The tragedy of the post-COVID “long haulers”

Suppose you are suddenly are stricken with COVID-19. You become very ill for several weeks. On awakening every morning, you wonder if this day might be your last.

And then you begin to turn the corner. Every day your worst symptoms — the fever, the terrible cough, the breathlessness — get a little better. You are winning, beating a life-threatening disease, and you no longer wonder if each day might be your last. In another week or two, you’ll be your old self.

But weeks pass, and while the worst symptoms are gone, you’re not your old self — not even close. You can’t meet your responsibilities at home or at work: no energy. Even routine physical exertion, like vacuuming, leaves you feeling exhausted. You ache all over. You’re having trouble concentrating on anything, even watching TV; you’re unusually forgetful; you stumble over simple calculations. Your brain feels like it’s in a fog.

Your doctor congratulates you: the virus can no longer be detected in your body. That means you should be feeling fine. But you’re not feeling fine.

The doctor suggests that maybe the terrible experience of being ill with COVID-19 has left you a little depressed, or experiencing a little PTSD. Maybe some psychiatric treatment would help, since there’s nothing wrong with you physically. You try the treatment, and it doesn’t help.

How common are lingering COVID symptoms?

Tens of thousands of people in the United States have such a lingering illness following COVID-19. In the US, we call them post-COVID “long haulers.” In the United Kingdom, they are said to be suffering from “long COVID.”

Published studies (see here and here) and surveys conducted by patient groups indicate that 50% to 80% of patients continue to have bothersome symptoms three months after the onset of COVID-19 — even after tests no longer detect virus in their body.

Which lingering symptoms are common?

The most common symptoms are fatigue, body aches, shortness of breath, difficulty concentrating, inability to exercise, headache, and difficulty sleeping. Since COVID-19 is a new disease that began with an outbreak in China in December 2019, we have no information on long-term recovery rates.

Who is more likely to become a long hauler?

Currently, we can’t accurately predict who will become a long hauler. As a recent article in Science notes, people only mildly affected by COVID-19 still can have lingering symptoms, and people who were severely ill can be back to normal two months later. However, continued symptoms are more likely to occur in people over age 50, people with two or three chronic illnesses, and people who became very ill with COVID-19.

There is no formal definition of the term “post-COVID long haulers.” In my opinion, a reasonable definition would be anyone diagnosed with the coronavirus that causes COVID-19, or very likely to have been infected by it, who has not returned to their pre-COVID-19 level of health and function after six months.

Long-haulers include two groups of people affected by the virus:

• Those who experience some permanent damage to their lungs, heart, kidneys, or brain that may affect their ability to function.
• Those who continue to experience debilitating symptoms despite no detectable damage to these organs.

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the National Institutes of Health, has speculated that many in the second group will develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS can be triggered by other infectious illnesses — such as mononucleosis, Lyme disease, and severe acute respiratory syndrome (SARS), another coronavirus disease. The National Academy of Medicine estimates there are one million to two million people in the US with ME/CFS.

Dr. Tedros Ghebreyesus, director of the World Health Organization, also has expressed growing concern about the chronic illnesses that may follow in the wake of COVID-19, including ME/CFS.

What might cause the symptoms that plague long haulers?

Research is underway to test several theories. People with ME/CFS, and possibly the post-COVID long haulers, may have an ongoing low level of inflammation in the brain, or decreased blood flow to the brain, or an autoimmune condition in which the body makes antibodies that attack the brain, or several of these abnormalities.

The bottom line

How many people may become long haulers? We can only guess. Right now, more than seven million Americans have been infected by the virus. It’s not unthinkable that 50 million Americans will ultimately become infected. If just 5% develop lingering symptoms, and if most of those with symptoms have ME/CFS, we would double the number of Americans suffering from ME/CFS in the next two years. Most people who developed ME/CFS before COVID-19 remain ill for many decades. Only time will tell if this proves true for the post-COVID cases of ME/CFS.

For this and many other reasons, the strain on the American health care system and economy from the pandemic will not end soon, even if we develop and deploy a very effective vaccine by the end of 2021.

Virtually every health professional I know believes that the pandemic in the US could and should have been better controlled than it has been. Bad mistakes rarely lead to only temporary damage.

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