and] resolution with restoring thyroid status to normal is mixed,” noted Dr. Garber, an associate professor of medicine at Harvard Medical School and chief of the division of endocrinology at Atrius Health, Boston.

In terms of clinical practice, while such issues should be kept in mind when evaluating abnormal thyroid tests during severe COVID-19, “it is not a call for routinely checking it in the absence of clinical suspicion,” he observed.
 

Study details

Dr. Muller and her team previously observed that patients hospitalized in intensive care with COVID-19 often had low or suppressed serum thyroid-stimulating hormone (TSH) levels, with and without elevated free thyroxine (FT₄) concentrations, suggestive of thyrotoxicosis.

Upon investigating those cases, they found, as in their previous study reported by this news organization, that a painless, atypical thyroiditis occurs with nonthyroidal illness syndrome among patients hospitalized with severe COVID-19. The atypical thyroiditis was slightly more common in men and was associated with lymphopenia.

To further investigate those cases and follow patients up to 1 year, the team conducted a longitudinal study of 183 patients hospitalized with severe COVID-19 in Italy. The patients, who had no known prior history of thyroid dysfunction, were assessed for serum thyroid function, autoantibodies, and inflammatory markers.

At baseline, 10% of the patients were found to have thyrotoxicosis, and ultrasound performed within 2-3 months postinfection on 65 patients showed that 18 (28%) had areas of thyroiditis.

Importantly, 60% of those patients with the areas of thyroiditis had low TSH levels, while 25% had normal TSH levels (P = .034).

In addition, those showing the presence of thyroiditis on ultrasound at 23 months were more likely to have elevated serum concentrations of FT₄ (P = .018) and higher levels of interleukin-26 (P = .016), compared with those with normal ultrasound readings.

In a longitudinal analysis further following patients post infection, among 15 patients who were evaluated at 6 months, most, 13 (87%), still had areas of thyroiditis, and 6 of 12 (50%) had thyroiditis areas that, though reduced in size, still persisted even at 12 months.

In terms of thyroid uptake, at 3 months, 14 of 17 patients (82%) had diffused or focal areas of a reduction of uptake. After 6 months, there was a recovery, with a median of 28% of thyroid uptake recovered, however, 67% of patients still had some focal or diffused reduction in thyroid uptake.

Of note, the indications of thyroiditis on imaging persisted even though patients’ TSH levels had quickly normalized at the end of infection and remained normal up to 1 year of follow-up.

The patients showed no apparent development of thyroglobulin antibody, thyroid peroxidase antibodies, or TSH receptor antibodies.

A further fine needle aspiration analysis of eight patients with atypical thyroiditis at 3 months after infection showed that those patients had tissue resident memory T cells (CD4+/CD8+/CD103+/CD69+) within the thyroid, but not in the blood as expected.

Additional assessments at 8 months after infection showed those tissue resident memory T cells continued to be present on imaging.

The results showed “SARS-CoV-2–specific T cells were enriched within the thyroid compared with the blood, many with a tissue resident phenotype,” Dr. Muller explained.

The findings are notable in that “such an in-depth characterization of areas of thyroiditis triggered by SARS-CoV-2 infection combining ultrasound, scintigraphy, and immunological phenotyping has not been performed so far,” she said.

“In particular, SARS-CoV-2–specific tissue-resident memory T lymphocytes have not been described before in the thyroid gland.”

Dr. Muller and Dr. Garber have reported no relevant financial relationships.

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

One in 5. It almost seems unimaginable that this is the real number of people who are struggling with long COVID, especially considering how many people in the United States have had COVID-19 at this point (more than 96 million). Yet I continue to hear of people who are struggling, and we continue to see a flood of people in the long COVID clinic. It isn’t over, and long COVID is the new pandemic.

Even more unimaginable at this time is that it’s happening to me. I’ve experienced not only the disabling effects of long COVID, but I’ve also seen, firsthand, the frustration of navigating diagnosis and treatment. It’s given me a taste of what millions of other patients are going through.
 

Vaxxed, masked, and (too) relaxed

I caught COVID-19 (probably Omicron BA.5) that presented as sniffles, making me think it was probably just allergies. However, my resting heart rate was up on my Garmin watch, so of course I got tested and was positive.

With my symptoms virtually nonexistent, it seemed, at the time, merely an inconvenience, because I was forced to isolate away from family and friends, who all stayed negative.

But 2 weeks later, I began to have urticaria – hives – after physical exertion. Did that mean my mast cells were angry? There’s some evidence these immune cells become overactivated in some patients with COVID. Next, I began to experience lightheadedness and the rapid heartbeat of tachycardia. The tachycardia was especially bad any time I physically exerted myself, including on a walk. Imagine me – a lover of all bargain shopping – cutting short a trip to the outlet mall on a particularly bad day when my heart rate was 140 after taking just a few steps. This was orthostatic intolerance.

Then came the severe worsening of my migraines – which are often vestibular, making me nauseated and dizzy on top of the throbbing.

I was of course familiar with these symptoms, as professor and chair of the department of rehabilitation medicine at the Joe R. and Teresa Lozano Long School of Medicine at University of Texas Health Science Center, San Antonio. I developed a post-COVID recovery clinic to help patients.

So I knew about postexertional malaise (PEM) and postexertional symptom exacerbation (PESE), but I was now experiencing these distressing symptoms firsthand.

Clinicians really need to look for this cardinal sign of long COVID as well as evidence of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). ME/CFS is marked by exacerbation of fatigue or symptoms after an activity that could previously be done without these aftereffects. In my case, as an All-American Masters miler with several marathons under my belt, running 5 miles is a walk in the park. But now, I pay for those 5 miles for the rest of the day on the couch or with palpitations, dizziness, and fatigue the following day. Busy clinic day full of procedures? I would have to be sitting by the end of it. Bed by 9 PM was not always early enough.
 

Becoming a statistic

Here I am, one of the leading experts in the country on caring for people with long COVID, featured in the national news and having testified in front of Congress, and now I am part of that lived experience. Me – a healthy athlete, with no comorbidities, a normal BMI, vaccinated and boosted, and after an almost asymptomatic bout of COVID-19, a victim to long COVID.

You just never know how your body is going to react. Neuroinflammation occurred in studies with mice with mild respiratory COVID and could be happening to me. I did not want a chronic immune-mediated vasculopathy.

So, I did what any other hyperaware physician-researcher would do. I enrolled in the RECOVER trial – a study my own institution is taking part in and one that I recommend to my own patients.

I also decided that I need to access care and not just ignore my symptoms or try to treat them myself.

That’s when things got difficult. There was a wait of at least a month to see my primary care provider – but I was able to use my privileged position as a physician to get in sooner.

My provider said that she had limited knowledge of long COVID, and she hesitated to order some of the tests and treatments that I recommended because they were not yet considered standard of care. I can understand the hesitation. It is engrained in medical education to follow evidence based on the highest-quality research studies. We are slowly learning more about long COVID, but acknowledging the learning curve offers little to patients who need help now.

