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Five Keys to Helping Long-COVID Patients Recover
About 7% of US adults report having or having had symptoms of long COVID such as fatigue, heart palpitations and/or dizziness. These are 3 of the 12 symptoms identified as part of the National Institute of Health’s RECOVER initiative that can be reliably used to classify someone as having long COVID.
The good news is that many people experience improvements in their symptoms over time by adopting these strategies, said Andrew Schamess, MD, an internal medicine physician at the Ohio State University Wexner Medical Center and director of its Post-COVID Recovery Program.
1. Pace yourself.
Fatigue and postexertional malaise are 2 of the 12 symptoms used to classify someone as having long COVID.
“There’s mental, or cognitive, fatigue, where people become exhausted after any span of time trying to do complicated cognitive tasks,” said Dr. Schamess. “There’s also general fatigue, or sleepiness, where after a few hours you feel like you could go right back to sleep.”
The third category, he added, is postexertional malaise, where patients are exhausted by exercise, either immediately or up to 24-48 hours later.
That’s where a technique known as “pacing” can help. Pacing is an energy-conservation technique often used among people with other disabling conditions, such as chronic fatigue syndrome, said Ravindra Ganesh, MD, an internal medicine physician at the Mayo Clinic in Minnesota who specializes in long COVID.
“I tell patients that they have to figure out what their energy envelope is, which is the fixed amount of energy that they can use every day without crashing,” he said.
You may be able to handle a daily 30-minute walk, for example, but if you pair it with something cognitively difficult, such as doing your taxes, your fatigue symptoms may flare up.
“It’s hard advice for my patients to follow, as most are real go-getters,” he said. “But I point out to them that if they aim to minimize crashes, it will help them make slow progress.”
Over time, he said, their energy levels should gradually rise so that they can engage in more and more activity.
2. Follow a plant-based, anti-inflammatory diet.
There’s no research to suggest that following a certain eating pattern will help to reverse long COVID, said Dr. Ganesh. But in general, he said his patients anecdotally report that they feel better when they limit refined sugar and follow a plant-based diet that can help to lower inflammation in the body.
“It makes sense, because it prevents dramatic blood glucose changes that can cause their body to crash,” he said. He generally recommends an anti-inflammatory diet like the Mediterranean diet, which is rich in fruits, vegetables, whole grains, and mono-unsaturated fat.
Many people with long COVID take an array of supplements, Dr. Ganesh said, although there’s little research to suggest that they may help. He does encourage patients to take about 2 g of an omega-3 supplement, such as fish oil, as it may help to reduce inflammation associated with long COVID.
He also recommends fisetin, a dietary flavonoid found in fruits such as strawberries and kiwis. Preliminary research suggests that it may help to combat some of the neurologic damage associated with long COVID.
“It appears to maintain mitochondrial function and has anti-inflammatory activities,” said Dr. Ganesh.
3. Modify exercise.
Most of the time, exercise boosts health and reduces risk for certain diseases. But this strategy may not work for people who have certain symptoms from long COVID, such as postexertional malaise or postural orthostatic tachycardia syndrome (POTS), a condition that causes symptoms such as a fast heart rate, dizziness, and fatigue when transitioning from lying down to standing up.
“With long-COVID patients, it often has to be symptom-titrated exercise,” said Dr. Schamess. This means physical activity needs to be constantly monitored and adjusted on the basis of a patient’s symptoms. “We need to figure out what they can do that doesn’t provoke their symptoms,” he explained.
Dr. Schamess often recommends that patients with long COVID, at least initially, focus on exercises in which they are sitting (such as cycling) or prone.
“The key thing is most people with long COVID can do a lot more exercise in a sitting or lying position than a standing position,” he said. “It’s baffling to them that they can’t walk two blocks but can bike 10 miles.”
For symptoms like fatigue or postexertional malaise, Dr. Schamess often refers patients to physical therapy to develop an individualized exercise program. A 2022 study published in Scandinavian Journal of Medicine & Science in Sports found that when long-COVID patients completed an 8-week program of three exercise sessions per week, they experienced significant improvements in quality of life, fatigue, muscle strength, and overall fitness compared with a control group.
“It’s important to make sure that workouts are supervised, so that they can be modified as necessary” said Dr. Schamess.
4. Take steps to improve sleep quality.
A 2023 study published in the Journal of General Internal Medicine found that about 40% of people with long COVID report sleep issues such as insomnia or not feeling refreshed in the morning.
“Sleep may become challenging, which can be frustrating for a patient with long COVID who desperately needs rest,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center in New York City.
Some of the simplest ways to improve sleep are common sense; however, these issues never affected the person pre-COVID, so they have to become new habits.
“A lot of my patients with long COVID find that they are more sensitive to caffeine, so they really can’t have it anymore later in the day,” he said. “The same goes for bright screens” such as those on cell phones, tablets, and e-book readers, he said. “They may find that it’s harder for them to fall and stay asleep if they’re on their iPhone right before bed. These are all things that may not have been issues before they were diagnosed with long COVID.”
Dr. Purpura also said that he encourages his patients to practice mindfulness or relaxation exercises before bed, such as deep breathing. One technique he recommends is called box breathing, where the patient inhales for 4 seconds, holds his or her breath for 4 seconds, exhales for 4 seconds, then holds his or her breath again for 4 seconds. Some research suggests that this paced breathing technique, when done for 20 minutes before bed, helps to improve symptoms of insomnia.
While sleep medications such as zolpidem (Ambien) are often used as short-term relief for insomnia, Dr. Schamess said he has not found them particularly helpful for sleep issues that stem from long COVID.
“They help patients fall asleep but not necessarily stay asleep, which can be an issue for people with long COVID,” he said.
5. Consider medications.
No standard drugs or treatments have yet been approved to treat long COVID (although some, such as Paxlovid, are in clinical trials). But some medications may help to relieve symptoms, said Dr. Ganesh. These include:
- Blood pressure drugs such as beta-blockers now used to treat POTS symptoms
- Nerve-pain medications such as gabapentin or pregabalin. “These can also help with sleep, since patients don’t have pain to distract them,” said Dr. Ganesh.
- Low-dose naltrexone to help with fatigue
“There’s not a one-size-fits-all approach to treat long-COVID symptoms,” said Dr. Ganesh. “You really need to work with the patient and possibly even cycle through several different medications before you find one that helps.”
A version of this article appeared on Medscape.com.
About 7% of US adults report having or having had symptoms of long COVID such as fatigue, heart palpitations and/or dizziness. These are 3 of the 12 symptoms identified as part of the National Institute of Health’s RECOVER initiative that can be reliably used to classify someone as having long COVID.
The good news is that many people experience improvements in their symptoms over time by adopting these strategies, said Andrew Schamess, MD, an internal medicine physician at the Ohio State University Wexner Medical Center and director of its Post-COVID Recovery Program.
1. Pace yourself.
Fatigue and postexertional malaise are 2 of the 12 symptoms used to classify someone as having long COVID.
“There’s mental, or cognitive, fatigue, where people become exhausted after any span of time trying to do complicated cognitive tasks,” said Dr. Schamess. “There’s also general fatigue, or sleepiness, where after a few hours you feel like you could go right back to sleep.”
The third category, he added, is postexertional malaise, where patients are exhausted by exercise, either immediately or up to 24-48 hours later.
That’s where a technique known as “pacing” can help. Pacing is an energy-conservation technique often used among people with other disabling conditions, such as chronic fatigue syndrome, said Ravindra Ganesh, MD, an internal medicine physician at the Mayo Clinic in Minnesota who specializes in long COVID.
“I tell patients that they have to figure out what their energy envelope is, which is the fixed amount of energy that they can use every day without crashing,” he said.
You may be able to handle a daily 30-minute walk, for example, but if you pair it with something cognitively difficult, such as doing your taxes, your fatigue symptoms may flare up.
“It’s hard advice for my patients to follow, as most are real go-getters,” he said. “But I point out to them that if they aim to minimize crashes, it will help them make slow progress.”
Over time, he said, their energy levels should gradually rise so that they can engage in more and more activity.
2. Follow a plant-based, anti-inflammatory diet.
There’s no research to suggest that following a certain eating pattern will help to reverse long COVID, said Dr. Ganesh. But in general, he said his patients anecdotally report that they feel better when they limit refined sugar and follow a plant-based diet that can help to lower inflammation in the body.
“It makes sense, because it prevents dramatic blood glucose changes that can cause their body to crash,” he said. He generally recommends an anti-inflammatory diet like the Mediterranean diet, which is rich in fruits, vegetables, whole grains, and mono-unsaturated fat.
Many people with long COVID take an array of supplements, Dr. Ganesh said, although there’s little research to suggest that they may help. He does encourage patients to take about 2 g of an omega-3 supplement, such as fish oil, as it may help to reduce inflammation associated with long COVID.
He also recommends fisetin, a dietary flavonoid found in fruits such as strawberries and kiwis. Preliminary research suggests that it may help to combat some of the neurologic damage associated with long COVID.
“It appears to maintain mitochondrial function and has anti-inflammatory activities,” said Dr. Ganesh.
3. Modify exercise.
Most of the time, exercise boosts health and reduces risk for certain diseases. But this strategy may not work for people who have certain symptoms from long COVID, such as postexertional malaise or postural orthostatic tachycardia syndrome (POTS), a condition that causes symptoms such as a fast heart rate, dizziness, and fatigue when transitioning from lying down to standing up.
“With long-COVID patients, it often has to be symptom-titrated exercise,” said Dr. Schamess. This means physical activity needs to be constantly monitored and adjusted on the basis of a patient’s symptoms. “We need to figure out what they can do that doesn’t provoke their symptoms,” he explained.
Dr. Schamess often recommends that patients with long COVID, at least initially, focus on exercises in which they are sitting (such as cycling) or prone.
“The key thing is most people with long COVID can do a lot more exercise in a sitting or lying position than a standing position,” he said. “It’s baffling to them that they can’t walk two blocks but can bike 10 miles.”
For symptoms like fatigue or postexertional malaise, Dr. Schamess often refers patients to physical therapy to develop an individualized exercise program. A 2022 study published in Scandinavian Journal of Medicine & Science in Sports found that when long-COVID patients completed an 8-week program of three exercise sessions per week, they experienced significant improvements in quality of life, fatigue, muscle strength, and overall fitness compared with a control group.
“It’s important to make sure that workouts are supervised, so that they can be modified as necessary” said Dr. Schamess.
4. Take steps to improve sleep quality.
A 2023 study published in the Journal of General Internal Medicine found that about 40% of people with long COVID report sleep issues such as insomnia or not feeling refreshed in the morning.
“Sleep may become challenging, which can be frustrating for a patient with long COVID who desperately needs rest,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center in New York City.
Some of the simplest ways to improve sleep are common sense; however, these issues never affected the person pre-COVID, so they have to become new habits.
“A lot of my patients with long COVID find that they are more sensitive to caffeine, so they really can’t have it anymore later in the day,” he said. “The same goes for bright screens” such as those on cell phones, tablets, and e-book readers, he said. “They may find that it’s harder for them to fall and stay asleep if they’re on their iPhone right before bed. These are all things that may not have been issues before they were diagnosed with long COVID.”
Dr. Purpura also said that he encourages his patients to practice mindfulness or relaxation exercises before bed, such as deep breathing. One technique he recommends is called box breathing, where the patient inhales for 4 seconds, holds his or her breath for 4 seconds, exhales for 4 seconds, then holds his or her breath again for 4 seconds. Some research suggests that this paced breathing technique, when done for 20 minutes before bed, helps to improve symptoms of insomnia.
While sleep medications such as zolpidem (Ambien) are often used as short-term relief for insomnia, Dr. Schamess said he has not found them particularly helpful for sleep issues that stem from long COVID.
“They help patients fall asleep but not necessarily stay asleep, which can be an issue for people with long COVID,” he said.
5. Consider medications.
No standard drugs or treatments have yet been approved to treat long COVID (although some, such as Paxlovid, are in clinical trials). But some medications may help to relieve symptoms, said Dr. Ganesh. These include:
- Blood pressure drugs such as beta-blockers now used to treat POTS symptoms
- Nerve-pain medications such as gabapentin or pregabalin. “These can also help with sleep, since patients don’t have pain to distract them,” said Dr. Ganesh.
- Low-dose naltrexone to help with fatigue
“There’s not a one-size-fits-all approach to treat long-COVID symptoms,” said Dr. Ganesh. “You really need to work with the patient and possibly even cycle through several different medications before you find one that helps.”
A version of this article appeared on Medscape.com.
About 7% of US adults report having or having had symptoms of long COVID such as fatigue, heart palpitations and/or dizziness. These are 3 of the 12 symptoms identified as part of the National Institute of Health’s RECOVER initiative that can be reliably used to classify someone as having long COVID.
The good news is that many people experience improvements in their symptoms over time by adopting these strategies, said Andrew Schamess, MD, an internal medicine physician at the Ohio State University Wexner Medical Center and director of its Post-COVID Recovery Program.
1. Pace yourself.
Fatigue and postexertional malaise are 2 of the 12 symptoms used to classify someone as having long COVID.
“There’s mental, or cognitive, fatigue, where people become exhausted after any span of time trying to do complicated cognitive tasks,” said Dr. Schamess. “There’s also general fatigue, or sleepiness, where after a few hours you feel like you could go right back to sleep.”
The third category, he added, is postexertional malaise, where patients are exhausted by exercise, either immediately or up to 24-48 hours later.
