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Long COVID - A Significant Public Health Threat
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SaveUsNow.Org.UK is never wrong
84% of Swedes hospitalized for Covid-19 had serious cognitive and sensorimotor symptoms persisting at the two year mark.
84% of hospital COVID patients in Sweden still had symptoms at 2 years
https://www.cidrap.umn.edu/covid-19/84-hospital-covid-patients-sweden-still-had-symptoms-2-years
The vast majority—84.2%—of COVID-19 survivors in a Swedish cohort reported persistent symptoms affecting daily life 2 years after hospital release, according to a follow-up study published late last week in The Lancet Regional Health Europe.
Linkoping University researchers in Sweden interviewed COVID-19 patients about 37 symptoms 2 years after release from the hospital from Mar 1 to May 31, 2020. The group's initial 2021 study found that 185 of 433 hospital patients (42.7%) had lingering symptoms and activity limitations 4 months after discharge.
Of the 181 long-COVID patients still alive at 2 years, 165 agreed to participate in the follow-up study, 63.0% were men, and 26% had been admitted to an intensive care unit (ICU). Of the 47 ICU patients, the median hospital stay was 25 days, and 43 (91%) had received mechanical ventilation for a median of 17 days. Median length of stay among nonseverely ill patients was 4 days.
Fewer patients employed, in classes
During the 2-year study period, 21.2% of the 165 patients were rehospitalized for cardiovascular, trauma/injuries, urogenital and endocrine diseases, infectious diseases such as COVID-19 reinfections, and other conditions. Fully 84.2% said they still had symptoms that had at least moderate effects on their daily life.
At 2 years, 19.4% of patients required referral to a medical clinic for additional follow-up. Cognitive and sensorimotor symptoms and fatigue were the most common lingering symptoms, while there was significant improvement in sensorimotor deficits, affective symptoms, and mental fatigue.
About half of long-COVID patients who were on sick leave at 4 months were still on sick leave at 2 years. The number of patients who were employed or studying was significantly lower at 2 years than before COVID-19.
There was no difference in symptoms between who were or weren't critically ill during initial infection. The number of asymptomatic patients rose from 14 (8%) at 4 months to 41 (25%) at 2 years.
The number of patients who were employed or studying was significantly lower at 2 years than before COVID-19.
The rate of symptoms with at least a moderate impact on daily activities fell significantly by 2 years for limb weakness/fatigability, problems walking at least 1 kilometer (0.6 mile), challenges being physically active, difficulty managing work and/or studies, increased need for sleep, headache, mental fatigue, and anxiety.
Thirty-one patients (18.8%) reported other symptoms not included in the interview, such as heart palpitations, chronic fever, reduced appetite, sweating, and hair loss.
Vaccinated report better health
The degree of shortness of breath improved significantly from 4 months to 2 years, although the proportion of patients with light or moderate shortness of breath was comparable at both assessments (60% and 58%, respectively), and the proportion of severe shortness of breath declined from 32% to 18%.
Self-reported general health improved over the study period, with the number describing their health as good or very good climbing from 35 (22%) to 80 (49%). In a subgroup analysis, the 10 unvaccinated patients said their health had deteriorated over the study period, while the 122 patients who had received at least three vaccine doses patients said their health had improved.
"Our cohort of patients, who were hospitalised with COVID-19 during the first pandemic wave and showed symptoms indicating PCC [post-COVID condition] at 4-months post-discharge, showed improved symptoms at two years post-admission, but also a high prevalence of persistent cognitive, sensorimotor and fatigue symptoms impacting on their everyday life," the researchers wrote. "This implies a need to establish routines for long-term follow-up of patients previously hospitalised due to COVID-19 with PCC."
84% of hospital COVID patients in Sweden still had symptoms at 2 years
https://www.cidrap.umn.edu/covid-19/84-hospital-covid-patients-sweden-still-had-symptoms-2-years
The vast majority—84.2%—of COVID-19 survivors in a Swedish cohort reported persistent symptoms affecting daily life 2 years after hospital release, according to a follow-up study published late last week in The Lancet Regional Health Europe.