This has made me realize that we cannot wait on an evidence-based approach – which can take decades to develop – while people are suffering. And it’s important that everyone on the front line learn about some of the manifestations and disease management of long COVID.

I left this first physician visit feeling more defeated than anything and decided to try to push through. That, I quickly realized, was not the right thing to do.

So again, after a couple of significant crashes and days of severe migraines, I phoned a friend: Ratna Bhavaraju-Sanka, MD, the amazing neurologist who treats patients with long COVID alongside me. She squeezed me in on a non-clinic day. Again, I had the privilege to see a specialist most people wait half a year to see. I was diagnosed with both autonomic dysfunction and intractable migraine.

She ordered some intravenous fluids and IV magnesium that would probably help both. But then another obstacle arose. My institution’s infusion center is focused on patients with cancer, and I was unable to schedule treatments there.

Luckily, I knew about the concierge mobile IV hydration therapy companies that come to your house – mostly offering a hangover treatment service. And I am thankful that I had the health literacy and financial ability to pay for some fluids at home.

On another particularly bad day, I phoned other friends – higher-ups at the hospital – who expedited a slot at the hospital infusion center and approval for the IV magnesium.

Thanks to my access, knowledge, and other privileges, I got fairly quick if imperfect care, enrolled in a research trial, and received medications. I knew to pace myself. The vast majority of others with long COVID lack these advantages.
 

The patient with long COVID

Things I have learned that others can learn, too:

• Acknowledge and recognize that long COVID is a disease that is affecting 1 in 5 Americans who catch COVID. Many look completely “normal on the outside.” Please listen to your patients.
• Autonomic dysfunction is a common manifestation of long COVID. A 10-minute stand test goes a long way in diagnosing this condition, from the American Academy of Physical Medicine and Rehabilitation. It is not just anxiety.
• “That’s only in research” is dismissive and harmful. Think outside the box. Follow guidelines. Consider encouraging patients to sign up for trials.
• Screen for PEM/PESE and teach your patients to pace themselves, because pushing through it or doing graded exercises will be harmful.
• We need to train more physicians to treat postacute sequelae of SARS-CoV-2 infection () and other postinfectious conditions, such as ME/CFS.

If long COVID is hard for physicians to understand and deal with, imagine how difficult it is for patients with no expertise in this area.

It is exponentially harder for those with fewer resources, time, and health literacy. My lived experience with long COVID has shown me that being a patient is never easy. You put your body and fate into the hands of trusted professionals and expect validation and assistance, not gaslighting or gatekeeping.

Along with millions of others, I am tired of waiting.

Dr. Gutierrez is Professor and Distinguished Chair, department of rehabilitation medicine, University of Texas Health Science Center at San Antonio. She reported receiving honoraria for lecturing on long COVID and receiving a research grant from Co-PI for the NIH RECOVER trial.

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

One in 5. It almost seems unimaginable that this is the real number of people who are struggling with long COVID, especially considering how many people in the United States have had COVID-19 at this point (more than 96 million). Yet I continue to hear of people who are struggling, and we continue to see a flood of people in the long COVID clinic. It isn’t over, and long COVID is the new pandemic.

Even more unimaginable at this time is that it’s happening to me. I’ve experienced not only the disabling effects of long COVID, but I’ve also seen, firsthand, the frustration of navigating diagnosis and treatment. It’s given me a taste of what millions of other patients are going through.
 

Vaxxed, masked, and (too) relaxed

I caught COVID-19 (probably Omicron BA.5) that presented as sniffles, making me think it was probably just allergies. However, my resting heart rate was up on my Garmin watch, so of course I got tested and was positive.

With my symptoms virtually nonexistent, it seemed, at the time, merely an inconvenience, because I was forced to isolate away from family and friends, who all stayed negative.

But 2 weeks later, I began to have urticaria – hives – after physical exertion. Did that mean my mast cells were angry? There’s some evidence these immune cells become overactivated in some patients with COVID. Next, I began to experience lightheadedness and the rapid heartbeat of tachycardia. The tachycardia was especially bad any time I physically exerted myself, including on a walk. Imagine me – a lover of all bargain shopping – cutting short a trip to the outlet mall on a particularly bad day when my heart rate was 140 after taking just a few steps. This was orthostatic intolerance.

Then came the severe worsening of my migraines – which are often vestibular, making me nauseated and dizzy on top of the throbbing.

I was of course familiar with these symptoms, as professor and chair of the department of rehabilitation medicine at the Joe R. and Teresa Lozano Long School of Medicine at University of Texas Health Science Center, San Antonio. I developed a post-COVID recovery clinic to help patients.

So I knew about postexertional malaise (PEM) and postexertional symptom exacerbation (PESE), but I was now experiencing these distressing symptoms firsthand.

Clinicians really need to look for this cardinal sign of long COVID as well as evidence of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). ME/CFS is marked by exacerbation of fatigue or symptoms after an activity that could previously be done without these aftereffects. In my case, as an All-American Masters miler with several marathons under my belt, running 5 miles is a walk in the park. But now, I pay for those 5 miles for the rest of the day on the couch or with palpitations, dizziness, and fatigue the following day. Busy clinic day full of procedures? I would have to be sitting by the end of it. Bed by 9 PM was not always early enough.
 

Becoming a statistic

Here I am, one of the leading experts in the country on caring for people with long COVID, featured in the national news and having testified in front of Congress, and now I am part of that lived experience. Me – a healthy athlete, with no comorbidities, a normal BMI, vaccinated and boosted, and after an almost asymptomatic bout of COVID-19, a victim to long COVID.

You just never know how your body is going to react. Neuroinflammation occurred in studies with mice with mild respiratory COVID and could be happening to me. I did not want a chronic immune-mediated vasculopathy.

So, I did what any other hyperaware physician-researcher would do. I enrolled in the RECOVER trial – a study my own institution is taking part in and one that I recommend to my own patients.

I also decided that I need to access care and not just ignore my symptoms or try to treat them myself.

That’s when things got difficult. There was a wait of at least a month to see my primary care provider – but I was able to use my privileged position as a physician to get in sooner.

My provider said that she had limited knowledge of long COVID, and she hesitated to order some of the tests and treatments that I recommended because they were not yet considered standard of care. I can understand the hesitation. It is engrained in medical education to follow evidence based on the highest-quality research studies. We are slowly learning more about long COVID, but acknowledging the learning curve offers little to patients who need help now.

This has made me realize that we cannot wait on an evidence-based approach – which can take decades to develop – while people are suffering. And it’s important that everyone on the front line learn about some of the manifestations and disease management of long COVID.

I left this first physician visit feeling more defeated than anything and decided to try to push through. That, I quickly realized, was not the right thing to do.

So again, after a couple of significant crashes and days of severe migraines, I phoned a friend: Ratna Bhavaraju-Sanka, MD, the amazing neurologist who treats patients with long COVID alongside me. She squeezed me in on a non-clinic day. Again, I had the privilege to see a specialist most people wait half a year to see. I was diagnosed with both autonomic dysfunction and intractable migraine.

