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Heart Attack, Stroke Survivors at High Risk for Long COVID
Primary care doctors and specialists should advise patients who have already experienced a heart attack or stroke that they are at a higher risk for long COVID and need to take steps to avoid contracting the virus, according to new research.
The study, led by researchers at Columbia University, New York City, suggests that anyone with cardiovascular disease (CVD) — defined as having experienced a heart attack or stroke — should consider getting the updated COVID vaccine boosters. They also suggest patients with CVD take other steps to avoid an acute infection, such as avoiding crowded indoor spaces.
There is no specific test or treatment for long COVID, which can become disabling and chronic. Long COVID is defined by the failure to recover from acute COVID-19 in 90 days.
The scientists used data from nearly 5000 people enrolled in 14 established, ongoing research programs, including the 76-year-old Framingham Heart Study. The results of the analysis of the “mega-cohort” were published in JAMA Network Open.
Most of the 14 studies already had 10-20 years of data on the cardiac health of thousands of enrollees, said Norrina B. Allen, one of the authors and a cardiac epidemiologist at Northwestern University Feinberg School of Medicine in Chicago, Illinois.
“This is a particularly strong study that looked at risk factors — or individual health — prior to developing COVID and their impact on the likely of recovering from COVID,” she said.
In addition to those with CVD, women and adults with preexisting chronic illnesses took longer to recover.
More than 20% of those in the large, racially and ethnically diverse US population–based study did not recover from COVID in 90 days. The researchers found that the median self-reported time to recovery from acute infection was 20 days.
While women and those with chronic illness had a higher risk for long COVID, vaccination and infection with the Omicron variant wave were associated with shorter recovery times.
These findings make sense, said Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care System and clinical epidemiologist at Washington University in St. Louis, Missouri.
“We also see that COVID-19 can lead to new-onset cardiovascular disease,” said Al-Aly, who was not involved in the study. “There is clearly a (link) between COVID and cardiovascular disease. These two seem to be intimately intertwined. In my view, this emphasizes the importance of targeting these individuals for vaccination and potentially antivirals (when they get infected) to help reduce their risk of adverse events and ameliorate their chance of full and fast recovery.”
The study used data from the Collaborative Cohort of Cohorts for COVID-19 Research. The long list of researchers contributing to this study includes epidemiologists, biostatisticians, neurologists, pulmonologists, and cardiologists. The data come from a list of cohorts like the Framingham Heart Study, which identified key risk factors for CVD, including cholesterol levels. Other studies include the Atherosclerosis Risk in Communities study, which began in the mid-1980s. Researchers there recruited a cohort of 15,792 men and women in rural North Carolina and Mississippi and suburban Minneapolis. They enrolled a high number of African American participants, who have been underrepresented in past studies. Other cohorts focused on young adults with CVD and Hispanics, while another focused on people with chronic obstructive pulmonary disease.
Lead author Elizabeth C. Oelsner, MD, of Columbia University Irving Medical Center in New York City, said she was not surprised by the CVD-long COVID link.
“We were aware that individuals with CVD were at higher risk of a more severe acute infection,” she said. “We were also seeing evidence that long and severe infection led to persistent symptoms.”
Oelsner noted that many patients still take more than 3 months to recover, even during the Omicron wave.
“While that has improved over the course of the pandemic, many individuals are taking a very long time to recover, and that can have a huge burden on the patient,” she said.
She encourages healthcare providers to tell patients at higher risk to take steps to avoid the virus, including vaccination and boosters.
A version of this article first appeared on Medscape.com.
Primary care doctors and specialists should advise patients who have already experienced a heart attack or stroke that they are at a higher risk for long COVID and need to take steps to avoid contracting the virus, according to new research.
The study, led by researchers at Columbia University, New York City, suggests that anyone with cardiovascular disease (CVD) — defined as having experienced a heart attack or stroke — should consider getting the updated COVID vaccine boosters. They also suggest patients with CVD take other steps to avoid an acute infection, such as avoiding crowded indoor spaces.
There is no specific test or treatment for long COVID, which can become disabling and chronic. Long COVID is defined by the failure to recover from acute COVID-19 in 90 days.
The scientists used data from nearly 5000 people enrolled in 14 established, ongoing research programs, including the 76-year-old Framingham Heart Study. The results of the analysis of the “mega-cohort” were published in JAMA Network Open.
Most of the 14 studies already had 10-20 years of data on the cardiac health of thousands of enrollees, said Norrina B. Allen, one of the authors and a cardiac epidemiologist at Northwestern University Feinberg School of Medicine in Chicago, Illinois.
“This is a particularly strong study that looked at risk factors — or individual health — prior to developing COVID and their impact on the likely of recovering from COVID,” she said.
In addition to those with CVD, women and adults with preexisting chronic illnesses took longer to recover.
More than 20% of those in the large, racially and ethnically diverse US population–based study did not recover from COVID in 90 days. The researchers found that the median self-reported time to recovery from acute infection was 20 days.
While women and those with chronic illness had a higher risk for long COVID, vaccination and infection with the Omicron variant wave were associated with shorter recovery times.
These findings make sense, said Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care System and clinical epidemiologist at Washington University in St. Louis, Missouri.
“We also see that COVID-19 can lead to new-onset cardiovascular disease,” said Al-Aly, who was not involved in the study. “There is clearly a (link) between COVID and cardiovascular disease. These two seem to be intimately intertwined. In my view, this emphasizes the importance of targeting these individuals for vaccination and potentially antivirals (when they get infected) to help reduce their risk of adverse events and ameliorate their chance of full and fast recovery.”
The study used data from the Collaborative Cohort of Cohorts for COVID-19 Research. The long list of researchers contributing to this study includes epidemiologists, biostatisticians, neurologists, pulmonologists, and cardiologists. The data come from a list of cohorts like the Framingham Heart Study, which identified key risk factors for CVD, including cholesterol levels. Other studies include the Atherosclerosis Risk in Communities study, which began in the mid-1980s. Researchers there recruited a cohort of 15,792 men and women in rural North Carolina and Mississippi and suburban Minneapolis. They enrolled a high number of African American participants, who have been underrepresented in past studies. Other cohorts focused on young adults with CVD and Hispanics, while another focused on people with chronic obstructive pulmonary disease.
Lead author Elizabeth C. Oelsner, MD, of Columbia University Irving Medical Center in New York City, said she was not surprised by the CVD-long COVID link.
“We were aware that individuals with CVD were at higher risk of a more severe acute infection,” she said. “We were also seeing evidence that long and severe infection led to persistent symptoms.”
Oelsner noted that many patients still take more than 3 months to recover, even during the Omicron wave.
“While that has improved over the course of the pandemic, many individuals are taking a very long time to recover, and that can have a huge burden on the patient,” she said.
She encourages healthcare providers to tell patients at higher risk to take steps to avoid the virus, including vaccination and boosters.
A version of this article first appeared on Medscape.com.
Primary care doctors and specialists should advise patients who have already experienced a heart attack or stroke that they are at a higher risk for long COVID and need to take steps to avoid contracting the virus, according to new research.
The study, led by researchers at Columbia University, New York City, suggests that anyone with cardiovascular disease (CVD) — defined as having experienced a heart attack or stroke — should consider getting the updated COVID vaccine boosters. They also suggest patients with CVD take other steps to avoid an acute infection, such as avoiding crowded indoor spaces.
There is no specific test or treatment for long COVID, which can become disabling and chronic. Long COVID is defined by the failure to recover from acute COVID-19 in 90 days.
The scientists used data from nearly 5000 people enrolled in 14 established, ongoing research programs, including the 76-year-old Framingham Heart Study. The results of the analysis of the “mega-cohort” were published in JAMA Network Open.
Most of the 14 studies already had 10-20 years of data on the cardiac health of thousands of enrollees, said Norrina B. Allen, one of the authors and a cardiac epidemiologist at Northwestern University Feinberg School of Medicine in Chicago, Illinois.
“This is a particularly strong study that looked at risk factors — or individual health — prior to developing COVID and their impact on the likely of recovering from COVID,” she said.
In addition to those with CVD, women and adults with preexisting chronic illnesses took longer to recover.
More than 20% of those in the large, racially and ethnically diverse US population–based study did not recover from COVID in 90 days. The researchers found that the median self-reported time to recovery from acute infection was 20 days.
While women and those with chronic illness had a higher risk for long COVID, vaccination and infection with the Omicron variant wave were associated with shorter recovery times.
These findings make sense, said Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care System and clinical epidemiologist at Washington University in St. Louis, Missouri.
“We also see that COVID-19 can lead to new-onset cardiovascular disease,” said Al-Aly, who was not involved in the study. “There is clearly a (link) between COVID and cardiovascular disease. These two seem to be intimately intertwined. In my view, this emphasizes the importance of targeting these individuals for vaccination and potentially antivirals (when they get infected) to help reduce their risk of adverse events and ameliorate their chance of full and fast recovery.”
The study used data from the Collaborative Cohort of Cohorts for COVID-19 Research. The long list of researchers contributing to this study includes epidemiologists, biostatisticians, neurologists, pulmonologists, and cardiologists. The data come from a list of cohorts like the Framingham Heart Study, which identified key risk factors for CVD, including cholesterol levels. Other studies include the Atherosclerosis Risk in Communities study, which began in the mid-1980s. Researchers there recruited a cohort of 15,792 men and women in rural North Carolina and Mississippi and suburban Minneapolis. They enrolled a high number of African American participants, who have been underrepresented in past studies. Other cohorts focused on young adults with CVD and Hispanics, while another focused on people with chronic obstructive pulmonary disease.
Lead author Elizabeth C. Oelsner, MD, of Columbia University Irving Medical Center in New York City, said she was not surprised by the CVD-long COVID link.
“We were aware that individuals with CVD were at higher risk of a more severe acute infection,” she said. “We were also seeing evidence that long and severe infection led to persistent symptoms.”
Oelsner noted that many patients still take more than 3 months to recover, even during the Omicron wave.
“While that has improved over the course of the pandemic, many individuals are taking a very long time to recover, and that can have a huge burden on the patient,” she said.
She encourages healthcare providers to tell patients at higher risk to take steps to avoid the virus, including vaccination and boosters.
A version of this article first appeared on Medscape.com.
Cold or Flu Virus May Trigger Relapse of Long COVID
researchers have found.
In some cases, they may be experiencing what researchers call viral interference, something also experienced by people with HIV and other infections associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Clinical studies on the issue are limited, but patients, doctors, and researchers report many people who previously had long COVID have developed recurring symptoms after consequent viral infections.
Viral persistence — where bits of virus linger in the body — and viral reactivation remain two of the leading suspects for Yale researchers. Viral activation occurs when the immune system responds to an infection by triggering a dormant virus.
Anecdotally, these flare-ups occur more commonly in patients with long COVID with autonomic dysfunction — severe dizziness when standing up — and other symptoms of ME/CFS, said Alba Azola, MD, a Johns Hopkins Medicine rehabilitation specialist in Baltimore, Maryland, who works with patients with long COVID and other “fatiguing illnesses.”
At last count, about 18% of those surveyed by the Centers for Disease Control and Prevention said they had experienced long COVID. Nearly 60% of those surveyed said they had contracted COVID-19 at least once.
Dr. Azola said that very afternoon she had seen a patient with the flu and a recurrence of previous long COVID symptoms. Not much data exist about cases like this.
“I can’t say there is a specific study looking at this, but anecdotally, we see it all the time,” Dr. Azola said.
She has not seen completely different symptoms; more commonly, she sees a flare-up of previously existing symptoms.
David Putrino, PhD, is director of rehabilitation innovation for the Mount Sinai Health System in New York City. He treats and studies patients with long COVID and echoes what others have seen.
Patients can “recover (or feel recovered) from long COVID until the next immune challenge — another COVID infection, flu infection, pregnancy, food poisoning (all examples we have seen in the clinic) — and experience a significant flare-up of your initial COVID infection,” he said.
“Relapse” is a better term than reinfection, said Jeffrey Parsonnet, MD, an infectious diseases specialist and director of the Dartmouth Hitchcock Post-Acute COVID Syndrome Clinic, Lebanon, New Hampshire.
“We see patients who had COVID-19 followed by long COVID who then get better — either completely or mostly better. Then they’ve gotten COVID again, and this is followed by recurrence of long COVID symptoms,” he said.
“Every patient looks different in terms of what gets better and how quickly. And again, some patients are not better (or even minimally so) after a couple of years,” he said.
Patients Tell Their Stories
On the COVID-19 Long Haulers Support Facebook group, many of the 100,000 followers ask about viral reactivation. Delainne “Laney” Bond, RN, who has battled postinfection chronic illness herself, runs the Facebook group. From what she sees, “each time a person is infected or reinfected with SARS-CoV-2, they have a risk of developing long COVID or experiencing worse long COVID. Multiple infections can lead to progressive health complications.”
The posts on her site include many queries about reinfections. A post from December included nearly 80 comments with people describing the full range of symptoms. Some stories relayed how the reinfection symptoms were short lived. Some report returning to their baseline — not completely symptom free but improved.
Doctors and patients say long COVID comes and goes — relapsing-remitting — and shares many features with other complex multisystem chronic conditions, according to a new National Academy of Sciences report. Those include ME/CFS and the Epstein-Barr virus.
As far as how to treat, Dr. Putrino is one of the clinical researchers testing antivirals. One is Paxlovid; the others are drugs developed for the AIDS virus.
“A plausible mechanism for long COVID is persistence of the SARS-CoV-2 virus in tissue and/or the reactivation of latent pathogens,” according to an explanation of the research on the PolyBio Institute website, which is involved with the research.
In the meantime, “long COVID appears to be a chronic condition with few patients achieving full remission,” according to a new Academy of Sciences report. The report concludes that long COVID recovery can plateau at 6-12 months. They also note that 18%-22% of people who have long COVID symptoms at 5 months are still ill at 1 year.
A version of this article first appeared on Medscape.com.
researchers have found.
In some cases, they may be experiencing what researchers call viral interference, something also experienced by people with HIV and other infections associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Clinical studies on the issue are limited, but patients, doctors, and researchers report many people who previously had long COVID have developed recurring symptoms after consequent viral infections.
Viral persistence — where bits of virus linger in the body — and viral reactivation remain two of the leading suspects for Yale researchers. Viral activation occurs when the immune system responds to an infection by triggering a dormant virus.
Anecdotally, these flare-ups occur more commonly in patients with long COVID with autonomic dysfunction — severe dizziness when standing up — and other symptoms of ME/CFS, said Alba Azola, MD, a Johns Hopkins Medicine rehabilitation specialist in Baltimore, Maryland, who works with patients with long COVID and other “fatiguing illnesses.”
At last count, about 18% of those surveyed by the Centers for Disease Control and Prevention said they had experienced long COVID. Nearly 60% of those surveyed said they had contracted COVID-19 at least once.
Dr. Azola said that very afternoon she had seen a patient with the flu and a recurrence of previous long COVID symptoms. Not much data exist about cases like this.
“I can’t say there is a specific study looking at this, but anecdotally, we see it all the time,” Dr. Azola said.
She has not seen completely different symptoms; more commonly, she sees a flare-up of previously existing symptoms.
David Putrino, PhD, is director of rehabilitation innovation for the Mount Sinai Health System in New York City. He treats and studies patients with long COVID and echoes what others have seen.
Patients can “recover (or feel recovered) from long COVID until the next immune challenge — another COVID infection, flu infection, pregnancy, food poisoning (all examples we have seen in the clinic) — and experience a significant flare-up of your initial COVID infection,” he said.
“Relapse” is a better term than reinfection, said Jeffrey Parsonnet, MD, an infectious diseases specialist and director of the Dartmouth Hitchcock Post-Acute COVID Syndrome Clinic, Lebanon, New Hampshire.
“We see patients who had COVID-19 followed by long COVID who then get better — either completely or mostly better. Then they’ve gotten COVID again, and this is followed by recurrence of long COVID symptoms,” he said.
“Every patient looks different in terms of what gets better and how quickly. And again, some patients are not better (or even minimally so) after a couple of years,” he said.
Patients Tell Their Stories
On the COVID-19 Long Haulers Support Facebook group, many of the 100,000 followers ask about viral reactivation. Delainne “Laney” Bond, RN, who has battled postinfection chronic illness herself, runs the Facebook group. From what she sees, “each time a person is infected or reinfected with SARS-CoV-2, they have a risk of developing long COVID or experiencing worse long COVID. Multiple infections can lead to progressive health complications.”