Linkoping University researchers in Sweden interviewed COVID-19 patients about 37 symptoms 2 years after release from the hospital from Mar 1 to May 31, 2020. The group's initial 2021 study found that 185 of 433 hospital patients (42.7%) had lingering symptoms and activity limitations 4 months after discharge.
Of the 181 long-COVID patients still alive at 2 years, 165 agreed to participate in the follow-up study, 63.0% were men, and 26% had been admitted to an intensive care unit (ICU). Of the 47 ICU patients, the median hospital stay was 25 days, and 43 (91%) had received mechanical ventilation for a median of 17 days. Median length of stay among nonseverely ill patients was 4 days.
Fewer patients employed, in classes
During the 2-year study period, 21.2% of the 165 patients were rehospitalized for cardiovascular, trauma/injuries, urogenital and endocrine diseases, infectious diseases such as COVID-19 reinfections, and other conditions. Fully 84.2% said they still had symptoms that had at least moderate effects on their daily life.
At 2 years, 19.4% of patients required referral to a medical clinic for additional follow-up. Cognitive and sensorimotor symptoms and fatigue were the most common lingering symptoms, while there was significant improvement in sensorimotor deficits, affective symptoms, and mental fatigue.
About half of long-COVID patients who were on sick leave at 4 months were still on sick leave at 2 years. The number of patients who were employed or studying was significantly lower at 2 years than before COVID-19.
There was no difference in symptoms between who were or weren't critically ill during initial infection. The number of asymptomatic patients rose from 14 (8%) at 4 months to 41 (25%) at 2 years.
The number of patients who were employed or studying was significantly lower at 2 years than before COVID-19.
The rate of symptoms with at least a moderate impact on daily activities fell significantly by 2 years for limb weakness/fatigability, problems walking at least 1 kilometer (0.6 mile), challenges being physically active, difficulty managing work and/or studies, increased need for sleep, headache, mental fatigue, and anxiety.
Thirty-one patients (18.8%) reported other symptoms not included in the interview, such as heart palpitations, chronic fever, reduced appetite, sweating, and hair loss.
Vaccinated report better health
The degree of shortness of breath improved significantly from 4 months to 2 years, although the proportion of patients with light or moderate shortness of breath was comparable at both assessments (60% and 58%, respectively), and the proportion of severe shortness of breath declined from 32% to 18%.
Self-reported general health improved over the study period, with the number describing their health as good or very good climbing from 35 (22%) to 80 (49%). In a subgroup analysis, the 10 unvaccinated patients said their health had deteriorated over the study period, while the 122 patients who had received at least three vaccine doses patients said their health had improved.
"Our cohort of patients, who were hospitalised with COVID-19 during the first pandemic wave and showed symptoms indicating PCC [post-COVID condition] at 4-months post-discharge, showed improved symptoms at two years post-admission, but also a high prevalence of persistent cognitive, sensorimotor and fatigue symptoms impacting on their everyday life," the researchers wrote. "This implies a need to establish routines for long-term follow-up of patients previously hospitalised due to COVID-19 with PCC."
On the good news front, it appears that Omicron is less likely to cause Long Covid.
People Are Far Less Likely to Get Long COVID After Omicron, Study Finds
https://time.com/6261074/long-covid-omicron-less-likely/
Researchers still have a lot to learn about Long COVID—when symptoms linger long after a COVID-19 infection is over—but new data suggest there may be some good news for people infected with the virus more recently.
In a study that will be presented at the European Congress of Clinical Microbiology and Infectious Diseases in April (and which has not yet been published), researchers report that people who tested positive for COVID-19 during Omicron waves were no more likely to report lingering symptoms after recovery than people who had never had COVID-19. By contrast, those who were infected with the original SARS-CoV-2 variant were up to 67% more likely to report lingering symptoms than those who did not have COVID-19.
