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Add this to the list of long COVID symptoms: Stigma
Most people with long COVID find they’re facing stigma due to their condition, according to a new report from researchers in the United Kingdom. In short: Relatives and friends may not believe they’re truly sick.
The U.K. team found that more than three-quarters of people studied had experienced stigma often or always.
In fact, 95% of people with long COVID faced at least one type of stigma at least sometimes, according to the study, published in November in the journal PLOS One.
Those conclusions had surprised the study’s lead researcher, Marija Pantelic, PhD, a public health lecturer at Brighton and Sussex Medical School, England.
“After years of working on HIV-related stigma, I was shocked to see how many people were turning a blind eye to and dismissing the difficulties experienced by people with long COVID,” Dr. Pantelic says. “It has also been clear to me from the start that this stigma is detrimental not just for people’s dignity, but also public health.”
Even some doctors argue that the growing attention paid to long COVID is excessive.
“It’s often normal to experience mild fatigue or weaknesses for weeks after being sick and inactive and not eating well. Calling these cases long COVID is the medicalization of modern life,” Marty Makary, MD, a surgeon and public policy researcher at Johns Hopkins University, Baltimore, wrote in a commentary in the Wall Street Journal.
Other doctors strongly disagree, including Alba Azola, MD, codirector of the Johns Hopkins Post-Acute COVID-19 Team and an expert in the stigma surrounding long COVID.
“Putting that spin on things, it’s just hurting people,” she says.
One example is people who cannot return to work.
“A lot of their family members tell me that they’re being lazy,” Dr. Azola says. “That’s part of the public stigma, that these are people just trying to get out of work.”
Some experts say the U.K. study represents a landmark.
“When you have data like this on long COVID stigma, it becomes more difficult to deny its existence or address it,” says Naomi Torres-Mackie, PhD, a clinical psychologist at Lenox Hill Hospital in New York. She also is head of research at the New York–based Mental Health Coalition, a group of experts working to end the stigma surrounding mental health.
She recalls her first patient with long COVID.
“She experienced the discomfort and pain itself, and then she had this crushing feeling that it wasn’t valid, or real. She felt very alone in it,” Dr. Torres-Mackie says.
Another one of her patients is working at her job from home but facing doubt about her condition from her employers.
“Every month, her medical doctor has to produce a letter confirming her medical condition,” Dr. Torres-Mackie says.
Taking part in the British stigma survey were 1,166 people, including 966 residents of the United Kingdom, with the average age of 48. Nearly 85% were female, and more than three-quarters were educated at the university level or higher.
Half of them said they had a clinical diagnosis of long COVID.
More than 60% of them said that at least some of the time, they were cautious about who they talked to about their condition. And fully 34% of those who did disclose their diagnosis said that they regretted having done so.
That’s a difficult experience for those with long COVID, says Leonard Jason, PhD, a professor of psychology at DePaul University in Chicago.
“It’s like they’re traumatized by the initial experience of being sick, and retraumatized by the response of others to them,” he says.
Unexplained illnesses are not well-regarded by the general public, Dr. Jason says.
He gave the example of multiple sclerosis. Before the 1980s, those with MS were considered to have a psychological illness, he says. “Then, in the 1980s, there were biomarkers that said, ‘Here’s the evidence.’ ”
The British study described three types of stigma stemming from the long COVID diagnosis of those questioned:
- Enacted stigma: People were directly treated unfairly because of their condition.
- Internalized stigma: People felt embarrassed by that condition.
- Anticipated stigma: People expected they would be treated poorly because of their diagnosis.
Dr. Azola calls the medical community a major problem when it comes to dealing with long COVID.
“What I see with my patients is medical trauma,” she says. They may have symptoms that send them to the emergency room, and then the tests come back negative. “Instead of tracking the patients’ symptoms, patients get told, ‘Everything looks good, you can go home, this is a panic attack,’ ” she says.
