Although there is no firm agreement in the medical world, long COVID develops when COVID-19 patients find that their symptoms persist after the normal period of recovery. These patients may also experience new and puzzling symptoms after they are confirmed COVID negative.
You may have long COVID or be a “long hauler” if you had confirmed or suspected COVID-19, and you have not fully recovered or returned to your previous state of health – for weeks or months after the infection itself has gone. Other terms used are post-COVID-19 syndrome and chronic COVID-19; however, they “risk delegitimizing suffering… and that will make it harder for people to access care,” the authors of a Nature editorial state (1). In fact, among the difficulties long COVID patients face is credibility. Patients may feel dismissed by their health care practitioner if they still have lingering unexplainable symptoms post-recovery. With scant knowledge of COVID-19 and its long-term ramifications, both patients and providers are at a loss.
The varying lengths of time that patients experience lingering symptoms are debated. A King’s College Study states that long COVID is the presence of continued symptoms for over one month (2), while Solve ME/CFS defines this time as being more than three months (3). Entities in the United Kingdom, such as The National Institute for Health & Care Excellence (NICE), have also determined the time period to be more than three months (4). Any of the above estimates is in stark contrast with the fact that a typical coronavirus infection resolves after two weeks.
Long-term effects from COVID-19 fall into several categories, making it difficult to identify when the normal recovery period ends and long COVID begins.
You may see the term “long COVID” as referring to all or some of these effects; however, it has become more synonymous with the mysterious lingering symptoms – ones unrelated to organ damage – experienced by both severely and mildly ill patients alike.
A person experiencing long COVID has persistent symptoms despite a negative coronavirus test after the normal recovery period from COVID-19. Symptoms can come and go, change over time, and affect any system in the body (4).
For many, despite fatigue, brain fog, shortness of breath, and other debilitating symptoms, routine lab work will show zero red flags. This makes the search for answers frustrating and confusing for both doctor and patient.
The CDC includes joint pain and chest pain on their list, as well as other reported symptoms like depression, muscle pain, intermittent fever, and rapid heartbeat (9).
One other common occurrence in people with long COVID is post-exertional malaise (PEM), “where even mild physical exertion can cause a severe symptom flare-up for days,” says Dr. Putrino at the Mount Sinai Hospital in New York (7). The Solve ME/CFS Initiative notes that exertion in PEM also means cognitive or emotional, not just physical symptoms (10). Around 90% of Dr. Putrino’s long COVID patients are living with PEM.
PEM is also a distinctive feature of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH) stated that long COVID symptoms are “strikingly similar” to those of ME/CFS (11), indicating that some cases of long COVID may actually be ME/CFS itself.
The mounting information available on ME/CFS and PEM is coming in handy regarding long COVID patients. PEM has different triggers and outcomes for each person, thus requiring a high level of awareness and personalized strategies. Doctors and researchers with the Stanford ME/CFS Initiative created a comprehensive PEM Avoidance Toolkit with tracking sheets and detailed information on causes, barriers, and strategies to help people manage their conditions on a daily basis.
The fact that ME/CFS can be triggered by an infection like coronavirus is not necessarily a new phenomenon.
Pathogens like the Parvovirus B19, Rubella virus, and Epstein-Barr virus (EBV) have been implicated in the development of autoimmune diseases (13) as well as post-infectious or post-viral disease syndromes linked to Lyme disease, mononucleosis, and the West Nile virus (WNV) (3). Glandular fever, which usually stems from an EBV infection, seems to trigger ME/CFS in some people.
Other conditions that may develop post-COVID are Guillain Barré syndrome, acute disseminated encephalomyelitis (ADEM), systemic lupus erythematosus (SLE), and other autoimmune diseases and inflammatory illnesses (13). One preliminary investigation studying autoreactivity and COVID-19 found a link between severe SARS CoV-2 infection and “the presence of autoantibodies against multiple targets,” indicating that an antiviral immune response in the case of COVID-19 prompts the production of autoreactive antibodies. Many features of this response are “reminiscent of SLE pathogenic autoreactivity” (14). Although there is quite clearly a link, neither the precise etiology nor the prevalence of these coronavirus-related autoimmune diseases is widely known.