Dr. Carol Strahm and Dr. Philipp Kohler, both from the division of infectious diseases and hospital epidemiology at Cantonal Hospital St. Gallen in Switzerland, led the study of 1,200 health care workers in the country. The participants, mostly female nurses, agreed to regular PCR testing for COVID-19 during periods when the original virus was circulating, from February 2020 to January 2021, and during the Omicron wave from January to June 2022. In March and September 2021 and in June 2022, all of the participants answered an online questionnaire about any lasting symptoms they might be experiencing, which could include fatigue, loss of smell or taste, and shortness of breath. The aggregate of these symptoms made up a rough measure of Long COVID.
The results were similar when the research team looked at people who tested positive during the Omicron wave after being positive with the original virus; these people did not report any more Long COVID-like symptoms than people who had been infected once with the original virus. “The wild-type [original] virus is by far the strongest risk factor for Long COVID-19,” says Kohler.
Over the 18 months from the first and last assessments, people infected with the original virus showed fewer Long COVID symptoms, but some had symptoms that remained, while those whose first positive test was during the Omicron wave did not, on the whole, report continued symptoms after their infection. When the researchers looked at symptom reports by people’s vaccination status, they saw that booster shots did not seem to make a difference in whether people developed Long COVID or not. “We don’t see that the booster adds much more benefit, at least in terms of Long COVID, in our population,” says Kohler.
The results add to growing data about how the different variants affect short- and long-term health. And the data aren’t completely straightforward. Similar to the current study, a previous study from the U.K. involving health records of 97,000 people found that those who were infected with Omicron variants were about half as likely to report continued symptoms four weeks or more after their infection as people who were infected with the Delta variant. But a Norwegian study involving 57,000 people who tested positive found that people infected with Omicron and Delta strains were equally likely to report continued symptoms of fatigue, cough, heart palpitations, shortness of breath, and anxiety or depression up to four months later.
The differing findings could be related to the populations studied and how they defined symptoms, says Kohler. In general, Omicron causes milder infections in relatively healthy people, and data show that more severe disease is more likely to lead to the lingering symptoms of Long COVID. He notes that the size of his study was relatively small compared to the others, although it had the advantage of repeated questionnaires to track volunteers’ symptoms.
“We have a selected population of health care workers, and a limitation with the small sample size,” he says. “Still, in my opinion, the data show there is clearly less Long COVID—probably not much higher than in the uninfected population—among people whose first infection was with Omicron.”
Figuring out how the different variants may affect lingering symptoms is a key question in Long COVID research. Kohler and Strahm plan to ask the volunteers to answer another questionnaire about their symptoms in April to determine if the differences between infections with original and Omicron strains remain.
People Are Far Less Likely to Get Long COVID After Omicron, Study Finds
https://time.com/6261074/long-covid-omicron-less-likely/
Researchers still have a lot to learn about Long COVID—when symptoms linger long after a COVID-19 infection is over—but new data suggest there may be some good news for people infected with the virus more recently.
In a study that will be presented at the European Congress of Clinical Microbiology and Infectious Diseases in April (and which has not yet been published), researchers report that people who tested positive for COVID-19 during Omicron waves were no more likely to report lingering symptoms after recovery than people who had never had COVID-19. By contrast, those who were infected with the original SARS-CoV-2 variant were up to 67% more likely to report lingering symptoms than those who did not have COVID-19.
Dr. Carol Strahm and Dr. Philipp Kohler, both from the division of infectious diseases and hospital epidemiology at Cantonal Hospital St. Gallen in Switzerland, led the study of 1,200 health care workers in the country. The participants, mostly female nurses, agreed to regular PCR testing for COVID-19 during periods when the original virus was circulating, from February 2020 to January 2021, and during the Omicron wave from January to June 2022. In March and September 2021 and in June 2022, all of the participants answered an online questionnaire about any lasting symptoms they might be experiencing, which could include fatigue, loss of smell or taste, and shortness of breath. The aggregate of these symptoms made up a rough measure of Long COVID.
The results were similar when the research team looked at people who tested positive during the Omicron wave after being positive with the original virus; these people did not report any more Long COVID-like symptoms than people who had been infected once with the original virus. “The wild-type [original] virus is by far the strongest risk factor for Long COVID-19,” says Kohler.