That’s where a technique known as “pacing” can help. Pacing is an energy-conservation technique often used among people with other disabling conditions, such as chronic fatigue syndrome, said Ravindra Ganesh, MD, an internal medicine physician at the Mayo Clinic in Minnesota who specializes in long COVID.
“I tell patients that they have to figure out what their energy envelope is, which is the fixed amount of energy that they can use every day without crashing,” he said.
You may be able to handle a daily 30-minute walk, for example, but if you pair it with something cognitively difficult, such as doing your taxes, your fatigue symptoms may flare up.
“It’s hard advice for my patients to follow, as most are real go-getters,” he said. “But I point out to them that if they aim to minimize crashes, it will help them make slow progress.”
Over time, he said, their energy levels should gradually rise so that they can engage in more and more activity.
2. Follow a plant-based, anti-inflammatory diet.
There’s no research to suggest that following a certain eating pattern will help to reverse long COVID, said Dr. Ganesh. But in general, he said his patients anecdotally report that they feel better when they limit refined sugar and follow a plant-based diet that can help to lower inflammation in the body.
“It makes sense, because it prevents dramatic blood glucose changes that can cause their body to crash,” he said. He generally recommends an anti-inflammatory diet like the Mediterranean diet, which is rich in fruits, vegetables, whole grains, and mono-unsaturated fat.
Many people with long COVID take an array of supplements, Dr. Ganesh said, although there’s little research to suggest that they may help. He does encourage patients to take about 2 g of an omega-3 supplement, such as fish oil, as it may help to reduce inflammation associated with long COVID.
He also recommends fisetin, a dietary flavonoid found in fruits such as strawberries and kiwis. Preliminary research suggests that it may help to combat some of the neurologic damage associated with long COVID.
“It appears to maintain mitochondrial function and has anti-inflammatory activities,” said Dr. Ganesh.
3. Modify exercise.
Most of the time, exercise boosts health and reduces risk for certain diseases. But this strategy may not work for people who have certain symptoms from long COVID, such as postexertional malaise or postural orthostatic tachycardia syndrome (POTS), a condition that causes symptoms such as a fast heart rate, dizziness, and fatigue when transitioning from lying down to standing up.
“With long-COVID patients, it often has to be symptom-titrated exercise,” said Dr. Schamess. This means physical activity needs to be constantly monitored and adjusted on the basis of a patient’s symptoms. “We need to figure out what they can do that doesn’t provoke their symptoms,” he explained.
Dr. Schamess often recommends that patients with long COVID, at least initially, focus on exercises in which they are sitting (such as cycling) or prone.
“The key thing is most people with long COVID can do a lot more exercise in a sitting or lying position than a standing position,” he said. “It’s baffling to them that they can’t walk two blocks but can bike 10 miles.”
For symptoms like fatigue or postexertional malaise, Dr. Schamess often refers patients to physical therapy to develop an individualized exercise program. A 2022 study published in Scandinavian Journal of Medicine & Science in Sports found that when long-COVID patients completed an 8-week program of three exercise sessions per week, they experienced significant improvements in quality of life, fatigue, muscle strength, and overall fitness compared with a control group.
“It’s important to make sure that workouts are supervised, so that they can be modified as necessary” said Dr. Schamess.
4. Take steps to improve sleep quality.
A 2023 study published in the Journal of General Internal Medicine found that about 40% of people with long COVID report sleep issues such as insomnia or not feeling refreshed in the morning.
“Sleep may become challenging, which can be frustrating for a patient with long COVID who desperately needs rest,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center in New York City.
Some of the simplest ways to improve sleep are common sense; however, these issues never affected the person pre-COVID, so they have to become new habits.
“A lot of my patients with long COVID find that they are more sensitive to caffeine, so they really can’t have it anymore later in the day,” he said. “The same goes for bright screens” such as those on cell phones, tablets, and e-book readers, he said. “They may find that it’s harder for them to fall and stay asleep if they’re on their iPhone right before bed. These are all things that may not have been issues before they were diagnosed with long COVID.”
Dr. Purpura also said that he encourages his patients to practice mindfulness or relaxation exercises before bed, such as deep breathing. One technique he recommends is called box breathing, where the patient inhales for 4 seconds, holds his or her breath for 4 seconds, exhales for 4 seconds, then holds his or her breath again for 4 seconds. Some research suggests that this paced breathing technique, when done for 20 minutes before bed, helps to improve symptoms of insomnia.
While sleep medications such as zolpidem (Ambien) are often used as short-term relief for insomnia, Dr. Schamess said he has not found them particularly helpful for sleep issues that stem from long COVID.
“They help patients fall asleep but not necessarily stay asleep, which can be an issue for people with long COVID,” he said.
5. Consider medications.
No standard drugs or treatments have yet been approved to treat long COVID (although some, such as Paxlovid, are in clinical trials). But some medications may help to relieve symptoms, said Dr. Ganesh. These include:
- Blood pressure drugs such as beta-blockers now used to treat POTS symptoms
- Nerve-pain medications such as gabapentin or pregabalin. “These can also help with sleep, since patients don’t have pain to distract them,” said Dr. Ganesh.
- Low-dose naltrexone to help with fatigue
“There’s not a one-size-fits-all approach to treat long-COVID symptoms,” said Dr. Ganesh. “You really need to work with the patient and possibly even cycle through several different medications before you find one that helps.”
A version of this article appeared on Medscape.com.
Monoclonal Antibodies: A New Treatment for Long COVID?
A treatment used to treat acute COVID-19 infection has also been found to be effective against long COVID, a new small study has found. The research, which assessed the benefits of monoclonal antibodies, suggests relief may finally be ahead for millions of Americans with long COVID for whom treatment has remained elusive.
The study, published in the American Journal of Emergency Medicine, found
“We were struck by how rapid and complete the remissions were,” said study coauthor Paul Pepe, MD, MPH, a professor of management, policy, and community health at the School of Public Health at the University of Texas Health Sciences Center. “We found that no matter how long the patients were sick for — whether it was 5, 8, or 18 months — within 5 days, they appeared to be completely cured.”
All three patients had been initially infected with COVID-19 early in the pandemic, in 2020 or the first half of 2021. They were given Regeneron either after a reinfection or exposure to COVID-19, as a preventative, at state-run COVID clinics in Florida.
“In each case, the infusions were given to help prevent their long COVID from worsening,” said Dr. Pepe.
The researchers collected medical histories for all three patients, asking about symptoms such as physical fatigue, exercise intolerance, chest pain, heart palpitations, shortness of breath, cognitive fatigue, and memory problems. They asked patients to rate symptoms pre-COVID (baseline), during the long COVID phase, post-vaccine, and finally a week after their monoclonal antibody treatment. They also interviewed family members.
They found that across the board, symptoms improved significantly and often completely vanished. Their loved ones corroborated these reports as well.
One of the patients, a 63-year-old Floridian woman, came down with a mild case of COVID-19 at the start of the pandemic in March 2020 that lasted about 2 weeks. But several weeks later, she developed extreme, debilitating fatigue, along with chest pain and shortness of breath.
“I was chasing my 6-pound Yorkie one day after she got loose, and I was struck with such intense chest pain I fell down,” the woman, asking not to be identified, said in an interview.
Her symptoms progressed to the point where she no longer felt safe babysitting her grandchildren or driving to the grocery store.
“My short-term memory was completely gone. I couldn’t even read more than a paragraph at a time,” she said.
When she was exposed to COVID-19 in October 2021, her doctor suggested Regeneron as a preventative. She agreed to it.
“I was terrified that a second round would leave me permanently disabled and stuck in bed for the rest of my life,” she said.
About 4 days after her monoclonal antibody treatment, she noticed that some of the brain fog that had persisted after COVID was lifting.
“By day 5, it felt almost like a heavy-weighted blanket had been lifted off of me,” she recalled. “I was able to take my dog for a walk and go to the grocery store. It felt like I had gone from 0 to 100. As quickly as I went downhill, I quickly went back up.”
Reasons for Recovery
Researchers have come up with a few theories about why monoclonal antibodies may help treat long COVID, said study coauthor Aileen Marty, MD, professor of translational medicine at the Herbert Wertheim College of Medicine at Florida International University. Among them:
- It stimulates the body to fight off any residual virus. “We suspect that many of these patients simply have levels of virus that are so low they can’t be picked up by conventional testing,” said Dr. Marty. “The virus lingers in their body and causes long COVID symptoms. The monoclonal antibodies can zero in on them and knock them out.” This may also help explain why some patients with long COVID reported a temporary improvement of symptoms after their COVID-19 vaccination.
- It combats dysfunctional antibodies. Another theory is that people with long COVID have symptoms “not because of residual virus but because of junky antibodies,” said Dr. Marty. These antibodies go into overdrive and attack your own cells, which is what causes long COVID symptoms. “This may be why monoclonal antibodies work because they displace the dysfunctional antibodies that are attached to a patient’s cells,” she explained.
- Reactivation of other viruses. Long COVID is very similar to chronic fatigue syndrome, which is often thought to be triggered by reactivation of viruses like the Epstein-Barr virus, noted coauthor Nancy Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University in Fort Lauderdale. “It may not explain all of the cases of long COVID, but it could make up a subgroup,” she said. It’s thought that the monoclonal antibodies may perhaps neutralize this reactivation.
Where Research Is Headed
While Regeneron worked well in all three patients, it may be because they developed long COVID from either the initial virus or from early variants like Alpha, Beta, and Delta, said Dr. Pepe. As a result, it’s unclear whether this treatment would work for patients who developed long COVID from newer strains like Omicron.
“What concerns me is I believe there may be many people walking around with mild long COVID from these strains who don’t realize it,” he said. “They may assume that if they have difficulty walking upstairs, or forget why they went into another room, that it’s age related.”
The next step, the researchers said, is to create a registry of volunteer patients with severe long COVID. Dr. Klimas plans to enroll 20 volunteers who were infected before September 2022 to see how they respond to another monoclonal antibody initially used to treat COVID-19, bebtelovimab. (Like Regeneron, bebtelovimab is no longer approved for use against COVID-19 by the US Food and Drug Administration because it is no longer effective against variants of the virus circulating today.)
As for patients who developed long COVID after September 2022, research is ongoing to see if they respond to other monoclonal antibodies that are in development. One such study is currently enrolling participants at the University of California San Francisco. The center is recruiting 30 patients with long COVID to try a monoclonal antibody developed by Aerium Therapeutics.
“They created an investigational monoclonal antibody to treat acute COVID, but it proved less effective against variants that emerged in late 2022,” said lead investigator Michael Peluso, MD, an assistant professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at the University of California San Francisco. The hope is it may still work to fight long COVID among patients infected with those variants.
In the meantime, the three patients with long COVID who responded to Regeneron have resumed life as they knew it pre-COVID. Although two subsequently became infected with COVID again, they recovered quickly and did not see symptoms return, something which, for them, seems nothing short of miraculous.
“I had prepared myself to be disabled for life,” said one of the patients, a 46-year-old Floridian woman who developed long COVID after an infection in January 2021. “I had crippling fatigue and dizziness so intense I felt like I was walking on a trampoline. My brain fog was so pronounced I had to write everything down constantly. Otherwise, I’d forget.”
When she became infected with COVID again in September 2021, “I thought I was going to die because I had no idea how I could possibly get worse,” she recalled. Her doctors recommended Regeneron infusion treatment. Forty-eight hours later, her symptoms improved significantly.
“I was able to go out to a cocktail party and dinner for the first time in months,” she said. “I would not have been able to do either of those things a week before.”
It’s also profoundly affected her husband, who had had to take over running the household and raising their five children, aged 11-22 years, for months.
“I can’t tell you how many school events and sports games I missed because I physically didn’t have the strength to get to them,” she noted. “To this day, my husband gets upset whenever we talk about that time. Long COVID literally took over all of our lives. It was devastating to me, but it’s just as devastating for loved ones, too. My family is just grateful to have me back.”
A version of this article first appeared on Medscape.com.
A treatment used to treat acute COVID-19 infection has also been found to be effective against long COVID, a new small study has found. The research, which assessed the benefits of monoclonal antibodies, suggests relief may finally be ahead for millions of Americans with long COVID for whom treatment has remained elusive.
The study, published in the American Journal of Emergency Medicine, found
“We were struck by how rapid and complete the remissions were,” said study coauthor Paul Pepe, MD, MPH, a professor of management, policy, and community health at the School of Public Health at the University of Texas Health Sciences Center. “We found that no matter how long the patients were sick for — whether it was 5, 8, or 18 months — within 5 days, they appeared to be completely cured.”
All three patients had been initially infected with COVID-19 early in the pandemic, in 2020 or the first half of 2021. They were given Regeneron either after a reinfection or exposure to COVID-19, as a preventative, at state-run COVID clinics in Florida.
“In each case, the infusions were given to help prevent their long COVID from worsening,” said Dr. Pepe.
The researchers collected medical histories for all three patients, asking about symptoms such as physical fatigue, exercise intolerance, chest pain, heart palpitations, shortness of breath, cognitive fatigue, and memory problems. They asked patients to rate symptoms pre-COVID (baseline), during the long COVID phase, post-vaccine, and finally a week after their monoclonal antibody treatment. They also interviewed family members.
They found that across the board, symptoms improved significantly and often completely vanished. Their loved ones corroborated these reports as well.
One of the patients, a 63-year-old Floridian woman, came down with a mild case of COVID-19 at the start of the pandemic in March 2020 that lasted about 2 weeks. But several weeks later, she developed extreme, debilitating fatigue, along with chest pain and shortness of breath.
“I was chasing my 6-pound Yorkie one day after she got loose, and I was struck with such intense chest pain I fell down,” the woman, asking not to be identified, said in an interview.
