Long COVID: Live Updates on the Latest in Research and Policy
Key takeaways:
Long COVID is a broad term describing symptoms that can last months after initial COVID-19 infection.
Long COVID can affect every body system, although common long-term symptoms include shortness of breath, fatigue, cognitive issues, and sleep disorders.
Long COVID is recognized as a disability under the ADA (American Disabilities Act).
Research on long COVID is a work in progress. The cause, method of diagnosis, and treatments for long COVID are still under investigation.
“Long COVID” is a broad term for the lingering symptoms that people experience several months to even years after their initial COVID-19 infection. The most common symptoms of long COVID include shortness of breath, fatigue, cognitive issues, and sleep disorders. But it can affect almost every organ in the body.
Research suggests that long COVID may affect 1 in 3 adults infected with COVID. It can also affect children. Researchers continue to study the timeline of when acute symptoms end and chronic (long-term) symptoms begin.
There’s currently no widely accepted way to diagnose or define long COVID. There is also no specific treatment. That means that the metaphorical “book of long COVID” is being written in real time, as scientists work to figure out who gets long COVID, why they get it, what causes it, and how it should be treated.
In the meantime, people with long COVID are advocating for and supporting each other in support networks as they await answers. On this page, we will be bringing you the latest in long COVID news. Check back frequently for updates!
Long COVID news
Long COVID linked with unemployment in full-time workers
February 17, 2023
Between 2 and 4 million people are out of work due to the disabling symptoms of long COVID. A new analysis in JAMA Network Open adds to the growing body of literature linking long COVID and unemployment.
The JAMA study looked at 15,000 Americans with a history of COVID. Around 15% of these people had lingering health issues 2 or more months after the acute infection. And of those with post-COVID conditions, almost half reported difficulty with concentration or focus, which are among the many neurologic effects people with long COVID experience.
In people with long COVID, 12% reported unemployment, which is higher than the 9% unemployment in people who didn’t have symptoms. In comparison to people without long COVID, people with long COVID who were unemployed were also much more likely to have been fully employed before having COVID.
People with cognitive issues (problems with concentration and thinking) were also less likely to be working full time if they were employed.
Multiple organs in the body — including the liver, heart, and kidneys — affected 1 year after COVID infection
February 17, 2023
Long COVID is known for its range of symptoms and health conditions that affect multiple organ systems. But, until recently, autopsy studies were the only insight into how COVID affects the body over time.
A new study in the Journal of the Royal Society of Medicine followed around 500 people with lingering symptoms 12 weeks after a COVID infection. They did blood tests and MRI scans to make 49 different measurements of organ function at the start of the study and again after 6 and 12 months.
Most of the people in the study were female participants (73%), with a mean age of 45 years old. Most (87%) were not hospitalized with their original infection. And more than half (60%) had received at least 1 COVID vaccine.
All participants had symptoms of long COVID at the start of the study. The most common symptoms were severe shortness of breath, cognitive issues, and poor quality of life.
In this study, nearly 60% of people had organ damage 12 months after the initial COVID infection. The organs affected included the heart, liver, kidney, and spleen. Interestingly, long COVID symptoms had resolved in nearly 30% of people after 1 year.
Some researchers have suggested that there are different types of long COVID. But the researchers in this study couldn’t confirm this with their measurements.
New studies shed light on how often COVID infection causes long COVID and who’s most at risk
June 1, 2022
Researchers are still hard at work trying to better understand why some people have persistent health issues months and years after COVID-19 infection. Two reports used information from electronic health records (EHR) and insurance claims to better understand how often people get long COVID — and who’s most likely to suffer from it.
The CDC evaluated the EHRs of over 350,000 previously healthy adults who had a diagnosis of COVID-19 between March 2020 and November 2021. The CDC compared them with records from 1.6 million people without an infection. The team searched the records for 26 conditions that commonly occur after COVID-19 infection. Here are the results:
Among adults under the age of 64, 1 in 5 got diagnosed with a health issue after COVID-19 infection, including diabetes, stroke, and kidney disease.
