For many patients, unrelenting fatigue, pain, brain fog, anxiety, and other symptoms linger long after recovery from infection with COVID-19. Regarded as the newest autoimmune-related disorder to emerge from the COVID-19 pandemic, this condition is being referred to as long-haul COVID or Post-Acute Sequelae of COVID (PASC).1
In September 2021, a COVID Summit was held to address how the medical community can provide support to patients with long-haul COVID-19 in the absence of treatment. The Summit, which brought together thought leaders, clinicians, patients with long-haul COVID-19, and health and wellness coaches, was focused on exploring the link between COVID-19 and autoimmunity to provide support to the affected population and to understand the health implications of COVID-19 for those who remain at greatest risk.
A Long-Term Health Crisis
Experts expect that more than 15 million people will experience “long COVID,” a condition that is poised to be the next national health disaster, wrote the authors of a perspective paper published in The New England Journal of Medicine.2 Understanding this public health threat, the National Institutes of Health (NIH) is investing $470 million in researching the long-term effects of COVID-19.3 Research and academic institutions, like Johns Hopkins University, have also initiated long-COVID studies to understand the scale and severity of individuals experiencing long-term symptoms of COVID-19.4
Researchers noted that the risk that an individual who develops COVID-19 will carry symptoms long after recovery from the infection is significant. In a recent report by the US Centers for Disease Control and Prevention (CDC) with 366 patients who had recovered from COVID-19, one-thirds still had symptoms 2 months later.5
These data point to the fact that the COVID-19 pandemic will have serious long-term health implications for many people. The implications are economic as well. Patients with long COVID often struggle to return to their personal and professional obligations and resume their lives “as normal,” as before the virus infection.
Research from Stanford and the NIH shows that the environment plays a greater role in shaping the immune system compared with genetic makeup. A thriving immune system is constantly adapting to elements around it, but certain exposures or the culmination of exposures over time can trigger a breakdown that can lead to disease.6
This is where COVID-19 comes in. Viruses are a known trigger for autoimmunity, alongside other external environmental factors like diet, toxins, sleep and stress.7 An approach to healing and recovery must be rooted in the knowledge and growing acceptance that nutrition and lifestyle have concrete effects on disease variability and that pinpointing specific correlations for each individual is a key step in improving their quality of life.
Meaningful Ways Health Care Professionals Can Work With Patients
The goal of the speakers at the Summit was to educate health care professionals about how they can best listen to, care for, and treat patients with long-haul COVID.
As a rheumatologist and long-time believer of evidence-based medicine, I am confounded by what I know I can’t see when patients come to me for help with mysterious symptoms that come and go. This is also the case with patients with long-haul COVID, whose “invisible” autoimmunity-related symptoms include debilitating fatigue, brain fog, joint and muscle pain, headache, anxiety, and many more.
Many important messages were shared by speakers at the Summit.
Considering Existing Health Vulnerabilities
In a talk on what clinicians and other health care professionals can learn from the pandemic, Tracy Harrison, founder of The School of Applied Functional Medicine, suggested that looking more closely at patients’ health vulnerabilities is an important step we can take to prepare ourselves for the next pandemic. Such vulnerabilities might include obesity and overweight, type 2 diabetes, lung diseases, cardiovascular disease, and hypertension.
“Let’s look in the mirror of [COVID-19] and rise collectively as a human family to seize this learning opportunity so we can address our vulnerabilities and strengthen our resilience to fight COVID-19 and better prepare for the next big health threat,” she noted.
Attention to Mental Health
Austin Perlmutter, MD, a board-certified internal medicine physician, pointed to data suggesting that depression is on the rise in the wake of COVID-19.8 This can happen as a direct result of infection with SARS-CoV-2, as well as the psychosocial ramifications of the pandemic, such as isolation, ongoing stress, less healthy eating habits, and a more sedentary lifestyle. COVID-19 also triggers an inflammatory cascade in some patients, and the chronic inflammation can also influence mood and lead to depression.
“An imbalanced immune state favoring chronic inflammation [as seen dramatically in COVID-19] may be a driver of some depression and an area for personalized intervention,” Dr Perlmutter said.
Lending an Ear to Patients
The problem of not being believed is all too familiar for many people living with autoimmune disease, and patients with long-haul COVID are no different. One of the key components for better outcomes and recovery after COVID-19 is a clinician who believes their patient, said Cleveland Clinic Rheumatologist and Autoimmune Expert Leonard Calabrese, DO.
With COVID-19, patients worry that they will be misunderstood and judged for having lingering symptoms that are “all in [their] head.” Empathy is not just a sympathetic ear; it requires the capacity to understand and process the feelings of the patient. The good news is that empathy can be learned; telling patients “I hear you. These symptoms are not in your head and they are not your fault.”
Looking Toward a Healthier Future
Long COVID remains an area where there are still more questions than answers. Seeing the commitment of so many researchers, doctors, and advocates who are working to help those affected find relief is both encouraging and inspiring.
As we heard from experts and thought leaders at the Summit and continue to learn every day as new information and insights emerge, the seriousness of long COVID and its implications on the health and livelihoods of individuals cannot be ignored.
Disclosure: Nicole Bundy, MD, MPH, is the chief medical officer at Mymee.
- Winchester N, Calabrese C, Calabrese LH. The intersection of COVID-19 and autoimmunity: What is our current understanding? Pathog Immun. 2021;6(1):31-54. doi:10.20411/pai.v6i1.417
- Phillips S, Williams MA. Confronting our next national health disaster — long-haul Covid. NEJM. 2021;385:577-579. doi:10.1056/NEJMp2109285
- National Institutes of Health. NIH builds large nationwide study population of tens of thousands to support research on long-term effects of COVID-19 [news release]. Published online September 15, 2021. Accessed November 3, 2021. https://www.nih.gov/news-events/news-releases/nih-builds-large-nationwide-study-population-tens-thousands-support-research-long-term-effects-covid-19
- Johns Hopkins University. Study probes the ‘long-haul’ effects of COVID-19. Published online March 22, 2021. Accessed November 3, 2021. https://hub.jhu.edu/2021/03/22/long-covid-long-haulers/
- Yomogida K, Zhu S, Rubino F, Figueroa W, Balanji N, Holman E. Post-acute sequelae of SARS-CoV-2 infection among adults aged ≥18 years. MMWR Morb Mortal Wkly Rep. 2021;70(37):1274-1277. doi:10.15585/mmwr.mm7037a2external icon
- National Institutes of Health. Immune system shaped by environment more than genes. Published online February 2, 2021. Accessed November 3, 2021. https://www.nih.gov/news-events/nih-research-matters/immune-system-shaped-environment-more-genes
- Smatti MK, Cyprian FS, Nasrallah GK, Al Thani AA, Almishal RO, Yassine HM. Viruses and autoimmunity: a review on the potential interaction and molecular mechanisms. MDPI. 2019;11(8):762. doi:10.3390/v11080762
- COVID-19 Mental Disorder Collaborators. Global prevalence and burden of depressive and anxiety disorders in 204 countries and territories in 2020 due to the COVID-19 pandemic. Lancet. Published online October 8, 2021. doi:10.1016/S0140-6736(21)02143-7