Her symptoms progressed to the point where she no longer felt safe babysitting her grandchildren or driving to the grocery store.
“My short-term memory was completely gone. I couldn’t even read more than a paragraph at a time,” she said.
When she was exposed to COVID-19 in October 2021, her doctor suggested Regeneron as a preventative. She agreed to it.
“I was terrified that a second round would leave me permanently disabled and stuck in bed for the rest of my life,” she said.
About 4 days after her monoclonal antibody treatment, she noticed that some of the brain fog that had persisted after COVID was lifting.
“By day 5, it felt almost like a heavy-weighted blanket had been lifted off of me,” she recalled. “I was able to take my dog for a walk and go to the grocery store. It felt like I had gone from 0 to 100. As quickly as I went downhill, I quickly went back up.”
Reasons for Recovery
Researchers have come up with a few theories about why monoclonal antibodies may help treat long COVID, said study coauthor Aileen Marty, MD, professor of translational medicine at the Herbert Wertheim College of Medicine at Florida International University. Among them:
- It stimulates the body to fight off any residual virus. “We suspect that many of these patients simply have levels of virus that are so low they can’t be picked up by conventional testing,” said Dr. Marty. “The virus lingers in their body and causes long COVID symptoms. The monoclonal antibodies can zero in on them and knock them out.” This may also help explain why some patients with long COVID reported a temporary improvement of symptoms after their COVID-19 vaccination.
- It combats dysfunctional antibodies. Another theory is that people with long COVID have symptoms “not because of residual virus but because of junky antibodies,” said Dr. Marty. These antibodies go into overdrive and attack your own cells, which is what causes long COVID symptoms. “This may be why monoclonal antibodies work because they displace the dysfunctional antibodies that are attached to a patient’s cells,” she explained.
- Reactivation of other viruses. Long COVID is very similar to chronic fatigue syndrome, which is often thought to be triggered by reactivation of viruses like the Epstein-Barr virus, noted coauthor Nancy Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University in Fort Lauderdale. “It may not explain all of the cases of long COVID, but it could make up a subgroup,” she said. It’s thought that the monoclonal antibodies may perhaps neutralize this reactivation.
Where Research Is Headed
While Regeneron worked well in all three patients, it may be because they developed long COVID from either the initial virus or from early variants like Alpha, Beta, and Delta, said Dr. Pepe. As a result, it’s unclear whether this treatment would work for patients who developed long COVID from newer strains like Omicron.
“What concerns me is I believe there may be many people walking around with mild long COVID from these strains who don’t realize it,” he said. “They may assume that if they have difficulty walking upstairs, or forget why they went into another room, that it’s age related.”
The next step, the researchers said, is to create a registry of volunteer patients with severe long COVID. Dr. Klimas plans to enroll 20 volunteers who were infected before September 2022 to see how they respond to another monoclonal antibody initially used to treat COVID-19, bebtelovimab. (Like Regeneron, bebtelovimab is no longer approved for use against COVID-19 by the US Food and Drug Administration because it is no longer effective against variants of the virus circulating today.)
As for patients who developed long COVID after September 2022, research is ongoing to see if they respond to other monoclonal antibodies that are in development. One such study is currently enrolling participants at the University of California San Francisco. The center is recruiting 30 patients with long COVID to try a monoclonal antibody developed by Aerium Therapeutics.
“They created an investigational monoclonal antibody to treat acute COVID, but it proved less effective against variants that emerged in late 2022,” said lead investigator Michael Peluso, MD, an assistant professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at the University of California San Francisco. The hope is it may still work to fight long COVID among patients infected with those variants.
In the meantime, the three patients with long COVID who responded to Regeneron have resumed life as they knew it pre-COVID. Although two subsequently became infected with COVID again, they recovered quickly and did not see symptoms return, something which, for them, seems nothing short of miraculous.
“I had prepared myself to be disabled for life,” said one of the patients, a 46-year-old Floridian woman who developed long COVID after an infection in January 2021. “I had crippling fatigue and dizziness so intense I felt like I was walking on a trampoline. My brain fog was so pronounced I had to write everything down constantly. Otherwise, I’d forget.”
When she became infected with COVID again in September 2021, “I thought I was going to die because I had no idea how I could possibly get worse,” she recalled. Her doctors recommended Regeneron infusion treatment. Forty-eight hours later, her symptoms improved significantly.
“I was able to go out to a cocktail party and dinner for the first time in months,” she said. “I would not have been able to do either of those things a week before.”
It’s also profoundly affected her husband, who had had to take over running the household and raising their five children, aged 11-22 years, for months.
“I can’t tell you how many school events and sports games I missed because I physically didn’t have the strength to get to them,” she noted. “To this day, my husband gets upset whenever we talk about that time. Long COVID literally took over all of our lives. It was devastating to me, but it’s just as devastating for loved ones, too. My family is just grateful to have me back.”
A version of this article first appeared on Medscape.com.
A treatment used to treat acute COVID-19 infection has also been found to be effective against long COVID, a new small study has found. The research, which assessed the benefits of monoclonal antibodies, suggests relief may finally be ahead for millions of Americans with long COVID for whom treatment has remained elusive.
The study, published in the American Journal of Emergency Medicine, found
“We were struck by how rapid and complete the remissions were,” said study coauthor Paul Pepe, MD, MPH, a professor of management, policy, and community health at the School of Public Health at the University of Texas Health Sciences Center. “We found that no matter how long the patients were sick for — whether it was 5, 8, or 18 months — within 5 days, they appeared to be completely cured.”
All three patients had been initially infected with COVID-19 early in the pandemic, in 2020 or the first half of 2021. They were given Regeneron either after a reinfection or exposure to COVID-19, as a preventative, at state-run COVID clinics in Florida.
“In each case, the infusions were given to help prevent their long COVID from worsening,” said Dr. Pepe.
The researchers collected medical histories for all three patients, asking about symptoms such as physical fatigue, exercise intolerance, chest pain, heart palpitations, shortness of breath, cognitive fatigue, and memory problems. They asked patients to rate symptoms pre-COVID (baseline), during the long COVID phase, post-vaccine, and finally a week after their monoclonal antibody treatment. They also interviewed family members.
They found that across the board, symptoms improved significantly and often completely vanished. Their loved ones corroborated these reports as well.
One of the patients, a 63-year-old Floridian woman, came down with a mild case of COVID-19 at the start of the pandemic in March 2020 that lasted about 2 weeks. But several weeks later, she developed extreme, debilitating fatigue, along with chest pain and shortness of breath.
“I was chasing my 6-pound Yorkie one day after she got loose, and I was struck with such intense chest pain I fell down,” the woman, asking not to be identified, said in an interview.
Her symptoms progressed to the point where she no longer felt safe babysitting her grandchildren or driving to the grocery store.
“My short-term memory was completely gone. I couldn’t even read more than a paragraph at a time,” she said.
When she was exposed to COVID-19 in October 2021, her doctor suggested Regeneron as a preventative. She agreed to it.
“I was terrified that a second round would leave me permanently disabled and stuck in bed for the rest of my life,” she said.
About 4 days after her monoclonal antibody treatment, she noticed that some of the brain fog that had persisted after COVID was lifting.
“By day 5, it felt almost like a heavy-weighted blanket had been lifted off of me,” she recalled. “I was able to take my dog for a walk and go to the grocery store. It felt like I had gone from 0 to 100. As quickly as I went downhill, I quickly went back up.”
Reasons for Recovery
Researchers have come up with a few theories about why monoclonal antibodies may help treat long COVID, said study coauthor Aileen Marty, MD, professor of translational medicine at the Herbert Wertheim College of Medicine at Florida International University. Among them:
- It stimulates the body to fight off any residual virus. “We suspect that many of these patients simply have levels of virus that are so low they can’t be picked up by conventional testing,” said Dr. Marty. “The virus lingers in their body and causes long COVID symptoms. The monoclonal antibodies can zero in on them and knock them out.” This may also help explain why some patients with long COVID reported a temporary improvement of symptoms after their COVID-19 vaccination.
- It combats dysfunctional antibodies. Another theory is that people with long COVID have symptoms “not because of residual virus but because of junky antibodies,” said Dr. Marty. These antibodies go into overdrive and attack your own cells, which is what causes long COVID symptoms. “This may be why monoclonal antibodies work because they displace the dysfunctional antibodies that are attached to a patient’s cells,” she explained.
- Reactivation of other viruses. Long COVID is very similar to chronic fatigue syndrome, which is often thought to be triggered by reactivation of viruses like the Epstein-Barr virus, noted coauthor Nancy Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University in Fort Lauderdale. “It may not explain all of the cases of long COVID, but it could make up a subgroup,” she said. It’s thought that the monoclonal antibodies may perhaps neutralize this reactivation.
Where Research Is Headed
While Regeneron worked well in all three patients, it may be because they developed long COVID from either the initial virus or from early variants like Alpha, Beta, and Delta, said Dr. Pepe. As a result, it’s unclear whether this treatment would work for patients who developed long COVID from newer strains like Omicron.
“What concerns me is I believe there may be many people walking around with mild long COVID from these strains who don’t realize it,” he said. “They may assume that if they have difficulty walking upstairs, or forget why they went into another room, that it’s age related.”
The next step, the researchers said, is to create a registry of volunteer patients with severe long COVID. Dr. Klimas plans to enroll 20 volunteers who were infected before September 2022 to see how they respond to another monoclonal antibody initially used to treat COVID-19, bebtelovimab. (Like Regeneron, bebtelovimab is no longer approved for use against COVID-19 by the US Food and Drug Administration because it is no longer effective against variants of the virus circulating today.)
As for patients who developed long COVID after September 2022, research is ongoing to see if they respond to other monoclonal antibodies that are in development. One such study is currently enrolling participants at the University of California San Francisco. The center is recruiting 30 patients with long COVID to try a monoclonal antibody developed by Aerium Therapeutics.
“They created an investigational monoclonal antibody to treat acute COVID, but it proved less effective against variants that emerged in late 2022,” said lead investigator Michael Peluso, MD, an assistant professor of medicine in the Division of HIV, Infectious Diseases, and Global Medicine at the University of California San Francisco. The hope is it may still work to fight long COVID among patients infected with those variants.
In the meantime, the three patients with long COVID who responded to Regeneron have resumed life as they knew it pre-COVID. Although two subsequently became infected with COVID again, they recovered quickly and did not see symptoms return, something which, for them, seems nothing short of miraculous.
“I had prepared myself to be disabled for life,” said one of the patients, a 46-year-old Floridian woman who developed long COVID after an infection in January 2021. “I had crippling fatigue and dizziness so intense I felt like I was walking on a trampoline. My brain fog was so pronounced I had to write everything down constantly. Otherwise, I’d forget.”
When she became infected with COVID again in September 2021, “I thought I was going to die because I had no idea how I could possibly get worse,” she recalled. Her doctors recommended Regeneron infusion treatment. Forty-eight hours later, her symptoms improved significantly.
“I was able to go out to a cocktail party and dinner for the first time in months,” she said. “I would not have been able to do either of those things a week before.”
It’s also profoundly affected her husband, who had had to take over running the household and raising their five children, aged 11-22 years, for months.
“I can’t tell you how many school events and sports games I missed because I physically didn’t have the strength to get to them,” she noted. “To this day, my husband gets upset whenever we talk about that time. Long COVID literally took over all of our lives. It was devastating to me, but it’s just as devastating for loved ones, too. My family is just grateful to have me back.”
A version of this article first appeared on Medscape.com.
FROM THE AMERICAN JOURNAL OF EMERGENCY MEDICINe
Long COVID and vaccines: Separating facts from falsehoods
The COVID-19 vaccines have been a game changer for millions of people worldwide in preventing death or disability from the virus. Research suggests that they offer significant protection against long COVID.
False and unfounded claims made by some antivaccine groups that the vaccines themselves may cause long COVID persist and serve as barriers to vaccination.
To help separate the facts from falsehoods, here’s a checklist for doctors on what scientific studies have determined about vaccination and long COVID.
What the research shows
Doctors who work in long COVID clinics have for years suspected that vaccination may help protect against the development of long COVID, noted Lawrence Purpura, MD, MPH, an infectious disease specialist at New York–Presbyterian/Columbia University Irving Medical Center, who treats patients with long COVID in his clinic.
Over the past year, several large, well-conducted studies have borne out that theory, including the following studies:
- In the RECOVER study, published in May in the journal Nature Communications, researchers examined the electronic health records of more than 5 million people who had been diagnosed with COVID and found that vaccination reduced the risk that they would develop long COVID. Although the researchers didn’t compare the effects of having boosters to being fully vaccinated without them, experts have suggested that having a full round of recommended shots may offer the most protection. “My thoughts are that more shots are better, and other work has shown compelling evidence that the protective effect of vaccination on COVID-19 wanes over time,” said study coauthor Daniel Brannock, MS, a research scientist at RTI International in Research Triangle Park, N.C. “It stands to reason that the same is true for long COVID.”
- A review published in February in BMJ Medicine concluded that 10 studies showed a significant reduction in the incidence of long COVID among vaccinated patients. Even one dose of a vaccine was protective.
- A meta-analysis of six studies published last December in Antimicrobial Stewardship and Healthcare Epidemiology found that one or more doses of a COVID-19 vaccine were 29% effective in preventing symptoms of long COVID.
- In a June meta-analysis published in JAMA Internal Medicine, researchers analyzed more than 40 studies that included 860,000 patients and found that two doses of a COVID-19 vaccine reduced the risk of long COVID by almost half.
