Ann Marie Chang, MD, associate professor, emergency medicine, Jefferson University Hospitals, Philadelphia, also underscored that a better understanding of patients who experience persistent symptoms post-COVID-19 infection may help focus more attention on other conditions with similar long-term symptoms, such as chronic fatigue syndrome, for which a better understanding has long been needed.
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Dr. Chang is leading efforts at Jefferson University to enroll patients in a U.S. National Institutes of Health study, the Innovative Support for Patients with SARS-CoV-2 Infections (COVID-19) Registry (INSPIRE), to better understand the range of persistent symptoms of long-haulers.11
As both a physician who has treated COVID-19 patients and someone with firsthand experience of persistent symptoms after recovering from acute COVID-19 infection in March 2020, Dr. Chang says she hopes the study will provide needed information on questions about why some patients develop these symptoms, how to treat those who do and how to prevent the onset of persistent symptoms.
“Right now, as a physician, it feels like riding a bike that we’re building at the same time—there is such a rapid reassessment of recommendations for a condition that we don’t necessarily know how to treat,” Dr. Chang said in a Feb. 10 press release.12
As someone who knows what it feels like to have a condition without a clear diagnosis and treatment, she stressed the need for clinicians to recognize the condition.
“For patients whose quality of life has been so severely impacted, it’s really scary to hear from their doctors that we just don’t know what to do for them, and we don’t know when their symptoms will end—is it a year, two years, lifelong? We just don’t know,” Dr. Chang said.12
Mary Beth Nierengarten is a freelance medical journalist based in Minneapolis.
More Research Underway
A new U.S. National Institutes of Health initiative is underway to better understand the many unknowns about long-term complications of SARS-CoV-2 infection. The Post-Acute Sequelae of SARS-CoV-2 Infection (PASC) Initiative and Investigator Consortium is seeking applications to support research on the long-term complications of SARS-CoV-2 infection. For more information click here.
- Survivor Corps. Online resources for COVID-19 survivors, including national database of Post-COVID Care Centers (PCCC) by state
- Global Healthy Living Foundation’s Free COVID-19 Support Program for Chronic Disease Patients and Their Families
- Centers for Disease Control & Prevention’s Innovative Support for Patients with SARS-C0V-2 Infection Registry (INSPIRE):
- Body Politic’s COVID-19 support group
- Huang C, Huang L, Wang Y, et al. 6-month consequences of COVID-19 in patients discharged from hospital: A cohort study. The Lancet. 2021 Jan 16;397(10270):220–232.
- Townsend L, Dowds J, O’Brien K, et al. Persistent poor health post-COVID-19 is not associated with respiratory complications or initial disease severity. Ann Am Thorac Soc. 2021 Jan 8. Online ahead of print.
- Salmon-Ceron D, Slama D, De Broucker T, et al. Clinical, virological and imaging profile in patients with prolonged forms of COVID-19: A cross-sectional study. J Infect. 2021 Feb;82:e1–e4.
- Nehme M, Braillard O, Alcoba G, et al. COVID-19 symptoms: Longitudinal evolution and persistence in outpatient settings. Annals of Intern Med. 2020 Dec 8;M20–5926. Online ahead of print.
- Lopez-Leon S, Wegman-Ostrosky T. Perelman C, et al. More than 50 long-term effects of COVID-19: A systematic review and meta-analysis. MedRxiv preprint. 2021 Jan 30.
- Ramani SL, Samet J, Franz CK, et al. Musculoskeletal involvement of COVID-19: Review of imaging. Skeletal Radiol. 2021 Feb 18:1–11.
- Huang Y, Pinto MD, Borelli JL, et al. COVID symptoms, symptom clusters and predictors for becoming a long-hauler: Looking for clarity in the haze of the pandemic. medRxiv. 2021 Mar 5;2021.03.03.21252086. Preprint.
- Edwards E. Inside ‘post-COVID’ clinics: How specialized centers are trying to treat long-haulers. NBC News. 2021 Mar 1.
- Strosser JK, Yglesias R, Gaylis N, et al. Low incidence of coronavirus disease 2019 (COVID-19) infection in patients on biologic infusion therapies at a community rheumatology practice [abstract: 0435]. Arthritis Rheumatol. 2020 Oct;72(suppl 10).
- CytoDyn Inc. Study to evaluate the efficacy and safety of leronlimab for patients with severe or critical coronavirus disease 2019 (COVID-19) [NCT04347239]. CinicalTrials.gov. 2020 Nov 16.
- Hota B, Rush University Medical Center. Innovative support for patients with SARS-COV2 infections (COVID-19) registry (INSPIRE) [NCT04610515]. CinicalTrials.gov. 2021 Feb 24.
- Thomas Jefferson University. Investigating the long-term effects of COVID-19. Newswise. 2021 Feb 10.