Long Haulers: a tragedy
Suppose you are suddenly stricken with COVID-19. You have 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 work: no energy. Even routine physical exertion, like blowing 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 tests can no longer detect the virus in your body. That means you should be feeling fine. But you’re not feeling okay. You look better on paper than you feel. You try to wonder if this is depression or even PTSD. You seek the treatment and are disappointed.
What?
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.” Britishers call it “long COVID.” Although there is no formal definition of the term post-COVID long haulers, it is reasonable to include anyone diagnosed with 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.
The list of symptoms is long and variable. The most common include:
Coughing: one of the most common symptoms
Ongoing, sometimes debilitating, fatigue
Body aches
Joint pain
Shortness of breath
Chest pain
Change in heart rate
Chills
Night sweats
Gastrointestinal issues
Loss of taste and smell — even if this did not occur during the height of their illness
Difficulty sleeping
Headaches
Brain fog: unusually forgetful, confused or unable to concentrate even enough to watch TV. It can happen to anyone, regardless of initial severity of illness
Exhaustion: may be a form of what is called chronic fatigue syndrome, or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Unfortunately for long-haulers, ME/CFS is not well understood, either.
There are patients who can go for a run and test completely normal. But they still don’t feel right. They aren’t back to their old selves, but we can’t fully define what’s wrong
Who?
How many people may become long haulers? We can only guess. Published studies 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 the virus in their body. In a recent article and a study from a team of British scientists, the Journal of the American Medical Association estimates about 10% of COVID-19 patients become long haulers. But it’s hard to quantify because it’s hard to define the length of time that lingering symptoms fit the long-haul COVID category.
Currently, we can’t accurately predict who will become a long hauler. Long-term COVID-19 appears to affect every kind of patient — from people who were hospitalized with severe COVID-19 to those with very mild bouts who recovered at home. It appears in regions with both high rates and low rates of COVID-19 infections. It attacks people who were battling other conditions before contracting COVID-19 and people who were completely healthy. And it afflicts both the old and the young. What’s new is that this affects some quite young people who were very healthy and never had other illnesses. As a recent article in Science notes, people only mildly affected by COVID-19 still have lingering symptoms, and people who were severely ill can be back to normal two months later. However, persistent 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.
Long haulers include two groups of people affected by the virus:
Those who experience permanent damage to their lungs, heart, kidneys, or brain may affect their ability to function.
Those who continue to experience debilitating symptoms despite no detectable damage to these organs. It has been speculated that many in this 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 one million to two million people in the US with ME/CFS.
Why?
It’s so new that science is only beginning to grasp the phenomenon of long haulers. The vast majority of long haulers test negative for COVID-19 and there is no specific test to give them for lasting symptoms of the coronavirus. Unfortunately, we don’t know enough about the virus to test for its lingering effects. There are questions about why their fatigue goes on and on, and science just hasn’t solved them yet. We’re all learning in real-time.
Research is underway to test several theories. The most common theories about long-term COVID-19 patients:
the virus remains in their bodies in some small form. This doesn’t mean the virus is growing or that we can test for it, but this might mean their bodies are reacting to it or it’s still triggering ongoing inflammation
immune systems continue to overreact even though the infection has passed
Bottomline
For now, doctors affirm long haulers that it is real and encourage them to rest, recover, and be patient. We’re learning a lot at a very rapid pace, but we’re also a culture of wanting to know everything right now. The scientific process to figure out what’s going on … takes time. For pandemics, like the illnesses they generate, linger not only in our bodies but also in our minds, culture, and communities. What we choose to make of this lingering, and how we interpret the pandemic's sequelae, will be the true measure of our care.
References:
Published 11/1/2020
Dr. Amar Singh, MD, and Dr. Poonam Singh, MD, are board-certified by the American Board of Internal Medicine and American Board of Obesity Medicine. They specialize in preventing, treating, and reversing chronic diseases using an evidence-based holistic approach. They are specifically interested in weight management, hormone re-balancing, and longevity. The American College of Physicians has recognized them as Fellows, FACP, for their excellence and contributions made to both medicine and the broader community. They enjoy teaching, volunteering, and advocating for their patients. Their mission is to share simple, effective, and proven strategies that lead to meaningful, sustainable, and long-lasting well-being.