Over the 18 months from the first and last assessments, people infected with the original virus showed fewer Long COVID symptoms, but some had symptoms that remained, while those whose first positive test was during the Omicron wave did not, on the whole, report continued symptoms after their infection. When the researchers looked at symptom reports by people’s vaccination status, they saw that booster shots did not seem to make a difference in whether people developed Long COVID or not. “We don’t see that the booster adds much more benefit, at least in terms of Long COVID, in our population,” says Kohler.
The results add to growing data about how the different variants affect short- and long-term health. And the data aren’t completely straightforward. Similar to the current study, a previous study from the U.K. involving health records of 97,000 people found that those who were infected with Omicron variants were about half as likely to report continued symptoms four weeks or more after their infection as people who were infected with the Delta variant. But a Norwegian study involving 57,000 people who tested positive found that people infected with Omicron and Delta strains were equally likely to report continued symptoms of fatigue, cough, heart palpitations, shortness of breath, and anxiety or depression up to four months later.
The differing findings could be related to the populations studied and how they defined symptoms, says Kohler. In general, Omicron causes milder infections in relatively healthy people, and data show that more severe disease is more likely to lead to the lingering symptoms of Long COVID. He notes that the size of his study was relatively small compared to the others, although it had the advantage of repeated questionnaires to track volunteers’ symptoms.
“We have a selected population of health care workers, and a limitation with the small sample size,” he says. “Still, in my opinion, the data show there is clearly less Long COVID—probably not much higher than in the uninfected population—among people whose first infection was with Omicron.”
Figuring out how the different variants may affect lingering symptoms is a key question in Long COVID research. Kohler and Strahm plan to ask the volunteers to answer another questionnaire about their symptoms in April to determine if the differences between infections with original and Omicron strains remain.
Doctors need more information on how to treat Long Covid. This drives the need for more research.
‘We are struggling’: doctors faced with vacuum of information on long Covid
Three years into the pandemic, unanswered questions about the condition limit physicians’ ability to treat patients
https://www.theguardian.com/world/2023/mar/06/long-covid-unanswered-question-doctors-stigma
‘We are struggling’: doctors faced with vacuum of information on long Covid
Three years into the pandemic, unanswered questions about the condition limit physicians’ ability to treat patients
https://www.theguardian.com/world/2023/mar/06/long-covid-unanswered-question-doctors-stigma
Long Covid is associated with significantly increased risk of death, heart and lung problems, study finds
https://www.cnn.com/2023/03/03/health/long-covid-health-consequences/index.html
As the nation anticipates the end of the Covid-19 public health emergency, new research is showing that some groups are still feeling the long-term impacts of the disease. In the year following infection, individuals who experience long Covid are at high risk for a range of adverse health outcomes, including a doubled risk of death, according to a new study published Friday in JAMA Health Forum.
The study examined insurance claims data for 13,435 adults with long Covid and 26,870 without Covid-19 during a 12-month follow-up period. Accounting for factors present prior to infection, the long Covid group experienced increased mortality, with 2.8% individuals with long Covid dying compared to 1.2% of those without long Covid.
Those with long Covid were also roughly two times more likely to experience cardiovascular events including arrhythmias, stroke, heart failure and coronary artery disease. Pulmonary conditions were also common. The risk of pulmonary embolism more than tripled while the risk of COPD and moderate or severe asthma nearly doubled for those with long Covid.
The study found that risks were greatest among individuals hospitalized within a month of a Covid infection.
“We know from published literature that long Covid can result in fatigue, headache and attention disorder,” said Dr. Andrea DeVries, Staff Vice President for Health Services Research at Elevance Health and the lead author of the study. “While those conditions are concerning, the results from this study point to even more worrisome outcomes that can severely impact quality and length of life for individuals with long Covid.”
