While most people who get COVID-19 recover fully within a few weeks, many people experience symptoms and other negative health effects that last much longer. Post-COVID conditions, also sometimes referred to as “long COVID” or “long-haul COVID,” refer to new, returning or ongoing health problems that occur four or more weeks after an initial COVID-19 infection.

Post-COVID conditions are an emerging public health concern that the CDC, the World Health Organization and many other scientists and health officials are still in the process of understanding. Initial studies estimate that between 10 percent and 30 percent of people will experience post-COVID symptoms.

A Long and Varied List of Symptoms

As researchers try to learn more about post-COVID conditions – including who gets them and why – one of the main difficulties has been how many different ways people report being affected. People across all age groups and across the health spectrum have reported post-COVID conditions. People with no symptoms or only mild symptoms during their initial infection and people who were hospitalized have reported conditions weeks or months later.

Fatigue and shortness of breath are thought to be the most common post-COVID symptoms. Other symptoms vary widely and include cough, chest or stomach pain, difficulty concentrating, heart palpitations, joint or muscle pain, sleep problems, dizziness and changes in taste or smell. Early results suggest any system of the body can be affected, including the heart, lungs, kidney, skin and brain. Autoimmune conditions, where the body’s immune system attacks healthy cells by mistake and causes inflammation or tissue damage, have also been reported.

“Literally dozens and dozens of symptoms have been described, virtually touching on every single part of the body,” said Dr. Stuart Katz, the lead researcher on the NIH-funded Recover Initiative, which is studying post-COVID symptoms. Adding to the difficulty of understanding, diagnosing and treating post-COVID symptoms is the fact that many of those suffering report that their symptoms come and go.

Diagnosis, Managing Symptoms and Seeking Treatment

Comprehensive multi-year studies of post-COVID conditions are underway. Until doctors have more information, diagnosing and treating post-COVID conditions will continue to be challenging. Part of that complexity is the role hospitalization and other factors may play. Post-intensive care syndrome (PICS) is a known condition that refers to health effects caused by being in an intensive care unit. These health effects include PTSD, weakness and impaired cognitive ability and are similar to several reported post-COVID conditions. Currently, researchers still aren’t sure whether some post-COVID conditions are caused by hospitalization or the long-term effects of COVID-19.

The good news is that many people suffering from post-COVID conditions report that their symptoms improve or resolve over time without treatment. If you’re experiencing post-COVID conditions or suspect an initial COVID-19 infection may be the cause of how you’re feeling, take the following steps:

• Track your symptoms. Write down your symptoms for at least a week, including their frequency and severity.
• See the right doctor. Get your symptoms evaluated by a doctor (e.g., your primary care provider) to rule out other major medical conditions. Based on that evaluation, seek care specific to your symptoms. For example, you might see a pulmonologist for ongoing lung issues and a neurologist for feelings of brain fog.
• Find a post-COVID clinic. If possible, make use of post-COVID care centers, which are now available in 48 states. Click here for details or try searching online for “post-COVID clinic near me.”
• Go to your appointment prepared. Use this CDC post-COVID treatment checklist to know what to expect before, during and after your appointment.

With our understanding of post-COVID conditions still evolving, patients suffering from these conditions need to be prepared to be their own health advocate and trust how they are feeling. “It’s so easy to blame an illness like this on anxiety or depression or PTSD, which just isn’t appropriate: This is a devastating, physical, post-viral, inflammatory and neurologic illness,” says Dr. Lucinda Bateman, a diagnosis and treatment expert. Post-COVID conditions aren’t yet fully understood, but they have been acknowledged enough to qualify as a disability under the Americans with Disabilities Act.

One of the biggest remaining questions is what role COVID-19 vaccines may play in preventing post-COVID conditions or lessening their severity. That answer is still unclear, but you can protect yourself by doing your best to avoid getting sick with COVID-19 in the first place. That includes staying up to date on COVID-19 vaccinations, practicing social distancing and wearing a mask in public indoor spaces.

[Nick Fox]