The posts on her site include many queries about reinfections. A post from December included nearly 80 comments with people describing the full range of symptoms. Some stories relayed how the reinfection symptoms were short lived. Some report returning to their baseline — not completely symptom free but improved.
Doctors and patients say long COVID comes and goes — relapsing-remitting — and shares many features with other complex multisystem chronic conditions, according to a new National Academy of Sciences report. Those include ME/CFS and the Epstein-Barr virus.
As far as how to treat, Dr. Putrino is one of the clinical researchers testing antivirals. One is Paxlovid; the others are drugs developed for the AIDS virus.
“A plausible mechanism for long COVID is persistence of the SARS-CoV-2 virus in tissue and/or the reactivation of latent pathogens,” according to an explanation of the research on the PolyBio Institute website, which is involved with the research.
In the meantime, “long COVID appears to be a chronic condition with few patients achieving full remission,” according to a new Academy of Sciences report. The report concludes that long COVID recovery can plateau at 6-12 months. They also note that 18%-22% of people who have long COVID symptoms at 5 months are still ill at 1 year.
A version of this article first appeared on Medscape.com.
researchers have found.
In some cases, they may be experiencing what researchers call viral interference, something also experienced by people with HIV and other infections associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Clinical studies on the issue are limited, but patients, doctors, and researchers report many people who previously had long COVID have developed recurring symptoms after consequent viral infections.
Viral persistence — where bits of virus linger in the body — and viral reactivation remain two of the leading suspects for Yale researchers. Viral activation occurs when the immune system responds to an infection by triggering a dormant virus.
Anecdotally, these flare-ups occur more commonly in patients with long COVID with autonomic dysfunction — severe dizziness when standing up — and other symptoms of ME/CFS, said Alba Azola, MD, a Johns Hopkins Medicine rehabilitation specialist in Baltimore, Maryland, who works with patients with long COVID and other “fatiguing illnesses.”
At last count, about 18% of those surveyed by the Centers for Disease Control and Prevention said they had experienced long COVID. Nearly 60% of those surveyed said they had contracted COVID-19 at least once.
Dr. Azola said that very afternoon she had seen a patient with the flu and a recurrence of previous long COVID symptoms. Not much data exist about cases like this.
“I can’t say there is a specific study looking at this, but anecdotally, we see it all the time,” Dr. Azola said.
She has not seen completely different symptoms; more commonly, she sees a flare-up of previously existing symptoms.
David Putrino, PhD, is director of rehabilitation innovation for the Mount Sinai Health System in New York City. He treats and studies patients with long COVID and echoes what others have seen.
Patients can “recover (or feel recovered) from long COVID until the next immune challenge — another COVID infection, flu infection, pregnancy, food poisoning (all examples we have seen in the clinic) — and experience a significant flare-up of your initial COVID infection,” he said.
“Relapse” is a better term than reinfection, said Jeffrey Parsonnet, MD, an infectious diseases specialist and director of the Dartmouth Hitchcock Post-Acute COVID Syndrome Clinic, Lebanon, New Hampshire.
“We see patients who had COVID-19 followed by long COVID who then get better — either completely or mostly better. Then they’ve gotten COVID again, and this is followed by recurrence of long COVID symptoms,” he said.
“Every patient looks different in terms of what gets better and how quickly. And again, some patients are not better (or even minimally so) after a couple of years,” he said.
Patients Tell Their Stories
On the COVID-19 Long Haulers Support Facebook group, many of the 100,000 followers ask about viral reactivation. Delainne “Laney” Bond, RN, who has battled postinfection chronic illness herself, runs the Facebook group. From what she sees, “each time a person is infected or reinfected with SARS-CoV-2, they have a risk of developing long COVID or experiencing worse long COVID. Multiple infections can lead to progressive health complications.”
The posts on her site include many queries about reinfections. A post from December included nearly 80 comments with people describing the full range of symptoms. Some stories relayed how the reinfection symptoms were short lived. Some report returning to their baseline — not completely symptom free but improved.
Doctors and patients say long COVID comes and goes — relapsing-remitting — and shares many features with other complex multisystem chronic conditions, according to a new National Academy of Sciences report. Those include ME/CFS and the Epstein-Barr virus.
As far as how to treat, Dr. Putrino is one of the clinical researchers testing antivirals. One is Paxlovid; the others are drugs developed for the AIDS virus.
“A plausible mechanism for long COVID is persistence of the SARS-CoV-2 virus in tissue and/or the reactivation of latent pathogens,” according to an explanation of the research on the PolyBio Institute website, which is involved with the research.
In the meantime, “long COVID appears to be a chronic condition with few patients achieving full remission,” according to a new Academy of Sciences report. The report concludes that long COVID recovery can plateau at 6-12 months. They also note that 18%-22% of people who have long COVID symptoms at 5 months are still ill at 1 year.
A version of this article first appeared on Medscape.com.
New Data: Long COVID Cases Surge
A sudden rise in long COVID in January has persisted into a second month. About 17.6% of those surveyed by the Census Bureau in January said they have experienced long COVID. The number for February was 17.4.
Compare these new numbers to October 2023 and earlier, when long COVID numbers hovered between 14% and 15% of the US adult population as far back as June 2022.
The Census Bureau and the Centers for Disease Control and Prevention (CDC) regularly query about 70,000 people as part of its ongoing Pulse Survey.
It’s Not Just the Federal Numbers
Independently, advocates, researchers, and clinicians also reported seeing an increase in the number of people who have developed long COVID after a second or third infection.
John Baratta, MD, who runs the COVID Recovery Clinic at the University of North Carolina, said the increase is related to a higher rate of acute cases in the fall and winter of 2023.
In January, the percentage of North Carolinians reporting ever having had long COVD jumped from 12.5% to 20.2% in January and fell to 16.8% in February.
At the same time, many cases are either undetected or unreported by people who tested positive for COVID-19 at home or are not aware they have had it.
Hannah Davis, a member of the Patient-Led Research Collaborative, also linked the increase in long COVID to the wave of new infections at the end of 2023 and the start of 2024.
“It’s absolutely real,” she said via email. “There have been many new cases in the past few months, and we see those new folks in our communities as well.”
Wastewater Remains the Best Indicator
“This results in many cases of COVID flying under the radar,” Dr. Baratta said. “However, we do know from the wastewater monitoring that there was a pretty substantial rise.”
Testing wastewater for COVID levels is becoming one of the most reliable measures of estimating infection, he said. Nationally, viral measure of wastewater followed a similar path: The viral rate started creeping up in October and peaked on December 30, according to CDC measures.
RNA extracted from concentrated wastewater samples offer a good measure of SARS-CoV-2 in the community. In North Carolina and elsewhere, the state measures the virus by calculating gene copies in wastewater per capita — how many for each resident. For most of 2023, North Carolina reported fewer than 10 million viral gene copies per state resident. In late July, that number shot up to 25 million and reached 71 million per capita in March 2023 before starting to go down.
Repeat Infections, Vaccine Apathy Driving Numbers
Dr. Baratta said COVID remains a problem in rural areas. In Maine, wastewater virus counts have been much higher than the national average. There, the percentage of people who reported currently experiencing long COVID rose from 5.7% in October to 9.2% in January. The percentage reporting ever experiencing long COVID rose from 13.8% to 21% in that period.
Other factors play a role. Dr. Baratta said he is seeing patients with long COVID who have refused the vaccine or developed long COVID after a second or third infection.
He said he thinks that attitudes toward the pandemic have resulted in relaxed protection and prevention efforts.
“There is low booster vaccination rate and additional masking is utilized less that before,” he said. About 20% of the population has received the latest vaccine booster, according to the Kaiser Family Foundation.
The increase in long COVID has many causes including “infection, reinfection (eg, people getting COVID after a second, third, or fourth infection), low vaccination rates, waning immunity, and decline in the use of antivirals (such as Paxlovid),” said Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care and clinical epidemiologist at Washington University in St. Louis, St. Louis, Missouri.
“All of these could contribute to the rise in burden of long COVID,” he said.
Not all states reported an increase. Massachusetts and Hawaii saw long COVD rates drop slightly, according to the CDC.
A version of this article appeared on Medscape.com.
A sudden rise in long COVID in January has persisted into a second month. About 17.6% of those surveyed by the Census Bureau in January said they have experienced long COVID. The number for February was 17.4.
Compare these new numbers to October 2023 and earlier, when long COVID numbers hovered between 14% and 15% of the US adult population as far back as June 2022.
The Census Bureau and the Centers for Disease Control and Prevention (CDC) regularly query about 70,000 people as part of its ongoing Pulse Survey.
It’s Not Just the Federal Numbers
Independently, advocates, researchers, and clinicians also reported seeing an increase in the number of people who have developed long COVID after a second or third infection.
John Baratta, MD, who runs the COVID Recovery Clinic at the University of North Carolina, said the increase is related to a higher rate of acute cases in the fall and winter of 2023.
In January, the percentage of North Carolinians reporting ever having had long COVD jumped from 12.5% to 20.2% in January and fell to 16.8% in February.
At the same time, many cases are either undetected or unreported by people who tested positive for COVID-19 at home or are not aware they have had it.
Hannah Davis, a member of the Patient-Led Research Collaborative, also linked the increase in long COVID to the wave of new infections at the end of 2023 and the start of 2024.
“It’s absolutely real,” she said via email. “There have been many new cases in the past few months, and we see those new folks in our communities as well.”
Wastewater Remains the Best Indicator
“This results in many cases of COVID flying under the radar,” Dr. Baratta said. “However, we do know from the wastewater monitoring that there was a pretty substantial rise.”
Testing wastewater for COVID levels is becoming one of the most reliable measures of estimating infection, he said. Nationally, viral measure of wastewater followed a similar path: The viral rate started creeping up in October and peaked on December 30, according to CDC measures.
RNA extracted from concentrated wastewater samples offer a good measure of SARS-CoV-2 in the community. In North Carolina and elsewhere, the state measures the virus by calculating gene copies in wastewater per capita — how many for each resident. For most of 2023, North Carolina reported fewer than 10 million viral gene copies per state resident. In late July, that number shot up to 25 million and reached 71 million per capita in March 2023 before starting to go down.
Repeat Infections, Vaccine Apathy Driving Numbers
Dr. Baratta said COVID remains a problem in rural areas. In Maine, wastewater virus counts have been much higher than the national average. There, the percentage of people who reported currently experiencing long COVID rose from 5.7% in October to 9.2% in January. The percentage reporting ever experiencing long COVID rose from 13.8% to 21% in that period.
Other factors play a role. Dr. Baratta said he is seeing patients with long COVID who have refused the vaccine or developed long COVID after a second or third infection.
He said he thinks that attitudes toward the pandemic have resulted in relaxed protection and prevention efforts.
“There is low booster vaccination rate and additional masking is utilized less that before,” he said. About 20% of the population has received the latest vaccine booster, according to the Kaiser Family Foundation.
The increase in long COVID has many causes including “infection, reinfection (eg, people getting COVID after a second, third, or fourth infection), low vaccination rates, waning immunity, and decline in the use of antivirals (such as Paxlovid),” said Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care and clinical epidemiologist at Washington University in St. Louis, St. Louis, Missouri.
“All of these could contribute to the rise in burden of long COVID,” he said.
Not all states reported an increase. Massachusetts and Hawaii saw long COVD rates drop slightly, according to the CDC.
A version of this article appeared on Medscape.com.
A sudden rise in long COVID in January has persisted into a second month. About 17.6% of those surveyed by the Census Bureau in January said they have experienced long COVID. The number for February was 17.4.
Compare these new numbers to October 2023 and earlier, when long COVID numbers hovered between 14% and 15% of the US adult population as far back as June 2022.
The Census Bureau and the Centers for Disease Control and Prevention (CDC) regularly query about 70,000 people as part of its ongoing Pulse Survey.
It’s Not Just the Federal Numbers
Independently, advocates, researchers, and clinicians also reported seeing an increase in the number of people who have developed long COVID after a second or third infection.
John Baratta, MD, who runs the COVID Recovery Clinic at the University of North Carolina, said the increase is related to a higher rate of acute cases in the fall and winter of 2023.
In January, the percentage of North Carolinians reporting ever having had long COVD jumped from 12.5% to 20.2% in January and fell to 16.8% in February.
At the same time, many cases are either undetected or unreported by people who tested positive for COVID-19 at home or are not aware they have had it.
Hannah Davis, a member of the Patient-Led Research Collaborative, also linked the increase in long COVID to the wave of new infections at the end of 2023 and the start of 2024.
“It’s absolutely real,” she said via email. “There have been many new cases in the past few months, and we see those new folks in our communities as well.”
Wastewater Remains the Best Indicator
“This results in many cases of COVID flying under the radar,” Dr. Baratta said. “However, we do know from the wastewater monitoring that there was a pretty substantial rise.”
Testing wastewater for COVID levels is becoming one of the most reliable measures of estimating infection, he said. Nationally, viral measure of wastewater followed a similar path: The viral rate started creeping up in October and peaked on December 30, according to CDC measures.
RNA extracted from concentrated wastewater samples offer a good measure of SARS-CoV-2 in the community. In North Carolina and elsewhere, the state measures the virus by calculating gene copies in wastewater per capita — how many for each resident. For most of 2023, North Carolina reported fewer than 10 million viral gene copies per state resident. In late July, that number shot up to 25 million and reached 71 million per capita in March 2023 before starting to go down.
Repeat Infections, Vaccine Apathy Driving Numbers
Dr. Baratta said COVID remains a problem in rural areas. In Maine, wastewater virus counts have been much higher than the national average. There, the percentage of people who reported currently experiencing long COVID rose from 5.7% in October to 9.2% in January. The percentage reporting ever experiencing long COVID rose from 13.8% to 21% in that period.
Other factors play a role. Dr. Baratta said he is seeing patients with long COVID who have refused the vaccine or developed long COVID after a second or third infection.
He said he thinks that attitudes toward the pandemic have resulted in relaxed protection and prevention efforts.
“There is low booster vaccination rate and additional masking is utilized less that before,” he said. About 20% of the population has received the latest vaccine booster, according to the Kaiser Family Foundation.
The increase in long COVID has many causes including “infection, reinfection (eg, people getting COVID after a second, third, or fourth infection), low vaccination rates, waning immunity, and decline in the use of antivirals (such as Paxlovid),” said Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care and clinical epidemiologist at Washington University in St. Louis, St. Louis, Missouri.
“All of these could contribute to the rise in burden of long COVID,” he said.
Not all states reported an increase. Massachusetts and Hawaii saw long COVD rates drop slightly, according to the CDC.
A version of this article appeared on Medscape.com.
Study IDs Immune Abnormality Possibly Causing Long COVID
Swiss scientists have identified immune system abnormalities in patients with long COVID that might open the door to new diagnostic tests and treatments.
The researchers found that a group of proteins in the blood that are part of the body’s immune response called the “complement system” are not working properly in patients with long COVID.
Blood samples turned up important differences between those who recovered from COVID and those who did not. These differences might be used as biomarkers to diagnose long COVID and might even point the way to new treatments for the condition, the researchers said.
By testing for 6500 blood proteins in about 300 patients, the Swiss researchers found that dysfunctional complement system proteins could possibly explain fatigue and “smoldering inflammation,” said Onur Boyman, MD, a professor of immunology from University Hospital Zurich in Zurich, Switzerland.
Long COVID has been linked to hundreds of symptoms including brain fog, chronic fatigue, pain, and digestive issues. Various factors drive the condition and likely work with one another other, said David Putrino, PhD, from the Icahn School of Medicine at Mount Sinai in New York City. The Swiss study is useful because “we’re trying to best understand how we can explain all of this far-reaching pathobiology,” he said.
Testing Across Continents
Dr. Boyman’s team collected blood samples from people with COVID in Europe and New York and tracked them. They compared those who developed long COVID with those who did not. One protein that was most unique to patients with long COVID is a blood complement that activates the immune system, Dr. Boyman said. But in people with long COVID, the immune response stays activated after the virus is gone. He described the response as “smoldering inflammation” in multiple organs, including the lungs and the gastrointestinal system.