For COVID-19 survivors 65 years old and up, that number increased to 1 in 4.
COVID-19 survivors had twice the risk of developing a blood clot in the lung (pulmonary embolism) compared to those who never had a COVID-19 infection.
Fair Health published a study that looked at private insurance claims of over 78,000 U.S. children and adults diagnosed with post-COVID-19 conditions between October 2021 and January 2022. They looked at details such as age, sex, preexisting conditions, and hospitalizations. Here’s what they found:
Among people with long COVID, 76% had not been hospitalized for COVID-19.
Conditions after COVID-19 infection were more common in women than men (60% versus 40%).
Nearly ¼ of people with long COVID reported respiratory symptoms, and 17% reported fatigue and cognitive issues.
These two studies add to our growing body of evidence that shows long COVID:
Is not rare
Can affect both children and adults
Can happen even with mild COVID-19 infections
Can increase risk for a number of medical conditions
We’ll continue to keep an eye out for more long COVID research and report back here soon.
American College of Cardiology publishes guidance for managing heart conditions after COVID-19
March 30, 2022
COVID-19 infections can cause damage to the blood vessels and the heart. In the 12 months after infection with the virus, there’s increased risk for stroke, heart attack, heart failure, and many other cardiac conditions. Chest pain, palpitations, and shortness of breath are common after COVID-19 infection. And, in some cases, these symptoms can last several months.
So, if you’ve recovered from a recent COVID-19 infection, you may be wondering if you need to get your heart checked. The short answer is — not necessarily, if you feel fine.
The American College of Cardiology (ACC) says that if you had a mild or distant infection (over 3 months ago) — and have no heart or lung symptoms — then you don’t need further testing.
The ACC recently published guidance to help doctors know how to manage heart issues after COVID-19 infections.
We’ll summarize the main points here as they apply to our readers.
1. You probably need heart testing if you have heart symptoms after a COVID-19 infection
People with cardiovascular symptoms after a COVID-19 infection should get a heart workup. Cardiovascular symptoms may include the following and more:
Chest pain
Chest tightness
Palpitations
Dizziness
Blackouts
Basic heart tests include blood tests and an ECG. Depending on the symptoms you experience, you may also need an echocardiogram, a cardiac MRI, or a Holter monitor.
2. Myocarditis is a heart complication of COVID-19 — and rarely of COVID-19 vaccination
Myocarditis is an inflammation of the heart muscle. It’s a complication of many viral infections, including COVID-19. People with myocarditis usually need treatment, which may involve hospitalization, NSAIDs, or corticosteroids — depending on the situation.
Diagnosis and treatment for post-vaccination myocarditis are the same as for myocarditis that the virus causes. Experts still think the benefits of vaccinations for COVID-19 outweigh the rare risk of myocarditis from the mRNA vaccines (Pfizer-BioNTech or Moderna).
3. Long COVID can cause heart symptoms — with or without obvious heart abnormalities
If you have cardiovascular symptoms, and it’s been over 4 weeks since your COVID-19 infection, then you could have long COVID. Some people with long COVID have confirmed cardiovascular disease (CVD). This is called “PASC-CVD” (post-acute sequelae of COVID-19, or PASC with CVD). Other people with long COVID have cardiovascular symptoms (CVS) but no heart abnormalities on testing. These people have what is now called “PASC-CVS.”
4. Wait until all COVID symptoms are gone before restarting exercise
If you have had any symptoms related to a COVID-19 infection (even mild symptoms), you should wait until your symptoms are gone before you resume your exercise routine. Even if you didn’t have symptoms with your COVID-19 infection, the ACC recommends to not exercise for 3 days to reduce your chance of developing symptoms.
5. Athletes should get heart testing before resuming exercise (if they had heart or lung COVID symptoms)
If you’re an athlete recovering from COVID-19 with heart and/or lung symptoms, or if you were hospitalized with suspected involvement of your heart, you should have an ECG, a troponin blood test, an echocardiogram — and possibly a cardiac MRI. All athletes should wait until their symptoms are gone before going back to sports. If you had a diagnosis of myocarditis, you should hold off on exercise for 3 to 6 months.