A King’s College Study from October 2020 analyzed data from 4,182 users of the COVID Symptom Study app. The article is not yet peer-reviewed, but nonetheless offers significant insight into what sufferers of long COVID experience.
According to researchers, “one in 20 people with COVID-19 are likely to suffer symptoms for 8 weeks or more” (2). They also learned that around 10% of people have lingering symptoms after 3 weeks and 5% are unwell for months post-COVID (6, 15).
A CDC study reported that 35% of symptomatic COVID-19 patients still were not back to their original state of health 2-3 weeks after their positive tests. Additionally, one in five respondents were aged 18-34 and did not have underlying health conditions (16).
Anyone can develop long COVID, no matter the age or if their case of COVID-19 is mild or not, though there are factors that put someone at higher risk.
Risk factors include:
*Another connection between long COVID and autoimmune disease is that women are at greater risk to develop these conditions with women 50% more likely to suffer from long COVID than men,” according to a COVID Symptom Study app analysis by King’s College (18). While the reason is still being explored, experts like Professor Tim Spector (one of the researchers leading the COVID Symptom Study App analysis at King’s College), speculates that it may have something to do with gender differences in immune response (19).
Patient-led research and analyses of patient-reported experiences are increasingly common in the age of coronavirus. Of course, bench science remains essential, but this new strain of coronavirus has brought research to a frenzied level as the world tries to stop its devastation. Therefore, patient-led research can provide clues about early warning signs of long COVID as well as how symptoms vary and fluctuate depending on a variety of factors, including age and underlying condition. Medical professionals and public health officials can use this information to explore early treatment options and ensure people are getting the care they need.
Data collection and aggregation are vitally important to the discovery of treatments for long COVID. The effort to gather information is essential for ongoing research to find out how to treat, mitigate, or even cure long COVID. Since medical research is dealing with a newly emergent disease, very little data exists. All research entities need to compile as much data as possible. In an ideal world, a global consortium of data would benefit scientific discovery not only on COVID-19 but also on long COVID.
If you or a loved one have long COVID, consider getting involved by reporting symptoms and other information about your experience through any one of these sources:
The discussion surrounding treatment for long COVID is just as sensitive as it is for ME/CFS.
One suggested treatment for both conditions is graded exercise therapy (GET). Despite its seemingly gentle approach by incrementally increasing activity over time, it must be appropriately prescribed to the right patient or it can be extremely damaging, according to patient advocacy groups like the ME Action Network and The Solve ME/CFS Initiative.
For certain types of fatigue and persistent COVID-related symptoms, gradual exercise may be appropriate, which is why it is crucial to assess this on an individual basis. However, for patients with PEM, the safest option to reduce potential symptoms flare-ups or “crashes” is pacing. According to The Solve ME/CFS Initiative, this means adopting specific strategies that help you “remain as active as your limited energy allows while taking proactive steps to avoid reaching your personal overexertion point and triggering the PEM response.” It is all about listening to your body and getting to know its boundaries and using that information to make decisions about daily activities. To help with this, ME/CFS experts from Stanford have created a PEM Avoidance Toolkit with tracking sheets and detailed information on causes, barriers, and strategies.
An editorial in The Lancet on long COVID aptly states that “there is much that remains unknown, and the response to long COVID is still in its infancy. What are the diagnoses, definitions, and phenotypes of illness that are grouped under the term long COVID? How long does it last? Who is at risk of serious or prolonged sequelae? What are the underlying causes and mechanisms? How do we prevent or reduce the effects of such sequelae on patient health and wellbeing? Are there any effective treatments to aid patient recovery and the regain of full function? What rehabilitation is needed?” These questions and more are continuing to be explored by medical professionals, researchers, and even long COVID patients themselves (20).
If you or a loved one is experiencing long COVID, Survivor Corps offers a helpful list of Post-COVID Care Centers (PCCC) across the U.S., as well as in Canada and India. These centers focus on multidisciplinary and comprehensive care. In the U.K., there are multidisciplinary clinics opening in various regions throughout England, funded by NHS England. Also offered is an online rehab service called Your COVID Recovery, with resources for managing symptoms as well as an on-demand service providing consultations with medical professionals.
