There is hopeful, good news about long COVID and for the people living with it. Their months-to years-long journeys may be about to become shorter than the experiences of individuals who in the past suffered from the after-effects of infections like polio, Ebola, mononucleosis, borrelia (Lyme disease), and earlier coronaviruses. It is no secret that post-acute infection syndromes, the fancy term for symptoms that continue after an infectious illness is gone, have been neglected. This time around, due to dogged advocacy work by many of the world’s estimated 145 million people with long COVID, national governments and medical organizations have begun high-quality studies to identify the underlying abnormalities in long COVID and how to treat them.
We are learning helpful information. Most important are two actions that can already be taken to decrease the 15% to 30% of COVID-19 survivors who develop post-COVID conditions:
- Getting vaccinated against SARS-CoV-2 lowers the risk of long COVID after infection by about 15%.
- Taking the antiviral drug Paxlovid within the first few days of infection results in eligible patients becoming 26% less likely to experience long COVID symptoms in the following months.
Less controllable and begging for additional study are other facts about who gets long COVID:
- The odds of experiencing long COVID have been between 20% to 50% lower during the current Omicron period than during the earlier Delta period; however, because Omicron has infected vastly more people, its long haulers comprise a much larger group.
- Recent studies here and abroad show that women are more likely than men to have long COVID conditions, as are older adults.
- In the United States, the percentages of people reporting long COVID conditions do not vary much across different racial and ethnic groups, but individuals with a graduate educational degree vs. a high school diploma or less have fewer cases of long COVID.
- Urban dwellers are less likely than rural residents to experience long COVID.
- Second or later COVID infections in the same person are associated with a greater likelihood of persistent symptoms.
There is no universal agreement on how to define long COVID, which makes it difficult to study and compare affected groups across settings. Since we still do not know the mechanism behind long COVID, there can be no diagnostic test. Symptoms cluster into three main categories—neurological (extreme fatigue, brain fog, delirium, headache, depression, loss of smell), cardiorespiratory (shortness of breath, palpitations, chest pain), and systemic inflammatory and abdominal symptoms (including autoimmune problems and reactivation of previous viruses)—suggesting that there may be various causes.
Additionally, COVID-19 survivors, who were once sick enough to be hospitalized for it, may have also experienced worsening of pre-existing illnesses. They may have suffered multiorgan damage from pneumonia, stroke, heart attack or blood clots, or have become deconditioned from prolonged bedrest and from the anxiety, isolation, and psychologic trauma that any critical illness can cause. Then there is the puzzling fact that long COVID can develop in people whose initial COVID infections are mild or even asymptomatic.
We can help accelerate what is learned and then translated into effective care by enrolling as research participants in rigorous medical studies about long COVID. Adults who have ever tested positive for COVID-19 plus all those who never were infected may visit the RECOVER Initiative (https://recovercovid.org/) sponsored by the National Institutes of Health (NIH) to learn more.
People who continue to have COVID-related symptoms at least four weeks after they first tested positive should consult their primary care provider. As in any medical encounter, they should be sure to feel listened to, and both they and the clinician should share in making decisions about the next steps in care, realizing that much is not yet known. When needed, referrals to specialists can be made, up to and including referrals to comprehensive long COVID multi-specialty clinics, some 600 of which exist nationwide. Several of Pennsylvania’s long COVID clinics are provided through UPMC, Penn Medicine, and Geisinger.
The goal of their long COVID teams, often led by doctors trained in physical medicine and rehabilitation, is to provide full clinical evaluation and help people safely maximize their abilities. There are also online peer support groups for emotional understanding, resource-finding, and practical tips to help individuals navigate disability and the uncertainties of recovery.
As medical science works to improve future outcomes, the safest approach is to prevent long COVID entirely by minimizing the chance of COVID-19 infection or reinfection. In addition to being vaccinated and boosted, that means wearing an N95-type mask properly in crowded or poorly ventilated areas during times of high community COVID-19 levels, using rapid tests to avoid exposure and to get early treatment when necessary, staying away from people who show symptoms, and practicing good hand hygiene.
Barbara Hemmendinger, MSS, a member of the Lycoming County Health Improvement Coalition and a retired family medicine educator, belongs to Let’s End COVID! She is happy to provide full references for the data she describes and urges readers to consult their healthcare providers for more information.