If you have any questions about your heart health after a COVID-19 infection, be sure to check in with your healthcare team.
Long COVID linked with increased risk of diabetes
March 21, 2022
It’s well known that people with diabetes are at high risk of becoming seriously ill with COVID-19 infection. One large study concluded that people with diabetes had a 54% higher risk of death from COVID-19 compared to those without diabetes. This is likely because people with diabetes usually have other serious medical issues, like heart and kidney disease.
But could a COVID-19 infection increase the risk of diabetes in a previously healthy person?
Yes, according to a study published in The Lancet Diabetes and Endocrinology. The study looked at over 180,000 adults who were positive for COVID-19 between March 2020 and September 2021. The study compared this group to people who did not have the virus.
People with COVID-19 were 40% more likely to develop diabetes in the 12 months after infection than those who hadn’t been infected, even when they had no risk factors for diabetes. Most people in the study developed Type 2 diabetes.
The chance of developing diabetes was higher in people who were hospitalized with severe COVID-19 infections. But people with milder illness who weren’t hospitalized also developed diabetes.
There are several theories of how COVID-19 can trigger diabetes. These include:
Direct viral damage to the cells of the pancreas
Blood vessel damage from the virus, which damages pancreas cells
Underlying diabetes that had been silent until the virus triggered it
People who’ve had COVID-19 should take extra care to keep regular health checkups so they get screening for diabetes, especially in the first year after infection. You can read more about COVID-19 and diabetes here.
Long-term effects of COVID include heart and vascular problems — even after a ‘mild’ case
March 1, 2022
It’s well known that a COVID-19 infection can cause damage to the heart muscle, blood clots, and abnormal heart rhythms. But can COVID-19 affect the heart in the long run?
According to a Department of Veterans Affairs (VA) study, the answer is yes, absolutely — even in mild cases.
After reviewing medical records of over 11 million people, the study found an increased risk of 20 different heart and blood vessel conditions, even 1 year after COVID-19 infection. These conditions included:
Stroke
Heart arrhythmias
Heart inflammation (myocarditis)
Pulmonary embolism
COVID-19 increased the risk of stroke by 52%, heart attack by 63%, and heart failure by 72%.
The study collected data from earlier in the pandemic, so 99.7% of the studied population hadn’t been vaccinated yet. In addition, since the study evaluated VA patients, most of the patients were white men. More research is needed to look at post COVID-19 cardiovascular conditions in people who are vaccinated — and in other demographics.
The best way to prevent long-term cardiovascular effects of COVID-19 — and long COVID — is to get vaccinated. And of course, try to avoid getting infected in the first place by following current public health recommendations and guidelines.
NIH study: Coronavirus can linger in the brain and body for months
January 4, 2022
According to a new study by the U.S. National Institutes of Health, COVID-19 can stay in the brain and body for months after infection. The study appeared as a pre-print online and is under review for publication in Nature.
The study looked at the tissues of 44 deceased COVID-19 patients. The virus was found in many of their bodies’ organs, including the brain, heart, lungs, kidneys, liver, gut, and eyes as late as 230 days after infection.
Scientists think COVID-19 enters the airways and lungs, gets into the bloodstream, and then travels widely to infect the rest of the body. This can happen even in patients with mild or no symptoms — like some of the people included in the study.
COVID-19 was found in the majority of brains examined in the study. This may help explain the brain MRI abnormalities and neurological issues seen in people with COVID-19.
The fact that the virus can linger in various tissues of the body may be why people with long COVID have symptoms involving several organ systems. These findings may help scientists better understand and develop treatments for long COVID.
Kidney disease risk increased in COVID-19 survivors
December 1, 2021
There’s now evidence that the virus that causes COVID-19 can also damage the kidneys, which filter your blood and remove excess water and waste.