The message? COVID vaccination is very effective in reducing the risk of long COVID.
“It’s important to emphasize that many of the risk factors [for long COVID] cannot be changed, or at least cannot be changed easily, but vaccination is a decision that can be taken by everyone,” said Vassilios Vassiliou, MBBS, PhD, clinical professor of cardiac medicine at Norwich Medical School in England, who coauthored the article in JAMA Internal Medicine.
Why vaccines may be protective
The COVID-19 vaccines work well to prevent serious illness from the virus, noted Aaron Friedberg, MD, clinical coleader of the Post COVID Recovery Program at the Ohio State University Wexner Medical Center. That may be a clue to why the vaccines help prevent long COVID symptoms.
“When you get COVID and you’ve been vaccinated, the virus may still attach in your nose and respiratory tract, but it’s less likely to spread throughout your body,” he explained. “It’s like a forest fire – if the ground is wet or it starts to rain, it’s less likely to create a great blaze. As a result, your body is less likely to experience inflammation and damage that makes it more likely that you’ll develop long COVID.”
Dr. Friedberg stressed that even for patients who have had COVID, it’s important to get vaccinated – a message he consistently delivers to his own patients.
“There is some protection that comes from having COVID before, but for some people, that’s not enough,” he said. “It’s true that after infection, your body creates antibodies that help protect you against the virus. But I explain to patients that these may be like old Velcro: They barely grab on enough to stay on for the moment, but they don’t last long term. You’re much more likely to get a reliable immune response from the vaccine.”
In addition, a second or third bout of COVID could be the one that gives patients long COVID, Dr. Friedberg adds.
“I have a number of patients in my clinic who were fine after their first bout of COVID but experienced debilitating long COVID symptoms after they developed COVID again,” he said. “Why leave it to chance?”
Vaccines and ‘long vax’
The COVID vaccines are considered very safe but have been linked to very rare side effects, such as blood clots and heart inflammation. There have also been anecdotal reports of symptoms that resemble long COVID – a syndrome that has come to be known as “long Vax” – an extremely rare condition that may or may not be tied to vaccination.
“I have seen people in my clinic who developed symptoms suggestive of long COVID that linger for months – brain fog, fatigue, heart palpitations – soon after they got the COVID-19 vaccine,” said Dr. Purpura. But no published studies have suggested a link, he cautions.
A study called LISTEN is being organized at Yale in an effort to better understand postvaccine adverse events and a potential link to long COVID.
Talking to patients
Discussions of vaccination with patients, including those with COVID or long COVID, are often fraught and challenging, said Dr. Purpura.
“There’s a lot of fear that they will have a worsening of their symptoms,” he explained. The conversation he has with his patients mirrors the conversation all physicians should have with their patients about COVID-19 vaccination, even if they don’t have long COVID. He stresses the importance of highlighting the following components:
- Show compassion and empathy. “A lot of people have strongly held opinions – it’s worth it to try to find out why they feel the way that they do,” said Dr. Friedberg.
- Walk them through side effects. “Many people are afraid of the side effects of the vaccine, especially if they already have long COVID,” explained Dr. Purpura. Such patients can be asked how they felt after their last vaccination, such a shingles or flu shot. Then explain that the COVID-19 vaccine is not much different and that they may experience temporary side effects such as fatigue, headache, or a mild fever for 24-48 hours.
- Explain the benefits. Eighty-five percent of people say their health care provider is a trusted source of information on COVID-19 vaccines, according to the Kaiser Family Foundation. That trust is conducive to talks about the vaccine’s benefits, including its ability to protect against long COVID.
Other ways to reduce risk of long COVID
Vaccines can lower the chances of a patient’s developing long COVID. So can the antiviral medication nirmatrelvir (Paxlovid). A March 2023 study published in JAMA Internal Medicine included more than 280,000 people with COVID. The researchers found that vaccination reduced the risk for developing the condition by about 25%.
“I mention that study to all of my long COVID patients who become reinfected with the virus,” said Dr. Purpura. “It not only appears protective against long COVID, but since it lowers levels of virus circulating in their body, it seems to help prevent a flare-up of symptoms.”
Another treatment that may help is the diabetes drug metformin, he added.
A June 2023 study published in The Lancet Infectious Diseases found that when metformin was given within 3 days of symptom onset, the incidence of long COVID was reduced by about 41%.
“We’re still trying to wrap our brains around this one, but the thought is it may help to lower inflammation, which plays a role in long COVID,” Dr. Purpura explained. More studies need to be conducted, though, before recommending its use.
A version of this article first appeared on Medscape.com.
The COVID-19 vaccines have been a game changer for millions of people worldwide in preventing death or disability from the virus. Research suggests that they offer significant protection against long COVID.
False and unfounded claims made by some antivaccine groups that the vaccines themselves may cause long COVID persist and serve as barriers to vaccination.
To help separate the facts from falsehoods, here’s a checklist for doctors on what scientific studies have determined about vaccination and long COVID.
What the research shows
Doctors who work in long COVID clinics have for years suspected that vaccination may help protect against the development of long COVID, noted Lawrence Purpura, MD, MPH, an infectious disease specialist at New York–Presbyterian/Columbia University Irving Medical Center, who treats patients with long COVID in his clinic.
Over the past year, several large, well-conducted studies have borne out that theory, including the following studies:
- In the RECOVER study, published in May in the journal Nature Communications, researchers examined the electronic health records of more than 5 million people who had been diagnosed with COVID and found that vaccination reduced the risk that they would develop long COVID. Although the researchers didn’t compare the effects of having boosters to being fully vaccinated without them, experts have suggested that having a full round of recommended shots may offer the most protection. “My thoughts are that more shots are better, and other work has shown compelling evidence that the protective effect of vaccination on COVID-19 wanes over time,” said study coauthor Daniel Brannock, MS, a research scientist at RTI International in Research Triangle Park, N.C. “It stands to reason that the same is true for long COVID.”
- A review published in February in BMJ Medicine concluded that 10 studies showed a significant reduction in the incidence of long COVID among vaccinated patients. Even one dose of a vaccine was protective.
- A meta-analysis of six studies published last December in Antimicrobial Stewardship and Healthcare Epidemiology found that one or more doses of a COVID-19 vaccine were 29% effective in preventing symptoms of long COVID.
- In a June meta-analysis published in JAMA Internal Medicine, researchers analyzed more than 40 studies that included 860,000 patients and found that two doses of a COVID-19 vaccine reduced the risk of long COVID by almost half.
The message? COVID vaccination is very effective in reducing the risk of long COVID.
“It’s important to emphasize that many of the risk factors [for long COVID] cannot be changed, or at least cannot be changed easily, but vaccination is a decision that can be taken by everyone,” said Vassilios Vassiliou, MBBS, PhD, clinical professor of cardiac medicine at Norwich Medical School in England, who coauthored the article in JAMA Internal Medicine.
Why vaccines may be protective
The COVID-19 vaccines work well to prevent serious illness from the virus, noted Aaron Friedberg, MD, clinical coleader of the Post COVID Recovery Program at the Ohio State University Wexner Medical Center. That may be a clue to why the vaccines help prevent long COVID symptoms.
“When you get COVID and you’ve been vaccinated, the virus may still attach in your nose and respiratory tract, but it’s less likely to spread throughout your body,” he explained. “It’s like a forest fire – if the ground is wet or it starts to rain, it’s less likely to create a great blaze. As a result, your body is less likely to experience inflammation and damage that makes it more likely that you’ll develop long COVID.”
Dr. Friedberg stressed that even for patients who have had COVID, it’s important to get vaccinated – a message he consistently delivers to his own patients.
“There is some protection that comes from having COVID before, but for some people, that’s not enough,” he said. “It’s true that after infection, your body creates antibodies that help protect you against the virus. But I explain to patients that these may be like old Velcro: They barely grab on enough to stay on for the moment, but they don’t last long term. You’re much more likely to get a reliable immune response from the vaccine.”
In addition, a second or third bout of COVID could be the one that gives patients long COVID, Dr. Friedberg adds.
“I have a number of patients in my clinic who were fine after their first bout of COVID but experienced debilitating long COVID symptoms after they developed COVID again,” he said. “Why leave it to chance?”
Vaccines and ‘long vax’
The COVID vaccines are considered very safe but have been linked to very rare side effects, such as blood clots and heart inflammation. There have also been anecdotal reports of symptoms that resemble long COVID – a syndrome that has come to be known as “long Vax” – an extremely rare condition that may or may not be tied to vaccination.
“I have seen people in my clinic who developed symptoms suggestive of long COVID that linger for months – brain fog, fatigue, heart palpitations – soon after they got the COVID-19 vaccine,” said Dr. Purpura. But no published studies have suggested a link, he cautions.
A study called LISTEN is being organized at Yale in an effort to better understand postvaccine adverse events and a potential link to long COVID.
Talking to patients
Discussions of vaccination with patients, including those with COVID or long COVID, are often fraught and challenging, said Dr. Purpura.
“There’s a lot of fear that they will have a worsening of their symptoms,” he explained. The conversation he has with his patients mirrors the conversation all physicians should have with their patients about COVID-19 vaccination, even if they don’t have long COVID. He stresses the importance of highlighting the following components:
- Show compassion and empathy. “A lot of people have strongly held opinions – it’s worth it to try to find out why they feel the way that they do,” said Dr. Friedberg.
- Walk them through side effects. “Many people are afraid of the side effects of the vaccine, especially if they already have long COVID,” explained Dr. Purpura. Such patients can be asked how they felt after their last vaccination, such a shingles or flu shot. Then explain that the COVID-19 vaccine is not much different and that they may experience temporary side effects such as fatigue, headache, or a mild fever for 24-48 hours.
- Explain the benefits. Eighty-five percent of people say their health care provider is a trusted source of information on COVID-19 vaccines, according to the Kaiser Family Foundation. That trust is conducive to talks about the vaccine’s benefits, including its ability to protect against long COVID.
Other ways to reduce risk of long COVID
Vaccines can lower the chances of a patient’s developing long COVID. So can the antiviral medication nirmatrelvir (Paxlovid). A March 2023 study published in JAMA Internal Medicine included more than 280,000 people with COVID. The researchers found that vaccination reduced the risk for developing the condition by about 25%.
“I mention that study to all of my long COVID patients who become reinfected with the virus,” said Dr. Purpura. “It not only appears protective against long COVID, but since it lowers levels of virus circulating in their body, it seems to help prevent a flare-up of symptoms.”
Another treatment that may help is the diabetes drug metformin, he added.
A June 2023 study published in The Lancet Infectious Diseases found that when metformin was given within 3 days of symptom onset, the incidence of long COVID was reduced by about 41%.
“We’re still trying to wrap our brains around this one, but the thought is it may help to lower inflammation, which plays a role in long COVID,” Dr. Purpura explained. More studies need to be conducted, though, before recommending its use.
A version of this article first appeared on Medscape.com.
The COVID-19 vaccines have been a game changer for millions of people worldwide in preventing death or disability from the virus. Research suggests that they offer significant protection against long COVID.
False and unfounded claims made by some antivaccine groups that the vaccines themselves may cause long COVID persist and serve as barriers to vaccination.
To help separate the facts from falsehoods, here’s a checklist for doctors on what scientific studies have determined about vaccination and long COVID.
What the research shows
Doctors who work in long COVID clinics have for years suspected that vaccination may help protect against the development of long COVID, noted Lawrence Purpura, MD, MPH, an infectious disease specialist at New York–Presbyterian/Columbia University Irving Medical Center, who treats patients with long COVID in his clinic.
Over the past year, several large, well-conducted studies have borne out that theory, including the following studies:
- In the RECOVER study, published in May in the journal Nature Communications, researchers examined the electronic health records of more than 5 million people who had been diagnosed with COVID and found that vaccination reduced the risk that they would develop long COVID. Although the researchers didn’t compare the effects of having boosters to being fully vaccinated without them, experts have suggested that having a full round of recommended shots may offer the most protection. “My thoughts are that more shots are better, and other work has shown compelling evidence that the protective effect of vaccination on COVID-19 wanes over time,” said study coauthor Daniel Brannock, MS, a research scientist at RTI International in Research Triangle Park, N.C. “It stands to reason that the same is true for long COVID.”
- A review published in February in BMJ Medicine concluded that 10 studies showed a significant reduction in the incidence of long COVID among vaccinated patients. Even one dose of a vaccine was protective.
- A meta-analysis of six studies published last December in Antimicrobial Stewardship and Healthcare Epidemiology found that one or more doses of a COVID-19 vaccine were 29% effective in preventing symptoms of long COVID.
- In a June meta-analysis published in JAMA Internal Medicine, researchers analyzed more than 40 studies that included 860,000 patients and found that two doses of a COVID-19 vaccine reduced the risk of long COVID by almost half.
The message? COVID vaccination is very effective in reducing the risk of long COVID.
“It’s important to emphasize that many of the risk factors [for long COVID] cannot be changed, or at least cannot be changed easily, but vaccination is a decision that can be taken by everyone,” said Vassilios Vassiliou, MBBS, PhD, clinical professor of cardiac medicine at Norwich Medical School in England, who coauthored the article in JAMA Internal Medicine.
Why vaccines may be protective
The COVID-19 vaccines work well to prevent serious illness from the virus, noted Aaron Friedberg, MD, clinical coleader of the Post COVID Recovery Program at the Ohio State University Wexner Medical Center. That may be a clue to why the vaccines help prevent long COVID symptoms.
