by Katie E. Golden, MD

As we round out month 16 of the COVID pandemic in the US (yes, I am counting our months of survival the same way I would the age of my first child), we are starting to learn more about the long term outcomes of the virus. This includes patients who develop COVID-like symptoms weeks after recovery from the infection, which has been informally termed ‘long COVID.’ Now, I know what you’re thinking: infected or not, aren’t we all suffering from ‘long COVID’ to a certain degree? There should certainly be a formal diagnosis for parents who are going crazy after being at home with their kids for over a year, but today we are going to talk specifically about this observed post-infectious syndrome.

What does ‘long COVID’ mean?

A patient with ‘long COVID’, sometimes referred to as a ‘COVID long-hauler’, is someone who experiences ongoing symptoms well after clearance of their COVID-19 infection. (This condition is now formally termed ‘post-acute sequelae of COVID-19’). The symptoms can vary, and are not necessarily the same symptoms the patient experienced during their infection. The most common long COVID symptoms include extreme fatigue, shortness of breath, chest pain or chest tightness, headaches, difficulty concentrating or thinking, lack of appetite and digestive problems.

While we are still trying to understand the nature of this condition, we are noticing that the patients tend to have a full recovery from their infection, then develop these symptoms about 4 to 8 weeks after their infection. While most patients recover within 6 months, there have been patients who continue to experience symptoms 9 to 12 months out from their infection.

Who typically develops long COVID?

We have observed that the patients most commonly experiencing these symptoms tend to be younger, healthier people in the 20-50 age range. They also tend to have milder symptoms during their COVID-19 infection, and seemingly recover quite quickly. For example, patients with only mild congestion during their infection can go on to develop profound exhaustion, shortness of breath with walking or light exercise, loss of appetite, etc. These symptoms can feel more severe and debilitating than their initial infection, which is understandably very disconcerting to the patient.

Is the patient with long COVID still infected?

No. These symptoms are not indicative of ongoing infection. Patients with these symptoms who get re-tested are repeatedly negative, and research centers looking into the condition have not detected any active infection.

Why does it happen?

In short, we don’t know. This is yet another mystery of the virus that has baffled scientists, but researchers are developing theories based on the fact that we are seeing this more frequently in patients with healthy immune systems. The current theory is that the symptoms result from ongoing immune activation, which persists after the infection has been neutralized and killed by the initial, powerful immune system response.

Can a patient with long COVID still get vaccinated?

Yes, absolutely. In fact, there are emerging reports that some patients with long COVID see a marked improvement in their symptoms after vaccination. We still don’t know the validity of this phenomenon, as patients may be recovering naturally from the condition and falsely attributing it to the timing of their vaccination. Scientists, however, are questioning if the vaccine ‘resets’ the immune system, eliminating the lingering activity responsible for the condition. Again, this is all speculation until we can better understand the nature of long COVID.

Is there any treatment for long COVID?

Right now, the only treatment is time. Until we have a better understanding of the underlying cause of this condition, all the interventions to help the patient are supportive (such as physical or cognitive rehabilitation) and symptom control (headache relief, digestive support, etc).

What should a patient do if they have symptoms of long-COVID?

First, don’t worry. The last thing an exhausted, short of breath patient needs is a panic attack, or added anxiety that their symptoms are due to any long-term organ damage. They deserve reassurance that they are healthy, and will recover from these symptoms in due time. Second, patients should schedule an appointment with their primary care doctor, who can determine if any additional testing is needed to rule out other non-COVID related causes of their symptoms.