Most people with COVID-19 recover completely within a few weeks, but some experience lingering symptoms that continue beyond four to eight weeks after the initial viral infection. These individuals are referred to as COVID-19 long-haulers and have a condition sometimes referred to as long-haul COVID-19 or long COVID-19. Long COVID-19 sufferers can be younger and have initially experienced only mild COVID-19 symptoms.

Recently, the National Institutes of Health (NIH) has given this condition the alternate term Post-Acute Sequelae of SARS-CoV-2 Infection, or PASC. Some in the medical community consider patients to have the syndrome if they continue to have symptoms four to six weeks after the initial infection, while others say 12 weeks.

Long COVID-19 can affect individuals in multiple ways. Neuropsychiatric symptoms include brain fog, fatigue, anxiety, depression, PTSD, and headaches. It can also cause permanent damage to the lungs or heart by leading to persistent shortness of breath and chest pain. Patients have also been seen with ongoing kidney dysfunction and newly diagnosed or worsening diabetes.

We interviewed Noah Greenspan, the founder of Pulmonary Wellness and Rehabilitation Center in Manhattan and a Board-Certified Clinical Specialist in Cardiovascular and Pulmonary Physical Therapy with over 25 years of cardiopulmonary rehabilitation experience. He has been treating COVID-19 patients for over a year, and by May 2021, he has treated 300 COVID-19 long-haulers. He describes his patient population as about 90% women in their 30s, 40s, and 50s experiencing a much more chaotic pattern of exacerbation and remission of COVID-19 symptoms. The majority of his patients are white women, but recognizing that significant segments of the non-white population are disproportionately affected by COVID-19, he hopes to bring awareness concerning COVID-19 long-haulers and its impact on women’s health.

Greenspan recalls that in March 2020 he started getting referrals for severe COVID-19 patients, and by May 2020, COVID-19 long-haulers. Due to the overburdened hospital systems at the time in New York City, these patients were initially told that they were too young or not sick enough to require hospitalization. He speculates that their symptoms may be a reaction to not getting the care that they needed, or not otherwise being in a position where medical teams could quell the immune system overresponse.

While research is ongoing, most of what is known about long COVID-19 is based on reports from patients themselves. Greenspan notes that the grassroots efforts of people actually going through COVID-19 is really what moved the needle forward in terms of treatment and research. Patients were demanding that the medical community get on board. A patient-led survey with data from 56 countries showed that 96% of patients reported symptoms beyond 90 days. Survey data from Wuhan, China showed that more than 75% of people hospitalized for COVID-19 between January and May 2020 continued to report at least one symptom six months after the onset of their illness.

Despite the fact that this is still a developing phenomenon, Greenspan is hopeful for the future of his long COVID-19 patients. He says, “I am definitely seeing our community get better, albeit very slowly. This is not something to power through; we are on COVID’s timeline.”

Surprisingly, Greenspan has seen a few long COVID-19 patients claim to get better after the vaccine – recent studies show that as more people become vaccinated, 30%-40% of COVID-19 long-haulers have been reporting improved symptoms since becoming vaccinated. There is a lot left to learn via larger-scale studies, but researchers hypothesize that the vaccine may help the immune system fight off the remaining virus in the body or stop a harmful immune response. About 10%-15% of COVID-19 long-haulers report feeling worse after vaccination, and some don’t experience any changes at all. However, vaccination will help protect long-haulers from reinfection. Greenspan recommends all eligible people, long-haulers included, get the COVID-19 vaccine to prevent infection or reinfection.

If you think you have a post-COVID-19 condition, talk to your healthcare provider about options for managing or treating your symptoms. Seek public health resources for support. Post-COVID-19 care clinics are opening at medical centers across the United States to address patient needs. We also encourage you to join support groups for COVID-19 long-haulers; many of these groups are connecting virtually not only to support individuals experiencing long-hauler symptoms but to compile data to inform the medical community on this new syndrome. Contact your physician for information on local COVID-19 and long-haulers support groups.

While the country is seeming to move towards some semblance of normalcy, it is important to remember that multiple newer variants of COVID-19 are emerging and circulating in the United States. Some of these variants cause more severe disease, are more easily transmitted between people, and do not respond as well to currently available COVID-19 therapies. It remains important to protect yourself from COVID-19 infection both due to the inherent risks of contracting an acute case of COVID-19, but also to avoid long COVID-19. The CDC advises:

• Avoid crowds and poorly ventilated indoor spaces.
• Get a COVID-19 vaccine when it is available to you.
• Stay 6 feet apart from others who don’t live with you.
• Wash your hands often with soap and water. Use hand sanitizer if soap and water aren’t available.
• Wear a mask that covers your nose and mouth to help protect yourself and others.

Citation: Huang C, Huang L, Wang Y, Li X, Ren L, Gu X, Kang L, Guo L, Liu M, Zhou X, Luo J, Huang Z, Tu S, Zhao Y, Chen L, Xu D, Li Y, Li C, Peng L, Li Y, Xie W, Cui D, Shang L, Fan G, Xu J, Wang G, Wang Y, Zhong J, Wang C, Wang J, Zhang D, Cao B. 2021. 6-month Consequences of COVID-19 in Patients Discharged From Hospital: A Cohort Study. Lancet. Jan 16;397(10270):220-232.