The complement system also plays a role in clearing the body of dead cells. If the cells “lie around too much,” they can trigger an immune response, he said.
That may explain exercise intolerance in people with long COVID, Dr. Boyman said. Some people with long COVID have inflammation in the epithelium — the inner layer of their blood vessels. This would make it harder for the circulatory systems to recover from exercise, Dr. Boyman said.
“We think this regulated complement system is actually quite a central piece of the puzzle,” he said.
The Microclot Connection
The findings also support past research linking blood clots to long COVID. He suggested that clinicians and researchers consider testing drugs that regulate or inhibit the complementary system as a treatment of long COVID. Dr. Boyman said they are currently used for rare immune diseases.
Resia Pretorius, PhD, a professor of physiological sciences at Stellenbosch University in Stellenbosch, South Africa, said scientists studying the role of microclots in patients with long COVID often see complementary proteins inside the clots, so it has already been associated with long COVID. But she likened this clotting process to a garbage can that “just rolls along and collects everything that gets in its way. I think they are actively driving inflammation and disease.”
One factor complicating long COVID diagnosis and treatment is that it is a complex condition that involves multiple organ systems. That’s why the latest research suggests an underlying driver for the multiple symptoms of long COVID, Dr. Putrino said.
“Not every person has every symptom; not every person has every organ system affected,” Dr. Putrino said. “Whatever is happening is decided across the whole body.”
Research Offers New Direction
The Swiss paper contributes to the effort to identify systemic issues contributing to long COVID. It gives researchers one more thing to test for and link to specific, long COVID symptoms, opening the door to new treatments, Dr. Putrino said.
He doesn’t think the study supports treating the complement dysfunction if researchers don’t know what’s driving it. It may be complicated by the body’s failure to clear the virus completely, he said.
Dr. Pretorius recommended doctors test patients with long COVID for specific symptoms that may be treated using existing therapies. “If you think your patient had vascular pathology, you can test for it,” she said.
Some patients have found certain supplements and over-the-counter products helpful, she said. Among them: Coenzyme Q 10 and clot-busters such as streptokinase and Nattokinase (though she noted some doctors may not be comfortable with supplements).
“It’s the only thing we have until we’ve got trials,” she said.
Dr. Putrino said more research is needed to identify potential root causes and symptoms. A common refrain, but the only thing that will lead to specific treatments.
A version of this article appeared on Medscape.com.
Swiss scientists have identified immune system abnormalities in patients with long COVID that might open the door to new diagnostic tests and treatments.
The researchers found that a group of proteins in the blood that are part of the body’s immune response called the “complement system” are not working properly in patients with long COVID.
Blood samples turned up important differences between those who recovered from COVID and those who did not. These differences might be used as biomarkers to diagnose long COVID and might even point the way to new treatments for the condition, the researchers said.
By testing for 6500 blood proteins in about 300 patients, the Swiss researchers found that dysfunctional complement system proteins could possibly explain fatigue and “smoldering inflammation,” said Onur Boyman, MD, a professor of immunology from University Hospital Zurich in Zurich, Switzerland.
Long COVID has been linked to hundreds of symptoms including brain fog, chronic fatigue, pain, and digestive issues. Various factors drive the condition and likely work with one another other, said David Putrino, PhD, from the Icahn School of Medicine at Mount Sinai in New York City. The Swiss study is useful because “we’re trying to best understand how we can explain all of this far-reaching pathobiology,” he said.
Testing Across Continents
Dr. Boyman’s team collected blood samples from people with COVID in Europe and New York and tracked them. They compared those who developed long COVID with those who did not. One protein that was most unique to patients with long COVID is a blood complement that activates the immune system, Dr. Boyman said. But in people with long COVID, the immune response stays activated after the virus is gone. He described the response as “smoldering inflammation” in multiple organs, including the lungs and the gastrointestinal system.
The complement system also plays a role in clearing the body of dead cells. If the cells “lie around too much,” they can trigger an immune response, he said.
That may explain exercise intolerance in people with long COVID, Dr. Boyman said. Some people with long COVID have inflammation in the epithelium — the inner layer of their blood vessels. This would make it harder for the circulatory systems to recover from exercise, Dr. Boyman said.
“We think this regulated complement system is actually quite a central piece of the puzzle,” he said.
The Microclot Connection
The findings also support past research linking blood clots to long COVID. He suggested that clinicians and researchers consider testing drugs that regulate or inhibit the complementary system as a treatment of long COVID. Dr. Boyman said they are currently used for rare immune diseases.
Resia Pretorius, PhD, a professor of physiological sciences at Stellenbosch University in Stellenbosch, South Africa, said scientists studying the role of microclots in patients with long COVID often see complementary proteins inside the clots, so it has already been associated with long COVID. But she likened this clotting process to a garbage can that “just rolls along and collects everything that gets in its way. I think they are actively driving inflammation and disease.”
One factor complicating long COVID diagnosis and treatment is that it is a complex condition that involves multiple organ systems. That’s why the latest research suggests an underlying driver for the multiple symptoms of long COVID, Dr. Putrino said.
“Not every person has every symptom; not every person has every organ system affected,” Dr. Putrino said. “Whatever is happening is decided across the whole body.”
Research Offers New Direction
The Swiss paper contributes to the effort to identify systemic issues contributing to long COVID. It gives researchers one more thing to test for and link to specific, long COVID symptoms, opening the door to new treatments, Dr. Putrino said.
He doesn’t think the study supports treating the complement dysfunction if researchers don’t know what’s driving it. It may be complicated by the body’s failure to clear the virus completely, he said.
Dr. Pretorius recommended doctors test patients with long COVID for specific symptoms that may be treated using existing therapies. “If you think your patient had vascular pathology, you can test for it,” she said.
Some patients have found certain supplements and over-the-counter products helpful, she said. Among them: Coenzyme Q 10 and clot-busters such as streptokinase and Nattokinase (though she noted some doctors may not be comfortable with supplements).
“It’s the only thing we have until we’ve got trials,” she said.
Dr. Putrino said more research is needed to identify potential root causes and symptoms. A common refrain, but the only thing that will lead to specific treatments.
A version of this article appeared on Medscape.com.
Swiss scientists have identified immune system abnormalities in patients with long COVID that might open the door to new diagnostic tests and treatments.
The researchers found that a group of proteins in the blood that are part of the body’s immune response called the “complement system” are not working properly in patients with long COVID.
Blood samples turned up important differences between those who recovered from COVID and those who did not. These differences might be used as biomarkers to diagnose long COVID and might even point the way to new treatments for the condition, the researchers said.
By testing for 6500 blood proteins in about 300 patients, the Swiss researchers found that dysfunctional complement system proteins could possibly explain fatigue and “smoldering inflammation,” said Onur Boyman, MD, a professor of immunology from University Hospital Zurich in Zurich, Switzerland.
Long COVID has been linked to hundreds of symptoms including brain fog, chronic fatigue, pain, and digestive issues. Various factors drive the condition and likely work with one another other, said David Putrino, PhD, from the Icahn School of Medicine at Mount Sinai in New York City. The Swiss study is useful because “we’re trying to best understand how we can explain all of this far-reaching pathobiology,” he said.
Testing Across Continents
Dr. Boyman’s team collected blood samples from people with COVID in Europe and New York and tracked them. They compared those who developed long COVID with those who did not. One protein that was most unique to patients with long COVID is a blood complement that activates the immune system, Dr. Boyman said. But in people with long COVID, the immune response stays activated after the virus is gone. He described the response as “smoldering inflammation” in multiple organs, including the lungs and the gastrointestinal system.
The complement system also plays a role in clearing the body of dead cells. If the cells “lie around too much,” they can trigger an immune response, he said.
That may explain exercise intolerance in people with long COVID, Dr. Boyman said. Some people with long COVID have inflammation in the epithelium — the inner layer of their blood vessels. This would make it harder for the circulatory systems to recover from exercise, Dr. Boyman said.
“We think this regulated complement system is actually quite a central piece of the puzzle,” he said.
The Microclot Connection
The findings also support past research linking blood clots to long COVID. He suggested that clinicians and researchers consider testing drugs that regulate or inhibit the complementary system as a treatment of long COVID. Dr. Boyman said they are currently used for rare immune diseases.
Resia Pretorius, PhD, a professor of physiological sciences at Stellenbosch University in Stellenbosch, South Africa, said scientists studying the role of microclots in patients with long COVID often see complementary proteins inside the clots, so it has already been associated with long COVID. But she likened this clotting process to a garbage can that “just rolls along and collects everything that gets in its way. I think they are actively driving inflammation and disease.”
One factor complicating long COVID diagnosis and treatment is that it is a complex condition that involves multiple organ systems. That’s why the latest research suggests an underlying driver for the multiple symptoms of long COVID, Dr. Putrino said.
“Not every person has every symptom; not every person has every organ system affected,” Dr. Putrino said. “Whatever is happening is decided across the whole body.”
Research Offers New Direction
The Swiss paper contributes to the effort to identify systemic issues contributing to long COVID. It gives researchers one more thing to test for and link to specific, long COVID symptoms, opening the door to new treatments, Dr. Putrino said.
He doesn’t think the study supports treating the complement dysfunction if researchers don’t know what’s driving it. It may be complicated by the body’s failure to clear the virus completely, he said.
Dr. Pretorius recommended doctors test patients with long COVID for specific symptoms that may be treated using existing therapies. “If you think your patient had vascular pathology, you can test for it,” she said.
Some patients have found certain supplements and over-the-counter products helpful, she said. Among them: Coenzyme Q 10 and clot-busters such as streptokinase and Nattokinase (though she noted some doctors may not be comfortable with supplements).
“It’s the only thing we have until we’ve got trials,” she said.
Dr. Putrino said more research is needed to identify potential root causes and symptoms. A common refrain, but the only thing that will lead to specific treatments.
A version of this article appeared on Medscape.com.
Why Are Women More Likely to Get Long COVID?
Annette Gillaspie, a nurse in a small Oregon hospital, hoped she would be back working with patients by now. She contracted COVID-19 on the job early in the pandemic and ended up with long COVID.
After recovering a bit, her fatigue and dizziness returned, and today she is still working a desk job. She has also experienced more severe menstrual periods than before she had COVID.
“Being a female with long COVID definitely does add to the roller-coaster effect of symptoms,” Ms. Gillaspie said.
reported by the Centers for Disease Control and Prevention (CDC). Researchers are trying to determine why, what causes the gender disparity, and how best to treat it.
Scientists are also starting to look at the impact of long COVID on female reproductive health, including menstruation, pregnancy, and menopause.
Sex differences are common in infection-associated illnesses, said Beth Pollack, MS, a research scientist specializing in long COVID in the Massachusetts Institute of Technology’s Department of Biological Engineering, Cambridge, Massachusetts. “It informs research priorities and the lens with which we understand long COVID.”
For example, reproductive health issues for women, such as puberty, pregnancy, and menopause, can alter the course of illness in a subset of women in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS), a condition that can cause dizziness and worse.
“This suggests that sex hormones may play key roles in immune responses to infections,” Ms. Pollack said.
ME/CFS and a Possible Link to Long COVID in Women
Some of the research into long COVID is being led by teams studying infection-associated chronic illnesses like ME/CFS.
The problem: Advocates say ME/CFS has been under-researched. Poorly understood for years, the condition is one of a handful of chronic illnesses linked to infections, including Lyme disease and now long COVID. Perhaps not coincidently, they are more likely to affect women.
Many of the research findings about long COVID mirror data that emerged in past ME/CFS research, said Jaime Seltzer, the scientific director at #MEAction, Santa Monica, California, an advocacy group. One point in particular: ME/CFS strikes women about twice as much as men, according to the CDC.
Ms. Seltzer said the response to long COVID could be much further ahead if the research community acknowledged the work done over the years on ME/CFS. Many of the potential biomarkers and risk factors emerging for long COVID were also suspected in ME/CFS, but not thoroughly studied, she said.
She also said not enough work has been done to unravel the links between gender and these chronic conditions.
“We’re stuck in this Groundhog Day situation,” she said. “There isn’t any research, so we can’t say anything definitively.”
Some New Research, Some New Clues
Scientists like Ms. Pollack are slowly making inroads. She was lead author on a 2023 review investigating the impact of long COVID on female reproductive health. The paper highlights long COVID links to ME/CFS, POTS, and Ehlers-Danlos syndrome (EDS), as well as a resulting laundry list of female reproductive health issues. The hope is physicians will examine how the menstrual cycle, pregnancy, and menopause affect symptoms and illness progression of long COVID.
The Tal Research group at MIT (where Ms. Pollack works) has also added long COVID to the list of infection-associated illnesses it studies. The lab is conducting a large study looking into both Lyme disease and long COVID. The goals are to identify biomarkers that can predict who will not recover and to advance available treatments.
Another MIT program, “SEXX + Immunity” holds seminars and networking sessions for scientists looking into the role of female and male biology in immune responses to infection.
Barriers to Progress Remain
On the clinical side, female patients with long COVID also have to deal with a historical bias that still lurks in medicine when it comes to women’s health, said Alba Azola, MD, an assistant professor of physical medicine at Johns Hopkins Medicine, Baltimore, Maryland.
Dr. Azola said she has discovered clinical descriptions of ME/CFE in the literature archives that describe it as “neurasthenia” and dismiss it as psychological.
Patients say that it is still happening, and while it may not be so blunt, “you can read between the lines,” Dr. Azola said.
Dr. Azola, who has worked with long COVID patients and is now seeing people with ME/CFS, said the symptoms of infection-associated chronic illness can mimic menopause, and many of her patients received that misdiagnosis. She recommends that doctors rule out long COVID for women with multiple symptoms before attributing symptoms to menopause.
Seeing that some long COVID patients were developing ME/CFS, staff at the Bateman Horne Center in Salt Lake City, Utah, set up a program for the condition in 2021. They were already treating patients with ME/CFS and what they call “multi-symptom chronic complex diseases.”
Jennifer Bell, a certified nurse practitioner at the center, said she has not seen any patients with ovarian failure but plenty with reproductive health issues.
“There definitely is a hormonal connection, but I don’t think there’s a good understanding about what is happening,” she said.
Most of her patients are female, and the more serious patients tend to go through a worsening of their symptoms in the week prior to getting a period, she said.
One thing Ms. Bell said she’s noticed in the past year is an increase in patients with EDS, which is also more common in women.
Like long COVID, many of the conditions traditionally treated at the center have no cure. But Ms. Bell said the center has developed an expertise in treating post-exertional malaise, a common symptom of long COVID, and keeps up with the literature for treatments to try, like the combination of guanfacine and the antioxidant N-acetyl cysteine to treat brain fog, an approach developed at Yale.
“It’s a very challenging illness to treat,” Ms. Bell said.
Since the emergence of long COVID, researchers have warned that symptoms vary so much from person to person that treatment will need to be targeted.
Ms. Pollack of MIT agrees and sees a big role for personalized medicine.
We need to “identify phenotypes within and across these overlapping and co-occurring illnesses so that we can identify the right therapeutics for each person,” she said.
As for Annette Gillaspie, she still hopes her long COVID will subside so she can get out from behind the desk and return to her normal nursing duties.
“I just got to a point where I realized I’m likely never going to be able to do my job,” she said. “It was incredibly heart breaking, but it’s the reality of long COVID, and I know I’m not the only one to have to step away from a job I loved.”
A version of this article appeared on Medscape.com.
Annette Gillaspie, a nurse in a small Oregon hospital, hoped she would be back working with patients by now. She contracted COVID-19 on the job early in the pandemic and ended up with long COVID.
After recovering a bit, her fatigue and dizziness returned, and today she is still working a desk job. She has also experienced more severe menstrual periods than before she had COVID.
“Being a female with long COVID definitely does add to the roller-coaster effect of symptoms,” Ms. Gillaspie said.
reported by the Centers for Disease Control and Prevention (CDC). Researchers are trying to determine why, what causes the gender disparity, and how best to treat it.
Scientists are also starting to look at the impact of long COVID on female reproductive health, including menstruation, pregnancy, and menopause.
Sex differences are common in infection-associated illnesses, said Beth Pollack, MS, a research scientist specializing in long COVID in the Massachusetts Institute of Technology’s Department of Biological Engineering, Cambridge, Massachusetts. “It informs research priorities and the lens with which we understand long COVID.”