“When you get COVID and you’ve been vaccinated, the virus may still attach in your nose and respiratory tract, but it’s less likely to spread throughout your body,” he explained. “It’s like a forest fire – if the ground is wet or it starts to rain, it’s less likely to create a great blaze. As a result, your body is less likely to experience inflammation and damage that makes it more likely that you’ll develop long COVID.”
Dr. Friedberg stressed that even for patients who have had COVID, it’s important to get vaccinated – a message he consistently delivers to his own patients.
“There is some protection that comes from having COVID before, but for some people, that’s not enough,” he said. “It’s true that after infection, your body creates antibodies that help protect you against the virus. But I explain to patients that these may be like old Velcro: They barely grab on enough to stay on for the moment, but they don’t last long term. You’re much more likely to get a reliable immune response from the vaccine.”
In addition, a second or third bout of COVID could be the one that gives patients long COVID, Dr. Friedberg adds.
“I have a number of patients in my clinic who were fine after their first bout of COVID but experienced debilitating long COVID symptoms after they developed COVID again,” he said. “Why leave it to chance?”
Vaccines and ‘long vax’
The COVID vaccines are considered very safe but have been linked to very rare side effects, such as blood clots and heart inflammation. There have also been anecdotal reports of symptoms that resemble long COVID – a syndrome that has come to be known as “long Vax” – an extremely rare condition that may or may not be tied to vaccination.
“I have seen people in my clinic who developed symptoms suggestive of long COVID that linger for months – brain fog, fatigue, heart palpitations – soon after they got the COVID-19 vaccine,” said Dr. Purpura. But no published studies have suggested a link, he cautions.
A study called LISTEN is being organized at Yale in an effort to better understand postvaccine adverse events and a potential link to long COVID.
Talking to patients
Discussions of vaccination with patients, including those with COVID or long COVID, are often fraught and challenging, said Dr. Purpura.
“There’s a lot of fear that they will have a worsening of their symptoms,” he explained. The conversation he has with his patients mirrors the conversation all physicians should have with their patients about COVID-19 vaccination, even if they don’t have long COVID. He stresses the importance of highlighting the following components:
- Show compassion and empathy. “A lot of people have strongly held opinions – it’s worth it to try to find out why they feel the way that they do,” said Dr. Friedberg.
- Walk them through side effects. “Many people are afraid of the side effects of the vaccine, especially if they already have long COVID,” explained Dr. Purpura. Such patients can be asked how they felt after their last vaccination, such a shingles or flu shot. Then explain that the COVID-19 vaccine is not much different and that they may experience temporary side effects such as fatigue, headache, or a mild fever for 24-48 hours.
- Explain the benefits. Eighty-five percent of people say their health care provider is a trusted source of information on COVID-19 vaccines, according to the Kaiser Family Foundation. That trust is conducive to talks about the vaccine’s benefits, including its ability to protect against long COVID.
Other ways to reduce risk of long COVID
Vaccines can lower the chances of a patient’s developing long COVID. So can the antiviral medication nirmatrelvir (Paxlovid). A March 2023 study published in JAMA Internal Medicine included more than 280,000 people with COVID. The researchers found that vaccination reduced the risk for developing the condition by about 25%.
“I mention that study to all of my long COVID patients who become reinfected with the virus,” said Dr. Purpura. “It not only appears protective against long COVID, but since it lowers levels of virus circulating in their body, it seems to help prevent a flare-up of symptoms.”
Another treatment that may help is the diabetes drug metformin, he added.
A June 2023 study published in The Lancet Infectious Diseases found that when metformin was given within 3 days of symptom onset, the incidence of long COVID was reduced by about 41%.
“We’re still trying to wrap our brains around this one, but the thought is it may help to lower inflammation, which plays a role in long COVID,” Dr. Purpura explained. More studies need to be conducted, though, before recommending its use.
A version of this article first appeared on Medscape.com.
Doctor’s checklist for treating long COVID patients
Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID.
“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”
Ms. McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she said many doctors still don’t know the hallmark symptoms of the condition or how to treat it.
“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”
The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it.
While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID.
“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center, New York. “It’s a complicated disease that can impact every organ system of the body.”
Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them: the key systems and organs impacted by the disease, the most common symptoms, useful therapeutic options for symptom management that have been found to help people with long COVID, and the best healthy lifestyle choices that doctors can recommend to help their patients
Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors.
Key systems, organs impacted
About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that Ms. McCorkell helped coauthor. But more than 3 years into the pandemic, much about the condition is still a mystery.
COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started.
“We know that there are dozens of symptoms across multiple organ systems,” said Ms. McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”
A paper published in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups:
- Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
- Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
- In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
- In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting
There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.
This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at New York University Langone Medical Center who also specializes in treating patients with long COVID.
But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.
Checklist of symptoms
Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID.
Postexertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York, who says that he sees it in about 90% of patients who come to his long COVID clinic.
PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or 2 after the activity, but it can last for days, and sometimes weeks.
“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”
Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy.
“In my practice, about 80% of patients meet criteria for dysautonomia,” said Dr. Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.
One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.
Exercise intolerance. A review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors.
“This is especially important because it can’t be explained just by deconditioning,” said Dr. Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause postexertional malaise, which sets patients back and delays recovery.”
While long COVID can cause dozens of symptoms, a paper Ms. McCorkell coauthored zeroed in on some of the most common ones: chest pain, heart palpitations, coughing, shortness of breath, belly pain, nausea, problems with mental skills, fatigue, disordered sleep, memory loss, ringing in the ears (tinnitus), erectile dysfunction, irregular menstruation, and worsened premenstrual syndrome.
While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others.
“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Dr. Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.”
It’s not just what symptoms are, but when they began to occur, he added. “Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or 2 after getting sick.”
Can you prevent long COVID?
You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%.
In addition, a study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: a healthy weight (a body mass index between 18.5 and 24.7 kg/m2), never-smoker, moderate alcohol consumption, a high-quality diet, 7-9 hours of sleep a night, and at least 150 minutes per week of physical activity
But Ms. McCorkell noted that she herself had a healthy preinfection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.
“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”
A version of this article first appeared on WebMD.com.
Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID.
“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”
Ms. McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she said many doctors still don’t know the hallmark symptoms of the condition or how to treat it.
“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”
The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it.
While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID.
“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center, New York. “It’s a complicated disease that can impact every organ system of the body.”
Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them: the key systems and organs impacted by the disease, the most common symptoms, useful therapeutic options for symptom management that have been found to help people with long COVID, and the best healthy lifestyle choices that doctors can recommend to help their patients
Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors.
Key systems, organs impacted
About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that Ms. McCorkell helped coauthor. But more than 3 years into the pandemic, much about the condition is still a mystery.
COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started.
“We know that there are dozens of symptoms across multiple organ systems,” said Ms. McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”
A paper published in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups:
- Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
- Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
- In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
- In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting
There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.
This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at New York University Langone Medical Center who also specializes in treating patients with long COVID.
But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.
Checklist of symptoms
Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID.
Postexertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York, who says that he sees it in about 90% of patients who come to his long COVID clinic.
PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or 2 after the activity, but it can last for days, and sometimes weeks.
“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”
Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy.
“In my practice, about 80% of patients meet criteria for dysautonomia,” said Dr. Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.
One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.
Exercise intolerance. A review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors.
“This is especially important because it can’t be explained just by deconditioning,” said Dr. Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause postexertional malaise, which sets patients back and delays recovery.”
While long COVID can cause dozens of symptoms, a paper Ms. McCorkell coauthored zeroed in on some of the most common ones: chest pain, heart palpitations, coughing, shortness of breath, belly pain, nausea, problems with mental skills, fatigue, disordered sleep, memory loss, ringing in the ears (tinnitus), erectile dysfunction, irregular menstruation, and worsened premenstrual syndrome.
While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others.
“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Dr. Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.”
It’s not just what symptoms are, but when they began to occur, he added. “Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or 2 after getting sick.”
Can you prevent long COVID?
You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%.
In addition, a study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: a healthy weight (a body mass index between 18.5 and 24.7 kg/m2), never-smoker, moderate alcohol consumption, a high-quality diet, 7-9 hours of sleep a night, and at least 150 minutes per week of physical activity
But Ms. McCorkell noted that she herself had a healthy preinfection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.
“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”
A version of this article first appeared on WebMD.com.
Lisa McCorkell had a mild bout of COVID-19 in March 2020. Young and healthy, she assumed that she would bounce back quickly. But when her fatigue, shortness of breath, and brain fog persisted, she realized that she most likely had long COVID.
“Back then, we as patients basically coined the term,” she said. While her first primary care provider was sympathetic, they were unsure how to treat her. After her insurance changed, she ended up with a second primary care provider who didn’t take her symptoms seriously. “They dismissed my complaints and told me they were all in my head. I didn’t seek care for a while after that.”
Ms. McCorkell’s symptoms improved after her first COVID vaccine in the spring of 2021. She also finally found a new primary care doctor she could trust. But as one of the founders of the Patient-Led Research Collaborative, a group of researchers who study long COVID, she said many doctors still don’t know the hallmark symptoms of the condition or how to treat it.
“There’s still a lack of education on what long COVID is, and the symptoms associated with it,” she said. “Many of the symptoms that occur in long COVID are symptoms of other chronic conditions, such as chronic fatigue syndrome, that are often dismissed. And even if providers believe patients and send them for a workup, many of the routine blood and imaging tests come back normal.”
The term “long COVID” emerged in May 2020. And though the condition was recognized within a few months of the start of the pandemic, doctors weren’t sure how to screen or treat it.
While knowledge has developed since then, primary care doctors are still in a tough spot. They’re often the first providers that patients turn to when they have symptoms of long COVID.
“There’s no clear algorithm to pick up long COVID – there are no definite blood tests or biomarkers, or specific things to look for on a physical exam,” said Lawrence Purpura, MD, an infectious disease specialist and director of the long COVID clinic at Columbia University Medical Center, New York. “It’s a complicated disease that can impact every organ system of the body.”
Even so, emerging research has identified a checklist of sorts that doctors should consider when a patient seeks care for what appears to be long COVID. Among them: the key systems and organs impacted by the disease, the most common symptoms, useful therapeutic options for symptom management that have been found to help people with long COVID, and the best healthy lifestyle choices that doctors can recommend to help their patients
Here’s a closer look at each of these aspects, based on research and interviews with experts, patients, and doctors.
Key systems, organs impacted
About 10% of people who are infected with COVID-19 go on to have long COVID, according to a recent study that Ms. McCorkell helped coauthor. But more than 3 years into the pandemic, much about the condition is still a mystery.
COVID is a unique virus because it can spread far and wide in a patient’s body. A December 2022 study, published in Nature, autopsied 44 people who died of COVID and found that the virus could spread throughout the body and persist, in one case as long as 230 days after symptoms started.
“We know that there are dozens of symptoms across multiple organ systems,” said Ms. McCorkell. “That makes it harder for a primary care physician to connect the dots and associate it with COVID.”
A paper published in Nature Medicine proposed one way to help guide diagnosis. It divided symptoms into four groups:
- Cardiac and renal issues such as heart palpitations, chest pain, and kidney damage
- Sleep and anxiety problems like insomnia, waking up in the middle of the night, and anxiety
- In the musculoskeletal and nervous systems: musculoskeletal pain, osteoarthritis, and problems with mental skills
- In the digestive and respiratory systems: trouble breathing, asthma, stomach pain, nausea, and vomiting
There were also specific patterns in these groups. People in the first group were more likely to be older, male, have other conditions and to have been infected during the first wave of the COVID pandemic. People in the second group were over 60% female, and were more likely to have had previous allergies or asthma. The third group was also about 60% female, and many of them already had autoimmune conditions such as rheumatoid arthritis. Members of the fourth group – also 60% female – were the least likely of all the groups to have another condition.
This research is helpful, because it gives doctors a better sense of what conditions might make a patient more likely to get long COVID, as well as specific symptoms to look out for, said Steven Flanagan, MD, a physical medicine and rehabilitation specialist at New York University Langone Medical Center who also specializes in treating patients with long COVID.
But the “challenge there, though, for health care providers is that not everyone will fall neatly into one of these categories,” he stressed.
Checklist of symptoms
Although long COVID can be confusing, doctors say there are several symptoms that appear consistently that primary care providers should look out for, that could flag long COVID.
Postexertional malaise (PEM). This is different from simply feeling tired. “This term is often conflated with fatigue, but it’s very different,” said David Putrino, PhD, director of rehabilitation innovation at the Mount Sinai Health System in New York, who says that he sees it in about 90% of patients who come to his long COVID clinic.
PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or 2 after the activity, but it can last for days, and sometimes weeks.
“It’s very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill,” he noted. “People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later.”
Dysautonomia. This is an umbrella term used to describe a dysfunction of the autonomic nervous system, which regulates bodily functions that you can’t control, like your blood pressure, heart rate, and breathing. This can cause symptoms such as heart palpitations, along with orthostatic intolerance, which means you can’t stand up for long without feeling faint or dizzy.
“In my practice, about 80% of patients meet criteria for dysautonomia,” said Dr. Putrino. Other research has found that it’s present in about two-thirds of long COVID patients.
One relatively easy way primary care providers can diagnose dysautonomia is to do the tilt table test. This helps check for postural orthostatic tachycardia syndrome (POTS), one of the most common forms of dysautonomia. During this exam, the patient lies flat on a table. As the head of the table is raised to an almost upright position, their heart rate and blood pressure are measured. Signs of POTS include an abnormal heart rate when you’re upright, as well as a worsening of symptoms.