The US Centers for Disease Control and Prevention defines long Covid as having new, returning, or ongoing health issues more than four weeks after onset of initial infection. According to research by the CDC, one in five Covid-19 survivors ages 18 to 64 and one in four survivors 65 years or older experience an ongoing health issue that might be attributable to Covid-19 infection.
Long Covid has been associated with more than 200 signs and symptoms and 50 health conditions. Experts say the health consequences can last from months to years.
“We can only measure out as far as the pandemic has been happening, but early evidence suggests that a large portion of people who experienced post-Covid condition are doing so more than two years after their initial infection, which is basically as long as it could be,” said Dr. Mark Czeisler who wrote a related editorial also published in JAMA Health Forum.
Research has shown that Covid reinfection substantially increases an individual’s risk of death, hospitalization, and health consequences from long Covid. For example, the risk of cardiovascular disorders increases from 1.6 with one infection, to 3.0 with two infections and 4.8 with three or more infections.
“It’s demonstrating that it’s not like you have Covid once and then if you don’t get acutely ill or you don’t develop long Covid from that first infection that the coast is clear,” said Czeisler, who was not involved in the study.
Other risk factors for long Covid include older age, being female, tobacco use, higher body mass index, and experiencing more symptoms during the acute Covid-19 illness. Being vaccinated prior to infection has been associated with a decreased risk of long Covid, according to previous research.
The study authors say these findings call for continued efforts to prevent Covid-19 infections and enhanced health monitoring of individuals after an infection.
“The biggest takeaway is that long Covid is a health condition that we need to continue to study and take seriously,” said DeVries.
https://www.cnn.com/2023/03/03/health/long-covid-health-consequences/index.html
As the nation anticipates the end of the Covid-19 public health emergency, new research is showing that some groups are still feeling the long-term impacts of the disease. In the year following infection, individuals who experience long Covid are at high risk for a range of adverse health outcomes, including a doubled risk of death, according to a new study published Friday in JAMA Health Forum.
The study examined insurance claims data for 13,435 adults with long Covid and 26,870 without Covid-19 during a 12-month follow-up period. Accounting for factors present prior to infection, the long Covid group experienced increased mortality, with 2.8% individuals with long Covid dying compared to 1.2% of those without long Covid.
Those with long Covid were also roughly two times more likely to experience cardiovascular events including arrhythmias, stroke, heart failure and coronary artery disease. Pulmonary conditions were also common. The risk of pulmonary embolism more than tripled while the risk of COPD and moderate or severe asthma nearly doubled for those with long Covid.
The study found that risks were greatest among individuals hospitalized within a month of a Covid infection.
“We know from published literature that long Covid can result in fatigue, headache and attention disorder,” said Dr. Andrea DeVries, Staff Vice President for Health Services Research at Elevance Health and the lead author of the study. “While those conditions are concerning, the results from this study point to even more worrisome outcomes that can severely impact quality and length of life for individuals with long Covid.”
The US Centers for Disease Control and Prevention defines long Covid as having new, returning, or ongoing health issues more than four weeks after onset of initial infection. According to research by the CDC, one in five Covid-19 survivors ages 18 to 64 and one in four survivors 65 years or older experience an ongoing health issue that might be attributable to Covid-19 infection.
Long Covid has been associated with more than 200 signs and symptoms and 50 health conditions. Experts say the health consequences can last from months to years.
“We can only measure out as far as the pandemic has been happening, but early evidence suggests that a large portion of people who experienced post-Covid condition are doing so more than two years after their initial infection, which is basically as long as it could be,” said Dr. Mark Czeisler who wrote a related editorial also published in JAMA Health Forum.
Research has shown that Covid reinfection substantially increases an individual’s risk of death, hospitalization, and health consequences from long Covid. For example, the risk of cardiovascular disorders increases from 1.6 with one infection, to 3.0 with two infections and 4.8 with three or more infections.
“It’s demonstrating that it’s not like you have Covid once and then if you don’t get acutely ill or you don’t develop long Covid from that first infection that the coast is clear,” said Czeisler, who was not involved in the study.