For example, reproductive health issues for women, such as puberty, pregnancy, and menopause, can alter the course of illness in a subset of women in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS), a condition that can cause dizziness and worse.
“This suggests that sex hormones may play key roles in immune responses to infections,” Ms. Pollack said.
ME/CFS and a Possible Link to Long COVID in Women
Some of the research into long COVID is being led by teams studying infection-associated chronic illnesses like ME/CFS.
The problem: Advocates say ME/CFS has been under-researched. Poorly understood for years, the condition is one of a handful of chronic illnesses linked to infections, including Lyme disease and now long COVID. Perhaps not coincidently, they are more likely to affect women.
Many of the research findings about long COVID mirror data that emerged in past ME/CFS research, said Jaime Seltzer, the scientific director at #MEAction, Santa Monica, California, an advocacy group. One point in particular: ME/CFS strikes women about twice as much as men, according to the CDC.
Ms. Seltzer said the response to long COVID could be much further ahead if the research community acknowledged the work done over the years on ME/CFS. Many of the potential biomarkers and risk factors emerging for long COVID were also suspected in ME/CFS, but not thoroughly studied, she said.
She also said not enough work has been done to unravel the links between gender and these chronic conditions.
“We’re stuck in this Groundhog Day situation,” she said. “There isn’t any research, so we can’t say anything definitively.”
Some New Research, Some New Clues
Scientists like Ms. Pollack are slowly making inroads. She was lead author on a 2023 review investigating the impact of long COVID on female reproductive health. The paper highlights long COVID links to ME/CFS, POTS, and Ehlers-Danlos syndrome (EDS), as well as a resulting laundry list of female reproductive health issues. The hope is physicians will examine how the menstrual cycle, pregnancy, and menopause affect symptoms and illness progression of long COVID.
The Tal Research group at MIT (where Ms. Pollack works) has also added long COVID to the list of infection-associated illnesses it studies. The lab is conducting a large study looking into both Lyme disease and long COVID. The goals are to identify biomarkers that can predict who will not recover and to advance available treatments.
Another MIT program, “SEXX + Immunity” holds seminars and networking sessions for scientists looking into the role of female and male biology in immune responses to infection.
Barriers to Progress Remain
On the clinical side, female patients with long COVID also have to deal with a historical bias that still lurks in medicine when it comes to women’s health, said Alba Azola, MD, an assistant professor of physical medicine at Johns Hopkins Medicine, Baltimore, Maryland.
Dr. Azola said she has discovered clinical descriptions of ME/CFE in the literature archives that describe it as “neurasthenia” and dismiss it as psychological.
Patients say that it is still happening, and while it may not be so blunt, “you can read between the lines,” Dr. Azola said.
Dr. Azola, who has worked with long COVID patients and is now seeing people with ME/CFS, said the symptoms of infection-associated chronic illness can mimic menopause, and many of her patients received that misdiagnosis. She recommends that doctors rule out long COVID for women with multiple symptoms before attributing symptoms to menopause.
Seeing that some long COVID patients were developing ME/CFS, staff at the Bateman Horne Center in Salt Lake City, Utah, set up a program for the condition in 2021. They were already treating patients with ME/CFS and what they call “multi-symptom chronic complex diseases.”
Jennifer Bell, a certified nurse practitioner at the center, said she has not seen any patients with ovarian failure but plenty with reproductive health issues.
“There definitely is a hormonal connection, but I don’t think there’s a good understanding about what is happening,” she said.
Most of her patients are female, and the more serious patients tend to go through a worsening of their symptoms in the week prior to getting a period, she said.
One thing Ms. Bell said she’s noticed in the past year is an increase in patients with EDS, which is also more common in women.
Like long COVID, many of the conditions traditionally treated at the center have no cure. But Ms. Bell said the center has developed an expertise in treating post-exertional malaise, a common symptom of long COVID, and keeps up with the literature for treatments to try, like the combination of guanfacine and the antioxidant N-acetyl cysteine to treat brain fog, an approach developed at Yale.
“It’s a very challenging illness to treat,” Ms. Bell said.
Since the emergence of long COVID, researchers have warned that symptoms vary so much from person to person that treatment will need to be targeted.
Ms. Pollack of MIT agrees and sees a big role for personalized medicine.
We need to “identify phenotypes within and across these overlapping and co-occurring illnesses so that we can identify the right therapeutics for each person,” she said.
As for Annette Gillaspie, she still hopes her long COVID will subside so she can get out from behind the desk and return to her normal nursing duties.
“I just got to a point where I realized I’m likely never going to be able to do my job,” she said. “It was incredibly heart breaking, but it’s the reality of long COVID, and I know I’m not the only one to have to step away from a job I loved.”
A version of this article appeared on Medscape.com.
Annette Gillaspie, a nurse in a small Oregon hospital, hoped she would be back working with patients by now. She contracted COVID-19 on the job early in the pandemic and ended up with long COVID.
After recovering a bit, her fatigue and dizziness returned, and today she is still working a desk job. She has also experienced more severe menstrual periods than before she had COVID.
“Being a female with long COVID definitely does add to the roller-coaster effect of symptoms,” Ms. Gillaspie said.
reported by the Centers for Disease Control and Prevention (CDC). Researchers are trying to determine why, what causes the gender disparity, and how best to treat it.
Scientists are also starting to look at the impact of long COVID on female reproductive health, including menstruation, pregnancy, and menopause.
Sex differences are common in infection-associated illnesses, said Beth Pollack, MS, a research scientist specializing in long COVID in the Massachusetts Institute of Technology’s Department of Biological Engineering, Cambridge, Massachusetts. “It informs research priorities and the lens with which we understand long COVID.”
For example, reproductive health issues for women, such as puberty, pregnancy, and menopause, can alter the course of illness in a subset of women in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS), a condition that can cause dizziness and worse.
“This suggests that sex hormones may play key roles in immune responses to infections,” Ms. Pollack said.
ME/CFS and a Possible Link to Long COVID in Women
Some of the research into long COVID is being led by teams studying infection-associated chronic illnesses like ME/CFS.
The problem: Advocates say ME/CFS has been under-researched. Poorly understood for years, the condition is one of a handful of chronic illnesses linked to infections, including Lyme disease and now long COVID. Perhaps not coincidently, they are more likely to affect women.
Many of the research findings about long COVID mirror data that emerged in past ME/CFS research, said Jaime Seltzer, the scientific director at #MEAction, Santa Monica, California, an advocacy group. One point in particular: ME/CFS strikes women about twice as much as men, according to the CDC.
Ms. Seltzer said the response to long COVID could be much further ahead if the research community acknowledged the work done over the years on ME/CFS. Many of the potential biomarkers and risk factors emerging for long COVID were also suspected in ME/CFS, but not thoroughly studied, she said.
She also said not enough work has been done to unravel the links between gender and these chronic conditions.
“We’re stuck in this Groundhog Day situation,” she said. “There isn’t any research, so we can’t say anything definitively.”
Some New Research, Some New Clues
Scientists like Ms. Pollack are slowly making inroads. She was lead author on a 2023 review investigating the impact of long COVID on female reproductive health. The paper highlights long COVID links to ME/CFS, POTS, and Ehlers-Danlos syndrome (EDS), as well as a resulting laundry list of female reproductive health issues. The hope is physicians will examine how the menstrual cycle, pregnancy, and menopause affect symptoms and illness progression of long COVID.
The Tal Research group at MIT (where Ms. Pollack works) has also added long COVID to the list of infection-associated illnesses it studies. The lab is conducting a large study looking into both Lyme disease and long COVID. The goals are to identify biomarkers that can predict who will not recover and to advance available treatments.
Another MIT program, “SEXX + Immunity” holds seminars and networking sessions for scientists looking into the role of female and male biology in immune responses to infection.
Barriers to Progress Remain
On the clinical side, female patients with long COVID also have to deal with a historical bias that still lurks in medicine when it comes to women’s health, said Alba Azola, MD, an assistant professor of physical medicine at Johns Hopkins Medicine, Baltimore, Maryland.
Dr. Azola said she has discovered clinical descriptions of ME/CFE in the literature archives that describe it as “neurasthenia” and dismiss it as psychological.
Patients say that it is still happening, and while it may not be so blunt, “you can read between the lines,” Dr. Azola said.
Dr. Azola, who has worked with long COVID patients and is now seeing people with ME/CFS, said the symptoms of infection-associated chronic illness can mimic menopause, and many of her patients received that misdiagnosis. She recommends that doctors rule out long COVID for women with multiple symptoms before attributing symptoms to menopause.
Seeing that some long COVID patients were developing ME/CFS, staff at the Bateman Horne Center in Salt Lake City, Utah, set up a program for the condition in 2021. They were already treating patients with ME/CFS and what they call “multi-symptom chronic complex diseases.”
Jennifer Bell, a certified nurse practitioner at the center, said she has not seen any patients with ovarian failure but plenty with reproductive health issues.
“There definitely is a hormonal connection, but I don’t think there’s a good understanding about what is happening,” she said.
Most of her patients are female, and the more serious patients tend to go through a worsening of their symptoms in the week prior to getting a period, she said.
One thing Ms. Bell said she’s noticed in the past year is an increase in patients with EDS, which is also more common in women.
Like long COVID, many of the conditions traditionally treated at the center have no cure. But Ms. Bell said the center has developed an expertise in treating post-exertional malaise, a common symptom of long COVID, and keeps up with the literature for treatments to try, like the combination of guanfacine and the antioxidant N-acetyl cysteine to treat brain fog, an approach developed at Yale.
“It’s a very challenging illness to treat,” Ms. Bell said.
Since the emergence of long COVID, researchers have warned that symptoms vary so much from person to person that treatment will need to be targeted.
Ms. Pollack of MIT agrees and sees a big role for personalized medicine.
We need to “identify phenotypes within and across these overlapping and co-occurring illnesses so that we can identify the right therapeutics for each person,” she said.
As for Annette Gillaspie, she still hopes her long COVID will subside so she can get out from behind the desk and return to her normal nursing duties.
“I just got to a point where I realized I’m likely never going to be able to do my job,” she said. “It was incredibly heart breaking, but it’s the reality of long COVID, and I know I’m not the only one to have to step away from a job I loved.”
A version of this article appeared on Medscape.com.
Second infection hikes long COVID risk: Expert Q&A
Those are two of the most striking findings of a comprehensive new research study of 138,000 veterans.
Lead researcher Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care and clinical epidemiologist at Washington University in St. Louis, spoke with this news organization about his team’s findings, what we know – and don’t – about long COVID, and what it means for physicians treating patients with the condition.
Excerpts of the interview follow.
Your research concluded that for those infected early in the pandemic, some long COVID symptoms declined over 2 years, but some did not. You have also concluded that long COVID is a chronic disease. Why?
We’ve been in this journey a little bit more than three and a half years. Some patients do experience some recovery. But that’s not the norm. Most people do not really fully recover. The health trajectory for people with long COVID is really very heterogeneous. There is no one-size-fits-all. There’s really no one line that I could give you that could cover all your patients. But it is very, very, very clear that a bunch of them experienced long COVID for sure; that’s really happening.
It happened in the pre-Delta era and in the Delta era, and with Omicron subvariants, even now. There are people who think, “This is a nothing-burger anymore,” or “It’s not an issue anymore.” It’s still happening with the current variants. Vaccines do reduce risk for long COVID, but do not completely eliminate the risk for long COVID.
You work with patients with long COVID in the clinic and also analyze data from thousands more. If long COVID does not go away, what should doctors look for in everyday practice that will help them recognize and help patients with long COVID?
Long COVID is not uncommon. We see it in the clinic in large numbers. Whatever clinic you’re running – if you’re running a cardiology clinic, or a nephrology clinic, or diabetes, or primary care – probably some of your people have it. You may not know about it. They may not tell you about it. You may not recognize it.
Not all long COVID is the same, and that’s really what makes it complex and makes it really hard to deal with in the clinic. But that’s the reality that we’re all dealing with. And it’s multisystemic; it’s not like it affects the heart only, the brain only, or the autonomic nervous system only. It does not behave in the same way in different individuals – they may have different manifestations, various health trajectories, and different outcomes. It’s important for doctors to get up to speed on long COVID as a multisystem illness.
Management at this point is really managing the symptoms. We don’t have a treatment for it; we don’t have a cure for it.
Some patients experience what you’ve described as partial recovery. What does that look like?
Some individuals do experience some recovery over time, but for most individuals, the recovery is long and arduous. Long COVID can last with them for many years. Some people may come back to the clinic and say, “I’m doing better,” but if you really flesh it out and dig deeper, they didn’t do better; they adjusted to a new baseline. They used to walk the dog three to four blocks, and now they walk the dog only half a block. They used to do an activity with their partner every Saturday or Sunday, and now they do half of that.
If you’re a physician, a primary care provider, or any other provider who is dealing with a patient with long COVID, know that this is really happening. It can happen even in vaccinated individuals. The presentation is heterogeneous. Some people may present to you with and say. “Well, before I had COVID I was mentally sharp and now having I’m having difficulty with memory, etc.” It can sometimes present as fatigue or postexertional malaise.
In some instances, it can present as sleep problems. It can present as what we call postural orthostatic tachycardia syndrome (POTS). Those people get a significant increase in heart rate with postural changes.
What the most important thing we can we learn from the emergence of long COVID?
This whole thing taught us that infections can cause chronic disease. That’s really the No. 1 lesson that I take from this pandemic – that infections can cause chronic disease.
Looking at only acute illness from COVID is really only looking at the tip of the iceberg. Beneath that tip of the iceberg lies this hidden toll of disease that we don’t really talk about that much.
This pandemic shone a very, very good light on the idea that there is really an intimate connection between infections and chronic disease. It was really hardwired into our medical training as doctors that most infections, when people get over the hump of the acute phase of the disease, it’s all behind them. I think long COVID has humbled us in many, many ways, but chief among those is the realization – the stark realization – that infections can cause chronic disease.
That’s really going back to your [first] question: What does it mean that some people are not recovering? They actually have chronic illness. I’m hoping that we will find a treatment, that we’ll start finding things that would help them get back to baseline. But at this point in time, what we’re dealing with is people with chronic illness or chronic disease that may continue to affect them for many years to come in the absence of a treatment or a cure.
A version of this article first appeared on Medscape.com.
Those are two of the most striking findings of a comprehensive new research study of 138,000 veterans.
Lead researcher Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care and clinical epidemiologist at Washington University in St. Louis, spoke with this news organization about his team’s findings, what we know – and don’t – about long COVID, and what it means for physicians treating patients with the condition.
Excerpts of the interview follow.
Your research concluded that for those infected early in the pandemic, some long COVID symptoms declined over 2 years, but some did not. You have also concluded that long COVID is a chronic disease. Why?
We’ve been in this journey a little bit more than three and a half years. Some patients do experience some recovery. But that’s not the norm. Most people do not really fully recover. The health trajectory for people with long COVID is really very heterogeneous. There is no one-size-fits-all. There’s really no one line that I could give you that could cover all your patients. But it is very, very, very clear that a bunch of them experienced long COVID for sure; that’s really happening.
It happened in the pre-Delta era and in the Delta era, and with Omicron subvariants, even now. There are people who think, “This is a nothing-burger anymore,” or “It’s not an issue anymore.” It’s still happening with the current variants. Vaccines do reduce risk for long COVID, but do not completely eliminate the risk for long COVID.
You work with patients with long COVID in the clinic and also analyze data from thousands more. If long COVID does not go away, what should doctors look for in everyday practice that will help them recognize and help patients with long COVID?
Long COVID is not uncommon. We see it in the clinic in large numbers. Whatever clinic you’re running – if you’re running a cardiology clinic, or a nephrology clinic, or diabetes, or primary care – probably some of your people have it. You may not know about it. They may not tell you about it. You may not recognize it.
Not all long COVID is the same, and that’s really what makes it complex and makes it really hard to deal with in the clinic. But that’s the reality that we’re all dealing with. And it’s multisystemic; it’s not like it affects the heart only, the brain only, or the autonomic nervous system only. It does not behave in the same way in different individuals – they may have different manifestations, various health trajectories, and different outcomes. It’s important for doctors to get up to speed on long COVID as a multisystem illness.
Management at this point is really managing the symptoms. We don’t have a treatment for it; we don’t have a cure for it.
