A Long Road for Long-Haulers

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While most people recover from Covid-19 within a matter of weeks, this is not the case for a group of people known today as “Long-Haulers.” They are Covid-19 survivors who develop Long-Covid, or symptoms that continue for at least four weeks after a positive Covid-19 test.¹ One in five Covid-19 survivors between the ages of 18–64 and one in four over the age of 64 may develop Long-Covid.² While Long-Covid occurs more often in people who had severe Covid-19 symptoms, any Covid-19 survivor may develop this condition.² Those with underlying health issues, who are not vaccinated against Covid-19, and who are limited in their access to health care due to inequities may also be at an increased risk. Long-Covid symptoms have been shown to persist for months and even years in affected patients.²

Fatigue, trouble breathing, headaches, and attention disorders are the most common symptoms experienced by adults who develop Long-Covid.³ Researchers have identified over fifty Long-Covid related symptoms to date.³ These include symptoms impacting multiple body systems in addition to mental health issues (see figure 1 below).

Figure 1: Long-term effects of Covid-19 in individuals 18+³

The most common symptoms experienced by children and adolescent Long-Haulers are mood disorders (e.g. depression, anxiety, etc.), fatigue, sleep disorders, and headache (see figure 2 below).⁴ Of those who develop Long-Covid, 68 percent have at least one persistent symptom at six months, 49 percent at 12 months, and 55 percent at 24 months post-infection.⁵

Figure 2: Long-term effects of Covid-19 in children and adolescents⁴

Treatment of Long-Covid:

Current treatment recommendations for Long-Haulers are slim, but focus on the management of symptoms and known conditions.⁶ A clinic at Mount Sinai devoted to treating Long-Covid shares that effective treatment plans for Long-Haulers should be holistic, personalized to the patient, and include the input of a broad range of specialists.⁷

Lowering Your Risk of Developing Long-Covid:

Anyone with Covid-19 may develop Long-Covid. The best protection therefore is to follow precautions known to prevent Covid-19 infection: social distancing, wearing masks, and following the Center for Disease Control (CDC) guidelines for gatherings. In addition, research now shows that the Covid-19 vaccine not only protects against Covid-19, but also serves as protection from Long-Covid by reducing one’s likelihood of developing the condition if they do contract Covid-19.⁸

Resources Available to Long-Haulers:

Clinics designed to treat Long-Haulers have opened across the U.S. over the course of the pandemic. Over sixty Long-Covid clinics exist to date and are staffed with doctors trained in the assessment and treatment of Long-Covid. While these clinics are a tremendous resource, they can be costly even with insurance, preventing many patients from receiving such specialized care. Community Health Centers offer care for uninsured patients who may be able to receive low or no-cost treatment. A list of these centers can be found here, and the need for such resources will only increase as the pandemic continues. In some circumstances, Long-Covid may be considered a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA).⁹

Long-Covid Research Opportunities:

Researchers are turning to clinical trials to better understand Long-Covid. Causes of the condition, as well as factors that increase certain individuals’ likelihood of developing it, are just a few of the answers clinical trials can help uncover. Research studies continue to be helpful in identifying possible treatments for Long-Haulers. For example, antidepressant use was found to be effective in reducing Long-Covid symptoms.⁶ Additional studies are underway to learn if certain medications and devices like hyperbaric oxygen chambers can also help treat Long-Haulers.⁶

There are many opportunities for Long-haulers and non-Long-haulers alike to participate in research including:

• ResearchMatch.org has connected thousands of people who are interested in participating in research with researchers across the U.S. Anyone living in the U.S. can register online with ResearchMatch to receive messages about research studies and a customized list of studies matching their health condition, age, sex, and willingness to travel. ResearchMatch volunteers can now include “Long-Covid” as a health condition in their profile and may be connected to available research studies.
• TrialsToday.org is an easy-to-use search tool that compiles all studies in the U.S. that are looking for participants. By describing your interest and willingness to travel to be in a study about a health condition, Trials Today will present studies to you that match your interests and connect you with research teams.
• Clinicaltrials.gov is a web-based resource that provides patients, families, health care professionals, and the public easy access to clinical research trials. Subscribing to searches such as “Covid-19 and Complications” on clinicaltrials.gov will allow you to be notified of studies for which you can participate, including individuals who previously had Covid-19 and fully recovered.

While the prognosis for Long-Haulers is unknown, access to resources, support from employers, and findings from clinical trials can aid in their recoveries. As society begins to take steps past the pandemic in a post-lock-down era with decreasing Covid-19 precautions, important considerations as it relates to Long-Covid are two-fold: the best protection from Long Covid is to avoid contracting Covid-19 and; 20–25 percent¹ of our population may be unable to move past the pandemic along with the rest of society. It will be crucial to continue having conversations around Long-Covid and to hold space for the stories and experiences of Long-Haulers.

References:

1. CDC. Post-COVID Conditions [Internet]. Centers for Disease Control and Prevention. 2022 [cited 2022 Jun 8]. Available from: https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
2. Bull-Otterson L. Post–COVID Conditions Among Adult COVID-19 Survivors Aged 18–64 and ≥65 Years — United States, March 2020–November 2021. MMWR Morb Mortal Wkly Rep [Internet]. 2022 [cited 2022 Jun 8];71. Available from: https://www.cdc.gov/mmwr/volumes/71/wr/mm7121e1.htm
3. Lopez-Leon S, Wegman-Ostrosky T, Perelman C, Sepulveda R, Rebolledo PA, Cuapio A, Villapol S. More than 50 long-term effects of COVID-19: a systematic review and meta-analysis. Sci Rep. 2021 Dec;11(1):16144. Available from: https://pubmed.ncbi.nlm.nih.gov/33532785/
4. Lopez-Leon S, Wegman-Ostrosky T, Ayuzo del Valle NC, Perelman C, Sepulveda R, Rebolledo PA, Cuapio A, Villapol S. Long-COVID in children and adolescents: a systematic review and meta-analyses. Sci Rep. Nature Publishing Group; 2022 Jun 23;12(1):9950. Available from: https://pubmed.ncbi.nlm.nih.gov/35739136/
5. Huang L, Li X, Gu X, Zhang H, Ren L, Guo L, Liu M, Wang Y, Cui D, Wang Y, Zhang X, Shang L, Zhong J, Wang X, Wang J, Cao B. Health outcomes in people 2 years after surviving hospitalisation with COVID-19: a longitudinal cohort study. Lancet Respir Med [Internet]. Elsevier; 2022 May 11 [cited 2022 Jul 5];0(0). Available from: https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(22)00126-6/fulltext
6. Crook H, Raza S, Nowell J, Young M, Edison P. Long covid-mechanisms, risk factors, and management. BMJ. 2021 Jul 26;374:n1648. PMID: 34312178 Available from: https://pubmed.ncbi.nlm.nih.gov/34312178/
7. Center for Post-COVID Care |mountsina.org [Internet]. [cited 2022 Oct 6]. Available from: https://www.mountsinai.org/about/covid19/information-resources/center-post-covidcare
8. Kuodi P, Gorelik Y, Zayyad H, Wertheim O, Wiegler KB, Jabal KA, Dror AA, Nazzal S, Glikman D, Edelstein M. Association between vaccination status and reported incidence of post-acute COVID-19 symptoms in Israel: a cross-sectional study of patients tested between March 2020 and November 2021 [Internet]. medRxiv; 2022 [cited 2022 Jun 8]. p. 2022.01.05.22268800. Available from: https://www.medrxiv.org/content/10.1101/2022.01.05.22268800v2
9. Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov [Internet]. [cited 2022 Jul 8]. Available from: https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html

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