Will Fatalism Kill the Needed Response to Long COVID?

David Putrino, PhD


October 14, 2022

Editor's note: Find the latest long COVID news and guidance in Medscape's Long COVID Resource Center.

The still-raging SARS-CoV-2 pandemic brings a devastating and more far-reaching shadow pandemic: long COVID.

David Putrino, PhD

There are many reasons for us to characterize long COVID as a "shadow pandemic," but I believe that foremost among them is the distressing extent to which it is being ignored, dismissed, or denied by our society at large. This general apathy and inattention toward long COVID is occurring in spite of the alarming recent report from the US Centers for Disease Control and Prevention, which estimated that as many as 1 in 5 people who experience an acute SARS-CoV-2 infection will go on to develop long COVID.

In addition, the same survey from the CDC's National Center for Health Statistics showed that 80% of those with long COVID symptoms report that their ability to function on a daily basis has been affected. Given the enormous numbers of people who develop long COVID symptoms following acute infection, and the general air of fatalism that we are observing toward long-term public health policy to prevent SARS-CoV-2 infection, it's clear that we have failed to adequately sound the alarm about long COVID.

As a result, the long-term health of millions of Americans could be forever changed.

What is so wrong with our national response to long COVID that we fail to mobilize adequate resources to address the greatest mass-disabling event of our lifetime? Perhaps it is because the impact of acute SARS-CoV-2 can be easily measured using grim metrics such as death count, hospitalizations, and ICU bed utilization, yet in contrast, long COVID's effects on society are more insidious. In fact, perhaps our greatest humbling moment as clinicians in this pandemic should come from the truth that we're actually very poor at seeing beyond what is easily measured.

As with many other infection-associated complex chronic illness, most people with long COVID will experience a dizzying and diverse array of as many as 200 symptoms, affecting every organ system, as characterized in eClinicalMedicine by the Patient-Led Research Collaborative. These symptoms significantly affect daily function, with a recent study that we completed showing that among people with long COVID, 60% showed signs of at least mild cognitive impairment, and more than 50% have found it necessary to change their employment status with the onset of their postviral symptoms.

There can be no doubt that the impact of long COVID will be both devastating and far reaching, and with no effective cures on the horizon there is a critical need for rapid, action-oriented research that evaluates promising therapeutic targets for long COVID.

The only silver lining in our shadow pandemic is the emergence of a new age of health advocacy. Patient-led research organizations for long COVID have begun to actively collaborate with seasoned researchers, patients, and patient advocates from other complex chronic illness areas, such as Lyme disease, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and Ehlers-Danlos syndrome.

Already, the impact of these patients and their chronic disease allies is being felt. The Patient-Led Research Collaborative has been responsible for one of the most influential papers to date describing the symptoms of long COVID, and the Long COVID Research Initiative has been formed and fully funded to engage in rapid, action-oriented clinical trials by the PolyBio Research Foundation, which is focused on research into infection-associated complex chronic illnesses.

Such organizations are driving incredibly comprehensive biomedical and clinical research, and doing so at an unprecedented pace. As we continue to tackle the long COVID pandemic, my hope is that our biggest weakness — the unfathomable number of people who are sick with long COVID — will become our biggest strength: an unstoppable army of long COVID advocates who demand actionable change to the status quo of clinical management and research of infection-associated complex chronic illness.

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