A recent study looked at kidney function in almost 90,000 U.S. veterans who survived a COVID-19 infection between March 2020 and March 2021. The study followed them for 6 months after COVID-19 infection, and then compared them to a group that wasn’t infected with the virus.
Even in mild cases of COVID-19 (that didn’t require hospitalization), there was a 30% higher risk of having acute kidney injury (also known as kidney failure). They were also twice as likely to get severe kidney failure (end-stage kidney disease) and require dialysis and/or a transplant.
People in the study who were hospitalized for COVID-19 had an even higher risk of kidney disease. In people who needed to stay in an intensive care unit for their COVID-19 infection, the risk of acute kidney failure was eight times higher than people who did not have COVID-19. The risk of end-stage kidney disease was 13 times higher.
A simple blood test can check your kidney function. Healthcare providers often include it in routine blood work. If you’ve had a recent COVID-19 infection, touch base with your healthcare team and ask them to check your kidney health, especially if you were hospitalized.
New study shows long COVID still possible in vaccinated people
November 8, 2021
Vaccination is one of the best ways to prevent severe illness from COVID-19. But, according to a new U.K. study, vaccination may not prevent long COVID symptoms in people with breakthrough infections.
In this study, which has not yet been peer-reviewed, scientists searched the medical records of over 10,000 people who had COVID-19 infections at least 2 weeks after the first dose of COVID-19 vaccination. They compared these people with those who were not vaccinated for COVID.
The researchers found that, in the 6 months after infection, people with at least 1 dose of the COVID-19 vaccine had a lower risk of:
Death
Admission to the intensive care unit
Need for a ventilator
Low oxygen levels
Blood clots
Seizures
Psychotic disorder
Hair loss
But, vaccination with at least one dose of the COVID-19 vaccine did not prevent other “long COVID features,” such as:
Shortness of breath
Chest/throat pain
Cognitive symptoms, such as increased forgetfulness
Fatigue
Headache
Muscle aches
Joint pain
The vaccine also didn’t prevent health conditions after COVID-19 such as:
Kidney disease
Liver disease
Type 2 diabetes
Heart arrhythmias
Mental health problems
Sleep disorders
In this study, 2 doses of the vaccination provided much stronger protection against COVID-19 compared to 1 dose, and the vaccine gave younger people more protection compared to those over 60.
So, does vaccination help at all for preventing long COVID?
Most likely, but more data is needed. One of the largest studies so far showed that 2 doses of the COVID-19 vaccine reduced the risk of having long COVID (defined as symptoms for at least 28 days after infection) by about half. More studies are being done to figure out how many vaccinated people still get long COVID.
So, your best bet is to get vaccinated against COVID-19. But don’t forget the other ways to keep healthy: wearing masks, handwashing, avoiding crowded public spaces, and taking care of your overall health.
The National Institutes of Health grants $470 million for study of long COVID
September 15, 2021
The National Institutes of Health (NIH) announced that nearly $470 million will be used to study the long-term symptoms of COVID-19. The money will go to the RECOVER initiative, which will study 40,000 people to better understand long COVID. Many types of long COVID patients, including children, pregnant women, and a wide range of racial and ethnic groups, will be included in the study.
100 researchers from over 30 institutions who have received these funds are working to figure out why some people infected with COVID-19 develop symptoms that last over 4 weeks. By understanding what causes long COVID, treatments can be developed for those suffering with the illness. If you would like updates on this study or would like to participate, you can find details at the Recover website.
President Biden announces that people with long-term effects of COVID-19 may be covered by the American Disabilities Act (ADA)
July 26, 2021
President Biden announced during a recent White House ceremony that adults and children with long COVID could qualify for accommodations under the Americans with Disabilities Act (ADA). The ADA, enacted 31 years ago, prohibits discrimination against people with physical or mental disabilities. According to the U.S. Department of Health and Human Services, a person with long COVID can qualify for ADA protection if the illness limits one or more of a person’s “major life activities.”