Exercise intolerance. A review published in the journal JAMA Network Open analyzed 38 studies on long COVID and exercise and found that patients with the condition had a much harder time doing physical activity. Exercise capacity was reduced to levels that would be expected about a decade later in life, according to study authors.
“This is especially important because it can’t be explained just by deconditioning,” said Dr. Purpura. “Sometimes these patients are encouraged to ramp up exercise as a way to help with symptoms, but in these cases, encouraging them to push through can cause postexertional malaise, which sets patients back and delays recovery.”
While long COVID can cause dozens of symptoms, a paper Ms. McCorkell coauthored zeroed in on some of the most common ones: chest pain, heart palpitations, coughing, shortness of breath, belly pain, nausea, problems with mental skills, fatigue, disordered sleep, memory loss, ringing in the ears (tinnitus), erectile dysfunction, irregular menstruation, and worsened premenstrual syndrome.
While most primary care providers are familiar with some of these long COVID symptoms, they may not be aware of others.
“COVID itself seems to cause hormonal changes that can lead to erection and menstrual cycle problems,” explained Dr. Putrino. “But these may not be picked up in a visit if the patient is complaining of other signs of long COVID.”
It’s not just what symptoms are, but when they began to occur, he added. “Usually, these symptoms either start with the initial COVID infection, or begin sometime within 3 months after the acute COVID infection. That’s why it’s important for people with COVID to take notice of anything unusual that crops up within a month or 2 after getting sick.”
Can you prevent long COVID?
You can’t, but one of the best ways to reduce your risk is to get vaccinated. Getting at least one dose of a COVID vaccine before you test positive for COVID lowers your risk of long COVID by about 35% according to a study published in Antimicrobial Stewardship & Healthcare Epidemiology. Unvaccinated people who recovered from COVID, and then got a vaccine, lowered their own long COVID risk by 27%.
In addition, a study published in JAMA Internal Medicine found that women who were infected with COVID were less likely to go on to get long COVID and/or have less debilitating symptoms if they had a healthy lifestyle, which included the following: a healthy weight (a body mass index between 18.5 and 24.7 kg/m2), never-smoker, moderate alcohol consumption, a high-quality diet, 7-9 hours of sleep a night, and at least 150 minutes per week of physical activity
But Ms. McCorkell noted that she herself had a healthy preinfection lifestyle but got long COVID anyway, suggesting these approaches don’t work for everyone.
“I think one reason my symptoms weren’t addressed by primary care physicians for so long is because they looked at me and saw that I was young and healthy, so they dismissed my reports as being all in my head,” she explained. “But we know now anyone can get long COVID, regardless of age, health status, or disease severity. That’s why it’s so important that primary care physicians be able to recognize symptoms.”
A version of this article first appeared on WebMD.com.
Desperate long COVID patients turn to unproven alternative therapies
Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The Schenectady, N.Y., businesswoman spent 2 months in the hospital after catching the disease in March 2020. That September, she was diagnosed with long COVID.
“Even a simple task such as unloading the dishwasher became a major challenge,” she says.
Over the next several months, Ms. McNulty saw a range of specialists, including neurologists, pulmonologists, and cardiologists. She had months of physical therapy and respiratory therapy to help regain strength and lung function. While many of the doctors she saw were sympathetic to what she was going through, not all were.
“I saw one neurologist who told me to my face that she didn’t believe in long COVID,” she recalls. “It was particularly astonishing since the hospital they were affiliated with had a long COVID clinic.”
Ms. McNulty began to connect with other patients with long COVID through a support group she created at the end of 2020 on the social media app Clubhouse. They exchanged ideas and stories about what had helped one another, which led her to try, over the next year, a plant-based diet, Chinese medicine, and vitamin C supplements, among other treatments.
She also acted on unscientific reports she found online and did her own research, which led her to discover claims that some asthma patients with chronic coughing responded well to halotherapy, or dry salt therapy, during which patients inhale micro-particles of salt into their lungs to reduce inflammation, widen airways, and thin mucus. She’s been doing this procedure at a clinic near her home for over a year and credits it with helping with her chronic cough, especially as she recovers from her second bout of COVID-19.
It’s not cheap – a single half-hour session can cost up to $50 and isn’t covered by insurance. There’s also no good research to suggest that it can help with long COVID, according to the Cleveland Clinic.
Ms. McNulty understands that but says many people who live with long COVID turn to these treatments out of a sense of desperation.
“When it comes to this condition, we kind of have to be our own advocates. People are so desperate and feel so gaslit by doctors who don’t believe in their symptoms that they play Russian roulette with their body,” she says. “Most just want some hope and a way to relieve pain.”
Across the country, 16 million Americans have long COVID, according to the Brookings Institution’s analysis of a 2022 Census Bureau report. The report also estimated that up to a quarter of them have such debilitating symptoms that they are no longer able to work. While long COVID centers may offer therapies to help relieve symptoms, “there are no evidence-based established treatments for long COVID at this point,” says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also a lot of people out to make a buck who are selling unproven and disproven therapies.”
Sniffing out the snake oil
With few evidence-based treatments for long COVID, patients with debilitating symptoms can be tempted by unproven options. One that has gotten a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who have decompression sickness, or “the bends.” It’s also being touted by some clinics as an effective treatment for long COVID.
A very small trial of 73 patients with long COVID, published in the journal Scientific Reports, found that those treated in a high-pressure oxygen system 5 days a week for 2 months showed improvements in brain fog, pain, energy, sleep, anxiety, and depression, compared with similar patients who got sham treatments. But larger studies are needed to show how well it works, notes Dr. Schamess.
“It’s very expensive – roughly $120 per session – and there just isn’t the evidence there to support its use,” he says.
In addition, the therapy itself carries risks, such as ear and sinus pain, middle ear injury, temporary vision changes, and, very rarely, lung collapse, according to the U.S. Food and Drug Administration.
One “particularly troubling” treatment being offered, says Kathleen Bell, MD, chair of the department of physical medicine and rehabilitation at the University of Texas Southwestern Medical Center, is stem cell therapy. This therapy is still in its infancy, but it’s being marketed by some clinics as a way to prevent COVID-19 and also treat long-haul symptoms.
The FDA has issued advisories that there are no products approved to treat long COVID and recommends against their use, except in a clinical trial.
“There’s absolutely no regulation – you don’t know what you’re getting, and there’s no research to suggest this therapy even works,” says Dr. Bell. It’s also prohibitively expensive – one Cayman Islands–based company advertises its treatment for as much as $25,000.
Patients with long COVID are even traveling as far as Cyprus, Germany, and Switzerland for a procedure known as blood washing, in which large needles are inserted into veins to filter blood and remove lipids and inflammatory proteins, the British Medical Journal reported in July. Some patients are also prescribed blood thinners to remove microscopic blood clots that may contribute to long COVID. But this treatment is also expensive, with many people paying $10,000-$15,000 out of pocket, and there’s no published evidence to suggest it works, according to the BMJ.
It can be particularly hard to discern what may work and what’s unproven, since many primary care providers are themselves unfamiliar with even traditional long COVID treatments, Dr. Bell says.
Sorting through supplements
Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many patients with long COVID enter her office with bags of supplements.
“There’s no data on them, and in large quantities, they may even be harmful,” she says.
Instead, she works closely with the Cleveland Clinic’s long COVID center to do a thorough workup of each patient, which often includes screening for certain nutritional deficiencies.
“Anecdotally, we do see many patients with long COVID who are deficient in these vitamins and minerals,” says Dr. Lin. “If someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to institute some dietary changes.”
This usually involves a plant-based, anti-inflammatory eating pattern such as the Mediterranean diet, which is rich in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats such as olive oil and avocados.
Other supplements some doctors recommend for patients with long COVID are meant to treat inflammation, Dr. Bell says, although there’s not good evidence they work. One is the antioxidant coenzyme Q10.
But a small preprint study published in The Lancet, of 121 patients with long COVID who took 500 milligrams a day of coenzyme Q10 for 6 weeks saw no differences in recovery, compared with those who took a placebo. Because the study is still a preprint, it has not been peer-reviewed.
Another is probiotics. A small study, published in the journal Infectious Diseases Diagnosis & Treatment, found that a blend of five lactobacillus probiotics, along with a prebiotic called inulin, taken for 30 days, helped with long-term COVID symptoms such as coughing and fatigue. But larger studies need to be done to support their use.
One that may have more promise is omega-3 fatty acids. Like many other supplements, these may help with long COVID by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone who works with long COVID patients. Researchers at the Mount Sinai School of Medicine, New York, are studying whether a supplement can help patients who have lost their sense of taste or smell after an infection, but results aren’t yet available.
Among the few alternatives that have been shown to help patients are mindfulness-based therapies – in particular, mindfulness-based forms of exercise such as tai chi and qi gong may be helpful, as they combine a gentle workout with stress reduction.
“Both incorporate meditation, which helps not only to relieve some of the anxiety associated with long COVID but allows patients to redirect their thought process so that they can cope with symptoms better,” says Dr. Flanagan.
A 2022 study, published in BMJ Open, found that these two activities reduced inflammatory markers and improved respiratory muscle strength and function in patients recovering from COVID-19.
“I recommend these activities to all my long COVID patients, as it’s inexpensive and easy to find classes to do either at home or in their community,” he says. “Even if it doesn’t improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.”
A version of this article first appeared on WebMD.com.
Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The Schenectady, N.Y., businesswoman spent 2 months in the hospital after catching the disease in March 2020. That September, she was diagnosed with long COVID.
“Even a simple task such as unloading the dishwasher became a major challenge,” she says.
Over the next several months, Ms. McNulty saw a range of specialists, including neurologists, pulmonologists, and cardiologists. She had months of physical therapy and respiratory therapy to help regain strength and lung function. While many of the doctors she saw were sympathetic to what she was going through, not all were.
“I saw one neurologist who told me to my face that she didn’t believe in long COVID,” she recalls. “It was particularly astonishing since the hospital they were affiliated with had a long COVID clinic.”
Ms. McNulty began to connect with other patients with long COVID through a support group she created at the end of 2020 on the social media app Clubhouse. They exchanged ideas and stories about what had helped one another, which led her to try, over the next year, a plant-based diet, Chinese medicine, and vitamin C supplements, among other treatments.
She also acted on unscientific reports she found online and did her own research, which led her to discover claims that some asthma patients with chronic coughing responded well to halotherapy, or dry salt therapy, during which patients inhale micro-particles of salt into their lungs to reduce inflammation, widen airways, and thin mucus. She’s been doing this procedure at a clinic near her home for over a year and credits it with helping with her chronic cough, especially as she recovers from her second bout of COVID-19.
It’s not cheap – a single half-hour session can cost up to $50 and isn’t covered by insurance. There’s also no good research to suggest that it can help with long COVID, according to the Cleveland Clinic.
Ms. McNulty understands that but says many people who live with long COVID turn to these treatments out of a sense of desperation.
“When it comes to this condition, we kind of have to be our own advocates. People are so desperate and feel so gaslit by doctors who don’t believe in their symptoms that they play Russian roulette with their body,” she says. “Most just want some hope and a way to relieve pain.”
Across the country, 16 million Americans have long COVID, according to the Brookings Institution’s analysis of a 2022 Census Bureau report. The report also estimated that up to a quarter of them have such debilitating symptoms that they are no longer able to work. While long COVID centers may offer therapies to help relieve symptoms, “there are no evidence-based established treatments for long COVID at this point,” says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also a lot of people out to make a buck who are selling unproven and disproven therapies.”
Sniffing out the snake oil
With few evidence-based treatments for long COVID, patients with debilitating symptoms can be tempted by unproven options. One that has gotten a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who have decompression sickness, or “the bends.” It’s also being touted by some clinics as an effective treatment for long COVID.
A very small trial of 73 patients with long COVID, published in the journal Scientific Reports, found that those treated in a high-pressure oxygen system 5 days a week for 2 months showed improvements in brain fog, pain, energy, sleep, anxiety, and depression, compared with similar patients who got sham treatments. But larger studies are needed to show how well it works, notes Dr. Schamess.
“It’s very expensive – roughly $120 per session – and there just isn’t the evidence there to support its use,” he says.
In addition, the therapy itself carries risks, such as ear and sinus pain, middle ear injury, temporary vision changes, and, very rarely, lung collapse, according to the U.S. Food and Drug Administration.
One “particularly troubling” treatment being offered, says Kathleen Bell, MD, chair of the department of physical medicine and rehabilitation at the University of Texas Southwestern Medical Center, is stem cell therapy. This therapy is still in its infancy, but it’s being marketed by some clinics as a way to prevent COVID-19 and also treat long-haul symptoms.
The FDA has issued advisories that there are no products approved to treat long COVID and recommends against their use, except in a clinical trial.
“There’s absolutely no regulation – you don’t know what you’re getting, and there’s no research to suggest this therapy even works,” says Dr. Bell. It’s also prohibitively expensive – one Cayman Islands–based company advertises its treatment for as much as $25,000.
Patients with long COVID are even traveling as far as Cyprus, Germany, and Switzerland for a procedure known as blood washing, in which large needles are inserted into veins to filter blood and remove lipids and inflammatory proteins, the British Medical Journal reported in July. Some patients are also prescribed blood thinners to remove microscopic blood clots that may contribute to long COVID. But this treatment is also expensive, with many people paying $10,000-$15,000 out of pocket, and there’s no published evidence to suggest it works, according to the BMJ.
It can be particularly hard to discern what may work and what’s unproven, since many primary care providers are themselves unfamiliar with even traditional long COVID treatments, Dr. Bell says.
Sorting through supplements
Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many patients with long COVID enter her office with bags of supplements.