Some patients experience what you’ve described as partial recovery. What does that look like?
Some individuals do experience some recovery over time, but for most individuals, the recovery is long and arduous. Long COVID can last with them for many years. Some people may come back to the clinic and say, “I’m doing better,” but if you really flesh it out and dig deeper, they didn’t do better; they adjusted to a new baseline. They used to walk the dog three to four blocks, and now they walk the dog only half a block. They used to do an activity with their partner every Saturday or Sunday, and now they do half of that.
If you’re a physician, a primary care provider, or any other provider who is dealing with a patient with long COVID, know that this is really happening. It can happen even in vaccinated individuals. The presentation is heterogeneous. Some people may present to you with and say. “Well, before I had COVID I was mentally sharp and now having I’m having difficulty with memory, etc.” It can sometimes present as fatigue or postexertional malaise.
In some instances, it can present as sleep problems. It can present as what we call postural orthostatic tachycardia syndrome (POTS). Those people get a significant increase in heart rate with postural changes.
What the most important thing we can we learn from the emergence of long COVID?
This whole thing taught us that infections can cause chronic disease. That’s really the No. 1 lesson that I take from this pandemic – that infections can cause chronic disease.
Looking at only acute illness from COVID is really only looking at the tip of the iceberg. Beneath that tip of the iceberg lies this hidden toll of disease that we don’t really talk about that much.
This pandemic shone a very, very good light on the idea that there is really an intimate connection between infections and chronic disease. It was really hardwired into our medical training as doctors that most infections, when people get over the hump of the acute phase of the disease, it’s all behind them. I think long COVID has humbled us in many, many ways, but chief among those is the realization – the stark realization – that infections can cause chronic disease.
That’s really going back to your [first] question: What does it mean that some people are not recovering? They actually have chronic illness. I’m hoping that we will find a treatment, that we’ll start finding things that would help them get back to baseline. But at this point in time, what we’re dealing with is people with chronic illness or chronic disease that may continue to affect them for many years to come in the absence of a treatment or a cure.
A version of this article first appeared on Medscape.com.
Those are two of the most striking findings of a comprehensive new research study of 138,000 veterans.
Lead researcher Ziyad Al-Aly, MD, chief of research at Veterans Affairs St. Louis Health Care and clinical epidemiologist at Washington University in St. Louis, spoke with this news organization about his team’s findings, what we know – and don’t – about long COVID, and what it means for physicians treating patients with the condition.
Excerpts of the interview follow.
Your research concluded that for those infected early in the pandemic, some long COVID symptoms declined over 2 years, but some did not. You have also concluded that long COVID is a chronic disease. Why?
We’ve been in this journey a little bit more than three and a half years. Some patients do experience some recovery. But that’s not the norm. Most people do not really fully recover. The health trajectory for people with long COVID is really very heterogeneous. There is no one-size-fits-all. There’s really no one line that I could give you that could cover all your patients. But it is very, very, very clear that a bunch of them experienced long COVID for sure; that’s really happening.
It happened in the pre-Delta era and in the Delta era, and with Omicron subvariants, even now. There are people who think, “This is a nothing-burger anymore,” or “It’s not an issue anymore.” It’s still happening with the current variants. Vaccines do reduce risk for long COVID, but do not completely eliminate the risk for long COVID.
You work with patients with long COVID in the clinic and also analyze data from thousands more. If long COVID does not go away, what should doctors look for in everyday practice that will help them recognize and help patients with long COVID?
Long COVID is not uncommon. We see it in the clinic in large numbers. Whatever clinic you’re running – if you’re running a cardiology clinic, or a nephrology clinic, or diabetes, or primary care – probably some of your people have it. You may not know about it. They may not tell you about it. You may not recognize it.
Not all long COVID is the same, and that’s really what makes it complex and makes it really hard to deal with in the clinic. But that’s the reality that we’re all dealing with. And it’s multisystemic; it’s not like it affects the heart only, the brain only, or the autonomic nervous system only. It does not behave in the same way in different individuals – they may have different manifestations, various health trajectories, and different outcomes. It’s important for doctors to get up to speed on long COVID as a multisystem illness.
Management at this point is really managing the symptoms. We don’t have a treatment for it; we don’t have a cure for it.
Some patients experience what you’ve described as partial recovery. What does that look like?
Some individuals do experience some recovery over time, but for most individuals, the recovery is long and arduous. Long COVID can last with them for many years. Some people may come back to the clinic and say, “I’m doing better,” but if you really flesh it out and dig deeper, they didn’t do better; they adjusted to a new baseline. They used to walk the dog three to four blocks, and now they walk the dog only half a block. They used to do an activity with their partner every Saturday or Sunday, and now they do half of that.
If you’re a physician, a primary care provider, or any other provider who is dealing with a patient with long COVID, know that this is really happening. It can happen even in vaccinated individuals. The presentation is heterogeneous. Some people may present to you with and say. “Well, before I had COVID I was mentally sharp and now having I’m having difficulty with memory, etc.” It can sometimes present as fatigue or postexertional malaise.
In some instances, it can present as sleep problems. It can present as what we call postural orthostatic tachycardia syndrome (POTS). Those people get a significant increase in heart rate with postural changes.
What the most important thing we can we learn from the emergence of long COVID?
This whole thing taught us that infections can cause chronic disease. That’s really the No. 1 lesson that I take from this pandemic – that infections can cause chronic disease.
Looking at only acute illness from COVID is really only looking at the tip of the iceberg. Beneath that tip of the iceberg lies this hidden toll of disease that we don’t really talk about that much.
This pandemic shone a very, very good light on the idea that there is really an intimate connection between infections and chronic disease. It was really hardwired into our medical training as doctors that most infections, when people get over the hump of the acute phase of the disease, it’s all behind them. I think long COVID has humbled us in many, many ways, but chief among those is the realization – the stark realization – that infections can cause chronic disease.
That’s really going back to your [first] question: What does it mean that some people are not recovering? They actually have chronic illness. I’m hoping that we will find a treatment, that we’ll start finding things that would help them get back to baseline. But at this point in time, what we’re dealing with is people with chronic illness or chronic disease that may continue to affect them for many years to come in the absence of a treatment or a cure.
A version of this article first appeared on Medscape.com.
Children and long COVID: How many are affected?
Long COVID most often strikes seniors and adults, but children are also affected, even though they get less attention, new research shows.
Experts noted that the disease poses particular challenges for children and the doctors who treat them.
Parents and doctors need to be on the lookout for symptoms of long COVID in children and teens that might be easily missed or misdiagnosed, according to physicians and family groups.
Children are at lower risk for contracting COVID and often experience milder symptoms. But the virus is now widespread, and a recent study found that around 16% of pediatric patients with COVID go on to develop symptoms that last more than 3 months – the working definition of long COVID.
Parents and doctors are calling for more studies and more awareness.
Diane Sheehan, who lives outside Charlotte, N.C., says she was an active person and is now permanently disabled from long COVID. Her teenage son has it too and is still recovering.
He contracted COVID after a school event, she said. He had a mild case, but then he started experiencing dizziness and would even experience loss of consciousness when he stood up suddenly. After he contracted the virus a second time, he was bedridden for 8 months.
The staff at Hackensack Meridian Health, a pediatric long COVID clinic in New Jersey, has been working with area schools to help teachers and school nurses recognize possible long COVID in children and young people. The clinic is one of about a dozen in the United States that specializes in pediatric cases.
Katherine Clouser, MD, a pediatric hospital medicine specialist, has been with the clinic since it opened in 2021, and she’s seen a steady flow of patients. Some get better, but she sees a few new cases each week.
“We are seeing children who are having a difficult time returning to school and sports,” she said.
The clinic is having success with a mix of approaches, including intensive rehabilitation, talk therapy, and some off-label use of nirmatrelvir (Paxlovid), an antiviral now being studied as a treatment for long COVID through a National Institutes of Health clinical trials initiative that was announced last month.
Treatment depends on symptoms and is determined on a case-by-case basis, Dr. Clouser said.
Families of her patients are grateful, she added.
“We hear a lot of parents who were desperate for someone to believe them – or someone who knows about it,” she said.
A recent review of more than 30 studies with about 15,000 participants concluded that 16.2% (95% confidence interval, 8.5%-28.6%) of the pediatric participants experienced one or more persistent symptoms of long COVID at least 3 months after acute infection.
Estimates of the number of children and youth with long COVID have varied widely. A 2022 study put the number at more than 25% of cases, but the American Academy of Pediatrics notes that estimates of the percentage of children infected with SARS-CoV-2 who go on to have long COVID range from 2% to 66%.
The federal Recover Initiative has enrolled more than 10,000 children and youth – a number it plans to double – and studies of electronic health records are underway. The Recover pediatric team is also setting up a cohort that they plan to follow into 2025.
Some clinics are having luck treating young people with approaches ranging from special diets to off-label medication.
David W. Miller, MD, who runs the long COVID clinic at the UH Rainbow Babies and Children’s Hospital, Cleveland, said he’s seen about 250 patients.
A warning sign of long COVID in children is profound fatigue, he said.
“It’s the most common symptom,” Dr. Miller said. “They feel like they have the flu all the time.”
Many also experience orthostatic hypotension on standing, triggering dizziness.
He said his team targets symptom groups. Initial management consists of a diet without sugar or refined carbohydrates. Skipping pasta and sweets can be hard for young people, but Dr. Miller said sometimes the diet alone helps.
Many have vitamin D and iron deficiencies. Others need help getting a good night’s sleep. He’s treated 50 with off-label low-dose naltrexone.
Some people with long COVID – both young and old – complain about being misdiagnosed as having depression. Dr. Miller says he see a lot of anxiety – some situational and some biochemical – in pediatric patients. But he cautions doctors not to treat their illness solely as a mental health problem.
His advice: If a young person or child experiences a major change in his or her regular level of functioning or has multiple COVID symptoms that don’t go away after several months, parents and doctors should consider long COVID as a possible cause.
Dr. Miller said most of his patients get better over time with some treatments: “We see improvement in the majority of kids who can stick to the regimen,” such as a sugar-free diet, supplements, and adequate sleep. Recovery has been slow and incomplete for Diane Sheehan and her son. She was training as a permanent make-up artist, she said, but now has hand tremors that make work impossible.
She has found doctors who treat some of her symptoms with antihistamines, and her son has benefited from physical therapy.
But for now, her son is passing on a scholarship he was awarded to attend North Carolina State University this year. Instead, he’s living at home and going to a local college.
Ms. Sheehan urges parents to be on the alert for signs that their children might have long COVID, which can be confused with many other conditions.
A version of this article first appeared on Medscape.com.
Long COVID most often strikes seniors and adults, but children are also affected, even though they get less attention, new research shows.
Experts noted that the disease poses particular challenges for children and the doctors who treat them.
Parents and doctors need to be on the lookout for symptoms of long COVID in children and teens that might be easily missed or misdiagnosed, according to physicians and family groups.
Children are at lower risk for contracting COVID and often experience milder symptoms. But the virus is now widespread, and a recent study found that around 16% of pediatric patients with COVID go on to develop symptoms that last more than 3 months – the working definition of long COVID.
Parents and doctors are calling for more studies and more awareness.
Diane Sheehan, who lives outside Charlotte, N.C., says she was an active person and is now permanently disabled from long COVID. Her teenage son has it too and is still recovering.
He contracted COVID after a school event, she said. He had a mild case, but then he started experiencing dizziness and would even experience loss of consciousness when he stood up suddenly. After he contracted the virus a second time, he was bedridden for 8 months.
The staff at Hackensack Meridian Health, a pediatric long COVID clinic in New Jersey, has been working with area schools to help teachers and school nurses recognize possible long COVID in children and young people. The clinic is one of about a dozen in the United States that specializes in pediatric cases.
Katherine Clouser, MD, a pediatric hospital medicine specialist, has been with the clinic since it opened in 2021, and she’s seen a steady flow of patients. Some get better, but she sees a few new cases each week.
“We are seeing children who are having a difficult time returning to school and sports,” she said.
The clinic is having success with a mix of approaches, including intensive rehabilitation, talk therapy, and some off-label use of nirmatrelvir (Paxlovid), an antiviral now being studied as a treatment for long COVID through a National Institutes of Health clinical trials initiative that was announced last month.
Treatment depends on symptoms and is determined on a case-by-case basis, Dr. Clouser said.
Families of her patients are grateful, she added.
“We hear a lot of parents who were desperate for someone to believe them – or someone who knows about it,” she said.
A recent review of more than 30 studies with about 15,000 participants concluded that 16.2% (95% confidence interval, 8.5%-28.6%) of the pediatric participants experienced one or more persistent symptoms of long COVID at least 3 months after acute infection.
Estimates of the number of children and youth with long COVID have varied widely. A 2022 study put the number at more than 25% of cases, but the American Academy of Pediatrics notes that estimates of the percentage of children infected with SARS-CoV-2 who go on to have long COVID range from 2% to 66%.
The federal Recover Initiative has enrolled more than 10,000 children and youth – a number it plans to double – and studies of electronic health records are underway. The Recover pediatric team is also setting up a cohort that they plan to follow into 2025.
Some clinics are having luck treating young people with approaches ranging from special diets to off-label medication.
David W. Miller, MD, who runs the long COVID clinic at the UH Rainbow Babies and Children’s Hospital, Cleveland, said he’s seen about 250 patients.
A warning sign of long COVID in children is profound fatigue, he said.
“It’s the most common symptom,” Dr. Miller said. “They feel like they have the flu all the time.”
Many also experience orthostatic hypotension on standing, triggering dizziness.
He said his team targets symptom groups. Initial management consists of a diet without sugar or refined carbohydrates. Skipping pasta and sweets can be hard for young people, but Dr. Miller said sometimes the diet alone helps.
Many have vitamin D and iron deficiencies. Others need help getting a good night’s sleep. He’s treated 50 with off-label low-dose naltrexone.
Some people with long COVID – both young and old – complain about being misdiagnosed as having depression. Dr. Miller says he see a lot of anxiety – some situational and some biochemical – in pediatric patients. But he cautions doctors not to treat their illness solely as a mental health problem.
His advice: If a young person or child experiences a major change in his or her regular level of functioning or has multiple COVID symptoms that don’t go away after several months, parents and doctors should consider long COVID as a possible cause.
Dr. Miller said most of his patients get better over time with some treatments: “We see improvement in the majority of kids who can stick to the regimen,” such as a sugar-free diet, supplements, and adequate sleep. Recovery has been slow and incomplete for Diane Sheehan and her son. She was training as a permanent make-up artist, she said, but now has hand tremors that make work impossible.
She has found doctors who treat some of her symptoms with antihistamines, and her son has benefited from physical therapy.
But for now, her son is passing on a scholarship he was awarded to attend North Carolina State University this year. Instead, he’s living at home and going to a local college.
Ms. Sheehan urges parents to be on the alert for signs that their children might have long COVID, which can be confused with many other conditions.
A version of this article first appeared on Medscape.com.
Long COVID most often strikes seniors and adults, but children are also affected, even though they get less attention, new research shows.
Experts noted that the disease poses particular challenges for children and the doctors who treat them.
Parents and doctors need to be on the lookout for symptoms of long COVID in children and teens that might be easily missed or misdiagnosed, according to physicians and family groups.
Children are at lower risk for contracting COVID and often experience milder symptoms. But the virus is now widespread, and a recent study found that around 16% of pediatric patients with COVID go on to develop symptoms that last more than 3 months – the working definition of long COVID.
Parents and doctors are calling for more studies and more awareness.
Diane Sheehan, who lives outside Charlotte, N.C., says she was an active person and is now permanently disabled from long COVID. Her teenage son has it too and is still recovering.
He contracted COVID after a school event, she said. He had a mild case, but then he started experiencing dizziness and would even experience loss of consciousness when he stood up suddenly. After he contracted the virus a second time, he was bedridden for 8 months.
The staff at Hackensack Meridian Health, a pediatric long COVID clinic in New Jersey, has been working with area schools to help teachers and school nurses recognize possible long COVID in children and young people. The clinic is one of about a dozen in the United States that specializes in pediatric cases.
Katherine Clouser, MD, a pediatric hospital medicine specialist, has been with the clinic since it opened in 2021, and she’s seen a steady flow of patients. Some get better, but she sees a few new cases each week.
