Individuals who are referred to as having long COVID are those who continue to suffer debilitating effects of the disease for weeks or months after being infected with the virus.
There is no way to know how COVID-19 will impact you. While many who have contracted COVID-19 appear to be “recovered” after one to two weeks, there are many who would say they are far from being in that category. The definition of “long COVID” or “COVID long-haulers” has not yet been consistently used in the past by health care providers or researchers, but there are many ongoing studies looking at addressing this emerging issue.
One study used the definition of long COVID as symptoms lasting more than six weeks. This study found that among 100 non-hospitalized COVID-19 long haulers from 21 states, 85% reported at least 4 neurologic symptoms (e.g., brain fog, headache, disorders of taste or smell, etc.). Non-neurologic symptoms were also reported such as fatigue (85%), shortness of breath (46%), chest pain (37%), and gastrointestinal symptoms (29%). Many of these patients reported fluctuating symptoms lasting for months.
Another study looked at hospitalized patients assessed for continued symptoms at an average of 60.3 days (roughly 8.5 weeks) after the onset of the first COVID-19 symptom. Of the 143 patients included 12.6% were completely free of any COVID-19-related symptom, 32% had 1 or two symptoms, and 55% had 3 or more symptoms. The patients reported symptoms such as fatigue (53.1%), shortness of breath or difficulty breathing (43.4%), joint pain, (27.3%) and chest pain (21.7%).
The long-term significance of these effects is not yet known. Investigation and studies continue, including a study by the National Institutes of Health and we will provide updates as new data emerge, which can inform COVID-19 clinical care as well as the public health response to COVID-19.
Some of the effects long haulers continue to experience are: chronic fatigue, hair loss, blood clots, hearing deficits, tremors, body aches, tachycardia, heart palpitations and other cardiac issues, insomnia, cognitive issues, short term memory loss, vertigo, random adrenaline rushes, dysautonomia, anxiety, blurry vision, brain fog, and more. These side effects have a devastating impact on these individuals and their families.
There are several social media groups that connect people all over the world to discuss symptoms, experiences, coping mechanisms, and possible treatments. They have formed support groups for each other and believe there is power in numbers to bring light to the severity of COVID-19. They welcome anyone to share their story and connect with others who have had similar experiences. The views expressed by group members and moderators do not necessarily reflect the views of the Idaho Department of Health and Welfare.
Long COVID Facebook support groups
Parents of long-hauler kids Facebook support group
Other local resources
Carfì A, Bernabei R, Landi F, for the Gemelli Against COVID-19 Post-Acute Care Study Group. Persistent Symptoms in Patients After Acute COVID-19. JAMA. 2020;324(6):603–605. https://doi.org/10.1001/jama.2020.12603
Graham, E.L., Clark, J.R., Orban, Z.S., Lim, P.H., Szymanski, A.L., Taylor, C., DiBiase, R.M., Jia, D.T., Balabanov, R., Ho, S.U., Batra, A., Liotta, E.M. and Koralnik, I.J. (2021), Persistent neurologic symptoms and cognitive dysfunction in non‐hospitalized Covid‐19 “long haulers”. Ann Clin Transl Neurol. https://doi.org/10.1002/acn3.51350
NIH launches new initiative to study “Long COVID” https://www.nih.gov/about-nih/who-we-are/nih-director/statements/nih-launches-new-initiative-study-long-covid