For added support and information, connect with fellow long haulers through these groups:
Long COVID: let patients help define long-lasting COVID symptoms. (October 7, 2020). Nature, 586, 170 (2020). doi: https://doi.org/10.1038/d41586-020-02796-2
New research identifies those most at risk from ‘long COVID’. (October 21, 2020). King’s College, London.
Amitay, O., Komaroff, A. (August 19, 2020). We know too little about Covid-19 ‘long-haulers.’ We need a comprehensive study. The Guardian.
Tatum, M. (November 5, 2020). ‘I could barely function’ – the devastating effects of long COVID. The Pharmaceutical Journal.
Unger Baillie, K. (September 25, 2020). Long-term effects of COVID-19 and support to cope. Medical Xpress.
Komaroff, A. (October 15, 2020). The tragedy of the post-COVID “long haulers. Harvard Health Publishing.
McGrath, S. (September 17, 2020). Understanding long covid: a shortcut to solving ME/CFS?. ME/CFS Research Review.
Kelland, K. (November 9, 2020). This study could explain why some patients suffer ‘long COVID’. World Economic Forum.
Long-Term Effects. (Updated November 13, 2020). Centers for Disease Control and Prevention.
Management and Treatment of ME/CFS. The Solve ME/CFS Initiative.
Geddes, L. (November 19, 2020). Long Covid: overlap emerges with ME – including debate over treatment. The Guardian.
Ehrenfeld, M., Tincani, A., Andreoli, L., Cattalini, M., Greenbaum, A., Kanduc, D., Alijotas-Reig, J., Zinserling, V., Semenova, N., Amital, H., Shoenfeld, Y. (June 11, 2020). Covid-19 and autoimmunity. Autoimmunity Review, 2020 Aug; 19(8): 102597. doi: 10.1016/j.autrev.2020.102597.
Canas, C. (October 14, 2020). The triggering of post-COVID-19 autoimmunity phenomena could be associated with both transient immunosuppression and an inappropriate form of immune reconstitution in susceptible individuals. Medical Hypotheses, 2020 Dec; 145: 110345. doi: 10.1016/j.mehy.2020.110345.
Woodruff, M., Ramonell, R., Lee, F., Sanz, I. (October 28, 2020). Clinically identifiable autoreactivity is common in severe SARS-CoV-2 Infection. doi: https://doi.org/10.1101/2020.10.21.20216192
Kelland, K. (October 27, 2020). What is ‘Long COVID’ and what parts of the body does it affect? World Economic Forum.
Tenforde, M., Kim, S., Lindsell, C., Rose, E., Shapiro, N., Files, D., Gibbs, K., Erickson, H., Steingrub, J., Smithline, H., Gong, M., Aboodi, M., Wilson, J., Khan, A., Qadir, N., Hager, D., Ginde, A., Stubblefield, W., Patel, M., Self, W., Feldstein, L. (July 31, 2020). Symptom Duration and Risk Factors for Delayed Return to Usual Health Among Outpatients with COVID-19 in a Multistate Health Care Systems Network. Morbidity and Mortality Weekly Report, Centers for Disease Control and Prevention, 2020 Jul 31; 69(30): 993–998. doi: 10.15585/mmwr.mm6930e1
Couzin-Frankel, J. (August 7, 2020). The long haul. Science, 369(6504), 614-617. doi: 10.1126/science.369.6504.614
Sudre, C., Murray, B., Varsavsky, T., Graham, M., Penfold, R., Bowyer, R., Pujol, J., Klaser, K., Antonelli, M., Canas, L., Molteni, E., Modat, M., Cardoso, M., May, A., Ganesh, S., Davies, R., Nguyen, L., Drew, D., Astley, C., Joshi, A., Merino, J., Tsereteli, N., Fall, T., Gomez, M., Duncan, E., Menni, C., Williams, F., Franks, P., Chan, A., Wolf, J., Ourselin, S., Spector, T., Steves, C. Attributes and predictors of Long-COVID: analysis of COVID cases and their symptoms collected by the Covid Symptoms Study App
Geddes, L. (October 21, 2020). Women aged 50-60 at greatest risk of ‘long Covid’, experts suggest. The Guardian.
Facing up to long COVID. (December 12, 2020). The Lancet, 396(10266), 1861.
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