Maybe you have heard about long COVID…but who gets it and where can I find more information on it?


TL; DR: Female sex and asthma are associated with the development of long COVID. We are still learning more about other factors like age.

Data on long COVID is not systematically collected but there are efforts to do so in the future. For now, the national COVID data set as well as the patient led research efforts are good sources of long COVID data.

🤒Long COVID [or Post-Acute Sequelae of COVID (PASC)] is a group of symptoms that start and continue after someone has been known to have COVID-19. These symptoms go on for more than 28 days after someone has recovered from COVID-19 and can include: shortness of breath, fatigue, fever, increased heart rate, headaches, stomach upset, pain, anxiety, depression, changes in memory and thinking, loss of smell and taste, and dizziness. These symptoms and others can be so severe that they affect a person’s ability to live their daily life and can last up to a year or more after onset.

📝 Since 2020, there are more and more studies being done to try to understand why long COVID occurs and who is most likely to get it. Through collaborations such as the National COVID Cohort Collaborative (NC3), more data is available on long COVID. To date, most studies have relied on data from people who have reported symptoms. In one study of 558 people from the US/UK/Sweden (Nature 2021) who reported on the COVID symptom app, people who self-identified as female and older age (70 or older) were more likely to develop symptoms. There are larger studies that compare results from such smaller studies to help to draw conclusions, but they did not examine age. For example, a recent study (meta-analysis and systematic review) looked at results from over 50 studies and found that sex and asthma were risk factors for developing long COVID (https://bit.ly/3vrcqXI). However, other factors were not necessarily analyzed because they were not present in all studies.

😔 Data on long COVID is also difficult to collect systematically because scientists are still trying to understand which symptoms may be long COVID and not another illness. It is also subject to bias from sampling (for example, many of the studies were done in follow up with hospitalized patients, which does not account for people with milder illness). A good summary of what we know about risk factors is here and includes links to studies looking at age, biological sex, vaccination status, and previous viral infection, for example. In sum, age MAY be a risk factor for long COVID but more data needs to be collected.

😺The good news is that researchers are learning more about symptoms of long COVID and are applying new ways to analyze the data to learn more about long COVID presentation and its effects. And there are also efforts on a larger scale to systematically collect data on long COVID because it could really impact people’s ability to work in the future. But, data on long COVID is not found in one central location. You will find many studies published in different places. One great source for data on COVID-19 comes from the Patient Led Research Collaborative (PLRC), a group of researchers who have experience with long COVID and therefore are able to identify questions and collaborate with other research groups. You can find their papers and information about them here. The group recently received $3 million dollars in funding for additional research activities.

➡️This is important because long COVID may impact people’s ability to live well and their participation in the workforce. Research on long COVID may also help our understanding of other chronic illnesses like Chronic Fatigue Syndrome (CFS). By understanding more about long COVID we can help support people who are living with this chronic condition and increase visibility of the impact of this unseen condition.

Stay Safe. Stay Well.

Those Nerdy Girls

Additional Links:

Attributes and Predictors of Long COVID (Nature 2021)

New ways to understand who is most likely to have long COVID

Patient Led Research Collaborative

Understanding Long COVID

Previous post on Long COVID by DP

Link to Original FB Post