Other risk factors for long Covid include older age, being female, tobacco use, higher body mass index, and experiencing more symptoms during the acute Covid-19 illness. Being vaccinated prior to infection has been associated with a decreased risk of long Covid, according to previous research.
The study authors say these findings call for continued efforts to prevent Covid-19 infections and enhanced health monitoring of individuals after an infection.
“The biggest takeaway is that long Covid is a health condition that we need to continue to study and take seriously,” said DeVries.
Long COVID Comes Into the Light
We’re finally starting to see the truth about the vexing condition. It’s not what we thought.
https://slate.com/technology/2023/03/long-covid-symptoms-studies-research-variant.html
We’re finally starting to see the truth about the vexing condition. It’s not what we thought.
https://slate.com/technology/2023/03/long-covid-symptoms-studies-research-variant.html
There should be no surprise that people who are UNVACCINATED and SMOKE have worse health outcomes. These people are the victims of their own poor choices. Many of them are obviously MAGA supporters.
Study links ‘long COVID’ to unhealthy life choices
https://www.washingtontimes.com/news/2023/mar/23/study-links-long-covid-unhealthy-life-choices/
Study links ‘long COVID’ to unhealthy life choices
https://www.washingtontimes.com/news/2023/mar/23/study-links-long-covid-unhealthy-life-choices/
Long COVID not caused by COVID-19 immune inflammatory response, new research finds
https://medicalxpress.com/news/2023-07-covid-covid-immune-inflammatory-response.html
https://medicalxpress.com/news/2023-07-covid-covid-immune-inflammatory-response.html
It's not exactly long COVID, but ...
https://www.science.org/content/art...and-long-covid-illness-starts-gain-acceptance
https://www.science.org/content/art...and-long-covid-illness-starts-gain-acceptance
Rare link between coronavirus vaccines and Long Covid–like illness starts to gain acceptance
Studies probe unusual cases of neurologic complications, blood pressure swings, and other side effects
- 3 JUL 2023
- 4:30 PM
- BYGRETCHEN VOGEL, JENNIFER COUZIN-FRANKEL
Emergency medicine doctor Saleena Subaiya (left), who developed severe postvaccine symptoms, with their partner Lawrence Purpura, an infectious disease doctor.SALEENA SUBAIYA
COVID-19 vaccines have saved millions of lives, and the world is gearing up for a new round of boosters. But like all vaccines, those targeting the coronavirus can cause side effects in some people, including rare cases of abnormal blood clotting and heart inflammation. Another apparent complication, a debilitating suite of symptoms that resembles Long Covid, has been more elusive, its link to vaccination unclear and its diagnostic features ill-defined. But in recent months, what some call Long Vax has gained wider acceptance among doctors and scientists, and some are now working to better understand and treat its symptoms.
“You see one or two patients and you wonder if it’s a coincidence,” says Anne Louise Oaklander, a neurologist and researcher at Harvard Medical School. “But by the time you’ve seen 10, 20,” she continues, trailing off. “Where there’s smoke, there’s fire.”
Cases seem very rare—far less common than Long Covid after infection. Symptoms can include persistent headaches, severe fatigue, and abnormal heart rate and blood pressure. They appear hours, days, or weeks after vaccination and are difficult to study. But researchers and clinicians are increasingly finding some alignment with known medical conditions. One is small fiber neuropathy, a condition Oaklander studies, in which nerve damage can cause tingling or electric shock–like sensations, burning pain, and blood circulation problems. The second is a more nebulous syndrome, with symptoms sometimes triggered by small fiber neuropathy, called postural orthostatic tachycardia syndrome (POTS). It can involve muscle weakness, swings in heart rate and blood pressure, fatigue, and brain fog.
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Patients with postvaccination symptoms may have features of one or both conditions, even if they don’t meet the criteria for a diagnosis. Both are also common in patients with Long Covid, where they’re often attributed to an immune overreaction.
