In It For the Long Haul: Post-COVID Syndrome

Written by: Stephanie Moy
​Edited by: Angelina Cho ‘24

December 31, 2021 is the second anniversary of the discovery of the SARS-CoV-2 virus and the resulting COVID-19 disease that has swept the world with tragic loss and called to action the need for improvement in global public health policies. Vaccinated individuals have a lower risk of contracting the virus, which in turn protects families, communities, and immunocompromised individuals [1]. Even with the development of vaccines, more than 360 million people have contracted COVID-19, and while many have fully recovered, others experienced or continue to experience residual symptoms post-infection in a phenomenon known as Post-COVID Syndrome, or long COVID [2]. These COVID long-haulers, as they are sometimes called, experience new or ongoing symptoms such as shortness of breath, fatigue, brain fog, heart palpitations, fever, lightheadedness, and changes in smell or taste, among others [3]. Long COVID has now been characterized as a disability under the Americans with Disabilities Act (ADA) [3].

Many of the symptoms associated with long COVID are neurological. Aggregated together, dizziness, headache, shortness of breath, difficulty concentrating, and tachycardia (abnormally fast heart rate) combine under the umbrella of neurological symptoms known as dysautonomia, or dysfunction of the autonomic nervous system [4]. Dysautonomia includes many autonomic disorders including Postural Orthostatic Tachycardia Syndrome, Autoimmune Autonomic Ganglionopathy, Neurally Mediated Syncope, and more [5]. Forms of dysautonomia also may come secondary or along with other chronic disorders such as Ehler-Danlos syndrome, Guillain-Barre syndrome, and Parkinson’s disease, to name a few [6]. Despite 70 million people worldwide experiencing dysautonomia, it is not common for medical providers to be well educated on it [7]. However, with the emergence of long COVID, more research in the biomedical field is investigating autonomic dysfunction in these patients. A peer-reviewed study examined twenty-seven patients that had a confirmed case of COVID-19 and experienced autonomic symptoms corresponding with a form of dysautonomia [8]. The study conducted autonomic function tests and diagnosed several cases of dysautonomia among long COVID patients, confirming the connection between the two [8]. New disorders may emerge weeks to months after the contracted case of COVID, or existing forms of neurological disorders may worsen due to the development of long COVID [9]. It is tricky to characterize patients when oftentimes they are unsure of what they are experiencing, or may feel some but not all criteria of dysautonomias.

It’s especially critical to understand that studies into the onset, development, and diagnosis of long COVID, and any secondary disorders, are still in their nascent stages. Good, ethical human subject research undergoes stages of grant proposals, IRB approval, data collection, analysis, and review before publication. This timeline is essential for the output of trustworthy, expert-reviewed sources among tides of misinformation elsewhere in the virtual atmosphere, but also means that research on a less than two-year-old virus is still being developed. For a long-term disorder emerging after this infection, identifying participants and studying their pathologies faces barriers of time and sample size, not to mention access to testing or knowledge of their condition. The first categorization of persistent neurological symptoms in COVID long-haulers was published in March of 2021 using a population of 50 patients between the months of May and November of 2020 [10]. Since this is the earliest timeline for proper publication, relatively few studies on long COVID patients have been released. With such a specific population that may not have been hospitalized and therefore never seen by medical professionals, often these publications come in the form of small cohorts around 20 patients, possibly characterizing a handful of cases of POTS, the most common form of dysautonomia, and maybe one respective case for less common neurological disorders [11]. This leaves the field sparse for knowledge of a chronic condition, and more time is necessary to gather longitudinal data for the outcomes or treatment of these patients. In the meantime, long COVID patients may feel isolated, anxious, or depressed in addition to their other symptoms [8].

Long COVID is often seen in“mild” cases of COVID because their symptoms of headache, difficulty concentrating, and anxiety may be overlooked [10]. Additionally, patients with more severe COVID cases often pass away or are hospitalized for their symptoms. To one community, the long COVID struggle is intimately recognized and heard. Dysautonomia International and Dysautonomia Support Network (DSN) are groups in which long COVID patients are recognized to be valued members within the chronic illness community. Long COVID patients can find resources on lifestyle adjustments and coping mechanisms as well as anecdotes from others with similar experiences on the DSN site [12]. “Cybercoping,” that is, communicative action in online community settings, has been shown to have a positive relationship with both affective and physical coping outcomes. These communities not only exchange information among those with chronic illness or their loved ones, but can markedly improve a member’s psychological and physical wellbeing [13]. As we move through the next year and towards the future, more studies will be conducted and shared about the development and outcomes of COVID long-haulers. In the meantime, communities can be found and shared for positive change.