Some people go online to search for treatments, sometimes launching GoFundMe campaigns to raise money for unreliable treatments.
Long COVID patients may have gone through 5 to 10 doctors before they arrive for treatment with the Johns Hopkins Post-Acute COVID-19 Team. The clinic began in April 2020 remotely and in August of that year in person.
Today, the clinic staff spends an hour with a first-time long COVID patient, hearing their stories and helping relieve anxiety, Dr. Azola says.
The phenomenon of long COVID is similar to what patients have had with chronic fatigue syndrome, lupus, or fibromyalgia, where people have symptoms that are hard to explain, says Jennifer Chevinsky, MD, deputy public health officer for Riverside County, Calif.
“Stigma within medicine or health care is nothing new,” she says.
In Chicago, Dr. Jason notes that the federal government’s decision to invest hundreds of millions of dollars in long COVID research “shows the government is helping destigmatize it.”
Dr. Pantelic says she and her colleagues are continuing their research.
“We are interested in understanding the impacts of this stigma, and how to mitigate any adverse outcomes for patients and services,” she says.
A version of this article first appeared on WebMD.com.
Most people with long COVID find they’re facing stigma due to their condition, according to a new report from researchers in the United Kingdom. In short: Relatives and friends may not believe they’re truly sick.
The U.K. team found that more than three-quarters of people studied had experienced stigma often or always.
In fact, 95% of people with long COVID faced at least one type of stigma at least sometimes, according to the study, published in November in the journal PLOS One.
Those conclusions had surprised the study’s lead researcher, Marija Pantelic, PhD, a public health lecturer at Brighton and Sussex Medical School, England.
“After years of working on HIV-related stigma, I was shocked to see how many people were turning a blind eye to and dismissing the difficulties experienced by people with long COVID,” Dr. Pantelic says. “It has also been clear to me from the start that this stigma is detrimental not just for people’s dignity, but also public health.”
Even some doctors argue that the growing attention paid to long COVID is excessive.
“It’s often normal to experience mild fatigue or weaknesses for weeks after being sick and inactive and not eating well. Calling these cases long COVID is the medicalization of modern life,” Marty Makary, MD, a surgeon and public policy researcher at Johns Hopkins University, Baltimore, wrote in a commentary in the Wall Street Journal.
Other doctors strongly disagree, including Alba Azola, MD, codirector of the Johns Hopkins Post-Acute COVID-19 Team and an expert in the stigma surrounding long COVID.
“Putting that spin on things, it’s just hurting people,” she says.
One example is people who cannot return to work.
“A lot of their family members tell me that they’re being lazy,” Dr. Azola says. “That’s part of the public stigma, that these are people just trying to get out of work.”
Some experts say the U.K. study represents a landmark.
“When you have data like this on long COVID stigma, it becomes more difficult to deny its existence or address it,” says Naomi Torres-Mackie, PhD, a clinical psychologist at Lenox Hill Hospital in New York. She also is head of research at the New York–based Mental Health Coalition, a group of experts working to end the stigma surrounding mental health.
She recalls her first patient with long COVID.
“She experienced the discomfort and pain itself, and then she had this crushing feeling that it wasn’t valid, or real. She felt very alone in it,” Dr. Torres-Mackie says.
Another one of her patients is working at her job from home but facing doubt about her condition from her employers.
“Every month, her medical doctor has to produce a letter confirming her medical condition,” Dr. Torres-Mackie says.
Taking part in the British stigma survey were 1,166 people, including 966 residents of the United Kingdom, with the average age of 48. Nearly 85% were female, and more than three-quarters were educated at the university level or higher.
Half of them said they had a clinical diagnosis of long COVID.
More than 60% of them said that at least some of the time, they were cautious about who they talked to about their condition. And fully 34% of those who did disclose their diagnosis said that they regretted having done so.
That’s a difficult experience for those with long COVID, says Leonard Jason, PhD, a professor of psychology at DePaul University in Chicago.