A “major life activity” can include taking care of oneself, seeing, hearing, concentrating, and working. Since long COVID can affect multiple organ systems, including the lungs, heart, and neurological system, many people with this condition may become physically and/or mentally disabled.
For people whose long COVID qualifies as a disability, accommodations may be made in school or the workplace, including:
Shortened work schedules
Providing extra time for adults and children to complete tests
Allowing a person to work from home
The HHS specifies that long COVID is not always considered a disability. They advise that “individualized assessment is necessary” to determine if a person with long COVID qualifies for accommodations under the ADA. If you have long-term symptoms and think you may qualify for accommodations under the ADA, please discuss this with your healthcare provider.
Long COVID can cause over 200 symptoms in 10 different organ systems
July 15, 2021
In the beginning stages of the pandemic, COVID-19 was thought to be primarily a lung disease. Now we have evidence that the virus can affect the entire body. A study published in Lancet’s EClinicalMedicine journal found that long COVID patients reported over 200 symptoms involving over 10 organ systems in the 7 months following initial infection.
The study included over 3,700 people from 56 countries. Most commonly reported symptoms were fatigue, worsening symptoms after physical or mental exertion, and “brain fog.”
Other commonly reported symptoms were:
Headaches
Memory issues
Insomnia
Muscle aches
Palpitations
Shortness of breath
The data for this study was collected using online surveys posted in long COVID patient support groups, such as Body Politic and Long Haul COVID Fighters. It is one of the first studies to show that long COVID is leading to a concerning amount of disability: Nearly 70% of those surveyed reported that their symptoms affected their ability to work at their full-time job. This has created more of a sense of urgency for governments to fund research to study long COVID.
New study shows loss of brain tissue in taste and smell areas in post-COVID patients
June 21, 2021
It is now well known that COVID-19 can cause brain damage. The SARS-CoV-2 virus can invade the nervous system and can cause blood clots, which can damage the brain. A new study from the University of Oxford showed that people with normal brains before COVID infection developed brain damage after they were infected with the virus. The majority of these people had mild to moderate symptoms or no symptoms at all with their COVID infection.
As part of the UK Biobank study, volunteers had brain MRI scans before the pandemic. Nearly 400 people in the study who had a confirmed COVID infection between March 2020 and April 2021 came back for a follow-up MRI, along with about 400 people who never had COVID. The MRIs in people who had COVID infection showed a loss of brain tissue in the areas of the brain that regulate smell and taste. These changes were not seen in the people who did not have a COVID infection. This study provides some clues as to why people lose their sense of taste and smell with COVID. More studies are needed to figure out why this unusual symptom happens and how long it can last.
1 in 3 survivors of COVID-19 have a neurological or psychiatric diagnosis in the 6 months following infection
April 6, 2021
Survivors of COVID are at increased risk of psychiatric illnesses compared to people recovering from other viral illnesses like the flu. A new study, looking at real-world health data in over 230,000 patients, found that 34% of patients diagnosed with COVID-19 had a neurological or psychiatric diagnosis in the 6 months following infection. For 1 in 8 of these patients, it was the first time they had ever been diagnosed with a similar illness.
Mental health conditions reported in the participants of this study included:
Anxiety disorders
Mood disorders
Substance abuse disorders
Insomnia
Serious neurological disorders included:
Stroke
Bleeding in the brain
Symptoms found in Parkinson’s disease (tremors)
Nerve disorders
The risk of developing a neurological or psychiatric diagnosis was higher if the person had a more severe COVID-19 infection. More research is needed to find out how COVID-19 affects the brain and nervous system, and how the neurological issues of long COVID differ compared to commonly known viruses.
The bottom line
Millions of people around the world are suffering from persistent symptoms for months or even years following COVID-19 infection. There is a lot about this syndrome — referred to as long COVID — that we do not know yet. This includes why people get it, what symptoms they experience, what tests should be used to diagnose it, and how it should be treated. Doctors and scientists are working around the clock to find answers to these questions, as well as how long COVID may be similar to other illnesses we know more about.
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