What is Long COVID?

The arrival of the SARS-CoV-2 (severe acute respiratory syndrome coronavirus 2) in 2019 created a worldwide pandemic that infected and led to the death of millions. Unfortunately, we are now learning that the initial infection may have only been the beginning. Many people that tested positive for the SARS-CoV-2 virus are now experiencing continuing or new symptoms lasting months or longer. This new condition, termed Long COVID or Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) is leaving many with lasting and debilitating symptoms. Researchers and physicians are working together to find answers for the millions of Long COVID patients suffering from this condition.

Here at RTHM, our goal is to provide patients with treatment options that will help them achieve the best quality of life and the greatest improvement in their condition.

What Causes Long COVID?

When it comes to the cause of Long COVID (LC), right now it is more theories than clear answers. Is the virus hiding in the body and directly causing damage? Has the chronic presence of the virus, or remnants of the virus, caused the immune system to maintain an active presence that is triggering the symptoms? Did the virus disrupt the immune system, leaving it damaged and creating an autoimmune response where it attacks the body? These are all questions researchers have been asking since the first cases began.

Thanks to Congress passing $1.15 billion in funding over four years, NIH can support research studies to investigate the cause of Long COVID. The NIH launched the RECOVER (Researching COVID to Enhance Recovery) Initiative with the idea of applying a meta-cohort study design to pool participants in combination with real-world data in order to propel multiple research studies forward.

Numerous studies continue to look for the underlying cause of LC and new information is discovered every day. For example, researchers in July 2021 discovered that LC patients have elevated levels of a cytokine called interleukin-6, which suggests a possible state of chronic inflammation. Researchers, with the help of patients and their medical data, such as what we collect at RTHM, will continue to put the pieces together and determine what is behind Long COVID and the symptoms it causes.

What Type of Long COVID Do I Have?

LC is broken down into 3 distinct categories that are determined based on symptoms, but more importantly, on when the symptoms developed.

• Category 1 – This category is for patients that have not been able to recover from their initial COVID infection. Because the SARS-CoV-2 virus causes direct cell and organ damage, often this damage leaves behind lingering symptoms that do not resolve, creating chronic symptoms.
• Category 2- Many COVID patients required ICU hospitalization. This category of LC includes those who are affected by post-ICU syndrome. Many of the common symptoms associated with this syndrome are also the same as many Long COVID symptoms. These include cognitive, emotional, and physical symptoms. In many cases, patients can have this syndrome in addition to Category 3 Long COVID.
• Category 3 – In category 3, patients recovered from their original COVID infection only to develop new symptoms weeks or even months later. They may experience similar symptoms to their initial COVID infection or develop completely new symptoms. Because COVID spares no organ in the body, symptoms can vary immensely and may come and go. With category 3, there is no connection between the original COVID severity and the risk or intensity of symptoms you experience. You may have had a mild, or even asymptomatic, case of COVID and still may develop LC.  Many of the patients in category 3 may be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia (POTS), or other chronic complex diseases often initiated by a viral infection.

Common Symptoms Associated with Long COVID

Every patient is different when it comes to LC and the symptoms you experience can be completely different from someone else. Because COVID affects every system within the body, symptoms are widely varied in both type and severity. The three most common symptoms patients experience include cognitive abnormalities, such as memory loss or brain fog; fatigue and exertional intolerance; and non-restorative sleep.

What Are the Risks of Developing Long COVID?

Who is at risk for developing LC? This is difficult to answer currently, as we still do not know enough about the course of the disease. Researchers at Penn State College of Medicine report that more than half of all COVID-19 survivors will experience Long COVID lasting longer than 6 months. Co-lead investigator Dr. Paddy Sentongo states, “The burden of poor health in COVID-19 survivors is overwhelming.”

Some factors that seem to increase the risk of developing LC include:

• Severe initial COVID requiring hospitalization
• Wide range of initial symptoms in the first week of infection
• Female gender
• Pre-existing medical conditions
• Increased BMI

How Do Physicians Diagnose Long COVID?

Receiving a diagnosis for LC can be difficult. While guidelines are changing, the initial requirement included a history of a positive COVID test. Unfortunately, at the start of the pandemic, testing was not always available, and false negatives were common, meaning that many patients suffering from LC won’t necessarily have evidence of a positive test, even though they had COVID-19. The Centers for Disease Control and Prevention (CDC) now has a set of criteria for suspected COVID-19 in those who were unable to attain a test, making this obstacle a little easier to overcome.

In an initial appointment, the physician performs tests to rule out any underlying medical conditions that could explain your symptoms. These could include new conditions or those that may have been triggered by your COVID infection. After ruling out other potential causes, your physician may provide a tentative diagnosis of LC. In addition, your physician may also perform testing for a variety of Long COVID sub-conditions. These may include ME/CFS, POTS, MCAS, autoimmunity, and small fiber neuropathy.

Treatment Options for Long COVID

Because LC is a multi-system condition, treatment must be individualized for each patient based on their presenting symptoms and potential underlying mechanisms. This will require a multidisciplinary team of specialists that can include neurology, cardiology, pulmonology, and viral specialists. Treatment focuses on addressing and improving symptoms of Long COVID, as well as treating any comorbidities (diseases existing with LC). Unfortunately, there is no effective treatment to eliminate LC at this time.

What is My Expected Outcome?

While it is still too soon to predict the outcome for LC patients, many experience a reduction in symptoms over time or are able to manage them with the appropriate care. At RTHM, our primary goal is to provide comprehensive medical care for our patients. To do that, we plan to use our patient-led data collection protocols to help better understand LC. With a better understanding of LC, we can provide more comprehensive treatment, with the ultimate goal of finding a cure.

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