“There’s no data on them, and in large quantities, they may even be harmful,” she says.
Instead, she works closely with the Cleveland Clinic’s long COVID center to do a thorough workup of each patient, which often includes screening for certain nutritional deficiencies.
“Anecdotally, we do see many patients with long COVID who are deficient in these vitamins and minerals,” says Dr. Lin. “If someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to institute some dietary changes.”
This usually involves a plant-based, anti-inflammatory eating pattern such as the Mediterranean diet, which is rich in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats such as olive oil and avocados.
Other supplements some doctors recommend for patients with long COVID are meant to treat inflammation, Dr. Bell says, although there’s not good evidence they work. One is the antioxidant coenzyme Q10.
But a small preprint study published in The Lancet, of 121 patients with long COVID who took 500 milligrams a day of coenzyme Q10 for 6 weeks saw no differences in recovery, compared with those who took a placebo. Because the study is still a preprint, it has not been peer-reviewed.
Another is probiotics. A small study, published in the journal Infectious Diseases Diagnosis & Treatment, found that a blend of five lactobacillus probiotics, along with a prebiotic called inulin, taken for 30 days, helped with long-term COVID symptoms such as coughing and fatigue. But larger studies need to be done to support their use.
One that may have more promise is omega-3 fatty acids. Like many other supplements, these may help with long COVID by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone who works with long COVID patients. Researchers at the Mount Sinai School of Medicine, New York, are studying whether a supplement can help patients who have lost their sense of taste or smell after an infection, but results aren’t yet available.
Among the few alternatives that have been shown to help patients are mindfulness-based therapies – in particular, mindfulness-based forms of exercise such as tai chi and qi gong may be helpful, as they combine a gentle workout with stress reduction.
“Both incorporate meditation, which helps not only to relieve some of the anxiety associated with long COVID but allows patients to redirect their thought process so that they can cope with symptoms better,” says Dr. Flanagan.
A 2022 study, published in BMJ Open, found that these two activities reduced inflammatory markers and improved respiratory muscle strength and function in patients recovering from COVID-19.
“I recommend these activities to all my long COVID patients, as it’s inexpensive and easy to find classes to do either at home or in their community,” he says. “Even if it doesn’t improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.”
A version of this article first appeared on WebMD.com.
Entrepreneur Maya McNulty, 49, was one of the first victims of the COVID-19 pandemic. The Schenectady, N.Y., businesswoman spent 2 months in the hospital after catching the disease in March 2020. That September, she was diagnosed with long COVID.
“Even a simple task such as unloading the dishwasher became a major challenge,” she says.
Over the next several months, Ms. McNulty saw a range of specialists, including neurologists, pulmonologists, and cardiologists. She had months of physical therapy and respiratory therapy to help regain strength and lung function. While many of the doctors she saw were sympathetic to what she was going through, not all were.
“I saw one neurologist who told me to my face that she didn’t believe in long COVID,” she recalls. “It was particularly astonishing since the hospital they were affiliated with had a long COVID clinic.”
Ms. McNulty began to connect with other patients with long COVID through a support group she created at the end of 2020 on the social media app Clubhouse. They exchanged ideas and stories about what had helped one another, which led her to try, over the next year, a plant-based diet, Chinese medicine, and vitamin C supplements, among other treatments.
She also acted on unscientific reports she found online and did her own research, which led her to discover claims that some asthma patients with chronic coughing responded well to halotherapy, or dry salt therapy, during which patients inhale micro-particles of salt into their lungs to reduce inflammation, widen airways, and thin mucus. She’s been doing this procedure at a clinic near her home for over a year and credits it with helping with her chronic cough, especially as she recovers from her second bout of COVID-19.
It’s not cheap – a single half-hour session can cost up to $50 and isn’t covered by insurance. There’s also no good research to suggest that it can help with long COVID, according to the Cleveland Clinic.
Ms. McNulty understands that but says many people who live with long COVID turn to these treatments out of a sense of desperation.
“When it comes to this condition, we kind of have to be our own advocates. People are so desperate and feel so gaslit by doctors who don’t believe in their symptoms that they play Russian roulette with their body,” she says. “Most just want some hope and a way to relieve pain.”
Across the country, 16 million Americans have long COVID, according to the Brookings Institution’s analysis of a 2022 Census Bureau report. The report also estimated that up to a quarter of them have such debilitating symptoms that they are no longer able to work. While long COVID centers may offer therapies to help relieve symptoms, “there are no evidence-based established treatments for long COVID at this point,” says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. “You can’t blame patients for looking for alternative remedies to help them. Unfortunately, there are also a lot of people out to make a buck who are selling unproven and disproven therapies.”
Sniffing out the snake oil
With few evidence-based treatments for long COVID, patients with debilitating symptoms can be tempted by unproven options. One that has gotten a lot of attention is hyperbaric oxygen. This therapy has traditionally been used to treat divers who have decompression sickness, or “the bends.” It’s also being touted by some clinics as an effective treatment for long COVID.
A very small trial of 73 patients with long COVID, published in the journal Scientific Reports, found that those treated in a high-pressure oxygen system 5 days a week for 2 months showed improvements in brain fog, pain, energy, sleep, anxiety, and depression, compared with similar patients who got sham treatments. But larger studies are needed to show how well it works, notes Dr. Schamess.
“It’s very expensive – roughly $120 per session – and there just isn’t the evidence there to support its use,” he says.
In addition, the therapy itself carries risks, such as ear and sinus pain, middle ear injury, temporary vision changes, and, very rarely, lung collapse, according to the U.S. Food and Drug Administration.
One “particularly troubling” treatment being offered, says Kathleen Bell, MD, chair of the department of physical medicine and rehabilitation at the University of Texas Southwestern Medical Center, is stem cell therapy. This therapy is still in its infancy, but it’s being marketed by some clinics as a way to prevent COVID-19 and also treat long-haul symptoms.
The FDA has issued advisories that there are no products approved to treat long COVID and recommends against their use, except in a clinical trial.
“There’s absolutely no regulation – you don’t know what you’re getting, and there’s no research to suggest this therapy even works,” says Dr. Bell. It’s also prohibitively expensive – one Cayman Islands–based company advertises its treatment for as much as $25,000.
Patients with long COVID are even traveling as far as Cyprus, Germany, and Switzerland for a procedure known as blood washing, in which large needles are inserted into veins to filter blood and remove lipids and inflammatory proteins, the British Medical Journal reported in July. Some patients are also prescribed blood thinners to remove microscopic blood clots that may contribute to long COVID. But this treatment is also expensive, with many people paying $10,000-$15,000 out of pocket, and there’s no published evidence to suggest it works, according to the BMJ.
It can be particularly hard to discern what may work and what’s unproven, since many primary care providers are themselves unfamiliar with even traditional long COVID treatments, Dr. Bell says.
Sorting through supplements
Yufang Lin, MD, an integrative specialist at the Cleveland Clinic, says many patients with long COVID enter her office with bags of supplements.
“There’s no data on them, and in large quantities, they may even be harmful,” she says.
Instead, she works closely with the Cleveland Clinic’s long COVID center to do a thorough workup of each patient, which often includes screening for certain nutritional deficiencies.
“Anecdotally, we do see many patients with long COVID who are deficient in these vitamins and minerals,” says Dr. Lin. “If someone is low, we will suggest the appropriate supplement. Otherwise, we work with them to institute some dietary changes.”
This usually involves a plant-based, anti-inflammatory eating pattern such as the Mediterranean diet, which is rich in fruits, vegetables, whole grains, nuts, fatty fish, and healthy fats such as olive oil and avocados.
Other supplements some doctors recommend for patients with long COVID are meant to treat inflammation, Dr. Bell says, although there’s not good evidence they work. One is the antioxidant coenzyme Q10.
But a small preprint study published in The Lancet, of 121 patients with long COVID who took 500 milligrams a day of coenzyme Q10 for 6 weeks saw no differences in recovery, compared with those who took a placebo. Because the study is still a preprint, it has not been peer-reviewed.
Another is probiotics. A small study, published in the journal Infectious Diseases Diagnosis & Treatment, found that a blend of five lactobacillus probiotics, along with a prebiotic called inulin, taken for 30 days, helped with long-term COVID symptoms such as coughing and fatigue. But larger studies need to be done to support their use.
One that may have more promise is omega-3 fatty acids. Like many other supplements, these may help with long COVID by easing inflammation, says Steven Flanagan, MD, a rehabilitation medicine specialist at NYU Langone who works with long COVID patients. Researchers at the Mount Sinai School of Medicine, New York, are studying whether a supplement can help patients who have lost their sense of taste or smell after an infection, but results aren’t yet available.
Among the few alternatives that have been shown to help patients are mindfulness-based therapies – in particular, mindfulness-based forms of exercise such as tai chi and qi gong may be helpful, as they combine a gentle workout with stress reduction.
“Both incorporate meditation, which helps not only to relieve some of the anxiety associated with long COVID but allows patients to redirect their thought process so that they can cope with symptoms better,” says Dr. Flanagan.
A 2022 study, published in BMJ Open, found that these two activities reduced inflammatory markers and improved respiratory muscle strength and function in patients recovering from COVID-19.
“I recommend these activities to all my long COVID patients, as it’s inexpensive and easy to find classes to do either at home or in their community,” he says. “Even if it doesn’t improve their long COVID symptoms, it has other benefits such as increased strength and flexibility that can boost their overall health.”
A version of this article first appeared on WebMD.com.
Does your patient have long COVID? Some clues on what to look for
New Yorker Lyss Stern came down with COVID-19 at the beginning of the pandemic, in March 2020. She ran a 103° F fever for 5 days straight and was bedridden for several weeks. Yet symptoms such as a persistent headache and tinnitus, or ringing in her ears, lingered.
“Four months later, I still couldn’t walk four blocks without becoming winded,” says Ms. Stern, 48. Five months after her diagnosis, her doctors finally gave a name to her condition: long COVID.
Long COVID is known by many different names: long-haul COVID, postacute COVID-19, or even chronic COVID. It’s a general term used to describe the range of ongoing health problems people can have after their infection.
Another earlier report found that one in five COVID-19 survivors between the ages of 18 and 64, and one in four survivors aged at least 65, have a health condition that may be related to their previous bout with the virus.
Unfortunately, there’s no easy way to screen for long COVID.
“There’s no definite laboratory test to give us a diagnosis,” says Daniel Sterman, MD, director of the division of pulmonary, critical care and sleep medicine at NYU Langone Health in New York. “We’re also still working on a definition, since there’s a whole slew of symptoms associated with the condition.”
It’s a challenge that Ms. Stern is personally acquainted with after she bounced from doctor to doctor for several months before she found her way to the Center for Post-COVID Care at Mount Sinai Hospital in New York. “It was a relief to have an official diagnosis, even if it didn’t bring immediate answers,” she says.
What to look for
Many people who become infected with COVID-19 get symptoms that linger for 2-3 weeks after their infection has cleared, says Brittany Baloun, a certified nurse practitioner at the Cleveland Clinic. “It’s not unusual to feel some residual shortness of breath or heart palpitations, especially if you are exerting yourself,” she says. “The acute phase of COVID itself can last for up to 14 days. But if it’s been 30 days since you came down with the virus, and your symptoms are still there and not improving, it indicates some level of long COVID.”
More than 200 symptoms can be linked to long COVID. But perhaps the one that stands out the most is constant fatigue that interferes with daily life.
“We often hear that these patients can’t fold the laundry or take a short walk with their dog without feeling exhausted,” Ms. Baloun says.
This exhaustion may get worse after patients exercise or do something mentally taxing, a condition known as postexertional malaise.
“It can be crushing fatigue; I may clean my room for an hour and talk to a friend, and the next day feel like I can’t get out of bed,” says Allison Guy, 36, who was diagnosed with COVID in February 2021. She’s now a long-COVID advocate in Washington.
Other symptoms can be divided into different categories, which include cardiac/lung symptoms such as shortness of breath, coughing, chest pain, and heart palpitations, as well as neurologic symptoms.
One of the most common neurologic symptoms is brain fog, says Andrew Schamess, MD, a professor of internal medicine at Ohio State University Wexner Medical Center, Columbus, who runs its post-COVID recovery program. “Patients describe feeling ‘fuzzy’ or ‘spacey,’ and often report that they are forgetful or have memory problems,” he says. Others include:
- Headache.
- Sleep problems. One 2022 study from the Cleveland Clinic found that more than 40% of patients with long COVID reported sleep disturbances.
- Dizziness when standing.
- Pins-and-needles feelings.
- Changes in smell or taste.
- Depression or anxiety.
You could also have digestive symptoms such as diarrhea or stomach pain. Other symptoms include joint or muscle pain, rashes, or changes in menstrual cycles.
Risk of having other health conditions
People who have had COVID-19, particularly a severe case, may be more at risk of getting other health conditions, such as:
- Type 2 diabetes.
- Kidney failure.
- Pulmonary embolism, or a blood clot in the lung.
- Myocarditis, an inflamed heart.
While it’s hard to say precisely whether these conditions were caused by COVID, they are most likely linked to it, says Dr. Schamess. A March 2022 study published in The Lancet Diabetes & Endocrinology, for example, found that people who had recovered from COVID-19 had a 40% higher risk of being diagnosed with type 2 diabetes over the next year.
“We don’t know for sure that infection with COVID-19 triggered someone’s diabetes – it may have been that they already had risk factors and the virus pushed them over the edge,” he says.