Although more researchers are now taking Long Vax seriously, regulators in the United States and Europe say they have looked for, but have not found, a connection between COVID-19 vaccines and small fiber neuropathy or POTS. “We can’t rule out rare cases,” says Peter Marks, director of the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research, which oversees vaccines. “If a provider has somebody in front of them, they may want to take seriously the concept [of] a vaccine side effect,” he says. But Marks also worries about “the sensational headline” that could mislead the public, and he emphasizes that vaccine benefits far outweigh any risks.
Despite the uncertainties, German Minister of Health Karl Lauterbach acknowledged in March that though rare, Long Covid–like symptoms after vaccination are a real phenomenon. He said his ministry was working to organize funding for studies, although none has been announced so far.
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Researchers studying these complications also worry about undermining trust in COVID-19 vaccines. Harlan Krumholz, a cardiologist at Yale University, says concern that the antivaccine movement would seize on any research findings made him hesitant at first to dive in. But about a year ago he and Yale immunologist Akiko Iwasaki began to welcome postvaccination patients into a new study called LISTEN that also includes Long Covid patients. Among other things, it aims to correlate symptoms with immune cell patterns in blood samples.
“I’m persuaded that there’s something going on” with these side effects, Krumholz says. “It’s my obligation, if I truly am a scientist, to have an open mind and learn if there’s something that can be done.”
SCIENCE FIRST wrote about these health concerns in January 2022, describing efforts by scientists at the National Institutes of Health to study and treat affected individuals. A study including 23 people was posted as a preprint in May 2022 but never published. Following Science’s story, almost 200 people contacted the journal sharing their postvaccination symptoms.
Research has since proceeded slowly. This is “a challenging outcome to monitor,” Tom Shimabukuro of the U.S. Centers for Disease Control and Prevention told a government advisory committee in January. Still, more than two dozen case studies have accumulated describing POTS or small fiber neuropathy following a COVID-19 shot, regardless of the vaccine manufacturer.
Long Vax has become a focus for cardiologist Bernhard Schieffer, shown here treating a patient with a different condition.UNIVERSITY HOSPITAL OF GIESSEN AND MARBURG
In 2021, Sujana Reddy, now an internal medicine resident physician at East Alabama Health, published a case study of postvaccine POTS in a 42-year-old man. She then heard from more than 250 people describing similar health concerns. Reddy began a study documenting POTS cases, not yet published, which now includes 55 people who developed symptoms 1 to 2 weeks after vaccination.
Another team scanned for postvaccine POTS across a specific population. Researchers led by cardiologists Alan Kwan and Susan Cheng at Cedars-Sinai Medical Center analyzed a health database of almost 285,000 people in the Los Angeles area; all had received at least one COVID-19 shot. They found that within 90 days after a shot, the rate of POTS-related symptoms was about 33% higher than in the 3 months before; 2581 people were diagnosed with POTS-related symptoms after vaccination, compared with 1945 beforehand. However, the study found a bigger effect from COVID-19 itself: The rate of POTS symptoms in about 12,000 unvaccinated people after infection was 52% higher than beforehand. Although Kwan cautions against extrapolating these numbers to a wider population, he says the pattern is intriguing. “Our data show a relatively clear signal that there probably is an increase in POTS after vaccination and after infection,” he says.
Others find the study compelling. “Even last year I was a little bit cautious” about the link between POTS and vaccination, says Tae Chung, a neuromuscular physiatrist who runs the POTS clinic at Johns Hopkins University. “I didn’t have quantitative data to back it up, but now I feel like I do.” Still, Chung stresses that this paper and other data also suggest COVID-19 vaccines protect against POTS and other Long Covid symptoms, and he remains a strong advocate for vaccination.
AN IMMUNE OVERREACTION to SARS-CoV-2 spike protein, which COVID-19 vaccines use to induce protective antibodies, is one possible cause of these symptoms. One theory is that after vaccination some people generate another round of antibodies targeting the first. Those antibodies could function somewhat like spike itself: Spike targets a cell surface protein called the angiotensin-converting enzyme 2 (ACE2) receptor, enabling the virus to enter cells. The rogue antibodies might also bind to ACE2, which helps regulate blood pressure and heart rate, says Bernhard Schieffer, a cardiologist at the University of Marburg. If those antibodies disrupt ACE2 signaling, that could cause the racing heart rates and blood pressure swings seen in POTS.