“It’s like they’re traumatized by the initial experience of being sick, and retraumatized by the response of others to them,” he says.
Unexplained illnesses are not well-regarded by the general public, Dr. Jason says.
He gave the example of multiple sclerosis. Before the 1980s, those with MS were considered to have a psychological illness, he says. “Then, in the 1980s, there were biomarkers that said, ‘Here’s the evidence.’ ”
The British study described three types of stigma stemming from the long COVID diagnosis of those questioned:
- Enacted stigma: People were directly treated unfairly because of their condition.
- Internalized stigma: People felt embarrassed by that condition.
- Anticipated stigma: People expected they would be treated poorly because of their diagnosis.
Dr. Azola calls the medical community a major problem when it comes to dealing with long COVID.
“What I see with my patients is medical trauma,” she says. They may have symptoms that send them to the emergency room, and then the tests come back negative. “Instead of tracking the patients’ symptoms, patients get told, ‘Everything looks good, you can go home, this is a panic attack,’ ” she says.
Some people go online to search for treatments, sometimes launching GoFundMe campaigns to raise money for unreliable treatments.
Long COVID patients may have gone through 5 to 10 doctors before they arrive for treatment with the Johns Hopkins Post-Acute COVID-19 Team. The clinic began in April 2020 remotely and in August of that year in person.
Today, the clinic staff spends an hour with a first-time long COVID patient, hearing their stories and helping relieve anxiety, Dr. Azola says.
The phenomenon of long COVID is similar to what patients have had with chronic fatigue syndrome, lupus, or fibromyalgia, where people have symptoms that are hard to explain, says Jennifer Chevinsky, MD, deputy public health officer for Riverside County, Calif.
“Stigma within medicine or health care is nothing new,” she says.
In Chicago, Dr. Jason notes that the federal government’s decision to invest hundreds of millions of dollars in long COVID research “shows the government is helping destigmatize it.”
Dr. Pantelic says she and her colleagues are continuing their research.
“We are interested in understanding the impacts of this stigma, and how to mitigate any adverse outcomes for patients and services,” she says.
A version of this article first appeared on WebMD.com.
Most people with long COVID find they’re facing stigma due to their condition, according to a new report from researchers in the United Kingdom. In short: Relatives and friends may not believe they’re truly sick.
The U.K. team found that more than three-quarters of people studied had experienced stigma often or always.
In fact, 95% of people with long COVID faced at least one type of stigma at least sometimes, according to the study, published in November in the journal PLOS One.
Those conclusions had surprised the study’s lead researcher, Marija Pantelic, PhD, a public health lecturer at Brighton and Sussex Medical School, England.
“After years of working on HIV-related stigma, I was shocked to see how many people were turning a blind eye to and dismissing the difficulties experienced by people with long COVID,” Dr. Pantelic says. “It has also been clear to me from the start that this stigma is detrimental not just for people’s dignity, but also public health.”
Even some doctors argue that the growing attention paid to long COVID is excessive.
“It’s often normal to experience mild fatigue or weaknesses for weeks after being sick and inactive and not eating well. Calling these cases long COVID is the medicalization of modern life,” Marty Makary, MD, a surgeon and public policy researcher at Johns Hopkins University, Baltimore, wrote in a commentary in the Wall Street Journal.
Other doctors strongly disagree, including Alba Azola, MD, codirector of the Johns Hopkins Post-Acute COVID-19 Team and an expert in the stigma surrounding long COVID.
“Putting that spin on things, it’s just hurting people,” she says.
One example is people who cannot return to work.
“A lot of their family members tell me that they’re being lazy,” Dr. Azola says. “That’s part of the public stigma, that these are people just trying to get out of work.”
Some experts say the U.K. study represents a landmark.
“When you have data like this on long COVID stigma, it becomes more difficult to deny its existence or address it,” says Naomi Torres-Mackie, PhD, a clinical psychologist at Lenox Hill Hospital in New York. She also is head of research at the New York–based Mental Health Coalition, a group of experts working to end the stigma surrounding mental health.