“We are seeing children who are having a difficult time returning to school and sports,” she said.
The clinic is having success with a mix of approaches, including intensive rehabilitation, talk therapy, and some off-label use of nirmatrelvir (Paxlovid), an antiviral now being studied as a treatment for long COVID through a National Institutes of Health clinical trials initiative that was announced last month.
Treatment depends on symptoms and is determined on a case-by-case basis, Dr. Clouser said.
Families of her patients are grateful, she added.
“We hear a lot of parents who were desperate for someone to believe them – or someone who knows about it,” she said.
A recent review of more than 30 studies with about 15,000 participants concluded that 16.2% (95% confidence interval, 8.5%-28.6%) of the pediatric participants experienced one or more persistent symptoms of long COVID at least 3 months after acute infection.
Estimates of the number of children and youth with long COVID have varied widely. A 2022 study put the number at more than 25% of cases, but the American Academy of Pediatrics notes that estimates of the percentage of children infected with SARS-CoV-2 who go on to have long COVID range from 2% to 66%.
The federal Recover Initiative has enrolled more than 10,000 children and youth – a number it plans to double – and studies of electronic health records are underway. The Recover pediatric team is also setting up a cohort that they plan to follow into 2025.
Some clinics are having luck treating young people with approaches ranging from special diets to off-label medication.
David W. Miller, MD, who runs the long COVID clinic at the UH Rainbow Babies and Children’s Hospital, Cleveland, said he’s seen about 250 patients.
A warning sign of long COVID in children is profound fatigue, he said.
“It’s the most common symptom,” Dr. Miller said. “They feel like they have the flu all the time.”
Many also experience orthostatic hypotension on standing, triggering dizziness.
He said his team targets symptom groups. Initial management consists of a diet without sugar or refined carbohydrates. Skipping pasta and sweets can be hard for young people, but Dr. Miller said sometimes the diet alone helps.
Many have vitamin D and iron deficiencies. Others need help getting a good night’s sleep. He’s treated 50 with off-label low-dose naltrexone.
Some people with long COVID – both young and old – complain about being misdiagnosed as having depression. Dr. Miller says he see a lot of anxiety – some situational and some biochemical – in pediatric patients. But he cautions doctors not to treat their illness solely as a mental health problem.
His advice: If a young person or child experiences a major change in his or her regular level of functioning or has multiple COVID symptoms that don’t go away after several months, parents and doctors should consider long COVID as a possible cause.
Dr. Miller said most of his patients get better over time with some treatments: “We see improvement in the majority of kids who can stick to the regimen,” such as a sugar-free diet, supplements, and adequate sleep. Recovery has been slow and incomplete for Diane Sheehan and her son. She was training as a permanent make-up artist, she said, but now has hand tremors that make work impossible.
She has found doctors who treat some of her symptoms with antihistamines, and her son has benefited from physical therapy.
But for now, her son is passing on a scholarship he was awarded to attend North Carolina State University this year. Instead, he’s living at home and going to a local college.
Ms. Sheehan urges parents to be on the alert for signs that their children might have long COVID, which can be confused with many other conditions.
A version of this article first appeared on Medscape.com.
Off-label meds: Promising long COVID treatments?
Those with long COVID for years now are engaging in robust online conversations about a range of treatments not formally approved by the Food and Drug Administration for the condition, reporting good and bad results.
High on the current list: low-dose naltrexone (LDN). A version of drug developed to help addicts has been shown to help some long COVID patients.
But evidence is building for other treatments, many of them targeted to treat brain fog or one of the other long-term symptoms in individuals 3 months or more after acute COVID infection.
Some patients are taking metformin, which studies have found to be effective at lowering long COVID risk. Paxlovid is being tested for long COVID. Antivirals are also on the list.
Alba Azola, MD, said she has treated long COVID patients with brain fog and dizziness who have postural orthostatic tachycardia syndrome (POTS).
Dr. Azola said she asked the staff at Johns Hopkins Medicine in Baltimore, where she is a rehabilitation specialist, to teach her how to treat the condition. Since there is no approved treatment for POTS, that meant using off-label drugs, she said.
“It was super scary as a provider to start doing that, but my patients were suffering so much,” she said, noting the wait for patients to get into the POTS clinic at Hopkins was 2 years.
Dr. Azola was the lead author on guidelines published by the American Academy of Physical Medicine and Rehabilitation (AAPM&R) last September on how to treat autonomic dysfunction, a common symptom of long COVID.
The guidelines she helped write include drugs designed for blood pressure – such as midodrine – and steroids.
Dr. Azola noted the medications are prescribed on a case-by-case basis because the same drug that works for one patient may have awful side effects for another patient, she said. At the same time, some of these drugs have helped her patients go back to living relatively normal lives.
The first time JD Davids of Brooklyn, N.Y., took LDN, it was for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and he couldn’t tolerate it. He had nightmares. But when he took it for long COVID, he started out at a low dose and worked his way up, at his doctor’s advice.
“It’s been a game-changer,” said Mr. Davids, cofounder of Long COVID Justice, an activist group. He has ME/CFS and several other chronic conditions, including long COVID. But, since he started taking LDN for long COVID, Mr. Davids said he has more energy and less pain.
Technically, evidence is required to show off-label drug use could be effective in treating conditions for which the drug is not formally approved. Research suggests that 20%-30% of drugs are prescribed off-label.
No formal data exist on how widespread the use of off-label drugs for long COVID may be. But LDN is a major topic of discussion on public patient groups on Facebook.
A recent study in The Lancet Infectious Diseases suggested that the diabetes drug metformin could be helpful. (The same study found no benefit from ivermectin, a drug since dismissed as a possible COVID treatment.)
Patients who testified at a virtual FDA hearing on drug development in April reported using vitamins, herbal supplements, over-the-counter medications and off-label drugs such as gabapentin and beta-blockers. Both of those drugs were on a list of potential treatments published in a January Nature Review article, along with LDN and Paxlovid.
Currently, Paxlovid is approved for acute COVID, and is in clinical trials as a treatment for long COVID as part of the federal government’s RECOVER Initiative. While only small studies of LDN have been conducted for long COVID, doctors are already prescribing the treatment. Mr. Davids said his primary care doctor recommended it.
Some doctors, such as Michael Peluso, MD, are comparing the trend to the early days of the AIDS epidemic, when the federal government was slow to recognize the viral disease. Patients banded together to protest and gain access to experimental treatments.
Dr. Peluso, who treats long COVID patients at the University of California, San Francisco, said that without any approved treatment, patients are turning to one another to find out what works.
“A lot of people experiencing long COVID are looking for ways to feel better now, rather than waiting for the science or the guidelines to catch up,” he said in an interview.
In some cases, the drugs are backed by small studies, he said.
“While we still need clinical trials to prove what will work, the drugs tested in these trials are also being informed by anecdotes shared by patients,” Dr. Peluso said.
Gail Van Norman, MD, of the University of Washington, Seattle, also said the long COVID situation today is reminiscent of the AIDS movement, which was “one of the times in history where we saw a real response to patient advocacy groups in terms of access to drugs.” Since then, the FDA has set up multiple programs to expand access to experimental drugs, added Dr. Van Norman, author of a recent study on off-label drug use.
But off-label use needs to be supervised by a physician, she and others said. Many patients get their information from social media, which Dr. Van Norman sees as a double-edged sword. Patients can share information, do their own research online, and alert practitioners to new findings, she said. But social media also promotes misinformation.
“People with no expertise have the same level of voice, and they are magnified,” Dr. Van Norman said.
The FDA requires doctors to have some evidence to support off-label use, she said. Doctors should talk to patients who want to try-off label drugs about what has been studied and what has not been studied.
“If I had [long COVID], I would be asking questions about all these drugs,” Dr. Van Norman said.
Mr. Davids has been asking questions like this for years. Diagnosed in 2019 with ME/CFS, he developed long COVID during the pandemic. Once he began started taking LDN, he started feeling better.
As someone with multiple chronic illnesses, Mr. Davids has tried a lot of treatments – he’s currently on two intravenous drugs and two compounded drugs, including LDN. But when his doctor first suggested it, he was wary.
“I’ve worked with her to help increase the dosage slowly over time,” he said. “It’s very important for many people to start low and slow and work their way up.”
He hears stories of people who can’t get it from their physicians. Some, he said, think it may be because of the association of the drug with opioid abuse.
Mr. Davids said long COVID patients have no other choice but to turn to alternative treatments.
“I think we’ve been ill-served by our research establishment,” he said. “It is not set up for complex chronic conditions.”
Mr. Davids said he doesn’t know if LDN helps with underlying conditions or treats the symptoms – such as pain and fatigue – that keep him from doing things such as typing.
“My understanding is that it may be doing both,” he said. “I sure am happy that it allows me to do things like keep my job.”
Dr. Azola and others said patients need to be monitored closely if they are taking an off-label drug. She recommends primary care doctors become familiar with them so they can offer patients some relief.
“It’s about the relationship between the patient and the provider and the provider being comfortable,” she said. “l was very transparent with my patients.”
A version of this article appeared on Medscape.com.
Those with long COVID for years now are engaging in robust online conversations about a range of treatments not formally approved by the Food and Drug Administration for the condition, reporting good and bad results.
High on the current list: low-dose naltrexone (LDN). A version of drug developed to help addicts has been shown to help some long COVID patients.
But evidence is building for other treatments, many of them targeted to treat brain fog or one of the other long-term symptoms in individuals 3 months or more after acute COVID infection.
Some patients are taking metformin, which studies have found to be effective at lowering long COVID risk. Paxlovid is being tested for long COVID. Antivirals are also on the list.
Alba Azola, MD, said she has treated long COVID patients with brain fog and dizziness who have postural orthostatic tachycardia syndrome (POTS).
Dr. Azola said she asked the staff at Johns Hopkins Medicine in Baltimore, where she is a rehabilitation specialist, to teach her how to treat the condition. Since there is no approved treatment for POTS, that meant using off-label drugs, she said.
“It was super scary as a provider to start doing that, but my patients were suffering so much,” she said, noting the wait for patients to get into the POTS clinic at Hopkins was 2 years.
Dr. Azola was the lead author on guidelines published by the American Academy of Physical Medicine and Rehabilitation (AAPM&R) last September on how to treat autonomic dysfunction, a common symptom of long COVID.
The guidelines she helped write include drugs designed for blood pressure – such as midodrine – and steroids.
Dr. Azola noted the medications are prescribed on a case-by-case basis because the same drug that works for one patient may have awful side effects for another patient, she said. At the same time, some of these drugs have helped her patients go back to living relatively normal lives.
The first time JD Davids of Brooklyn, N.Y., took LDN, it was for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and he couldn’t tolerate it. He had nightmares. But when he took it for long COVID, he started out at a low dose and worked his way up, at his doctor’s advice.
“It’s been a game-changer,” said Mr. Davids, cofounder of Long COVID Justice, an activist group. He has ME/CFS and several other chronic conditions, including long COVID. But, since he started taking LDN for long COVID, Mr. Davids said he has more energy and less pain.
Technically, evidence is required to show off-label drug use could be effective in treating conditions for which the drug is not formally approved. Research suggests that 20%-30% of drugs are prescribed off-label.
No formal data exist on how widespread the use of off-label drugs for long COVID may be. But LDN is a major topic of discussion on public patient groups on Facebook.
A recent study in The Lancet Infectious Diseases suggested that the diabetes drug metformin could be helpful. (The same study found no benefit from ivermectin, a drug since dismissed as a possible COVID treatment.)
Patients who testified at a virtual FDA hearing on drug development in April reported using vitamins, herbal supplements, over-the-counter medications and off-label drugs such as gabapentin and beta-blockers. Both of those drugs were on a list of potential treatments published in a January Nature Review article, along with LDN and Paxlovid.
Currently, Paxlovid is approved for acute COVID, and is in clinical trials as a treatment for long COVID as part of the federal government’s RECOVER Initiative. While only small studies of LDN have been conducted for long COVID, doctors are already prescribing the treatment. Mr. Davids said his primary care doctor recommended it.
Some doctors, such as Michael Peluso, MD, are comparing the trend to the early days of the AIDS epidemic, when the federal government was slow to recognize the viral disease. Patients banded together to protest and gain access to experimental treatments.
Dr. Peluso, who treats long COVID patients at the University of California, San Francisco, said that without any approved treatment, patients are turning to one another to find out what works.
“A lot of people experiencing long COVID are looking for ways to feel better now, rather than waiting for the science or the guidelines to catch up,” he said in an interview.
In some cases, the drugs are backed by small studies, he said.
“While we still need clinical trials to prove what will work, the drugs tested in these trials are also being informed by anecdotes shared by patients,” Dr. Peluso said.
Gail Van Norman, MD, of the University of Washington, Seattle, also said the long COVID situation today is reminiscent of the AIDS movement, which was “one of the times in history where we saw a real response to patient advocacy groups in terms of access to drugs.” Since then, the FDA has set up multiple programs to expand access to experimental drugs, added Dr. Van Norman, author of a recent study on off-label drug use.
But off-label use needs to be supervised by a physician, she and others said. Many patients get their information from social media, which Dr. Van Norman sees as a double-edged sword. Patients can share information, do their own research online, and alert practitioners to new findings, she said. But social media also promotes misinformation.
“People with no expertise have the same level of voice, and they are magnified,” Dr. Van Norman said.
The FDA requires doctors to have some evidence to support off-label use, she said. Doctors should talk to patients who want to try-off label drugs about what has been studied and what has not been studied.
“If I had [long COVID], I would be asking questions about all these drugs,” Dr. Van Norman said.
Mr. Davids has been asking questions like this for years. Diagnosed in 2019 with ME/CFS, he developed long COVID during the pandemic. Once he began started taking LDN, he started feeling better.
As someone with multiple chronic illnesses, Mr. Davids has tried a lot of treatments – he’s currently on two intravenous drugs and two compounded drugs, including LDN. But when his doctor first suggested it, he was wary.
“I’ve worked with her to help increase the dosage slowly over time,” he said. “It’s very important for many people to start low and slow and work their way up.”
He hears stories of people who can’t get it from their physicians. Some, he said, think it may be because of the association of the drug with opioid abuse.
Mr. Davids said long COVID patients have no other choice but to turn to alternative treatments.
“I think we’ve been ill-served by our research establishment,” he said. “It is not set up for complex chronic conditions.”
Mr. Davids said he doesn’t know if LDN helps with underlying conditions or treats the symptoms – such as pain and fatigue – that keep him from doing things such as typing.
“My understanding is that it may be doing both,” he said. “I sure am happy that it allows me to do things like keep my job.”
Dr. Azola and others said patients need to be monitored closely if they are taking an off-label drug. She recommends primary care doctors become familiar with them so they can offer patients some relief.
“It’s about the relationship between the patient and the provider and the provider being comfortable,” she said. “l was very transparent with my patients.”
A version of this article appeared on Medscape.com.
Those with long COVID for years now are engaging in robust online conversations about a range of treatments not formally approved by the Food and Drug Administration for the condition, reporting good and bad results.
High on the current list: low-dose naltrexone (LDN). A version of drug developed to help addicts has been shown to help some long COVID patients.
But evidence is building for other treatments, many of them targeted to treat brain fog or one of the other long-term symptoms in individuals 3 months or more after acute COVID infection.
Some patients are taking metformin, which studies have found to be effective at lowering long COVID risk. Paxlovid is being tested for long COVID. Antivirals are also on the list.
Alba Azola, MD, said she has treated long COVID patients with brain fog and dizziness who have postural orthostatic tachycardia syndrome (POTS).
Dr. Azola said she asked the staff at Johns Hopkins Medicine in Baltimore, where she is a rehabilitation specialist, to teach her how to treat the condition. Since there is no approved treatment for POTS, that meant using off-label drugs, she said.
“It was super scary as a provider to start doing that, but my patients were suffering so much,” she said, noting the wait for patients to get into the POTS clinic at Hopkins was 2 years.
Dr. Azola was the lead author on guidelines published by the American Academy of Physical Medicine and Rehabilitation (AAPM&R) last September on how to treat autonomic dysfunction, a common symptom of long COVID.
The guidelines she helped write include drugs designed for blood pressure – such as midodrine – and steroids.