She ordered some intravenous fluids and IV magnesium that would probably help both. But then another obstacle arose. My institution’s infusion center is focused on patients with cancer, and I was unable to schedule treatments there.

Luckily, I knew about the concierge mobile IV hydration therapy companies that come to your house – mostly offering a hangover treatment service. And I am thankful that I had the health literacy and financial ability to pay for some fluids at home.

On another particularly bad day, I phoned other friends – higher-ups at the hospital – who expedited a slot at the hospital infusion center and approval for the IV magnesium.

Thanks to my access, knowledge, and other privileges, I got fairly quick if imperfect care, enrolled in a research trial, and received medications. I knew to pace myself. The vast majority of others with long COVID lack these advantages.
 

The patient with long COVID

Things I have learned that others can learn, too:

• Acknowledge and recognize that long COVID is a disease that is affecting 1 in 5 Americans who catch COVID. Many look completely “normal on the outside.” Please listen to your patients.
• Autonomic dysfunction is a common manifestation of long COVID. A 10-minute stand test goes a long way in diagnosing this condition, from the American Academy of Physical Medicine and Rehabilitation. It is not just anxiety.
• “That’s only in research” is dismissive and harmful. Think outside the box. Follow guidelines. Consider encouraging patients to sign up for trials.
• Screen for PEM/PESE and teach your patients to pace themselves, because pushing through it or doing graded exercises will be harmful.
• We need to train more physicians to treat postacute sequelae of SARS-CoV-2 infection () and other postinfectious conditions, such as ME/CFS.

If long COVID is hard for physicians to understand and deal with, imagine how difficult it is for patients with no expertise in this area.

It is exponentially harder for those with fewer resources, time, and health literacy. My lived experience with long COVID has shown me that being a patient is never easy. You put your body and fate into the hands of trusted professionals and expect validation and assistance, not gaslighting or gatekeeping.

Along with millions of others, I am tired of waiting.

Dr. Gutierrez is Professor and Distinguished Chair, department of rehabilitation medicine, University of Texas Health Science Center at San Antonio. She reported receiving honoraria for lecturing on long COVID and receiving a research grant from Co-PI for the NIH RECOVER trial.

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

One in 5. It almost seems unimaginable that this is the real number of people who are struggling with long COVID, especially considering how many people in the United States have had COVID-19 at this point (more than 96 million). Yet I continue to hear of people who are struggling, and we continue to see a flood of people in the long COVID clinic. It isn’t over, and long COVID is the new pandemic.

Even more unimaginable at this time is that it’s happening to me. I’ve experienced not only the disabling effects of long COVID, but I’ve also seen, firsthand, the frustration of navigating diagnosis and treatment. It’s given me a taste of what millions of other patients are going through.
 

Vaxxed, masked, and (too) relaxed

I caught COVID-19 (probably Omicron BA.5) that presented as sniffles, making me think it was probably just allergies. However, my resting heart rate was up on my Garmin watch, so of course I got tested and was positive.

With my symptoms virtually nonexistent, it seemed, at the time, merely an inconvenience, because I was forced to isolate away from family and friends, who all stayed negative.

But 2 weeks later, I began to have urticaria – hives – after physical exertion. Did that mean my mast cells were angry? There’s some evidence these immune cells become overactivated in some patients with COVID. Next, I began to experience lightheadedness and the rapid heartbeat of tachycardia. The tachycardia was especially bad any time I physically exerted myself, including on a walk. Imagine me – a lover of all bargain shopping – cutting short a trip to the outlet mall on a particularly bad day when my heart rate was 140 after taking just a few steps. This was orthostatic intolerance.

Then came the severe worsening of my migraines – which are often vestibular, making me nauseated and dizzy on top of the throbbing.

I was of course familiar with these symptoms, as professor and chair of the department of rehabilitation medicine at the Joe R. and Teresa Lozano Long School of Medicine at University of Texas Health Science Center, San Antonio. I developed a post-COVID recovery clinic to help patients.

So I knew about postexertional malaise (PEM) and postexertional symptom exacerbation (PESE), but I was now experiencing these distressing symptoms firsthand.

Clinicians really need to look for this cardinal sign of long COVID as well as evidence of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). ME/CFS is marked by exacerbation of fatigue or symptoms after an activity that could previously be done without these aftereffects. In my case, as an All-American Masters miler with several marathons under my belt, running 5 miles is a walk in the park. But now, I pay for those 5 miles for the rest of the day on the couch or with palpitations, dizziness, and fatigue the following day. Busy clinic day full of procedures? I would have to be sitting by the end of it. Bed by 9 PM was not always early enough.
 

Becoming a statistic

Here I am, one of the leading experts in the country on caring for people with long COVID, featured in the national news and having testified in front of Congress, and now I am part of that lived experience. Me – a healthy athlete, with no comorbidities, a normal BMI, vaccinated and boosted, and after an almost asymptomatic bout of COVID-19, a victim to long COVID.

You just never know how your body is going to react. Neuroinflammation occurred in studies with mice with mild respiratory COVID and could be happening to me. I did not want a chronic immune-mediated vasculopathy.

So, I did what any other hyperaware physician-researcher would do. I enrolled in the RECOVER trial – a study my own institution is taking part in and one that I recommend to my own patients.

I also decided that I need to access care and not just ignore my symptoms or try to treat them myself.

That’s when things got difficult. There was a wait of at least a month to see my primary care provider – but I was able to use my privileged position as a physician to get in sooner.

My provider said that she had limited knowledge of long COVID, and she hesitated to order some of the tests and treatments that I recommended because they were not yet considered standard of care. I can understand the hesitation. It is engrained in medical education to follow evidence based on the highest-quality research studies. We are slowly learning more about long COVID, but acknowledging the learning curve offers little to patients who need help now.

This has made me realize that we cannot wait on an evidence-based approach – which can take decades to develop – while people are suffering. And it’s important that everyone on the front line learn about some of the manifestations and disease management of long COVID.

I left this first physician visit feeling more defeated than anything and decided to try to push through. That, I quickly realized, was not the right thing to do.

So again, after a couple of significant crashes and days of severe migraines, I phoned a friend: Ratna Bhavaraju-Sanka, MD, the amazing neurologist who treats patients with long COVID alongside me. She squeezed me in on a non-clinic day. Again, I had the privilege to see a specialist most people wait half a year to see. I was diagnosed with both autonomic dysfunction and intractable migraine.

She ordered some intravenous fluids and IV magnesium that would probably help both. But then another obstacle arose. My institution’s infusion center is focused on patients with cancer, and I was unable to schedule treatments there.

Luckily, I knew about the concierge mobile IV hydration therapy companies that come to your house – mostly offering a hangover treatment service. And I am thankful that I had the health literacy and financial ability to pay for some fluids at home.