She recalls her first patient with long COVID.
“She experienced the discomfort and pain itself, and then she had this crushing feeling that it wasn’t valid, or real. She felt very alone in it,” Dr. Torres-Mackie says.
Another one of her patients is working at her job from home but facing doubt about her condition from her employers.
“Every month, her medical doctor has to produce a letter confirming her medical condition,” Dr. Torres-Mackie says.
Taking part in the British stigma survey were 1,166 people, including 966 residents of the United Kingdom, with the average age of 48. Nearly 85% were female, and more than three-quarters were educated at the university level or higher.
Half of them said they had a clinical diagnosis of long COVID.
More than 60% of them said that at least some of the time, they were cautious about who they talked to about their condition. And fully 34% of those who did disclose their diagnosis said that they regretted having done so.
That’s a difficult experience for those with long COVID, says Leonard Jason, PhD, a professor of psychology at DePaul University in Chicago.
“It’s like they’re traumatized by the initial experience of being sick, and retraumatized by the response of others to them,” he says.
Unexplained illnesses are not well-regarded by the general public, Dr. Jason says.
He gave the example of multiple sclerosis. Before the 1980s, those with MS were considered to have a psychological illness, he says. “Then, in the 1980s, there were biomarkers that said, ‘Here’s the evidence.’ ”
The British study described three types of stigma stemming from the long COVID diagnosis of those questioned:
- Enacted stigma: People were directly treated unfairly because of their condition.
- Internalized stigma: People felt embarrassed by that condition.
- Anticipated stigma: People expected they would be treated poorly because of their diagnosis.
Dr. Azola calls the medical community a major problem when it comes to dealing with long COVID.
“What I see with my patients is medical trauma,” she says. They may have symptoms that send them to the emergency room, and then the tests come back negative. “Instead of tracking the patients’ symptoms, patients get told, ‘Everything looks good, you can go home, this is a panic attack,’ ” she says.
Some people go online to search for treatments, sometimes launching GoFundMe campaigns to raise money for unreliable treatments.
Long COVID patients may have gone through 5 to 10 doctors before they arrive for treatment with the Johns Hopkins Post-Acute COVID-19 Team. The clinic began in April 2020 remotely and in August of that year in person.
Today, the clinic staff spends an hour with a first-time long COVID patient, hearing their stories and helping relieve anxiety, Dr. Azola says.
The phenomenon of long COVID is similar to what patients have had with chronic fatigue syndrome, lupus, or fibromyalgia, where people have symptoms that are hard to explain, says Jennifer Chevinsky, MD, deputy public health officer for Riverside County, Calif.
“Stigma within medicine or health care is nothing new,” she says.
In Chicago, Dr. Jason notes that the federal government’s decision to invest hundreds of millions of dollars in long COVID research “shows the government is helping destigmatize it.”
Dr. Pantelic says she and her colleagues are continuing their research.
“We are interested in understanding the impacts of this stigma, and how to mitigate any adverse outcomes for patients and services,” she says.
A version of this article first appeared on WebMD.com.
PLOS ONE
At the front lines of long COVID, local clinics prove vital
Big-name hospital chains across the United States are opening dedicated centers to help patients dealing with long COVID. But so are the lower-profile clinics and hospitals run by cities, counties and states – including Harborview Medical Center in Seattle.
They serve areas ranging from Campbell County, Wyo., with 47,000 residents, to New York City, with its 8.4 million people. Many providers working there are searching for innovative ways to approach this lingering illness with its variety of symptoms, from brain fog to shortness of breath to depression and more.
Their efforts often fall below the radar, with still-scant serious media attention to long COVID or the public health employees working to treat ailing patients.
Why are state and local health agencies taking on these duties?
They’re leading the way in part because the federal government has made only limited efforts, said Lisa McCorkell, a cofounder of the Patient-Led Research Collaborative. The international group was founded in spring 2020 by researchers who are also long COVID patients.
