Author: Sophia Gonzales
Contributors: Nazrin Rustamzade, Jessica Ly, and Sarah Fazio
Throughout the past year, a phenomenon known as “long covid” or Post Acute COVID-19 Syndrome (PACS) has been observed across the globe. PACS describes the disease experienced by patients who were once positive for the coronavirus, but continue to show symptoms beyond the period of initial infection. Some studies reveal that individuals continue to experience COVID-19 related symptoms even 6 months after their initial diagnosis. The typical recovery period for individuals who contract coronavirus is two weeks, but the presence of PACS leaves many physicians concerned about the long-term effects of COVID-19.
The symptoms experienced vary on a case-by-case basis and encompass a wide range of conditions. In one study, the most common symptom was brain fog, along with anxiety, depression, high fatigue, muscle weakness, and sleep difficulties. The study also found that those who suffered from a more severe initial infection (for example, being hospitalized to help treat/manage COVID-19) were more likely to experience mental health issues1. Another study found that the most common symptoms among long-haulers were shortness of breath, loss of smell or taste, and fatigue2. In another ongoing study, researchers found that some individuals even experienced brain hemorrhage3.
Many other issues with the brain have been reported, leading to the hypothesis that the effects on the brain are a result of immune reactions, oxygen deprivation, or seizures that resulted from the initial viral infection. The issues also suggest the breakdown of the blood-brain barrier, which can be considered the brain’s personal immune system5. The blood-brain barrier prevents certain molecules from entering the brain to protect against infection.
Recent studies suggest that the symptoms resemble myalgic encephalomyelitis, known colloquially as chronic fatigue syndrome4. The symptoms were also similar to dysautonomia, a condition in which the nervous system has difficulty regulating changes in posture, exertion, temperature, and blood pressure. Even though the conditions of COVID-19 patients were not exact matches to the aforementioned symptoms, similarities allow an understanding of what patients are experiencing, possible treatment models based on those used for the other conditions, and future areas of study5.
The variety of possible symptoms affect the accuracy of a long-haul COVID diagnosis. The intensity of PACS varies from patient to patient, with some experiencing numerous symptoms, while others only a few. Moreover, conditions may last three weeks to nine months after their initial SARS-CoV-2 infection6. An overarching tendency, however, is that most long-haulers experienced a greatly reduced quality of life.
Initial studies have found that women are more likely to experience PACS. According to a Mayo Clinic report, out of 20,000 patients that had a positive COVID-19 test, 10% ended up suffering from long-haul COVID, and 60 to 80% of these long-haulers were women7. Additionally, women have been found to experience PACS with more intensity, frequently reporting five or more symptoms4. Some theories suggest that this occurs due to genetic differences between women and men related to estrogen levels resulting from the menstrual cycle or the amount of immune genes on X-chromosomes8. A heightened immune response may escalate to autoimmune disorders overtime.
Former COVID-19 positive, asymptomatic individuals are also susceptible to suffering from long-haul COVID, even if they did not experience symptoms initially. There is currently no evidence of a correlation between racial or age demographics and the development of PACS9.
Lack of data on long-haul COVID translates into the absence of a designated treatment plan. Treatment is often limited to ensuring patient access to long-term care and attempting to reduce the burden of individual symptoms10. Consequently, many hospitals have created their own post-COVID treatment centers to help assist those in need. These centers often include multidisciplinary teams of health professionals that collaborate to tackle manifestations of PACS.
At a post-COVID treatment center in Mount Sinai, the team noted that all the center’s patients had low levels of CO2 in their blood. This led to a “breathwork” pilot program as part of their suggested treatment. Breathwork simply refers to controlled breathing exercises that aim to restore normal breathing patterns. During the duration of the exercise, patients gain control of their heart rate, fight-or-flight response, and improve their lymphatic circulation, particularly the body’s immune response and disease resistance. The results of the pilot program are promising, but further studies still need to be conducted to test its effectiveness7.
With little to no treatment options available, many long-haulers have found comfort in long-hauler support groups on social media sites. On these pages, individuals often offer tips to overcome and manage symptoms. They even share lists of healthcare providers who acknowledge the reality of long-haul COVID, given that so many healthcare professionals initially neglected or incorrectly diagnosed their conditions11. Long-haulers are advocating for federal disability status since, for many, the symptoms can become so severe that they can no longer work. Despite the scientific evidence and overwhelming number of long-haulers, patients struggle to access disability benefits due to restrictions that require proof that, for 12 months, their condition has made them unable to work12.
The information presented in this article is based upon early studies on long-haul COVID/Post Acute COVID-19 Syndrome. As a result, the material listed above may change as more research is conducted over the next few years. It is important to recognize that science is a forever-evolving field and facts may change as more information becomes available through research and clinical studies.
Given that the long-term effects of SARS-CoV-2 are unknown, scientists are reliant on what they observe in real-time. It has been concluded that there is no association between the severity of COVID-19 and whether or not long haul symptoms are observed13. Thus it is crucial to understand that COVID-19 has the potential to greatly affect one’s quality of life, regardless of age and current health conditions. Because of the uncertainty surrounding long-haul COVID, emerging coronavirus variants, and a lack of foolproof treatment, it remains imperative to get vaccinated if possible, and if not, wear a mask and maintain social distancing practices.
Chaolin Huang, et al. “6-month consequences of COVID-19 in patients discharged from hospital: a cohort study”
Carolyn Barber “The Problem of ‘Long Haul COVID’”
Jackie Rocheleau “Researchers are Tracking COVID-19 Long-Term Effects on Brain Health”
Alexander Zaitchik “The Forever Disease: How COVID-19 Became a Chronic Condition”
Meghan O’Rourke “Unlocking the Mysteries of COVID”
Theresa Waldrop “Clinics are springing up around the country for what some call a potential second pandemic: Long COVID”
Soo Youn “Far more women seem to be reporting ‘long-haul’ COVID symptoms”
Aria Bendix “Most coronavirus long-haulers are women. That may be because they mount a stronger immune response to the virus.”
Yong Huang, et al. “COVID Symptoms, Symptom Clusters, and Predictors for Becoming a Long-Hauler: Looking for Clarity in the Haze of the Pandemic”
Emma Ladds, et al. “Persistent symptoms after COVID-19: qualitative study of 114 ‘long COVID’ patients and draft quality principles for services”
Ed Yong “Long-Haulers are Redefining COVID-19”
Gabriel Emanuel “When Does COVID-19 Become A Disability? ‘Long-Haulers’ Push for Answers and Benefits’”
Lauren Mascarenhas “Long COVID still puzzles doctors but treatment is possible”