On another particularly bad day, I phoned other friends – higher-ups at the hospital – who expedited a slot at the hospital infusion center and approval for the IV magnesium.

Thanks to my access, knowledge, and other privileges, I got fairly quick if imperfect care, enrolled in a research trial, and received medications. I knew to pace myself. The vast majority of others with long COVID lack these advantages.
 

The patient with long COVID

Things I have learned that others can learn, too:

• Acknowledge and recognize that long COVID is a disease that is affecting 1 in 5 Americans who catch COVID. Many look completely “normal on the outside.” Please listen to your patients.
• Autonomic dysfunction is a common manifestation of long COVID. A 10-minute stand test goes a long way in diagnosing this condition, from the American Academy of Physical Medicine and Rehabilitation. It is not just anxiety.
• “That’s only in research” is dismissive and harmful. Think outside the box. Follow guidelines. Consider encouraging patients to sign up for trials.
• Screen for PEM/PESE and teach your patients to pace themselves, because pushing through it or doing graded exercises will be harmful.
• We need to train more physicians to treat postacute sequelae of SARS-CoV-2 infection () and other postinfectious conditions, such as ME/CFS.

If long COVID is hard for physicians to understand and deal with, imagine how difficult it is for patients with no expertise in this area.

It is exponentially harder for those with fewer resources, time, and health literacy. My lived experience with long COVID has shown me that being a patient is never easy. You put your body and fate into the hands of trusted professionals and expect validation and assistance, not gaslighting or gatekeeping.

Along with millions of others, I am tired of waiting.

Dr. Gutierrez is Professor and Distinguished Chair, department of rehabilitation medicine, University of Texas Health Science Center at San Antonio. She reported receiving honoraria for lecturing on long COVID and receiving a research grant from Co-PI for the NIH RECOVER trial.

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

It’s a devastating series of setbacks for long COVID patients. First, they get the debilitating symptoms of their condition. Then they are forced to give up their jobs, or severely curtail their work hours, as their symptoms linger. And next, for many, they lose their employer-sponsored health insurance. 

While not all long COVID patients are debilitated, the CDC’s ongoing survey on long COVID found a quarter of adults with long COVID report it significantly affects their day-to-day living activities.

Estimates have shown that long COVID has disrupted the lives of anywhere from 16 million to 34 million Americans between the ages of 18 and 65. 

While hard data is still limited, a Kaiser Family Foundation analysis found that more than half of adults with long COVID who worked before getting the virus are now either out of work or working fewer hours. 

According to data from the Census Bureau’s Household Pulse Survey, out of the estimated 16 million working-age adults who currently have long COVID, 2 million to 4 million of them are out of work because of their symptoms. The cost of those lost wages ranges from $170 billion a year to as much as $230 billion, the Census Bureau says. And given that approximately 155 million Americans have employer-sponsored health insurance, the welfare of working-age adults may be under serious threat. 

“Millions of people are now impacted by long COVID, and oftentimes along with that comes the inability to work,” says Megan Cole Brahim, PhD, an assistant professor in the department of health law, policy, and management at Boston University and codirector of the school’s Medicaid policy lab. “And because a lot of people get their health insurance coverage through employer-sponsored coverage, no longer being able to work means you may not have access to the health insurance that you once had.”

The CDC defines long COVID as a wide array of health conditions, including malaise, fatigue, shortness of breath, mental health issues, problems with the part of the nervous system that controls body functions, and more. 

Gwen Bishop was working remotely for the human resources department at the University of Washington Medical Centers, Seattle, when she got COVID-19. When the infection passed, Ms. Bishop, 39, thought she’d start feeling well enough to get back to work – but that didn’t happen. 

“When I would log in to work and just try to read emails,” she says, “it was like they were written in Greek. It made no sense and was incredibly stressful.”

This falls in line with what researchers have found out about the nervous system issues reported by people with long COVID. People who have survived acute COVID infections have reported lasting sensory and motor function problems, brain fog, and memory problems. 

Ms. Bishop, who was diagnosed with ADHD when she was in grade school, says another complication she got from her long COVID was a new intolerance to stimulants like coffee and her ADHD medication, Vyvanse, which were normal parts of her everyday life. 

“Every time I would take my ADHD medicine or have a cup of coffee, I would have a panic attack until it wore off,” says Ms. Bishop. “Vyvanse is a very long-acting stimulant, so that would be an entire day of an endless panic attack.” 

In order for her to get a medical leave approved, Ms. Bishop needed to get documents by a certain date from her doctor’s office that confirmed her long COVID diagnosis. She was able to get a couple of extensions, but Bishop says that with the burden that has been placed on our medical systems, getting in to see a doctor through her employer insurance was taking much longer than expected. By the time she got an appointment, she says, she had already been fired for missing too much work. Emails she provided showing exchanges between her and her employer verify her story. And without her health insurance, her appointment through that provider would no longer have been covered.

In July 2021, the U.S. Department of Health & Human Services issued guidance recognizing long COVID as a disability “if the person’s condition or any of its symptoms is a ‘physical or mental’ impairment that ‘substantially limits’ one or more major life activities.” 

But getting access to disability benefits hasn’t been easy for people with long COVID. On top of having to be out of work for 12 months before being able to qualify for Social Security Disability Insurance, some of those who have applied say they have had to put up a fight to actually gain access to disability insurance. The Social Security Administration has yet to reveal just how many applications that cited long COVID have been denied so far.  

David Barnett, a former bartender in the Seattle area in his early 40s, got COVID-19 in March 2020. Before his infection, he spent much of his time working on his feet, bodybuilding, and hiking with his partner. But for the last nearly 3 years, even just going for a walk has been a major challenge. He says he has spent much of his post-COVID life either chair-bound or bed-bound because of his symptoms. 

He is currently on his partner’s health insurance plan but is still responsible for copays and out-of-network appointments and treatments. After being unable to bartend any more, he started a GoFundMe account and dug into his personal savings. He says he applied for food stamps and is getting ready to sell his truck. Mr. Barnett applied for disability in March of this year but says he was denied benefits by the Social Security Administration and has hired a lawyer to appeal.

He runs a 24-hour online support group on Zoom for people with long COVID and says that no one in his close circle has successfully gotten access to disability payments. 

Alba Azola, MD, codirector of Johns Hopkins University’s Post-Acute COVID-19 Team, says at least half of her patients need some level of accommodations to get back to work; most can, if given the proper accommodations, such as switching to a job that can be done sitting down, or with limited time standing. But there are still patients who have been more severely disabled by their long COVID symptoms. 

“Work is such a part of people’s identity. The people who are very impaired, all they want to do is to get back to work and their normal lives,” she says.

Many of Dr. Azola’s long COVID patients aren’t able to return to their original jobs. She says they often have to find new positions more tailored to their new realities. One patient, a nurse and mother of five who previously worked in a facility where she got COVID-19, was out of work for 9 months after her infection. She ultimately lost her job, and Dr. Azola says the patient’s employer was hesitant to provide her with any accommodations. The patient was finally able to find a different job as a nurse coordinator where she doesn’t have to be standing for more than 10 minutes at a time. 