“It’s a big reason why long COVID isn’t talked about as much,” Ms. McCorkell said. “It’s definitely a national issue. But it trickles down to state and local health departments, and there’s not enough resources.”
The government clinics may be accessible to people without insurance and often are cheaper than clinics at private hospitals.
Harborview has treated more than 1,000 patients with long COVID, and another 200 patients are awaiting treatment, said Jessica Bender, MD, a codirector of the University of Washington Post-COVID Rehabilitation and Recovery Clinic in Seattle’s First Hill neighborhood.
The group Survivor Corps offers lists by states of clinics. While the publicly run clinics may be less expensive or even free for some patients, methods of payment vary from clinic to clinic. Federally qualified health clinics offer treatment on a sliding scale. For instance, the Riverside University Health System in California has federally qualified centers. And other providers who are not federally qualified also offer care paid for on a sliding scale. They include Campbell County Health, where some residents are eligible for discounts of 25%-100%, said spokesperson Norberto Orellana.
At Harborview, Dr. Bender said the public hospital’s post-COVID clinic initially began with a staff of rehabilitation doctors but expanded in 2021 to include family and internal medicine doctors. And it offers mental health programs with rehabilitation psychologists who instruct on how to deal with doctors or loved ones who don’t believe that long COVID exists.
“I have patients who really have been devastated by the lack of support from coworkers [and] family,” Dr. Bender said.
In Campbell County, Wyo., the pandemic surge did not arrive in earnest until late 2021. Physical therapists at Campbell County’s Health Rehabilitation Services organized a rehabilitation program for residents with long COVID after recognizing the need, said Shannon Sorensen, rehabilitation director at Campbell County Health.
“We had patients coming in showing chest pain, or heart palpitations. There were people trying to get back to work. They were frustrated,” Ms. Sorensen said.
Myalgic encephalomyelitis and chronic fatigue syndrome activists have embraced the fight to recognize and help long COVID patients, noting the similarities between the conditions, and hope to help kickstart more organized research, treatment and benefits for long COVID sufferers and myalgic encephalomyelitis/chronic fatigue syndrome patients alike.
In Ft. Collins, Colo., disability activist Alison Sbrana has long had myalgic encephalomyelitis. She and other members of the local chapter of ME Action have met with state officials for several years and are finally seeing the results of those efforts.
Colorado Gov. Jared Polis has created the full-time position of policy adviser for long COVID and post–viral infection planning.
“This is one way forward of how state governments are (finally) paying attention to infection-triggered chronic illnesses and starting to think ahead on them,” Ms. Sbrana said.
New York City’s Health + Hospitals launched what may be the most expansive long COVID treatment program in the nation in April 2021. Called AfterCare, it provides physical and mental health services as well as community support systems and financial assistance.
A persistent issue for patients is that there isn’t yet a test for long COVID, like there is for COVID-19, said Amanda Johnson, MD, assistant vice president for ambulatory care and population health at New York Health + Hospitals. “It’s in many ways a diagnosis of exclusion. You have to make sure their shortness of breath isn’t caused by something else. The same with anemia,” she said.
California’s Department of Public Health has a detailed website devoted to the topic, including videos of “long haulers” describing their experiences.
Vermont is one of several states studying long COVID, said Mark Levine, MD, the state health commissioner. The state, in collaboration with the University of Vermont, has established a surveillance project to determine how many people have long COVID, as well as how severe it is, how long it lasts, and potential predispositions.
The University of Utah, Salt Lake City, established a comprehensive COVID-19 clinic more than a year ago that also handles long COVID patients, said Jeannette Brown, MD, PhD, an associate professor at the school and director of the COVID-19 clinic.
Jennifer Chevinsky, MD, MPH, already had a deep understanding of long COVID when she landed in Riverside County, Calif., in the summer of 2021. She came from Atlanta, where as part of her job as an epidemic intelligence service officer at the CDC, she heard stories of COVID-19 patients who were not getting better.
