Get the long & short of long COVID

While most people experience mild to moderate COVID-19 symptoms and easily recover within weeks, some of us can’t seem to shake it.  Post-Acute Sequelae of SARS CoV-2 infection, a.k.a “long Covid” has been used to describe the presence of nagging symptoms that can linger weeks or months after acquiring an initial SARS-CoV-2 infection. The public and clinicians alike are still aligning on how to better characterize, diagnose, and ultimately treat this syndrome which goes by several names: long COVID, post-COVID syndrome, long-haul COVID, or chronic COVID.

Long-COVID is a syndrome not a disease and that distinction is important. The Greek word syndrome means “running together” and in medical terms a syndrome means a group of symptoms occurring together which characterize an abnormality or condition. The fact that these symptoms run together, but not all necessarily at once make syndromes trickier to identify and treat than disease. While data suggests that long COVID is more prevalent with patients who had severe disease, people with long COVID can experience a wide range of new, returning, or ongoing health problems even if they didn’t have noticeable symptoms while they were mildly sick. The majority of people with long COVID test negative, which means long COVID represents an uncomfortable lag between microbiological recovery and clinical recovery.

Unfortunately, this new syndrome is more common than we think. Accurate estimates of the number of long COVID patients have varied due to multiple factors: 1) failure of providers to recognize the link of symptoms to COVID-19, 2) limitations to collection and reporting of incidence to a national or global database, 3) most studies are unable to fully characterize patients who’ve had COVID-19 but were not diagnosed properly as well as those who don’t seek or receive medical attention when experiencing symptoms of long COIVD, and 4) groups may vary on accurate reporting of symptoms since patients may vary based on the amount of medical attention and follow-up sought out for their symptoms. In one large retrospective study based on linked electronic health record data from 80 million patients, including over 270,000 COVID-19 survivors, they found that 57% of COVID survivors had one or more long COVID symptoms recorded during the whole 6 month period and 36.55% had between 3 and 6 months. The incidence of symptoms were as follows:

According to Dr. Harold Delasalas MD, medical director for Nomi Health,  “There is growing concern of additional symptoms that may affect up to 50% of COVID survivors for weeks, months, and beyond. They are symptoms that may be new, returning, or ongoing health problems that develop four weeks or more after being infected by the COVID-19 virus. For some, it’s an annoying reminder that keeps them from enjoying their favorite exercise routine to its fullest, but for others it may mean frequent visits to doctors/specialists, more medications, and even hospital stays.”

There is growing concern of additional symptoms that may affect up to 50% of COVID survivors for weeks, months, and beyond."
‍
^{Dr. Harold Delasalas}
_{Medical Director for Nomi Health}

Long COVID comes in more than one flavor too, including "post-acute COVID" where symptoms last longer than 3 weeks but less than 12 and "chronic COVID" where symptoms persist beyond 12 weeks. While ongoing research is helping medical professionals gain a better understanding of the syndrome, there are still a lot of unknowns. For example, why do some people develop long COVID while others don’t? We’re learning every day, but here’s what we know so far:

• Patients across the ‘severity spectrum’ of the initial illness may develop long COVID (It appears there’s a higher frequency in those with severe symptoms).
• There isn’t a significant difference between whether a patient with long COVID had Delta vs Omicron.
• Risk factors for developing severe COVID (such as diabetes, obesity, smoking, and high blood pressure) don’t always lead to long COVID syndrome.
• Some of the symptoms indicate direct damage to key organs/systems affected by the virus such as the heart, brain, lungs, kidneys etc.
• Children can develop long COVID symptoms similar to adults. The incidence is lower for children, and the symptoms usually resolve faster too.
• COVID vaccines can reduce the risk of long COVID syndrome. Even in patients who develop a mild breakthrough infection, some studies show up to 50% reduction in developing long COVID syndrome.

How do I know if I have long COVID? Since there’s no test for it, diagnosing long COVID is a symptoms tracking game (hence the journaling suggested below). The most common symptoms include fatigue, dyspnea, chest pain, and cough. Long COVID sufferers also report headaches, joint pain, dysgeusia (distorted taste), myalgias (muscle aches), and diarrhea. Lastly, some common psychological and cognitive symptoms can crop up too, including poor concentration, insomnia, anxiety, and depression. The chart below offers more insight into symptoms to watch for and how to get an accurate diagnosis.

According to the Centers for Disease Control and Prevention (CDC), people with long COVID have a range of new or ongoing symptoms that can last weeks or months after they are infected with the virus that causes COVID-19 and that can worsen with physical or mental activity.

Examples of common symptoms of long COVID include*:

• Tiredness or fatigue
• Difficulty thinking or concentrating (sometimes called “brain fog”)
• Shortness of breath or difficulty breathing
• Headache
• Dizziness on standing
• Fast-beating or pounding heart (known as heart palpitations)
• Chest pain
• Cough
• Joint or muscle pain
• Depression or anxiety
• Fever
• Loss of taste or smell

NOTE: This list is not exhaustive. Some people also experience damage to multiple organs including the heart, lungs, kidneys, skin, and brain.

Now that you’ve learned more about what long COVID is, let’s discuss what you should do about it if you think you may be suffering.

DON’T assume your symptoms are a common cold.
Symptoms can be mild and therefore easy to ignore. Additionally, a negative test may naturally have you thinking you’re fully recovered. If you suspect long COVID get proactive and call your doctor to discuss what you are experiencing.

DO keep a journal.
Since long COVID presents as multiple symptoms that come and go, take time each day to note specifically what you are feeling. If symptoms change during the day, note that too. If you are treating a symptom, write down what’s working and what’s not working and be prepared to review all of this with your healthcare provider at your appointment.

DON’T be afraid to ask for help.
The more our society becomes collectively aware of long COVID, the more resources we’re pulling together to help those most in need. There seems to be a higher incidence of post COVID syndrome in populations that already face long standing disparities in social determinants of health, therefore it's important for communities to pull together and coordinate resources that transcend potential cultural, educational and language barriers.

DO know your rights.
As of July 2021, “long COVID,” can be considered a disability under the Americans with Disabilities Act (ADA). Don’t feel embarrassed or ashamed to let your employer know you need additional resources or accommodations such as help traveling, flexibility in your schedule for doctors visits and resting, or productivity tools such as a larger monitor to reduce eye stress.

DO demand the right tests.
Long COVID is a diagnosis of exclusion which means a qualified healthcare provider should perform a comprehensive evaluation to determine if the nature of the symptoms are indeed long COVID, or an alternate condition that happens to develop in this sensitive time frame. Often lab work is critical to make the right diagnosis.
Long COVID may not be very dangerous to most people, but it can be downright debilitating for others. As we continue to learn more and work to improve how we identify and recover from long COVID moving forward, it’s important to keep focused on two things we can control: transparent communication between patients and care providers and access to testing and treatment - especially for those that struggle to seek help on their own.

*Source: https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html#footnote10_0ac8mdc

Reference: Taquet M, Dercon Q, Luciano S, et al. Incidence, co-occurrence, and evolution of long-COVID features: A 6-month retrospective cohort study of 273,618 survivors of COVID-19. PLOS. 2021. https://doi.org/10.1371/journal.pmed.1003773