Ge Bai, PhD, a professor of health policy and management at Johns Hopkins Bloomberg School of Public Health, says the novelty of long COVID and the continued uncertainty around it raise questions for health insurance providers. 

“There’s no well-defined pathway to treat or cure this condition,” Dr. Bai says. “Right now, employers have discretion to determine when a condition is being covered or not being covered. So people with long COVID do have a risk that their treatments won’t be covered.”

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

It’s a devastating series of setbacks for long COVID patients. First, they get the debilitating symptoms of their condition. Then they are forced to give up their jobs, or severely curtail their work hours, as their symptoms linger. And next, for many, they lose their employer-sponsored health insurance. 

While not all long COVID patients are debilitated, the CDC’s ongoing survey on long COVID found a quarter of adults with long COVID report it significantly affects their day-to-day living activities.

Estimates have shown that long COVID has disrupted the lives of anywhere from 16 million to 34 million Americans between the ages of 18 and 65. 

While hard data is still limited, a Kaiser Family Foundation analysis found that more than half of adults with long COVID who worked before getting the virus are now either out of work or working fewer hours. 

According to data from the Census Bureau’s Household Pulse Survey, out of the estimated 16 million working-age adults who currently have long COVID, 2 million to 4 million of them are out of work because of their symptoms. The cost of those lost wages ranges from $170 billion a year to as much as $230 billion, the Census Bureau says. And given that approximately 155 million Americans have employer-sponsored health insurance, the welfare of working-age adults may be under serious threat. 

“Millions of people are now impacted by long COVID, and oftentimes along with that comes the inability to work,” says Megan Cole Brahim, PhD, an assistant professor in the department of health law, policy, and management at Boston University and codirector of the school’s Medicaid policy lab. “And because a lot of people get their health insurance coverage through employer-sponsored coverage, no longer being able to work means you may not have access to the health insurance that you once had.”

The CDC defines long COVID as a wide array of health conditions, including malaise, fatigue, shortness of breath, mental health issues, problems with the part of the nervous system that controls body functions, and more. 

Gwen Bishop was working remotely for the human resources department at the University of Washington Medical Centers, Seattle, when she got COVID-19. When the infection passed, Ms. Bishop, 39, thought she’d start feeling well enough to get back to work – but that didn’t happen. 

“When I would log in to work and just try to read emails,” she says, “it was like they were written in Greek. It made no sense and was incredibly stressful.”

This falls in line with what researchers have found out about the nervous system issues reported by people with long COVID. People who have survived acute COVID infections have reported lasting sensory and motor function problems, brain fog, and memory problems. 

Ms. Bishop, who was diagnosed with ADHD when she was in grade school, says another complication she got from her long COVID was a new intolerance to stimulants like coffee and her ADHD medication, Vyvanse, which were normal parts of her everyday life. 

“Every time I would take my ADHD medicine or have a cup of coffee, I would have a panic attack until it wore off,” says Ms. Bishop. “Vyvanse is a very long-acting stimulant, so that would be an entire day of an endless panic attack.” 

In order for her to get a medical leave approved, Ms. Bishop needed to get documents by a certain date from her doctor’s office that confirmed her long COVID diagnosis. She was able to get a couple of extensions, but Bishop says that with the burden that has been placed on our medical systems, getting in to see a doctor through her employer insurance was taking much longer than expected. By the time she got an appointment, she says, she had already been fired for missing too much work. Emails she provided showing exchanges between her and her employer verify her story. And without her health insurance, her appointment through that provider would no longer have been covered.

In July 2021, the U.S. Department of Health & Human Services issued guidance recognizing long COVID as a disability “if the person’s condition or any of its symptoms is a ‘physical or mental’ impairment that ‘substantially limits’ one or more major life activities.” 

But getting access to disability benefits hasn’t been easy for people with long COVID. On top of having to be out of work for 12 months before being able to qualify for Social Security Disability Insurance, some of those who have applied say they have had to put up a fight to actually gain access to disability insurance. The Social Security Administration has yet to reveal just how many applications that cited long COVID have been denied so far.  

David Barnett, a former bartender in the Seattle area in his early 40s, got COVID-19 in March 2020. Before his infection, he spent much of his time working on his feet, bodybuilding, and hiking with his partner. But for the last nearly 3 years, even just going for a walk has been a major challenge. He says he has spent much of his post-COVID life either chair-bound or bed-bound because of his symptoms. 

He is currently on his partner’s health insurance plan but is still responsible for copays and out-of-network appointments and treatments. After being unable to bartend any more, he started a GoFundMe account and dug into his personal savings. He says he applied for food stamps and is getting ready to sell his truck. Mr. Barnett applied for disability in March of this year but says he was denied benefits by the Social Security Administration and has hired a lawyer to appeal.

He runs a 24-hour online support group on Zoom for people with long COVID and says that no one in his close circle has successfully gotten access to disability payments. 

Alba Azola, MD, codirector of Johns Hopkins University’s Post-Acute COVID-19 Team, says at least half of her patients need some level of accommodations to get back to work; most can, if given the proper accommodations, such as switching to a job that can be done sitting down, or with limited time standing. But there are still patients who have been more severely disabled by their long COVID symptoms. 

“Work is such a part of people’s identity. The people who are very impaired, all they want to do is to get back to work and their normal lives,” she says.

Many of Dr. Azola’s long COVID patients aren’t able to return to their original jobs. She says they often have to find new positions more tailored to their new realities. One patient, a nurse and mother of five who previously worked in a facility where she got COVID-19, was out of work for 9 months after her infection. She ultimately lost her job, and Dr. Azola says the patient’s employer was hesitant to provide her with any accommodations. The patient was finally able to find a different job as a nurse coordinator where she doesn’t have to be standing for more than 10 minutes at a time. 

Ge Bai, PhD, a professor of health policy and management at Johns Hopkins Bloomberg School of Public Health, says the novelty of long COVID and the continued uncertainty around it raise questions for health insurance providers. 

“There’s no well-defined pathway to treat or cure this condition,” Dr. Bai says. “Right now, employers have discretion to determine when a condition is being covered or not being covered. So people with long COVID do have a risk that their treatments won’t be covered.”

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

It’s a devastating series of setbacks for long COVID patients. First, they get the debilitating symptoms of their condition. Then they are forced to give up their jobs, or severely curtail their work hours, as their symptoms linger. And next, for many, they lose their employer-sponsored health insurance. 

While not all long COVID patients are debilitated, the CDC’s ongoing survey on long COVID found a quarter of adults with long COVID report it significantly affects their day-to-day living activities.

Estimates have shown that long COVID has disrupted the lives of anywhere from 16 million to 34 million Americans between the ages of 18 and 65. 

While hard data is still limited, a Kaiser Family Foundation analysis found that more than half of adults with long COVID who worked before getting the virus are now either out of work or working fewer hours. 