Now she is a deputy public health officer for Riverside County, in a region known for its deserts, sizzling summer temperatures and diverse populations. She said her department has helped launch programs such as post–COVID-19 follow-up phone calls and long COVID training programs that reach out to the many Latino residents in this county of 2.4 million people. It also includes Black and Native American residents.
“We’re making sure information is circulated with community and faith-based organizations, and community health workers,” she said.
Ms. McCorkell said there is still much work to do to raise public awareness of the risks of long COVID and how to obtain care for patients. She would like to see a national public health campaign about long COVID, possibly spearheaded by the Centers for Disease Control and Prevention in partnership with local health workers and community-based organizations.
“That,” she said, “could make a big difference.”
A version of this article first appeared on WebMD.com.
Big-name hospital chains across the United States are opening dedicated centers to help patients dealing with long COVID. But so are the lower-profile clinics and hospitals run by cities, counties and states – including Harborview Medical Center in Seattle.
They serve areas ranging from Campbell County, Wyo., with 47,000 residents, to New York City, with its 8.4 million people. Many providers working there are searching for innovative ways to approach this lingering illness with its variety of symptoms, from brain fog to shortness of breath to depression and more.
Their efforts often fall below the radar, with still-scant serious media attention to long COVID or the public health employees working to treat ailing patients.
Why are state and local health agencies taking on these duties?
They’re leading the way in part because the federal government has made only limited efforts, said Lisa McCorkell, a cofounder of the Patient-Led Research Collaborative. The international group was founded in spring 2020 by researchers who are also long COVID patients.
“It’s a big reason why long COVID isn’t talked about as much,” Ms. McCorkell said. “It’s definitely a national issue. But it trickles down to state and local health departments, and there’s not enough resources.”
The government clinics may be accessible to people without insurance and often are cheaper than clinics at private hospitals.
Harborview has treated more than 1,000 patients with long COVID, and another 200 patients are awaiting treatment, said Jessica Bender, MD, a codirector of the University of Washington Post-COVID Rehabilitation and Recovery Clinic in Seattle’s First Hill neighborhood.
The group Survivor Corps offers lists by states of clinics. While the publicly run clinics may be less expensive or even free for some patients, methods of payment vary from clinic to clinic. Federally qualified health clinics offer treatment on a sliding scale. For instance, the Riverside University Health System in California has federally qualified centers. And other providers who are not federally qualified also offer care paid for on a sliding scale. They include Campbell County Health, where some residents are eligible for discounts of 25%-100%, said spokesperson Norberto Orellana.
At Harborview, Dr. Bender said the public hospital’s post-COVID clinic initially began with a staff of rehabilitation doctors but expanded in 2021 to include family and internal medicine doctors. And it offers mental health programs with rehabilitation psychologists who instruct on how to deal with doctors or loved ones who don’t believe that long COVID exists.
“I have patients who really have been devastated by the lack of support from coworkers [and] family,” Dr. Bender said.
In Campbell County, Wyo., the pandemic surge did not arrive in earnest until late 2021. Physical therapists at Campbell County’s Health Rehabilitation Services organized a rehabilitation program for residents with long COVID after recognizing the need, said Shannon Sorensen, rehabilitation director at Campbell County Health.
“We had patients coming in showing chest pain, or heart palpitations. There were people trying to get back to work. They were frustrated,” Ms. Sorensen said.
Myalgic encephalomyelitis and chronic fatigue syndrome activists have embraced the fight to recognize and help long COVID patients, noting the similarities between the conditions, and hope to help kickstart more organized research, treatment and benefits for long COVID sufferers and myalgic encephalomyelitis/chronic fatigue syndrome patients alike.
In Ft. Collins, Colo., disability activist Alison Sbrana has long had myalgic encephalomyelitis. She and other members of the local chapter of ME Action have met with state officials for several years and are finally seeing the results of those efforts.