Dr. Azola noted the medications are prescribed on a case-by-case basis because the same drug that works for one patient may have awful side effects for another patient, she said. At the same time, some of these drugs have helped her patients go back to living relatively normal lives.
The first time JD Davids of Brooklyn, N.Y., took LDN, it was for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and he couldn’t tolerate it. He had nightmares. But when he took it for long COVID, he started out at a low dose and worked his way up, at his doctor’s advice.
“It’s been a game-changer,” said Mr. Davids, cofounder of Long COVID Justice, an activist group. He has ME/CFS and several other chronic conditions, including long COVID. But, since he started taking LDN for long COVID, Mr. Davids said he has more energy and less pain.
Technically, evidence is required to show off-label drug use could be effective in treating conditions for which the drug is not formally approved. Research suggests that 20%-30% of drugs are prescribed off-label.
No formal data exist on how widespread the use of off-label drugs for long COVID may be. But LDN is a major topic of discussion on public patient groups on Facebook.
A recent study in The Lancet Infectious Diseases suggested that the diabetes drug metformin could be helpful. (The same study found no benefit from ivermectin, a drug since dismissed as a possible COVID treatment.)
Patients who testified at a virtual FDA hearing on drug development in April reported using vitamins, herbal supplements, over-the-counter medications and off-label drugs such as gabapentin and beta-blockers. Both of those drugs were on a list of potential treatments published in a January Nature Review article, along with LDN and Paxlovid.
Currently, Paxlovid is approved for acute COVID, and is in clinical trials as a treatment for long COVID as part of the federal government’s RECOVER Initiative. While only small studies of LDN have been conducted for long COVID, doctors are already prescribing the treatment. Mr. Davids said his primary care doctor recommended it.
Some doctors, such as Michael Peluso, MD, are comparing the trend to the early days of the AIDS epidemic, when the federal government was slow to recognize the viral disease. Patients banded together to protest and gain access to experimental treatments.
Dr. Peluso, who treats long COVID patients at the University of California, San Francisco, said that without any approved treatment, patients are turning to one another to find out what works.
“A lot of people experiencing long COVID are looking for ways to feel better now, rather than waiting for the science or the guidelines to catch up,” he said in an interview.
In some cases, the drugs are backed by small studies, he said.
“While we still need clinical trials to prove what will work, the drugs tested in these trials are also being informed by anecdotes shared by patients,” Dr. Peluso said.
Gail Van Norman, MD, of the University of Washington, Seattle, also said the long COVID situation today is reminiscent of the AIDS movement, which was “one of the times in history where we saw a real response to patient advocacy groups in terms of access to drugs.” Since then, the FDA has set up multiple programs to expand access to experimental drugs, added Dr. Van Norman, author of a recent study on off-label drug use.
But off-label use needs to be supervised by a physician, she and others said. Many patients get their information from social media, which Dr. Van Norman sees as a double-edged sword. Patients can share information, do their own research online, and alert practitioners to new findings, she said. But social media also promotes misinformation.
“People with no expertise have the same level of voice, and they are magnified,” Dr. Van Norman said.
The FDA requires doctors to have some evidence to support off-label use, she said. Doctors should talk to patients who want to try-off label drugs about what has been studied and what has not been studied.
“If I had [long COVID], I would be asking questions about all these drugs,” Dr. Van Norman said.
Mr. Davids has been asking questions like this for years. Diagnosed in 2019 with ME/CFS, he developed long COVID during the pandemic. Once he began started taking LDN, he started feeling better.
As someone with multiple chronic illnesses, Mr. Davids has tried a lot of treatments – he’s currently on two intravenous drugs and two compounded drugs, including LDN. But when his doctor first suggested it, he was wary.
“I’ve worked with her to help increase the dosage slowly over time,” he said. “It’s very important for many people to start low and slow and work their way up.”
He hears stories of people who can’t get it from their physicians. Some, he said, think it may be because of the association of the drug with opioid abuse.
Mr. Davids said long COVID patients have no other choice but to turn to alternative treatments.
“I think we’ve been ill-served by our research establishment,” he said. “It is not set up for complex chronic conditions.”
Mr. Davids said he doesn’t know if LDN helps with underlying conditions or treats the symptoms – such as pain and fatigue – that keep him from doing things such as typing.
“My understanding is that it may be doing both,” he said. “I sure am happy that it allows me to do things like keep my job.”
Dr. Azola and others said patients need to be monitored closely if they are taking an off-label drug. She recommends primary care doctors become familiar with them so they can offer patients some relief.
“It’s about the relationship between the patient and the provider and the provider being comfortable,” she said. “l was very transparent with my patients.”
A version of this article appeared on Medscape.com.
Long COVID patients turn to doctors for help with disability claims
As millions of Americans face another year of long COVID, some are finding they are unable to return to work or cannot work as they did before they got sick and are turning to doctors for help with documenting their disability.
For those who can return to work, a doctor’s diagnosis of long COVID is key to gaining access to workplace accommodations, such as working flex hours or remotely. For those who cannot work, a note from the doctor is the first step to collecting disability payments.
With no definitive blood tests or scans for long COVID that could confirm a diagnosis, some say doctors may feel uncomfortable in this role, which puts them in a tough spot, said Wes Ely, MD, MPH, codirector of the critical illness, brain dysfunction and survivorship center at Vanderbilt University, Nashville, Tenn.
Doctors typically are not taught to deal with vagueness in diagnostics.
“Long COVID falls straight into the gray zone,” he said. There are no tests and a long list of common symptoms. “It makes a lot of doctors feel super insecure,” he said.
Now, patients and their advocates are calling for doctors to be more open-minded about how they assess those with long COVID and other chronic illnesses. Although their disability may not be visible, many with long COVID struggle to function. If they need help, they say, they need a doctor to confirm their limitations – test results or no test results.
Better documentation of patient-reported symptoms would go a long way, according to a perspective published in The New England Journal of Medicine.
“There’s a long history of people with disabilities being forced to ask doctors to legitimize their symptoms,” said study author Zackary Berger, MD, PhD, Johns Hopkins University, Baltimore, Md. Dr. Berger believes doctors should learn to listen more closely to patients, turn their narratives into patient notes, and use the new International Classification of Diseases 10 (ICD-10) code, a worldwide system for identifying and generating data on diseases, when they diagnose long COVID. He also thinks doctors should become advocates for their patients.
The Americans With Disabilities Act allows employers to request medical proof of disability, “and thereby assigns physicians the gate-keeping role of determining patients’ eligibility for reasonable accommodations,” according to the analysis. Those accommodations may mean a handicapped parking space or extra days working remotely.
Without a definitive diagnostic test, long COVID joins fibromyalgia and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), which lack biomarkers or imaging tests to support a diagnosis, they write.
“These diagnoses are therefore contentious, and government agencies, employers, and many physicians do not accept these conditions as real,” they write.
Physicians make a good faith effort in trying to understand long COVID, but both doctors and the courts like to see evidence, said Michael Ashley Stein, JD, PHD, director of the Harvard Law School Project on Disability. Dr. Stein and others say that doctors should listen closely to their patients’ descriptions of their symptoms.
“In the absence of agreed-upon biomarkers, doctors need to listen to their patients and look for other [indications] and other consistent evidence of conditions, and then work from there rather than dismiss the existence of these conditions,” he said.
Dr. Ely said he and others were taught in medical school that if it doesn’t come up on a diagnostic test, there’s no problem. “I am absolutely complicit,” he said. “I’m part of the community that did that for so many years.”
Dr. Ely agreed that the demand for clinical test results does not work for long COVID and chronic diseases such as ME/CFS. People come in with complaints and they get a typical medical workup with labs, he said, and the labs look normal on paper.
“And [the doctor is] thinking: ‘I don’t know what is wrong with this person and there’s nothing on paper I can treat. I don’t know if I even believe in long COVID.’ ”
At the same time, patients might need support from a doctor to get accommodations at work under the ADA, such as flexible hours. Or doctors’ notes may be required if a patient is trying to collect private disability insurance, workers compensation, or federal disability payments through Social Security.
The U.S. Centers for Disease Control and Prevention guidelines on diagnosing long COVID, updated last December, point out that normal laboratory or imaging findings do not rule out long COVID.
In addition, 12 key symptoms of long COVID were identified in May by scientists working with the RECOVER Initiative, the federal government’s long COVID research program. These symptoms include fatigue, brain fog, dizziness, gastrointestinal symptoms, loss of or change in smell or taste, chest pain, and abnormal movements.
Still, patients with long COVID seeking help also face the “disability con,” a term coined by the second author of the NEJM article, Doron Dorfman, a professor at Seton Hall Law School in Newark, N.J.
“Nowadays, when people think disability, they immediately think fraud,” he said.
Prof. Dorfman thinks the perception that many people are faking disabilities to gain an unfair advantage is the biggest barrier for anyone seeking help. The disability system is “preventing people who deserve legal rights from actually obtaining them,” he said.
He urged doctors to believe their patients. One way is to try to “translate the person’s narrative into medical language.”
His coauthor Dr. Berger did not agree with the argument that doctors cannot diagnose without tests.
“Any clinician knows that lab tests are not everything,” he said. “There are conditions that don’t have specific biomarkers that we diagnose all the time.” He cited acquired pneumonia and urinary tract infections as examples.
Benefits lawyers have taken note of the complexities for people with long COVID who seek help through the ADA and federal disability program.
One law firm noted: “The government safety net is not designed to help an emerging disease with no clear diagnosis or treatment plans. Insurance carriers are denying claims, and long-term disability benefits are being denied.”
About 16 million working-age Americans have long COVID, according to an update of a 2022 report by the Brookings Institute. Up to 4 million of these people are out of work because of the condition, the study found. The research is based on newly collected U.S. Census Bureau data that show 24% of those with long COVID report “significant activity limitations.”
Dr. Ely said he sees progress in this area. Many of these issues have come up at the committee convened by the National Academy of Science to look at the working definition of long COVID. NAS, a Washington research group, held a public meeting on their findings on June 22.
A version of this article first appeared on Medscape.com.
As millions of Americans face another year of long COVID, some are finding they are unable to return to work or cannot work as they did before they got sick and are turning to doctors for help with documenting their disability.
For those who can return to work, a doctor’s diagnosis of long COVID is key to gaining access to workplace accommodations, such as working flex hours or remotely. For those who cannot work, a note from the doctor is the first step to collecting disability payments.
With no definitive blood tests or scans for long COVID that could confirm a diagnosis, some say doctors may feel uncomfortable in this role, which puts them in a tough spot, said Wes Ely, MD, MPH, codirector of the critical illness, brain dysfunction and survivorship center at Vanderbilt University, Nashville, Tenn.
Doctors typically are not taught to deal with vagueness in diagnostics.
“Long COVID falls straight into the gray zone,” he said. There are no tests and a long list of common symptoms. “It makes a lot of doctors feel super insecure,” he said.
Now, patients and their advocates are calling for doctors to be more open-minded about how they assess those with long COVID and other chronic illnesses. Although their disability may not be visible, many with long COVID struggle to function. If they need help, they say, they need a doctor to confirm their limitations – test results or no test results.
Better documentation of patient-reported symptoms would go a long way, according to a perspective published in The New England Journal of Medicine.
“There’s a long history of people with disabilities being forced to ask doctors to legitimize their symptoms,” said study author Zackary Berger, MD, PhD, Johns Hopkins University, Baltimore, Md. Dr. Berger believes doctors should learn to listen more closely to patients, turn their narratives into patient notes, and use the new International Classification of Diseases 10 (ICD-10) code, a worldwide system for identifying and generating data on diseases, when they diagnose long COVID. He also thinks doctors should become advocates for their patients.
The Americans With Disabilities Act allows employers to request medical proof of disability, “and thereby assigns physicians the gate-keeping role of determining patients’ eligibility for reasonable accommodations,” according to the analysis. Those accommodations may mean a handicapped parking space or extra days working remotely.
Without a definitive diagnostic test, long COVID joins fibromyalgia and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), which lack biomarkers or imaging tests to support a diagnosis, they write.
“These diagnoses are therefore contentious, and government agencies, employers, and many physicians do not accept these conditions as real,” they write.
Physicians make a good faith effort in trying to understand long COVID, but both doctors and the courts like to see evidence, said Michael Ashley Stein, JD, PHD, director of the Harvard Law School Project on Disability. Dr. Stein and others say that doctors should listen closely to their patients’ descriptions of their symptoms.
“In the absence of agreed-upon biomarkers, doctors need to listen to their patients and look for other [indications] and other consistent evidence of conditions, and then work from there rather than dismiss the existence of these conditions,” he said.
Dr. Ely said he and others were taught in medical school that if it doesn’t come up on a diagnostic test, there’s no problem. “I am absolutely complicit,” he said. “I’m part of the community that did that for so many years.”
Dr. Ely agreed that the demand for clinical test results does not work for long COVID and chronic diseases such as ME/CFS. People come in with complaints and they get a typical medical workup with labs, he said, and the labs look normal on paper.
“And [the doctor is] thinking: ‘I don’t know what is wrong with this person and there’s nothing on paper I can treat. I don’t know if I even believe in long COVID.’ ”
At the same time, patients might need support from a doctor to get accommodations at work under the ADA, such as flexible hours. Or doctors’ notes may be required if a patient is trying to collect private disability insurance, workers compensation, or federal disability payments through Social Security.
The U.S. Centers for Disease Control and Prevention guidelines on diagnosing long COVID, updated last December, point out that normal laboratory or imaging findings do not rule out long COVID.
In addition, 12 key symptoms of long COVID were identified in May by scientists working with the RECOVER Initiative, the federal government’s long COVID research program. These symptoms include fatigue, brain fog, dizziness, gastrointestinal symptoms, loss of or change in smell or taste, chest pain, and abnormal movements.
Still, patients with long COVID seeking help also face the “disability con,” a term coined by the second author of the NEJM article, Doron Dorfman, a professor at Seton Hall Law School in Newark, N.J.
“Nowadays, when people think disability, they immediately think fraud,” he said.
Prof. Dorfman thinks the perception that many people are faking disabilities to gain an unfair advantage is the biggest barrier for anyone seeking help. The disability system is “preventing people who deserve legal rights from actually obtaining them,” he said.
He urged doctors to believe their patients. One way is to try to “translate the person’s narrative into medical language.”
His coauthor Dr. Berger did not agree with the argument that doctors cannot diagnose without tests.
“Any clinician knows that lab tests are not everything,” he said. “There are conditions that don’t have specific biomarkers that we diagnose all the time.” He cited acquired pneumonia and urinary tract infections as examples.
Benefits lawyers have taken note of the complexities for people with long COVID who seek help through the ADA and federal disability program.
One law firm noted: “The government safety net is not designed to help an emerging disease with no clear diagnosis or treatment plans. Insurance carriers are denying claims, and long-term disability benefits are being denied.”
About 16 million working-age Americans have long COVID, according to an update of a 2022 report by the Brookings Institute. Up to 4 million of these people are out of work because of the condition, the study found. The research is based on newly collected U.S. Census Bureau data that show 24% of those with long COVID report “significant activity limitations.”
Dr. Ely said he sees progress in this area. Many of these issues have come up at the committee convened by the National Academy of Science to look at the working definition of long COVID. NAS, a Washington research group, held a public meeting on their findings on June 22.
A version of this article first appeared on Medscape.com.
As millions of Americans face another year of long COVID, some are finding they are unable to return to work or cannot work as they did before they got sick and are turning to doctors for help with documenting their disability.
For those who can return to work, a doctor’s diagnosis of long COVID is key to gaining access to workplace accommodations, such as working flex hours or remotely. For those who cannot work, a note from the doctor is the first step to collecting disability payments.
With no definitive blood tests or scans for long COVID that could confirm a diagnosis, some say doctors may feel uncomfortable in this role, which puts them in a tough spot, said Wes Ely, MD, MPH, codirector of the critical illness, brain dysfunction and survivorship center at Vanderbilt University, Nashville, Tenn.
Doctors typically are not taught to deal with vagueness in diagnostics.
“Long COVID falls straight into the gray zone,” he said. There are no tests and a long list of common symptoms. “It makes a lot of doctors feel super insecure,” he said.
Now, patients and their advocates are calling for doctors to be more open-minded about how they assess those with long COVID and other chronic illnesses. Although their disability may not be visible, many with long COVID struggle to function. If they need help, they say, they need a doctor to confirm their limitations – test results or no test results.