According to data from the Census Bureau’s Household Pulse Survey, out of the estimated 16 million working-age adults who currently have long COVID, 2 million to 4 million of them are out of work because of their symptoms. The cost of those lost wages ranges from $170 billion a year to as much as $230 billion, the Census Bureau says. And given that approximately 155 million Americans have employer-sponsored health insurance, the welfare of working-age adults may be under serious threat. 

“Millions of people are now impacted by long COVID, and oftentimes along with that comes the inability to work,” says Megan Cole Brahim, PhD, an assistant professor in the department of health law, policy, and management at Boston University and codirector of the school’s Medicaid policy lab. “And because a lot of people get their health insurance coverage through employer-sponsored coverage, no longer being able to work means you may not have access to the health insurance that you once had.”

The CDC defines long COVID as a wide array of health conditions, including malaise, fatigue, shortness of breath, mental health issues, problems with the part of the nervous system that controls body functions, and more. 

Gwen Bishop was working remotely for the human resources department at the University of Washington Medical Centers, Seattle, when she got COVID-19. When the infection passed, Ms. Bishop, 39, thought she’d start feeling well enough to get back to work – but that didn’t happen. 

“When I would log in to work and just try to read emails,” she says, “it was like they were written in Greek. It made no sense and was incredibly stressful.”

This falls in line with what researchers have found out about the nervous system issues reported by people with long COVID. People who have survived acute COVID infections have reported lasting sensory and motor function problems, brain fog, and memory problems. 

Ms. Bishop, who was diagnosed with ADHD when she was in grade school, says another complication she got from her long COVID was a new intolerance to stimulants like coffee and her ADHD medication, Vyvanse, which were normal parts of her everyday life. 

“Every time I would take my ADHD medicine or have a cup of coffee, I would have a panic attack until it wore off,” says Ms. Bishop. “Vyvanse is a very long-acting stimulant, so that would be an entire day of an endless panic attack.” 

In order for her to get a medical leave approved, Ms. Bishop needed to get documents by a certain date from her doctor’s office that confirmed her long COVID diagnosis. She was able to get a couple of extensions, but Bishop says that with the burden that has been placed on our medical systems, getting in to see a doctor through her employer insurance was taking much longer than expected. By the time she got an appointment, she says, she had already been fired for missing too much work. Emails she provided showing exchanges between her and her employer verify her story. And without her health insurance, her appointment through that provider would no longer have been covered.

In July 2021, the U.S. Department of Health & Human Services issued guidance recognizing long COVID as a disability “if the person’s condition or any of its symptoms is a ‘physical or mental’ impairment that ‘substantially limits’ one or more major life activities.” 

But getting access to disability benefits hasn’t been easy for people with long COVID. On top of having to be out of work for 12 months before being able to qualify for Social Security Disability Insurance, some of those who have applied say they have had to put up a fight to actually gain access to disability insurance. The Social Security Administration has yet to reveal just how many applications that cited long COVID have been denied so far.  

David Barnett, a former bartender in the Seattle area in his early 40s, got COVID-19 in March 2020. Before his infection, he spent much of his time working on his feet, bodybuilding, and hiking with his partner. But for the last nearly 3 years, even just going for a walk has been a major challenge. He says he has spent much of his post-COVID life either chair-bound or bed-bound because of his symptoms. 

He is currently on his partner’s health insurance plan but is still responsible for copays and out-of-network appointments and treatments. After being unable to bartend any more, he started a GoFundMe account and dug into his personal savings. He says he applied for food stamps and is getting ready to sell his truck. Mr. Barnett applied for disability in March of this year but says he was denied benefits by the Social Security Administration and has hired a lawyer to appeal.

He runs a 24-hour online support group on Zoom for people with long COVID and says that no one in his close circle has successfully gotten access to disability payments. 

Alba Azola, MD, codirector of Johns Hopkins University’s Post-Acute COVID-19 Team, says at least half of her patients need some level of accommodations to get back to work; most can, if given the proper accommodations, such as switching to a job that can be done sitting down, or with limited time standing. But there are still patients who have been more severely disabled by their long COVID symptoms. 

“Work is such a part of people’s identity. The people who are very impaired, all they want to do is to get back to work and their normal lives,” she says.

Many of Dr. Azola’s long COVID patients aren’t able to return to their original jobs. She says they often have to find new positions more tailored to their new realities. One patient, a nurse and mother of five who previously worked in a facility where she got COVID-19, was out of work for 9 months after her infection. She ultimately lost her job, and Dr. Azola says the patient’s employer was hesitant to provide her with any accommodations. The patient was finally able to find a different job as a nurse coordinator where she doesn’t have to be standing for more than 10 minutes at a time. 

Ge Bai, PhD, a professor of health policy and management at Johns Hopkins Bloomberg School of Public Health, says the novelty of long COVID and the continued uncertainty around it raise questions for health insurance providers. 

“There’s no well-defined pathway to treat or cure this condition,” Dr. Bai says. “Right now, employers have discretion to determine when a condition is being covered or not being covered. So people with long COVID do have a risk that their treatments won’t be covered.”

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

About 1 in 20 people with long COVID continue to live with symptoms at 18 months, and another 42% reported only some improvement in their health and wellbeing in the same time frame, a large study out of Scotland found.

Multiple studies are evaluating people with long COVID in the hopes of figuring out why some people experience debilitating symptoms long after their primary infection ends and others either do not or recover more quickly. 

This current study is notable for its large size – 96,238 people. Researchers checked in with participants at 6, 12, and 18 months, and included a group of people never infected with the coronavirus to help investigators make a stronger case.

“A lot of the symptoms of long COVID are nonspecific and therefore can occur in people never infected,” says senior study author Jill P. Pell, MD, head of the School of Health and Wellbeing at the University of Glasgow in Scotland. 
 

Ruling out coincidence

This study shows that people experienced a wide range of symptoms after becoming infected with COVID-19 at a significantly higher rate than those who were never infected, “thereby confirming that they were genuinely associated with COVID and not merely a coincidence,” she said. 

Among 21,525 people who had COVID-19 and had symptoms, tiredness, headache and muscle aches or muscle weakness were the most common ongoing symptoms. 

Loss of smell was almost nine times more likely in this group compared to the never-infected group in one analysis where researchers controlled for other possible factors. The risk for loss of taste was almost six times greater, followed by risk of breathlessness at three times higher. 

Long COVID risk was highest after a severe original infection and among older people, women, Black, and South Asian populations, people with socioeconomic disadvantages, and those with more than one underlying health condition.

Adding up the 6% with no recovery after 18 months and 42% with partial recovery means that between 6 and 18 months following symptomatic coronavirus infection, almost half of those infected still experience persistent symptoms.
 

Vaccination validated

On the plus side, people vaccinated against COVID-19 before getting infected had a lower risk for some persistent symptoms. In addition, Dr. Pell and colleagues found no evidence that people who experienced asymptomatic infection were likely to experience long COVID symptoms or challenges with activities of daily living. 