Colorado Gov. Jared Polis has created the full-time position of policy adviser for long COVID and post–viral infection planning.
“This is one way forward of how state governments are (finally) paying attention to infection-triggered chronic illnesses and starting to think ahead on them,” Ms. Sbrana said.
New York City’s Health + Hospitals launched what may be the most expansive long COVID treatment program in the nation in April 2021. Called AfterCare, it provides physical and mental health services as well as community support systems and financial assistance.
A persistent issue for patients is that there isn’t yet a test for long COVID, like there is for COVID-19, said Amanda Johnson, MD, assistant vice president for ambulatory care and population health at New York Health + Hospitals. “It’s in many ways a diagnosis of exclusion. You have to make sure their shortness of breath isn’t caused by something else. The same with anemia,” she said.
California’s Department of Public Health has a detailed website devoted to the topic, including videos of “long haulers” describing their experiences.
Vermont is one of several states studying long COVID, said Mark Levine, MD, the state health commissioner. The state, in collaboration with the University of Vermont, has established a surveillance project to determine how many people have long COVID, as well as how severe it is, how long it lasts, and potential predispositions.
The University of Utah, Salt Lake City, established a comprehensive COVID-19 clinic more than a year ago that also handles long COVID patients, said Jeannette Brown, MD, PhD, an associate professor at the school and director of the COVID-19 clinic.
Jennifer Chevinsky, MD, MPH, already had a deep understanding of long COVID when she landed in Riverside County, Calif., in the summer of 2021. She came from Atlanta, where as part of her job as an epidemic intelligence service officer at the CDC, she heard stories of COVID-19 patients who were not getting better.
Now she is a deputy public health officer for Riverside County, in a region known for its deserts, sizzling summer temperatures and diverse populations. She said her department has helped launch programs such as post–COVID-19 follow-up phone calls and long COVID training programs that reach out to the many Latino residents in this county of 2.4 million people. It also includes Black and Native American residents.
“We’re making sure information is circulated with community and faith-based organizations, and community health workers,” she said.
Ms. McCorkell said there is still much work to do to raise public awareness of the risks of long COVID and how to obtain care for patients. She would like to see a national public health campaign about long COVID, possibly spearheaded by the Centers for Disease Control and Prevention in partnership with local health workers and community-based organizations.
“That,” she said, “could make a big difference.”
A version of this article first appeared on WebMD.com.
Big-name hospital chains across the United States are opening dedicated centers to help patients dealing with long COVID. But so are the lower-profile clinics and hospitals run by cities, counties and states – including Harborview Medical Center in Seattle.
They serve areas ranging from Campbell County, Wyo., with 47,000 residents, to New York City, with its 8.4 million people. Many providers working there are searching for innovative ways to approach this lingering illness with its variety of symptoms, from brain fog to shortness of breath to depression and more.
Their efforts often fall below the radar, with still-scant serious media attention to long COVID or the public health employees working to treat ailing patients.
Why are state and local health agencies taking on these duties?
They’re leading the way in part because the federal government has made only limited efforts, said Lisa McCorkell, a cofounder of the Patient-Led Research Collaborative. The international group was founded in spring 2020 by researchers who are also long COVID patients.
“It’s a big reason why long COVID isn’t talked about as much,” Ms. McCorkell said. “It’s definitely a national issue. But it trickles down to state and local health departments, and there’s not enough resources.”
The government clinics may be accessible to people without insurance and often are cheaper than clinics at private hospitals.
Harborview has treated more than 1,000 patients with long COVID, and another 200 patients are awaiting treatment, said Jessica Bender, MD, a codirector of the University of Washington Post-COVID Rehabilitation and Recovery Clinic in Seattle’s First Hill neighborhood.
