Even as more people get vaccinated and the U.S. inches back toward normalcy, long COVID isn’t going away anytime soon. The post-COVID condition, recognized by the National Institutes of Health and the Centers for Disease Control and Prevention, is defined by a wide-range of symptoms of illness weeks or months after an initial coronavirus infection. In the past year, research has grown in this area and patients with long COVID have formed support groups and lobbied on Capitol Hill for answers and funding for more research.
What is long COVID?
Long COVID is a condition that occurs when individuals sickened by COVID-19 don’t recover fully after a few weeks or manage to recover, only to have symptoms reappear weeks or months later. It can affect anyone who has had COVID, even if they had mild or no symptoms.
But what that actually looks like for a person can vary. The CDC lists a wide range of symptoms that include:
- Tiredness or fatigue
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Loss of smell or taste
- Dizziness on standing
- Fast-beating or pounding heart (also known as heart palpitations)
- Chest pain
- Difficulty breathing or shortness of breath
- Joint or muscle pain
- Depression or anxiety
- Symptoms that get worse after physical or mental activities
Photos: America’s Pandemic Toll
Who are the long-haulers?
It’s not yet clear what makes someone develop long COVID, but there’s some emerging research. A study published in March in the journal Nature Medicine looked at self-reported symptoms among 4,182 cases of COVID-19. Nearly 560 people, or 13%, reported symptoms lasting 28 days or more. The presence of persistent symptoms beyond 28 days was significantly associated with increasing age and disproportionately seen among women, except those 70 and older. Having more than five symptoms during the first week of COVID-19 illness was associated with the prolonged condition, and the first-week symptoms “most predictive” of long COVID were fatigue, headache, shortness of breath, hoarse voice and muscle pain.
In March, researchers funded by the NIH published a preprint paper, a paper that hasn’t been peer reviewed, examining more than 1,400 health records from the University of California COVID Research Data Set. It found that 27% of patients reported persistent symptoms after 60 days and women were more likely to become long-haulers. Of those who developed long COVID, 32% initially had asymptomatic infections.
What’s the connection between long COVID and chronic fatigue syndrome?
Providers and top health officials have noted similarities between long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS. The syndrome is defined by a chronic and debilitating post-exertional malaise – worsening fatigue after even minimal activity. Some long-haulers have also been diagnosed with ME/CFS.
John Brooks, chief medical officer for the CDC’s COVID-19 response, has observed the links between the diseases but has cautioned against calling them the same condition, noting there are some differences between the two. Brooks told U.S. News that many ME/CFS patients can’t pin down the initial infection that made them sick, unlike long COVID patients. Additionally, he said, some long COVID patients have pulmonary and cardiac symptoms not typically seen in ME/CFS.
By studying long COVID, NIH and CDC officials say they hope more can be learned about ME/CFS, too.
How many people have long COVID?
That much isn’t yet known. More than 33 million Americans have become infected with COVID-19 since the start of the pandemic.
Recent months have yielded emerging and potentially enlightening research into the long COVID phenomenon. A February study published by researchers from the University of Washington found that approximately 30% of 177 people who had COVID-19 and were followed for as long as nine months later reported “persistent” symptoms. Among 150 outpatients who were never hospitalized for COVID-19, about one-third reported persistent symptoms. Researchers said their findings indicate “the health consequences of COVID-19 extend far beyond acute infection, even among those who experience mild illness.”
Meanwhile, Facebook groups for long-haulers have thousands and thousands of members.
Can the COVID-19 vaccines help with long COVID symptoms?
Some long-haulers have said getting a COVID-19 vaccine has relieved some symptoms, but it’s too soon to tell whether this is an effective treatment. One support group, called Survivors Corps, has documented numerous members who say vaccines have helped their symptoms, prompting Akiko Iwasaki, an immunologist at Yale University, to launch a study examining the impact of vaccines on long COVID. Iwasaki has also written a Twitter thread with her hypotheses on why a vaccine might help long COVID sufferers.
However, some long-haulers have reported feeling worse after getting a vaccine, underscoring a need to study the phenomenon.
What are long COVID clinics? Where do I find them?
Long COVID clinics have cropped up around the country to provide comprehensive care to people with long COVID. Some clinics are part of larger hospital systems and refer patients to a number of specialists, including neurological, behavioral, pulmonary and physical therapy specialists. Survivors Corps keeps a list of available clinics by state. However, some clinics require patients to have positive polymerase chain reaction (PCR) or antibody tests, or a referral from another provider. Some long COVID patients have expressed frustration that such clinics may require patients to have received a test showing previous infection as some say they were unable to access a test at the time.
Where can long COVID patients find support?
In addition to long COVID clinics, there are also support and advocacy groups for long-haulers. These groups provide support to patients with long COVID, advocate for better research and disability services, and are growing in numbers. They include:
What is the NIH doing?
The National Institutes of Health in February launched a $1.15 billion research initiative to study the causes of long COVID and identify treatment options. NIH Director Dr. Francis Collins told members of Congress in late April that awards to research projects are expected in the coming weeks.
What is the CDC doing?
The CDC is finalizing guidance for providers on how to identify and manage long COVID in patients. The guidance was developed with input by a number of experts at the CDC and within the health care industry, with collaboration from the American College of Physicians, the American Academy of Family Medicine, the American Academy of Pediatrics and others. Additionally, organizations including long COVID patients and advocates – such as Survivors Corps, Body Politic and the Long COVID Alliance – had input.
A CDC official told U.S. News that the guidance is expected to include:
- How to identify long COVID
- Considerations for clinical evaluation and recommend tests
- Case management, including post-COVID clinical referral where appropriate
- An emphasis on the importance of patient support groups
The CDC is also working closely with the Centers for Medicare and Medicaid Services to develop medical coding for long COVID, which a CDC official told U.S. News not only allows for billing purposes, but helps legitimize the condition.
What is Congress doing?
Members of Congress held a hearing on long COVID with patients, as well as NIH and CDC officials, in late April, with members spending several hours asking questions and sharing their interest in long COVID.
Rep. Don Beyer, a Virginia Democrat, recently reintroduced a bill with Rep. Jack Bergman, a Michigan Republican, to fund more research tied to long COVID.
Meanwhile, some long COVID advocates have been pushing Congress to pass legislation establishing a health registry of long COVID patients, not unlike the 9/11 health registry, according to POLITICO.
This explainer will be updated as more information becomes available.