The findings of the Long-COVID in Scotland Study (Long-CISS) were published in the journal Nature Communications.
 

‘More long COVID than ever before’

“Unfortunately, these long COVID symptoms are not getting better as the cases of COVID get milder,” said Thomas Gut, DO, medical director for the post-COVID recovery program at Staten Island (N.Y.) University Hospital. “Quite the opposite – this infection has become so common in a community because it’s so mild and spreading so rapidly that we’re seeing more long COVID symptoms than ever before.” 

Although most patients he sees with long COVID resolve their symptoms within 3-6 months, “We do see some patients who require short-term disability because their symptoms continue past 6 months and out to 2 years,” said Dr. Gut, a hospitalist at Staten Island University Hospital, a member hospital of Northwell Health.

Patients with fatigue and neurocognitive symptoms “have a very tough time going back to work. Short-term disability gives them the time and finances to pursue specialty care with cardiology, pulmonary, and neurocognitive testing,” he said.
 

Support the whole person

The burden of living with long COVID goes beyond the persistent symptoms. “Long COVID can have wide-ranging impacts – not only on health but also quality of life and activities of daily living [including] work, mobility, self-care and more,” Dr. Pell said. “So, people with long COVID need support relevant to their individual needs and this may extend beyond the health care sector, for example including social services, school or workplace.”

Still,  Lisa Penziner, RN, founder of the COVID Long Haulers Support Group in Westchester and Long Island, N.Y., said while people with the most severe cases of COVID-19 tended to have the worst long COVID symptoms, they’re not the only ones. 

“We saw many post-COVID members who had mild cases and their long-haul symptoms were worse weeks later than the virus itself,” said Md. Penziner. 

She estimates that 80%-90% of her support group members recover within 6 months. “However, there are others who were experiencing symptoms for much longer.”

Respiratory treatment, physical therapy, and other follow-up doctor visits are common after 6 months, for example. 

“Additionally, there is a mental health component to recovery as well, meaning that the patient must learn to live while experiencing lingering, long-haul COVID symptoms in work and daily life,” said Ms. Penziner, director of special projects at North Westchester Restorative Therapy & Nursing. 

In addition to ongoing medical care, people with long COVID need understanding, she said.

“While long-haul symptoms do not happen to everyone, it is proven that many do experience long-haul symptoms, and the support of the community in understanding is important.”
 

Limitations of the study

Dr. Pell and colleagues noted some strengths and weaknesses to their study. For example, “as a general population study, our findings provide a better indication of the overall risk and burden of long COVID than hospitalized cohorts,” they noted. 

Also, the Scottish population is 96% White, so other long COVID studies with more diverse participants are warranted. 

Another potential weakness is the response rate of 16% among those invited to participate in the study, which Dr. Pell and colleagues addressed: “Our cohort included a large sample (33,281) of people previously infected and the response rate of 16% overall and 20% among people who had symptomatic infection was consistent with previous studies that have used SMS text invitations as the sole method of recruitment.”

“We tell patients this should last 3-6 months, but some patients have longer recovery periods,” Dr. Gut said. “We’re here for them. We have a lot of services available to help get them through the recovery process, and we have a lot of options to help support them.”

“What we found most helpful is when there is peer-to-peer support, reaffirming to the member that they are not alone in the long-haul battle, which has been a major benefit of the support group,” Ms. Penziner said.

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

About 1 in 20 people with long COVID continue to live with symptoms at 18 months, and another 42% reported only some improvement in their health and wellbeing in the same time frame, a large study out of Scotland found.

Multiple studies are evaluating people with long COVID in the hopes of figuring out why some people experience debilitating symptoms long after their primary infection ends and others either do not or recover more quickly. 

This current study is notable for its large size – 96,238 people. Researchers checked in with participants at 6, 12, and 18 months, and included a group of people never infected with the coronavirus to help investigators make a stronger case.

“A lot of the symptoms of long COVID are nonspecific and therefore can occur in people never infected,” says senior study author Jill P. Pell, MD, head of the School of Health and Wellbeing at the University of Glasgow in Scotland. 
 

Ruling out coincidence

This study shows that people experienced a wide range of symptoms after becoming infected with COVID-19 at a significantly higher rate than those who were never infected, “thereby confirming that they were genuinely associated with COVID and not merely a coincidence,” she said. 

Among 21,525 people who had COVID-19 and had symptoms, tiredness, headache and muscle aches or muscle weakness were the most common ongoing symptoms. 

Loss of smell was almost nine times more likely in this group compared to the never-infected group in one analysis where researchers controlled for other possible factors. The risk for loss of taste was almost six times greater, followed by risk of breathlessness at three times higher. 

Long COVID risk was highest after a severe original infection and among older people, women, Black, and South Asian populations, people with socioeconomic disadvantages, and those with more than one underlying health condition.

Adding up the 6% with no recovery after 18 months and 42% with partial recovery means that between 6 and 18 months following symptomatic coronavirus infection, almost half of those infected still experience persistent symptoms.
 

Vaccination validated

On the plus side, people vaccinated against COVID-19 before getting infected had a lower risk for some persistent symptoms. In addition, Dr. Pell and colleagues found no evidence that people who experienced asymptomatic infection were likely to experience long COVID symptoms or challenges with activities of daily living. 

The findings of the Long-COVID in Scotland Study (Long-CISS) were published in the journal Nature Communications.
 

‘More long COVID than ever before’

“Unfortunately, these long COVID symptoms are not getting better as the cases of COVID get milder,” said Thomas Gut, DO, medical director for the post-COVID recovery program at Staten Island (N.Y.) University Hospital. “Quite the opposite – this infection has become so common in a community because it’s so mild and spreading so rapidly that we’re seeing more long COVID symptoms than ever before.” 

Although most patients he sees with long COVID resolve their symptoms within 3-6 months, “We do see some patients who require short-term disability because their symptoms continue past 6 months and out to 2 years,” said Dr. Gut, a hospitalist at Staten Island University Hospital, a member hospital of Northwell Health.

Patients with fatigue and neurocognitive symptoms “have a very tough time going back to work. Short-term disability gives them the time and finances to pursue specialty care with cardiology, pulmonary, and neurocognitive testing,” he said.
 

Support the whole person

The burden of living with long COVID goes beyond the persistent symptoms. “Long COVID can have wide-ranging impacts – not only on health but also quality of life and activities of daily living [including] work, mobility, self-care and more,” Dr. Pell said. “So, people with long COVID need support relevant to their individual needs and this may extend beyond the health care sector, for example including social services, school or workplace.”

Still,  Lisa Penziner, RN, founder of the COVID Long Haulers Support Group in Westchester and Long Island, N.Y., said while people with the most severe cases of COVID-19 tended to have the worst long COVID symptoms, they’re not the only ones. 

“We saw many post-COVID members who had mild cases and their long-haul symptoms were worse weeks later than the virus itself,” said Md. Penziner. 