The group Survivor Corps offers lists by states of clinics. While the publicly run clinics may be less expensive or even free for some patients, methods of payment vary from clinic to clinic. Federally qualified health clinics offer treatment on a sliding scale. For instance, the Riverside University Health System in California has federally qualified centers. And other providers who are not federally qualified also offer care paid for on a sliding scale. They include Campbell County Health, where some residents are eligible for discounts of 25%-100%, said spokesperson Norberto Orellana.
At Harborview, Dr. Bender said the public hospital’s post-COVID clinic initially began with a staff of rehabilitation doctors but expanded in 2021 to include family and internal medicine doctors. And it offers mental health programs with rehabilitation psychologists who instruct on how to deal with doctors or loved ones who don’t believe that long COVID exists.
“I have patients who really have been devastated by the lack of support from coworkers [and] family,” Dr. Bender said.
In Campbell County, Wyo., the pandemic surge did not arrive in earnest until late 2021. Physical therapists at Campbell County’s Health Rehabilitation Services organized a rehabilitation program for residents with long COVID after recognizing the need, said Shannon Sorensen, rehabilitation director at Campbell County Health.
“We had patients coming in showing chest pain, or heart palpitations. There were people trying to get back to work. They were frustrated,” Ms. Sorensen said.
Myalgic encephalomyelitis and chronic fatigue syndrome activists have embraced the fight to recognize and help long COVID patients, noting the similarities between the conditions, and hope to help kickstart more organized research, treatment and benefits for long COVID sufferers and myalgic encephalomyelitis/chronic fatigue syndrome patients alike.
In Ft. Collins, Colo., disability activist Alison Sbrana has long had myalgic encephalomyelitis. She and other members of the local chapter of ME Action have met with state officials for several years and are finally seeing the results of those efforts.
Colorado Gov. Jared Polis has created the full-time position of policy adviser for long COVID and post–viral infection planning.
“This is one way forward of how state governments are (finally) paying attention to infection-triggered chronic illnesses and starting to think ahead on them,” Ms. Sbrana said.
New York City’s Health + Hospitals launched what may be the most expansive long COVID treatment program in the nation in April 2021. Called AfterCare, it provides physical and mental health services as well as community support systems and financial assistance.
A persistent issue for patients is that there isn’t yet a test for long COVID, like there is for COVID-19, said Amanda Johnson, MD, assistant vice president for ambulatory care and population health at New York Health + Hospitals. “It’s in many ways a diagnosis of exclusion. You have to make sure their shortness of breath isn’t caused by something else. The same with anemia,” she said.
California’s Department of Public Health has a detailed website devoted to the topic, including videos of “long haulers” describing their experiences.
Vermont is one of several states studying long COVID, said Mark Levine, MD, the state health commissioner. The state, in collaboration with the University of Vermont, has established a surveillance project to determine how many people have long COVID, as well as how severe it is, how long it lasts, and potential predispositions.
The University of Utah, Salt Lake City, established a comprehensive COVID-19 clinic more than a year ago that also handles long COVID patients, said Jeannette Brown, MD, PhD, an associate professor at the school and director of the COVID-19 clinic.
Jennifer Chevinsky, MD, MPH, already had a deep understanding of long COVID when she landed in Riverside County, Calif., in the summer of 2021. She came from Atlanta, where as part of her job as an epidemic intelligence service officer at the CDC, she heard stories of COVID-19 patients who were not getting better.
Now she is a deputy public health officer for Riverside County, in a region known for its deserts, sizzling summer temperatures and diverse populations. She said her department has helped launch programs such as post–COVID-19 follow-up phone calls and long COVID training programs that reach out to the many Latino residents in this county of 2.4 million people. It also includes Black and Native American residents.
“We’re making sure information is circulated with community and faith-based organizations, and community health workers,” she said.
Ms. McCorkell said there is still much work to do to raise public awareness of the risks of long COVID and how to obtain care for patients. She would like to see a national public health campaign about long COVID, possibly spearheaded by the Centers for Disease Control and Prevention in partnership with local health workers and community-based organizations.
“That,” she said, “could make a big difference.”
A version of this article first appeared on WebMD.com.