Battling Long COVID: From Mystery to Movement
Updated: Jan 12
Words by Rob Swanda
As you open your eyes in the morning aches pulse through your limbs. You try to piece together what day of the week it is as you brush thinning hair out of your face. Have you taken the pills for the AM yet? Your acute stress begins to rise and panic runs through your veins. Just as quickly as that stress comes on you collapse back into bed, fatigued and tired. People said it was just like the flu. They are wrong.
Claire from Caversham. Carol in Seattle. Julie in Colrain. These are your friends, family, neighbors, and colleagues. Each has a story of perseverance through their suffering after surviving a SARS-CoV-2 infection. But surviving was just the first hurdle in a marathon race with long term effects from their infections. This is what Long COVID can look like.
Between 10 - 30% of COVID-19 diagnoses result in Long COVID. The CDC and research studies classify Long COVID as a collection of related symptoms persisting beyond 28 days from infection of SARS-CoV-2. This debilitating illness leaves a layered impact on those living with it as research, knowledge, and treatments are lacking. For the previous 18 months most media surrounding COVID-19 has been saturated with cases, deaths, and vaccines. As wave after wave of infections stretch hospitals beyond their limits information related to Long COVID is continuously pushed to the back burner.
As of 1 September 2021, more than 195 million people globally are survivors of COVID-19. It can be inferred that up to 58 million people may be living with, or have lived with, Long COVID. These patients require a higher level of ongoing care and significant health system interventions. One’s emotions and mood are usually affected, including heightened anxiety and/or depression. Nearly half of the participants in a research paper published in The Lancet (“Characterizing long COVID in an international cohort: 7 months of symptoms and their impact”) reported speech and language impacts. A third of them reported ongoing symptoms even after 6 months. These personal accounts include convulsions, insomnia, chronic pain, and an inability to work or exercise. This study spanning 56 countries and more than 3700 participants found that over 80% experienced cognitive dysfunction, brain fog, impaired decision-making, or issues with problem solving. While the SARS-CoV-2 virus left their bodies months ago, the destruction of its path has left patients’ lives with no semblance to their prior normality.
As we peel back the layer of physical and emotional changes, the survivors have additionally lost family time, jobs, and much of their livelihoods. Holidays have been spent with less cheer, incomes have been reduced and mortgages have been affected. In the blink of the eye these individuals’ lives have turned into a slow ongoing battle for health.
Unfortunately, there is a lot about COVID-19 that is unknown in the medical and science disciplines. While vaccines and public health measures go a long way in preventing further disease transmission and infection in the community, education revolving around the aftermaths of COVID-19 must also be in place. Long COVID has no diagnostic test. Not every person experiences the same onset of symptoms, and those symptoms are not age-related. 31% of individuals suffering from Long COVID are under 40 years old, and 87% are under 60 years old. While recent studies outline an astonishing 200 symptoms across 10 organ systems, long term side effects from viral infections impacting health and quality of life are not new. Research has confirmed ongoing neurobiological health impacts with other respiratory viruses including SARS and MERS, cases of which were first recorded in 2002 and 2012 respectively.
More needs to be done to understand and best advocate for those suffering with Long COVID. The US Government announced more than $1 billion in funding over four years into Long COVID research. The sooner science can better understand why individuals are suffering, what biological pathways have been compromised, and what treatments are promising, then the sooner Claire, Carol, Julie, and thousands of others can receive long awaited relief.
Thank you to the many survivors and researchers from Body Politic, Long COVID Advocacy and Patient-Led Research Collaborative for your invaluable contributions. These groups represent thousands of COVID-19 survivors, many of whom participated in the research studies cited and helped give their own testimonials that were used in this article.
Brief Overview of Long COVID-19
jamanetwork.com. (2021, 02 19). Sequelae in Adults at 6 Months After COVID-19 Infection.
Retrieved from jamanetwork.com: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2776560
nejm.org. (2021, 08 12). Confronting Our Next National Health Disaster — Long-Haul Covid.
Retrieved from nejm.org: https://www.nejm.org/doi/pdf/10.1056/NEJMp2109285?articleTools=true
thelancet.com. (2021, 07 15). Characterizing long COVID in an international cohort: 7 months of symptoms and their impact.
Retrieved from thelancet.com: https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(21)00299-6/fulltext
rcpjournals.com. (2021, 01 21). Long-term sequelae following previous coronavirus epidemics.
Retrieved from rcpjournals.com: https://www.rcpjournals.org/content/clinmedicine/21/1/e68
Worldometer. (2021, 09 01). COVID-19 CORONAVIRUS PANDEMIC.
Retrieved from Worldometer: https://www.worldometers.info/coronavirus/
Author: Rob Swanda of www.robswanda.com
Title: Battling Long COVID: From Mystery to Movement
Date first published: 01 September 2021