Recognizing LONG COVID

By Kirby Sokolow
From PHN Issue 53, Summer 2023

Three years have passed since the World Health Organization first declared COVID-19 a pandemic. However, people worldwide continue to suffer from this novel coronavirus’ devastating effects. Among them are an estimated 65 million people with symptoms of Long COVID.

Long COVID—also called post-COVID syndrome or post-acute sequelae of SARS-CoV-2 infection—is when someone keeps having COVID-19 symptoms or gets new symptoms that last weeks, months, or years after they get COVID. Anyone infected with COVID-19 can develop Long COVID, even vaccinated folks and people whose initial symptoms were mild. However, vaccination does lower your risk of both getting COVID and developing long COVID.

Long COVID presents differently in every person, with over 200 symptoms reported in total. Despite new research suggesting that Long COVID might be a neurological condition, much remains unknown about the illness; experts continue to research and debate the mechanism or perhaps mechanisms by which COVID-19 infection can disable millions. The lack of definitive answers about Long COVID has been one barrier to diagnosis and treatment for many patients. Another has been lack of access to COVID-19 testing. While a positive test is not required for a Long COVID diagnosis, hard data like test results carry weight for many doctors and may streamline care.

The history of stigma in the medical field against post-viral illnesses like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which Long Covid cases often resemble, also poses problems for patients. Even as leading researchers affirm that Long COVID (like ME/CFS) is a physical condition, patients still encounter providers who reduce the cause of their symptoms to stress or anxiety.

Long COVID patients (often called “Long Haulers”) have been fighting together and alongside ME/CFS activists for recognition and care through sharing knowledge. They are empowering one another to recognize and understand their symptoms, to demand relevant tests and treatments, and to advocate for Long COVID research. As an extension of this network, below is some information about 4 common yet complex Long Covid symptoms.

Post-Exertional Malaise (PEM)
PEM is the hallmark symptom of ME/CFS and common in Long Covid as well. PEM is an experience of reduced functioning and/or worsening of someone’s symptoms following physical or mental activity. The symptoms appear hours or days after the initial activity, which can be minor: often something a person could do easily before getting sick, like taking a shower. Patients sometimes describe PEM as a “crash” or “shutdown” of their body. Others compare it to a bad hangover or the beginning of the flu (aches, weakness, a sore throat, congestion). For many, it involves overwhelming fatigue.
For years, medical providers incorrectly told people with ME/CFS to exercise their way to recovery. Today, experts recognize that for patients experiencing PEM, exercise can cause their bodies harm. Instead, they emphasize managing activity through pacing: being active when you are able, but starting slow and stopping and resting before you get tired, when you still feel okay. The advocacy group MEaction’s “Stop.Rest.Pace.” campaign provides an easy way to remember the steps that offer people with PEM the best chance at recovery.

Fatigue
Many Long Haulers experience fatigue, an extreme exhaustion that persists regardless of how much sleep they get or their activity level. Fatigue can make your body feel weak or intensely heavy (a dull, dead weight). Some people also report sleep that is not restful or refreshing, no matter how long they sleep. As with PEM, activists and experts emphasize the importance of stopping, resting, and pacing, rather than pushing through fatigue.
Activists suggest that being descriptive about how fatigue feels (e.g., how it impacts your day or how your energy levels changed after catching COVID) may help medical providers recognize the severity of fatigue. If you do want to be more active, expressing this may also help medical providers distinguish Long COVID fatigue from depression.

Postural Orthostatic Tachycardia Syndrome (POTS)
Many folks with Long COVID develop POTS, a problem with the autonomic nervous system that causes a high heart rate (tachycardia) when a person is in an upright (orthostatic) position. The autonomic nervous system is the “autopilot” of the nervous system: It regulates unconscious body processes like heart rate, blood pressure, temperature, and digestion. In POTS, this system is not regulated properly.
POTS symptoms like lightheadedness, fainting or almost fainting, a pounding heartbeat, shakiness, chest pain or tightness, and nausea often happen when a person is upright. Lying down can usually provide relief. The diagnostic criteria for POTS is a 30-beat-per-minute rise in heartrate when someone stands up, which is sustained over time.
Because POTS specialists are rare, however, many Long Haulers with symptoms have had to self-advocate for testing to diagnose POTS: either a Tilt Table Test or a more informal 10-minute stand test, which record a patient’s heart rate and blood pressure while they are first lying down and then upright. In a formal Tilt Table Test, the patient is strapped to a flat table designed to tilt upright, and an electrocardiogram (EKG) also tests for irregular heart beats (arrhythmias).
Treatment for POTS includes medications that regulate heart rate (e.g., beta-blockers or calcium-channel blockers) and blood pressure. However, such medications often require trial and error since each patient is different. Finding the right medication, however, can make a huge difference in a POTS patient’s life. Medical providers also often recommend increasing one’s water and salt intake. However, adding salt to your diet may worsen other medical conditions and should only be done under the care of a medical professional. While medical providers sometimes recommend physical therapy for POTS, if you are also experiencing PEM, exercise is not recommended and can be harmful.

“Brain Fog”
Experienced by nearly half of all Long Haulers, “brain fog” describes a variety of brain symptoms including increased forgetfulness, memory loss, difficulty concentrating, and a feeling of mental sluggishness. Some researchers have found similarities between the effects of Long COVID and those of concussions.
Learning to pace yourself mentally can help you cope with brain fog. This may involve recognizing which mental activities make your brain fog worse (e.g., having conversations, reading, writing, looking at a computer) and, when doing them, stopping to rest before you get tired in order to build up your endurance. This can be an emotional process, since these activities can be tied to our identities and communities. Coping with brain fog may also mean finding new ways to do things, like writing things down, keeping a calendar, and keeping to one task at a time. Some providers also prescribe medications to help with concentration.

Camaraderie and Support
Long COVID can be a lonely and isolating experience, but building relationships with other people living with it can be extremely affirming for Long Haulers—especially in a world trying to forget the pandemic. Talking with others who understand the loss and fear that may come with Long COVID, who support rest and embrace pacing, and who affirm that each one of us knows our own body best can provide strength. Even though it may feel otherwise, people with Long COVID are not alone: Millions of us have the same symptoms and continue to fight for recognition, research, and treatment.