Small fiber neurons also have the ACE2 receptor on their surface, so in theory rogue antibodies could contribute to neuropathy. But Matthew Schelke, a neurologist at Columbia University who has treated small fiber neuropathy in both Long Covid and postvaccine patients, says pinning down a connection won’t be easy. Even when unusual antibodies turn up in someone’s blood, “it’s extremely difficult to know if any of these are pathogenic or if they are just bystanders,” he says. Other immune system components that fuel inflammation may also harm nerves, he notes.
Some people appear susceptible to complications after both infection and vaccination, a double vulnerability that can put them in an agonizing situation—eschewing more vaccine doses, often on the advice of their doctors, but also fearing the hazards of Long Covid. Reddy falls into this category. She caught the virus in early 2020 while caring for an infected patient and developed Long Covid, including POTS. Her symptoms dramatically worsened after her first vaccine dose.
An emergency medicine physician in New York City, Saleena Subaiya, experienced the same phenomenon in reverse. Within 24 hours of the second dose of COVID-19 vaccine in January 2021, they developed severe cognitive impairment, fatigue, and a loss of balance. Subaiya improved somewhat over the next year, but was forced to switch to a part-time research job. Then in December 2021, they were hit by Omicron and relapsed.
Postvaccination illness is “a long, relentless disease,” says Lawrence Purpura, an infectious disease specialist at Columbia University who is also Subaiya’s partner—and who treats both Long Covid patients and those with chronic symptoms after vaccination.
A DIAGNOSIS OF POTS or small fiber neuropathy post-vaccination can guide treatment. In POTS, doctors focus on increasing salt and fluid intake to boost blood volume and maintain blood pressure. Beta blockers, which slow racing hearts, may also help.
Small fiber neuropathy is treated with various medications to manage symptoms, and for severe cases sometimes intravenous immunoglobulin (IVIG), an expensive and hard-to-access antibody mixture that can tamp down immune overreactions. Some case studies report that IVIG helped people with postvaccine small fiber neuropathy, at least temporarily.
A more radical approach is plasma exchange, which is sometimes used for autoimmune disorders. Here the patient’s plasma—the liquid part of the blood containing antibodies and proteins—is separated from the blood cells and discarded. The blood cells are then returned to the patient along with a replacement liquid.
Plasma exchange helped a man who developed small fiber neuropathy following his second dose of a COVID-19 vaccine, Schelke and colleagues reported in October 2022 in Muscle & Nerve. “He responded very well,” with months of improvement, Schelke says, but recently returned with worsening symptoms.
Schieffer, meanwhile, has developed an experimental treatment regime that he says showed promise in an unpublished study of eight Long Covid and eight postvaccine patients. It includes statins, which can blunt inflammation in the circulatory system; and angiotensin II type 1 receptor blockers, which can help block the ACE2 pathway activation that may be dysregulated in patients. Schieffer and colleagues are hoping to start a clinical trial of the therapies with 500 people who have either Long Covid or postvaccine symptoms.
Patient advocates are trying to spur new studies. In the next few months, the nonprofit REACT19 plans to distribute small grants, in the tens of thousands of dollars, to teams studying immunology, biomarkers, and other features of postvaccine illness.
Even modest support matters, Krumholz says, because “it’s incumbent on us to produce preliminary data” to win over funders with deep pockets. His and Iwasaki’s LISTEN project now has about 2000 participants, roughly 1000 with Long Covid and 750 with postvaccination symptoms, he says. (LISTEN also includes healthy controls.) He hopes to begin to release results later this summer.
As countries draft plans for a round of updated vaccines, some scientists theorize, reassuringly, that people whose immune systems accepted a previous shot without incident would be highly unlikely to experience immune dysfunction following a booster. But that doesn’t change the urgent need to help those suffering now, Reddy says. “We need to figure out why it’s happening to this subset of people. Why is it happening to them and not everyone else?”