Better documentation of patient-reported symptoms would go a long way, according to a perspective published in The New England Journal of Medicine.
“There’s a long history of people with disabilities being forced to ask doctors to legitimize their symptoms,” said study author Zackary Berger, MD, PhD, Johns Hopkins University, Baltimore, Md. Dr. Berger believes doctors should learn to listen more closely to patients, turn their narratives into patient notes, and use the new International Classification of Diseases 10 (ICD-10) code, a worldwide system for identifying and generating data on diseases, when they diagnose long COVID. He also thinks doctors should become advocates for their patients.
The Americans With Disabilities Act allows employers to request medical proof of disability, “and thereby assigns physicians the gate-keeping role of determining patients’ eligibility for reasonable accommodations,” according to the analysis. Those accommodations may mean a handicapped parking space or extra days working remotely.
Without a definitive diagnostic test, long COVID joins fibromyalgia and ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), which lack biomarkers or imaging tests to support a diagnosis, they write.
“These diagnoses are therefore contentious, and government agencies, employers, and many physicians do not accept these conditions as real,” they write.
Physicians make a good faith effort in trying to understand long COVID, but both doctors and the courts like to see evidence, said Michael Ashley Stein, JD, PHD, director of the Harvard Law School Project on Disability. Dr. Stein and others say that doctors should listen closely to their patients’ descriptions of their symptoms.
“In the absence of agreed-upon biomarkers, doctors need to listen to their patients and look for other [indications] and other consistent evidence of conditions, and then work from there rather than dismiss the existence of these conditions,” he said.
Dr. Ely said he and others were taught in medical school that if it doesn’t come up on a diagnostic test, there’s no problem. “I am absolutely complicit,” he said. “I’m part of the community that did that for so many years.”
Dr. Ely agreed that the demand for clinical test results does not work for long COVID and chronic diseases such as ME/CFS. People come in with complaints and they get a typical medical workup with labs, he said, and the labs look normal on paper.
“And [the doctor is] thinking: ‘I don’t know what is wrong with this person and there’s nothing on paper I can treat. I don’t know if I even believe in long COVID.’ ”
At the same time, patients might need support from a doctor to get accommodations at work under the ADA, such as flexible hours. Or doctors’ notes may be required if a patient is trying to collect private disability insurance, workers compensation, or federal disability payments through Social Security.
The U.S. Centers for Disease Control and Prevention guidelines on diagnosing long COVID, updated last December, point out that normal laboratory or imaging findings do not rule out long COVID.
In addition, 12 key symptoms of long COVID were identified in May by scientists working with the RECOVER Initiative, the federal government’s long COVID research program. These symptoms include fatigue, brain fog, dizziness, gastrointestinal symptoms, loss of or change in smell or taste, chest pain, and abnormal movements.
Still, patients with long COVID seeking help also face the “disability con,” a term coined by the second author of the NEJM article, Doron Dorfman, a professor at Seton Hall Law School in Newark, N.J.
“Nowadays, when people think disability, they immediately think fraud,” he said.
Prof. Dorfman thinks the perception that many people are faking disabilities to gain an unfair advantage is the biggest barrier for anyone seeking help. The disability system is “preventing people who deserve legal rights from actually obtaining them,” he said.
He urged doctors to believe their patients. One way is to try to “translate the person’s narrative into medical language.”
His coauthor Dr. Berger did not agree with the argument that doctors cannot diagnose without tests.
“Any clinician knows that lab tests are not everything,” he said. “There are conditions that don’t have specific biomarkers that we diagnose all the time.” He cited acquired pneumonia and urinary tract infections as examples.
Benefits lawyers have taken note of the complexities for people with long COVID who seek help through the ADA and federal disability program.
One law firm noted: “The government safety net is not designed to help an emerging disease with no clear diagnosis or treatment plans. Insurance carriers are denying claims, and long-term disability benefits are being denied.”
About 16 million working-age Americans have long COVID, according to an update of a 2022 report by the Brookings Institute. Up to 4 million of these people are out of work because of the condition, the study found. The research is based on newly collected U.S. Census Bureau data that show 24% of those with long COVID report “significant activity limitations.”
Dr. Ely said he sees progress in this area. Many of these issues have come up at the committee convened by the National Academy of Science to look at the working definition of long COVID. NAS, a Washington research group, held a public meeting on their findings on June 22.
A version of this article first appeared on Medscape.com.
FROM THE NEW ENGLAND JOURNAL OF MEDICINE
Long COVID mobile monitoring study hunts for answers
A new federal research project aims to answer lingering questions about long COVID using mobile monitoring devices to help track the condition.
The federally funded RECOVER Initiative expects to give out 10,000 sensors to people with long COVID to collect data in real time.
The hope is that researchers will be able to provide doctors and patients with a wealth of information to address gaps in knowledge about long COVID.
The project takes advantage of the approach other researchers have used to track patients’ health data on heart rate, exercise, and more using mobile monitoring devices such as Fitbits, smartwatches, and other remote sensors.
Researchers believe the initiative could be particularly useful for people with long COVID – whose symptoms come and go. They can use a wristband sensor to passively collect data in real time.
For a condition defined by its symptoms, that kind of data promises to be useful, experts said.
But not everyone has room in their budget for a smartwatch or a fitness tracker. Until recently, most clinical trials were BYOD: Bring your own device. At a time when researchers are trying to make sure that clinical trials reflect the diversity of the population, that leaves a lot of people out.
So, researchers are starting to supply subjects with their own monitors. The RECOVER Initiative expects to give out 10,000 sensors to people who are eligible based on race/ethnicity, income, and other demographic factors (rural residents for example). After 2 months, all people in the RECOVER study over the age of 13 will be eligible for the sensors.
The federal program builds on earlier research at places like The Scripps Institute, a center of research into remote monitoring. The institute supplied 7,000 monitors to people in an arm of the All of Us study, a 5-year-old multisite cohort that aims to collect medical information from 1 million people.
The devices went to people who have been historically underrepresented in biomedical research, said Scripps researchers, who plan to give out more this year.
In March of 2023, Scripps researchers published a study on the tracking data that found a significant post-COVID-19 drop in physical activity. But the data are incomplete because many people can’t always afford these devices. Most of the people in the study were “White, young, and active,” they wrote.
Researchers at an All of Us site at Vanderbilt University, which also used a BYOD approach, realized that they produced biased results. They reported their findings at the Pacific Symposium on Biocomputing in January.
“[The] majority of participants who provided Fitbit data reported being White and employed for wages,” they said. “However, these data represent participants who had their own Fitbit devices and consented to share EHR [electronic health record] data.”
Their solution: The program has begun providing Fitbit devices to all study participants who do not own one or cannot afford one.
Now, the web page for the All of Us study asks visitors to “Learn about the All of Us WEAR study. You could get a Fitbit at no cost! … As a part of the WEAR Study, you could receive a new Fitbit to wear at no cost to you. All of Us will be able to get the data the Fitbit collects. This data may help us understand how behavior impacts health.”
Jennifer Radin, PhD, an epidemiologist at Scripps Research Translational Institute, is heading up the DETECT study, which is a remote monitoring research project that has enrolled over 40,000 people who have their own sensors – be it a smartwatch or Fitbit. She was looking at remote monitoring for disease before COVID emerged.
Dr. Radin said she began researching remote sensing after working in public health and dealing with outdated data collection systems.
“They typically rely on case reports that are recorded by pen and paper and faxed or mailed in,” she said. “Then, they have to be entered into a database. “
In addition to offering objective data on a subject’s physical response to the infection, she said, the data collection can be long-term and continuous.
DETECT collects data on resting heart rate, which is unique to every person, and activity levels. Both measures are meaningful for those with long COVID. Her research found differences in sleep, heart rate, and activity between those with COVID and those without.
Joseph Kvedar, MD, is a Harvard Medical School researcher and the editor of NPJ Digital Medicine. He’s been studying digital health systems and called clinical research a “beachhead” for the use of data from monitors. But he also said problems remain that need to be worked out. The quality of the devices and their Bluetooth connections are better. But different devices measure different things, and a counted step can vary from person to person, he said. And the problems of the early days of electronic health records have not been fully resolved.
“We haven’t gotten to this universal language to connect all these things and make them relevant,” he said.
The All of Us researchers are working with the RECOVER project to address some of those issues. Usually not focused on a single condition, the All of Us researchers are testing a machine-learning approach for identifying long COVID.
A version of this article originally appeared on WebMD.com.
A new federal research project aims to answer lingering questions about long COVID using mobile monitoring devices to help track the condition.
The federally funded RECOVER Initiative expects to give out 10,000 sensors to people with long COVID to collect data in real time.
The hope is that researchers will be able to provide doctors and patients with a wealth of information to address gaps in knowledge about long COVID.
The project takes advantage of the approach other researchers have used to track patients’ health data on heart rate, exercise, and more using mobile monitoring devices such as Fitbits, smartwatches, and other remote sensors.
Researchers believe the initiative could be particularly useful for people with long COVID – whose symptoms come and go. They can use a wristband sensor to passively collect data in real time.
For a condition defined by its symptoms, that kind of data promises to be useful, experts said.
But not everyone has room in their budget for a smartwatch or a fitness tracker. Until recently, most clinical trials were BYOD: Bring your own device. At a time when researchers are trying to make sure that clinical trials reflect the diversity of the population, that leaves a lot of people out.
So, researchers are starting to supply subjects with their own monitors. The RECOVER Initiative expects to give out 10,000 sensors to people who are eligible based on race/ethnicity, income, and other demographic factors (rural residents for example). After 2 months, all people in the RECOVER study over the age of 13 will be eligible for the sensors.
The federal program builds on earlier research at places like The Scripps Institute, a center of research into remote monitoring. The institute supplied 7,000 monitors to people in an arm of the All of Us study, a 5-year-old multisite cohort that aims to collect medical information from 1 million people.
The devices went to people who have been historically underrepresented in biomedical research, said Scripps researchers, who plan to give out more this year.
In March of 2023, Scripps researchers published a study on the tracking data that found a significant post-COVID-19 drop in physical activity. But the data are incomplete because many people can’t always afford these devices. Most of the people in the study were “White, young, and active,” they wrote.
Researchers at an All of Us site at Vanderbilt University, which also used a BYOD approach, realized that they produced biased results. They reported their findings at the Pacific Symposium on Biocomputing in January.
“[The] majority of participants who provided Fitbit data reported being White and employed for wages,” they said. “However, these data represent participants who had their own Fitbit devices and consented to share EHR [electronic health record] data.”
Their solution: The program has begun providing Fitbit devices to all study participants who do not own one or cannot afford one.
Now, the web page for the All of Us study asks visitors to “Learn about the All of Us WEAR study. You could get a Fitbit at no cost! … As a part of the WEAR Study, you could receive a new Fitbit to wear at no cost to you. All of Us will be able to get the data the Fitbit collects. This data may help us understand how behavior impacts health.”
Jennifer Radin, PhD, an epidemiologist at Scripps Research Translational Institute, is heading up the DETECT study, which is a remote monitoring research project that has enrolled over 40,000 people who have their own sensors – be it a smartwatch or Fitbit. She was looking at remote monitoring for disease before COVID emerged.
Dr. Radin said she began researching remote sensing after working in public health and dealing with outdated data collection systems.
“They typically rely on case reports that are recorded by pen and paper and faxed or mailed in,” she said. “Then, they have to be entered into a database. “
In addition to offering objective data on a subject’s physical response to the infection, she said, the data collection can be long-term and continuous.
DETECT collects data on resting heart rate, which is unique to every person, and activity levels. Both measures are meaningful for those with long COVID. Her research found differences in sleep, heart rate, and activity between those with COVID and those without.
Joseph Kvedar, MD, is a Harvard Medical School researcher and the editor of NPJ Digital Medicine. He’s been studying digital health systems and called clinical research a “beachhead” for the use of data from monitors. But he also said problems remain that need to be worked out. The quality of the devices and their Bluetooth connections are better. But different devices measure different things, and a counted step can vary from person to person, he said. And the problems of the early days of electronic health records have not been fully resolved.
“We haven’t gotten to this universal language to connect all these things and make them relevant,” he said.
The All of Us researchers are working with the RECOVER project to address some of those issues. Usually not focused on a single condition, the All of Us researchers are testing a machine-learning approach for identifying long COVID.
A version of this article originally appeared on WebMD.com.
A new federal research project aims to answer lingering questions about long COVID using mobile monitoring devices to help track the condition.
The federally funded RECOVER Initiative expects to give out 10,000 sensors to people with long COVID to collect data in real time.
The hope is that researchers will be able to provide doctors and patients with a wealth of information to address gaps in knowledge about long COVID.
The project takes advantage of the approach other researchers have used to track patients’ health data on heart rate, exercise, and more using mobile monitoring devices such as Fitbits, smartwatches, and other remote sensors.
Researchers believe the initiative could be particularly useful for people with long COVID – whose symptoms come and go. They can use a wristband sensor to passively collect data in real time.
For a condition defined by its symptoms, that kind of data promises to be useful, experts said.
But not everyone has room in their budget for a smartwatch or a fitness tracker. Until recently, most clinical trials were BYOD: Bring your own device. At a time when researchers are trying to make sure that clinical trials reflect the diversity of the population, that leaves a lot of people out.
So, researchers are starting to supply subjects with their own monitors. The RECOVER Initiative expects to give out 10,000 sensors to people who are eligible based on race/ethnicity, income, and other demographic factors (rural residents for example). After 2 months, all people in the RECOVER study over the age of 13 will be eligible for the sensors.
The federal program builds on earlier research at places like The Scripps Institute, a center of research into remote monitoring. The institute supplied 7,000 monitors to people in an arm of the All of Us study, a 5-year-old multisite cohort that aims to collect medical information from 1 million people.
The devices went to people who have been historically underrepresented in biomedical research, said Scripps researchers, who plan to give out more this year.
In March of 2023, Scripps researchers published a study on the tracking data that found a significant post-COVID-19 drop in physical activity. But the data are incomplete because many people can’t always afford these devices. Most of the people in the study were “White, young, and active,” they wrote.
Researchers at an All of Us site at Vanderbilt University, which also used a BYOD approach, realized that they produced biased results. They reported their findings at the Pacific Symposium on Biocomputing in January.
“[The] majority of participants who provided Fitbit data reported being White and employed for wages,” they said. “However, these data represent participants who had their own Fitbit devices and consented to share EHR [electronic health record] data.”
Their solution: The program has begun providing Fitbit devices to all study participants who do not own one or cannot afford one.
Now, the web page for the All of Us study asks visitors to “Learn about the All of Us WEAR study. You could get a Fitbit at no cost! … As a part of the WEAR Study, you could receive a new Fitbit to wear at no cost to you. All of Us will be able to get the data the Fitbit collects. This data may help us understand how behavior impacts health.”
Jennifer Radin, PhD, an epidemiologist at Scripps Research Translational Institute, is heading up the DETECT study, which is a remote monitoring research project that has enrolled over 40,000 people who have their own sensors – be it a smartwatch or Fitbit. She was looking at remote monitoring for disease before COVID emerged.
Dr. Radin said she began researching remote sensing after working in public health and dealing with outdated data collection systems.
“They typically rely on case reports that are recorded by pen and paper and faxed or mailed in,” she said. “Then, they have to be entered into a database. “
In addition to offering objective data on a subject’s physical response to the infection, she said, the data collection can be long-term and continuous.
DETECT collects data on resting heart rate, which is unique to every person, and activity levels. Both measures are meaningful for those with long COVID. Her research found differences in sleep, heart rate, and activity between those with COVID and those without.
Joseph Kvedar, MD, is a Harvard Medical School researcher and the editor of NPJ Digital Medicine. He’s been studying digital health systems and called clinical research a “beachhead” for the use of data from monitors. But he also said problems remain that need to be worked out. The quality of the devices and their Bluetooth connections are better. But different devices measure different things, and a counted step can vary from person to person, he said. And the problems of the early days of electronic health records have not been fully resolved.
“We haven’t gotten to this universal language to connect all these things and make them relevant,” he said.
The All of Us researchers are working with the RECOVER project to address some of those issues. Usually not focused on a single condition, the All of Us researchers are testing a machine-learning approach for identifying long COVID.
A version of this article originally appeared on WebMD.com.