In recent months, long Covid has received a great deal of media and public attention. Research has found that as many as one in four of those infected with Covid – perhaps millions of people in the US alone – suffer from chronic long-term symptoms, including headaches, dizziness, abdominal pain, heart problems, fatigue, anxiety, depression, cognitive impairment and other conditions.
It is a difficult and complex illness, and we must do much more to help those who are struggling with it. At the same time, it is important to realize that rather than being a strange special case, long Covid is probably part of a broader phenomenon that affects many more people. In recent years, doctors and researchers have increasingly realized that many of those who survive an illness of any kind, or who go through serious physical trauma, are at high risk for a range of debilitating and chronic physical, cognitive and mental health symptoms – problems that closely resemble long Covid.
Seen in this context, it’s not at all surprising that many patients infected with Covid find themselves dealing with an array of persistent health problems. This is not to minimize long Covid in any way, but simply to put it in a broader context.
The issue is in part a by-product of a medical transformation: over the past half-century, as medicine has advanced, clinicians have learned how to save hundreds of thousands of severely ill or injured patients who would have previously died. This is a remarkable accomplishment.
But in many cases, survival does not mean complete recovery: some patients find that their bodies, brains and psyches continue to bear the scars of what they have gone through. One non-Covid study found that a year after hospitalization, a third of patients with severe respiratory failure or shock had significant cognitive impairment. Another found that between a quarter and a third of patients who were treated in the ICU had significant and long-lasting symptoms of anxiety, depression or PTSD. Researchers have found similar results for survivors of other medical conditions, including cancer, multiple sclerosis and ALS.
Unfortunately, people with long Covid, as well as other chronic post-illness symptoms, often find that the medical establishment doesn’t understand their experience, and so minimizes or questions it. This is not surprising: clinicians tend to pay less attention to how patients with severe illness do once they are out of mortal danger, or once symptoms extend beyond an arbitrary time frame.
Researchers do not yet fully understand the physical causes of these chronic symptoms. It is clear that long Covid and long versions of other illnesses and injuries are not psychosomatic: these conditions have a physiologic basis. Among the possible culprits may be persistent dysfunction in inflammatory or immune responses triggered by the initial illness or injury. In some cases, the disease or injury may also leave permanent damage, just as a someone with a broken leg may end up walking with a limp.
With Covid, this situation may be exacerbated by the specifics of the disease. Chronic symptoms appear to be especially common after serious respiratory illness – which Covid often is. A study of patients who survived acute respiratory failure and received mechanical ventilation in the ICU found that more than 80% of them experienced physical, cognitive and/or mental health impairments after leaving the hospital. Moreover, Covid can affect a wide array of bodily symptoms, and so there are many possible pathways for it to leave lasting effects.
So what can we do to help these people with long Covid, or long versions of other conditions? One key is self-management. Patients with chronic post-illness problems can learn to cope effectively with many symptoms related to their condition, making decisions, tailoring their activities and forming effective relationships with clinicians. Through self-management, patients become active agents in the oversight of their condition. Multiple studies, including this one from 2019, have shown that teaching patients this approach can significantly improve their quality of life. Unfortunately, most hospitals and clinicians are not equipped to teach self-management, and so it is used much less than it could be.
Another useful strategy is peer support, which can help patients share information, and also become part of a community; the sense of enduring alone can be enormously dispiriting. (Of course, it’s also important to note that unmoderated peer support can contribute to unhealthy hyper-vigilance – an excessive focus on symptoms – and the dissemination of misinformation.)
But patients can’t do this alone. Healthcare institutions must do more to set up clinics and programs to help people with these problems. And scientists and funding agencies must focus more on unraveling the complex mechanisms that drive these conditions, as well as on potential strategies to reduce symptoms.
Beyond that, we must continue to spread the word, so that the public understands more about how severe illness and injury can often become a long-term condition. Increasing awareness will encourage healthcare providers, funders, families, colleagues and others to take this situation seriously. Millions of people with long Covid and other similar conditions continue to suffer, and we must do more to help them.