She estimates that 80%-90% of her support group members recover within 6 months. “However, there are others who were experiencing symptoms for much longer.”

Respiratory treatment, physical therapy, and other follow-up doctor visits are common after 6 months, for example. 

“Additionally, there is a mental health component to recovery as well, meaning that the patient must learn to live while experiencing lingering, long-haul COVID symptoms in work and daily life,” said Ms. Penziner, director of special projects at North Westchester Restorative Therapy & Nursing. 

In addition to ongoing medical care, people with long COVID need understanding, she said.

“While long-haul symptoms do not happen to everyone, it is proven that many do experience long-haul symptoms, and the support of the community in understanding is important.”
 

Limitations of the study

Dr. Pell and colleagues noted some strengths and weaknesses to their study. For example, “as a general population study, our findings provide a better indication of the overall risk and burden of long COVID than hospitalized cohorts,” they noted. 

Also, the Scottish population is 96% White, so other long COVID studies with more diverse participants are warranted. 

Another potential weakness is the response rate of 16% among those invited to participate in the study, which Dr. Pell and colleagues addressed: “Our cohort included a large sample (33,281) of people previously infected and the response rate of 16% overall and 20% among people who had symptomatic infection was consistent with previous studies that have used SMS text invitations as the sole method of recruitment.”

“We tell patients this should last 3-6 months, but some patients have longer recovery periods,” Dr. Gut said. “We’re here for them. We have a lot of services available to help get them through the recovery process, and we have a lot of options to help support them.”

“What we found most helpful is when there is peer-to-peer support, reaffirming to the member that they are not alone in the long-haul battle, which has been a major benefit of the support group,” Ms. Penziner said.

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

About 1 in 20 people with long COVID continue to live with symptoms at 18 months, and another 42% reported only some improvement in their health and wellbeing in the same time frame, a large study out of Scotland found.

Multiple studies are evaluating people with long COVID in the hopes of figuring out why some people experience debilitating symptoms long after their primary infection ends and others either do not or recover more quickly. 

This current study is notable for its large size – 96,238 people. Researchers checked in with participants at 6, 12, and 18 months, and included a group of people never infected with the coronavirus to help investigators make a stronger case.

“A lot of the symptoms of long COVID are nonspecific and therefore can occur in people never infected,” says senior study author Jill P. Pell, MD, head of the School of Health and Wellbeing at the University of Glasgow in Scotland. 
 

Ruling out coincidence

This study shows that people experienced a wide range of symptoms after becoming infected with COVID-19 at a significantly higher rate than those who were never infected, “thereby confirming that they were genuinely associated with COVID and not merely a coincidence,” she said. 

Among 21,525 people who had COVID-19 and had symptoms, tiredness, headache and muscle aches or muscle weakness were the most common ongoing symptoms. 

Loss of smell was almost nine times more likely in this group compared to the never-infected group in one analysis where researchers controlled for other possible factors. The risk for loss of taste was almost six times greater, followed by risk of breathlessness at three times higher. 

Long COVID risk was highest after a severe original infection and among older people, women, Black, and South Asian populations, people with socioeconomic disadvantages, and those with more than one underlying health condition.

Adding up the 6% with no recovery after 18 months and 42% with partial recovery means that between 6 and 18 months following symptomatic coronavirus infection, almost half of those infected still experience persistent symptoms.
 

Vaccination validated

On the plus side, people vaccinated against COVID-19 before getting infected had a lower risk for some persistent symptoms. In addition, Dr. Pell and colleagues found no evidence that people who experienced asymptomatic infection were likely to experience long COVID symptoms or challenges with activities of daily living. 

The findings of the Long-COVID in Scotland Study (Long-CISS) were published in the journal Nature Communications.
 

‘More long COVID than ever before’

“Unfortunately, these long COVID symptoms are not getting better as the cases of COVID get milder,” said Thomas Gut, DO, medical director for the post-COVID recovery program at Staten Island (N.Y.) University Hospital. “Quite the opposite – this infection has become so common in a community because it’s so mild and spreading so rapidly that we’re seeing more long COVID symptoms than ever before.” 

Although most patients he sees with long COVID resolve their symptoms within 3-6 months, “We do see some patients who require short-term disability because their symptoms continue past 6 months and out to 2 years,” said Dr. Gut, a hospitalist at Staten Island University Hospital, a member hospital of Northwell Health.

Patients with fatigue and neurocognitive symptoms “have a very tough time going back to work. Short-term disability gives them the time and finances to pursue specialty care with cardiology, pulmonary, and neurocognitive testing,” he said.
 

Support the whole person

The burden of living with long COVID goes beyond the persistent symptoms. “Long COVID can have wide-ranging impacts – not only on health but also quality of life and activities of daily living [including] work, mobility, self-care and more,” Dr. Pell said. “So, people with long COVID need support relevant to their individual needs and this may extend beyond the health care sector, for example including social services, school or workplace.”

Still,  Lisa Penziner, RN, founder of the COVID Long Haulers Support Group in Westchester and Long Island, N.Y., said while people with the most severe cases of COVID-19 tended to have the worst long COVID symptoms, they’re not the only ones. 

“We saw many post-COVID members who had mild cases and their long-haul symptoms were worse weeks later than the virus itself,” said Md. Penziner. 

She estimates that 80%-90% of her support group members recover within 6 months. “However, there are others who were experiencing symptoms for much longer.”

Respiratory treatment, physical therapy, and other follow-up doctor visits are common after 6 months, for example. 

“Additionally, there is a mental health component to recovery as well, meaning that the patient must learn to live while experiencing lingering, long-haul COVID symptoms in work and daily life,” said Ms. Penziner, director of special projects at North Westchester Restorative Therapy & Nursing. 

In addition to ongoing medical care, people with long COVID need understanding, she said.

“While long-haul symptoms do not happen to everyone, it is proven that many do experience long-haul symptoms, and the support of the community in understanding is important.”
 

Limitations of the study

Dr. Pell and colleagues noted some strengths and weaknesses to their study. For example, “as a general population study, our findings provide a better indication of the overall risk and burden of long COVID than hospitalized cohorts,” they noted. 

Also, the Scottish population is 96% White, so other long COVID studies with more diverse participants are warranted. 

Another potential weakness is the response rate of 16% among those invited to participate in the study, which Dr. Pell and colleagues addressed: “Our cohort included a large sample (33,281) of people previously infected and the response rate of 16% overall and 20% among people who had symptomatic infection was consistent with previous studies that have used SMS text invitations as the sole method of recruitment.”

“We tell patients this should last 3-6 months, but some patients have longer recovery periods,” Dr. Gut said. “We’re here for them. We have a lot of services available to help get them through the recovery process, and we have a lot of options to help support them.”

“What we found most helpful is when there is peer-to-peer support, reaffirming to the member that they are not alone in the long-haul battle, which has been a major benefit of the support group,” Ms. Penziner said.

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