COVID-19 itself may also worsen conditions you already have, such as asthma, sleep apnea, or fibromyalgia. “We see patients with previously mild asthma who come in constantly coughing and wheezing, for example,” says Dr. Schamess. “They usually respond well once we start aggressive treatment.” That might include a continuous positive airway pressure, or CPAP, setup to help treat sleep apnea, or gabapentin to treat fibromyalgia symptoms.
Is it long COVID or something else?
Long COVID can cause a long list of symptoms, and they can easily mean other ailments. That’s one reason why, if your symptoms last for more than a month, it’s important to see a doctor, Ms. Baloun says. They can run a wide variety of tests to check for other conditions, such as a thyroid disorder or vitamin deficiency, that could be confused with long COVID.
They should also run blood tests such as D-dimer. This helps rule out a pulmonary embolism, which can be a complication of COVID-19 and also causes symptoms that may mimic long COVID, such as breathlessness and anxiety. They will also run tests to look for inflammation, Ms. Baloun says.
“These tests can’t provide definitive answers, but they can help provide clues as to what’s causing symptoms and whether they are related to long COVID,” she says.
What’s just as important, says Dr. Schamess, is a careful medical history. This can help pinpoint exactly when symptoms started, when they worsened, and whether anything else could have triggered them.
“I saw a patient recently who presented with symptoms of brain fog, memory loss, fatigue, headache, and sleep disturbance 5 months after she had COVID-19,” says Dr. Schamess. “After we talked, we realized that her symptoms were due to a fainting spell a couple of months earlier where she whacked her head very hard. She didn’t have long COVID – she had a concussion. But I wouldn’t have picked that up if I had just run a whole battery of tests.”
Ms. Stern agrees. “If you have long COVID, you may come across doctors who dismiss your symptoms, especially if your workups don’t show an obvious problem,” she says. “But you know your body. If it still seems like something is wrong, then you need to continue to push until you find answers.”
A version of this article first appeared on WebMD.com.
New Yorker Lyss Stern came down with COVID-19 at the beginning of the pandemic, in March 2020. She ran a 103° F fever for 5 days straight and was bedridden for several weeks. Yet symptoms such as a persistent headache and tinnitus, or ringing in her ears, lingered.
“Four months later, I still couldn’t walk four blocks without becoming winded,” says Ms. Stern, 48. Five months after her diagnosis, her doctors finally gave a name to her condition: long COVID.
Long COVID is known by many different names: long-haul COVID, postacute COVID-19, or even chronic COVID. It’s a general term used to describe the range of ongoing health problems people can have after their infection.
Another earlier report found that one in five COVID-19 survivors between the ages of 18 and 64, and one in four survivors aged at least 65, have a health condition that may be related to their previous bout with the virus.
Unfortunately, there’s no easy way to screen for long COVID.
“There’s no definite laboratory test to give us a diagnosis,” says Daniel Sterman, MD, director of the division of pulmonary, critical care and sleep medicine at NYU Langone Health in New York. “We’re also still working on a definition, since there’s a whole slew of symptoms associated with the condition.”
It’s a challenge that Ms. Stern is personally acquainted with after she bounced from doctor to doctor for several months before she found her way to the Center for Post-COVID Care at Mount Sinai Hospital in New York. “It was a relief to have an official diagnosis, even if it didn’t bring immediate answers,” she says.
What to look for
Many people who become infected with COVID-19 get symptoms that linger for 2-3 weeks after their infection has cleared, says Brittany Baloun, a certified nurse practitioner at the Cleveland Clinic. “It’s not unusual to feel some residual shortness of breath or heart palpitations, especially if you are exerting yourself,” she says. “The acute phase of COVID itself can last for up to 14 days. But if it’s been 30 days since you came down with the virus, and your symptoms are still there and not improving, it indicates some level of long COVID.”
More than 200 symptoms can be linked to long COVID. But perhaps the one that stands out the most is constant fatigue that interferes with daily life.
“We often hear that these patients can’t fold the laundry or take a short walk with their dog without feeling exhausted,” Ms. Baloun says.
This exhaustion may get worse after patients exercise or do something mentally taxing, a condition known as postexertional malaise.
“It can be crushing fatigue; I may clean my room for an hour and talk to a friend, and the next day feel like I can’t get out of bed,” says Allison Guy, 36, who was diagnosed with COVID in February 2021. She’s now a long-COVID advocate in Washington.
Other symptoms can be divided into different categories, which include cardiac/lung symptoms such as shortness of breath, coughing, chest pain, and heart palpitations, as well as neurologic symptoms.
One of the most common neurologic symptoms is brain fog, says Andrew Schamess, MD, a professor of internal medicine at Ohio State University Wexner Medical Center, Columbus, who runs its post-COVID recovery program. “Patients describe feeling ‘fuzzy’ or ‘spacey,’ and often report that they are forgetful or have memory problems,” he says. Others include:
- Headache.
- Sleep problems. One 2022 study from the Cleveland Clinic found that more than 40% of patients with long COVID reported sleep disturbances.
- Dizziness when standing.
- Pins-and-needles feelings.
- Changes in smell or taste.
- Depression or anxiety.
You could also have digestive symptoms such as diarrhea or stomach pain. Other symptoms include joint or muscle pain, rashes, or changes in menstrual cycles.
Risk of having other health conditions
People who have had COVID-19, particularly a severe case, may be more at risk of getting other health conditions, such as:
- Type 2 diabetes.
- Kidney failure.
- Pulmonary embolism, or a blood clot in the lung.
- Myocarditis, an inflamed heart.
While it’s hard to say precisely whether these conditions were caused by COVID, they are most likely linked to it, says Dr. Schamess. A March 2022 study published in The Lancet Diabetes & Endocrinology, for example, found that people who had recovered from COVID-19 had a 40% higher risk of being diagnosed with type 2 diabetes over the next year.
“We don’t know for sure that infection with COVID-19 triggered someone’s diabetes – it may have been that they already had risk factors and the virus pushed them over the edge,” he says.
COVID-19 itself may also worsen conditions you already have, such as asthma, sleep apnea, or fibromyalgia. “We see patients with previously mild asthma who come in constantly coughing and wheezing, for example,” says Dr. Schamess. “They usually respond well once we start aggressive treatment.” That might include a continuous positive airway pressure, or CPAP, setup to help treat sleep apnea, or gabapentin to treat fibromyalgia symptoms.
Is it long COVID or something else?
Long COVID can cause a long list of symptoms, and they can easily mean other ailments. That’s one reason why, if your symptoms last for more than a month, it’s important to see a doctor, Ms. Baloun says. They can run a wide variety of tests to check for other conditions, such as a thyroid disorder or vitamin deficiency, that could be confused with long COVID.
They should also run blood tests such as D-dimer. This helps rule out a pulmonary embolism, which can be a complication of COVID-19 and also causes symptoms that may mimic long COVID, such as breathlessness and anxiety. They will also run tests to look for inflammation, Ms. Baloun says.
“These tests can’t provide definitive answers, but they can help provide clues as to what’s causing symptoms and whether they are related to long COVID,” she says.
What’s just as important, says Dr. Schamess, is a careful medical history. This can help pinpoint exactly when symptoms started, when they worsened, and whether anything else could have triggered them.
“I saw a patient recently who presented with symptoms of brain fog, memory loss, fatigue, headache, and sleep disturbance 5 months after she had COVID-19,” says Dr. Schamess. “After we talked, we realized that her symptoms were due to a fainting spell a couple of months earlier where she whacked her head very hard. She didn’t have long COVID – she had a concussion. But I wouldn’t have picked that up if I had just run a whole battery of tests.”
Ms. Stern agrees. “If you have long COVID, you may come across doctors who dismiss your symptoms, especially if your workups don’t show an obvious problem,” she says. “But you know your body. If it still seems like something is wrong, then you need to continue to push until you find answers.”
A version of this article first appeared on WebMD.com.
New Yorker Lyss Stern came down with COVID-19 at the beginning of the pandemic, in March 2020. She ran a 103° F fever for 5 days straight and was bedridden for several weeks. Yet symptoms such as a persistent headache and tinnitus, or ringing in her ears, lingered.
“Four months later, I still couldn’t walk four blocks without becoming winded,” says Ms. Stern, 48. Five months after her diagnosis, her doctors finally gave a name to her condition: long COVID.
Long COVID is known by many different names: long-haul COVID, postacute COVID-19, or even chronic COVID. It’s a general term used to describe the range of ongoing health problems people can have after their infection.
Another earlier report found that one in five COVID-19 survivors between the ages of 18 and 64, and one in four survivors aged at least 65, have a health condition that may be related to their previous bout with the virus.
Unfortunately, there’s no easy way to screen for long COVID.
“There’s no definite laboratory test to give us a diagnosis,” says Daniel Sterman, MD, director of the division of pulmonary, critical care and sleep medicine at NYU Langone Health in New York. “We’re also still working on a definition, since there’s a whole slew of symptoms associated with the condition.”
It’s a challenge that Ms. Stern is personally acquainted with after she bounced from doctor to doctor for several months before she found her way to the Center for Post-COVID Care at Mount Sinai Hospital in New York. “It was a relief to have an official diagnosis, even if it didn’t bring immediate answers,” she says.
What to look for
Many people who become infected with COVID-19 get symptoms that linger for 2-3 weeks after their infection has cleared, says Brittany Baloun, a certified nurse practitioner at the Cleveland Clinic. “It’s not unusual to feel some residual shortness of breath or heart palpitations, especially if you are exerting yourself,” she says. “The acute phase of COVID itself can last for up to 14 days. But if it’s been 30 days since you came down with the virus, and your symptoms are still there and not improving, it indicates some level of long COVID.”
More than 200 symptoms can be linked to long COVID. But perhaps the one that stands out the most is constant fatigue that interferes with daily life.
“We often hear that these patients can’t fold the laundry or take a short walk with their dog without feeling exhausted,” Ms. Baloun says.
This exhaustion may get worse after patients exercise or do something mentally taxing, a condition known as postexertional malaise.
“It can be crushing fatigue; I may clean my room for an hour and talk to a friend, and the next day feel like I can’t get out of bed,” says Allison Guy, 36, who was diagnosed with COVID in February 2021. She’s now a long-COVID advocate in Washington.
Other symptoms can be divided into different categories, which include cardiac/lung symptoms such as shortness of breath, coughing, chest pain, and heart palpitations, as well as neurologic symptoms.
One of the most common neurologic symptoms is brain fog, says Andrew Schamess, MD, a professor of internal medicine at Ohio State University Wexner Medical Center, Columbus, who runs its post-COVID recovery program. “Patients describe feeling ‘fuzzy’ or ‘spacey,’ and often report that they are forgetful or have memory problems,” he says. Others include:
- Headache.
- Sleep problems. One 2022 study from the Cleveland Clinic found that more than 40% of patients with long COVID reported sleep disturbances.
- Dizziness when standing.
- Pins-and-needles feelings.
- Changes in smell or taste.
- Depression or anxiety.
You could also have digestive symptoms such as diarrhea or stomach pain. Other symptoms include joint or muscle pain, rashes, or changes in menstrual cycles.
Risk of having other health conditions
People who have had COVID-19, particularly a severe case, may be more at risk of getting other health conditions, such as:
- Type 2 diabetes.
- Kidney failure.
- Pulmonary embolism, or a blood clot in the lung.
- Myocarditis, an inflamed heart.
While it’s hard to say precisely whether these conditions were caused by COVID, they are most likely linked to it, says Dr. Schamess. A March 2022 study published in The Lancet Diabetes & Endocrinology, for example, found that people who had recovered from COVID-19 had a 40% higher risk of being diagnosed with type 2 diabetes over the next year.
“We don’t know for sure that infection with COVID-19 triggered someone’s diabetes – it may have been that they already had risk factors and the virus pushed them over the edge,” he says.
COVID-19 itself may also worsen conditions you already have, such as asthma, sleep apnea, or fibromyalgia. “We see patients with previously mild asthma who come in constantly coughing and wheezing, for example,” says Dr. Schamess. “They usually respond well once we start aggressive treatment.” That might include a continuous positive airway pressure, or CPAP, setup to help treat sleep apnea, or gabapentin to treat fibromyalgia symptoms.
Is it long COVID or something else?
Long COVID can cause a long list of symptoms, and they can easily mean other ailments. That’s one reason why, if your symptoms last for more than a month, it’s important to see a doctor, Ms. Baloun says. They can run a wide variety of tests to check for other conditions, such as a thyroid disorder or vitamin deficiency, that could be confused with long COVID.
They should also run blood tests such as D-dimer. This helps rule out a pulmonary embolism, which can be a complication of COVID-19 and also causes symptoms that may mimic long COVID, such as breathlessness and anxiety. They will also run tests to look for inflammation, Ms. Baloun says.
“These tests can’t provide definitive answers, but they can help provide clues as to what’s causing symptoms and whether they are related to long COVID,” she says.
What’s just as important, says Dr. Schamess, is a careful medical history. This can help pinpoint exactly when symptoms started, when they worsened, and whether anything else could have triggered them.
“I saw a patient recently who presented with symptoms of brain fog, memory loss, fatigue, headache, and sleep disturbance 5 months after she had COVID-19,” says Dr. Schamess. “After we talked, we realized that her symptoms were due to a fainting spell a couple of months earlier where she whacked her head very hard. She didn’t have long COVID – she had a concussion. But I wouldn’t have picked that up if I had just run a whole battery of tests.”
Ms. Stern agrees. “If you have long COVID, you may come across doctors who dismiss your symptoms, especially if your workups don’t show an obvious problem,” she says. “But you know your body. If it still seems like something is wrong, then you need to continue to push until you find answers.”
A version of this article first appeared on WebMD.com.