​References:
[1] Antonelli M, Penfold R, Merino J, Sudre C, Molten E, Berry S, et al. Risk factors and disease profile of post-vaccination SARS-CoV-2 infection in UK users of the COVID Symptom Study app: a prospective, community-based, nested, case-control study. Infectious Diseases [Internet]. 2022 Jan;22(1):43–55. Available from: https://www.sciencedirect.com/science/article/pii/S1473309921004606?via%3Dihub 
[2]  COVID Live - Coronavirus Statistics - Worldometer [Internet]. [cited 2022 Jan 26]. Available from: https://www.worldometers.info/coronavirus/
​[3] CDC. COVID-19 and Your Health [Internet]. Centers for Disease Control and Prevention. 2020 [cited 2022 Jan 26]. Available from: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
[4] Dysautonomia Information Page | National Institute of Neurological Disorders and Stroke [Internet]. [cited 2022 Jan 26]. Available from: https://www.ninds.nih.gov/Disorders/All-Disorders/Dysautonomia-Information-Page
[5] The Anatomy, Physiology, Pathology and Related Treatments of the Autonomic System | Johns Hopkins Radiology [Internet]. [cited 2022 Jan 26]. Available from: https://www.hopkinsmedicine.org/radiology/news-events/dysautonomia.html
[6] Dysautonomia: Symptoms, Causes, Types, & How to Live With [Internet]. Cleveland Clinic. [cited 2022 Jan 26]. Available from: https://my.clevelandclinic.org/health/diseases/6004-dysautonomia
[7] Dysautonomia International [Internet]. [cited 2022 Jan 26]. Available from:  http://www.dysautonomiainternational.org/page.php?ID=34
[8] Shouman K, Vanichkachorn G, Cheshire WP, Suarez MD, Shelly S, Lamotte GJ, et al. Autonomic dysfunction following COVID-19 infection: an early experience. Clin Auton Res [Internet]. 2021 Jun 1 [cited 2022 Jan 26];31(3):385–94. Available from: https://doi.org/10.1007/s10286-021-00803-8
[9] Goodman BP, Khoury JA, Blair JE, Grill MF. COVID-19 Dysautonomia. Frontiers in Neurology [Internet]. 2021 [cited 2022 Jan 26];12. Available from: https://www.frontiersin.org/article/10.3389/fneur.2021.624968
[10] Graham EL, Clark JR, Orban ZS, Lim PH, Szymanski AL, Taylor C, et al. Persistent neurologic symptoms and cognitive dysfunction in non-hospitalized Covid-19 “long haulers.” Ann Clin Transl Neurol. 2021 May;8(5):1073–85.
[11] Blitshteyn S, Whitelaw S. Postural orthostatic tachycardia syndrome (POTS) and other autonomic disorders after COVID-19 infection: a case series of 20 patients. Immunol Res [Internet]. 2021 Apr 1 [cited 2022 Jan 26];69(2):205–11. Available from: https://doi.org/10.1007/s12026-021-09185-5
[12] Dysautonomia Support Network [Internet]. Dysautonomia Support. [cited 2022 Jan 26]. Available from: https://www.dysautonomiasupport.org
[13] Kim J-N, Lee S. Communication and Cybercoping: Coping With Chronic Illness Through Communicative Action in Online Support Networks. Journal of Health Communication [Internet]. 2014 Jul 1 [cited 2022 Jan 26];19(7):775–94. Available from: https://doi.org/10.1080/10810730.2013.864724
[Image] Jobaloju. iStock images, [Internet]. [cited 2022 Jan 26] Available from: https://www.cidrap.umn.edu/sites/default/files/public/styles/detail/public/media/article/covid_fatigue_illustration.jpg?itok=IBsP8P9G