Listen to this article:
In March 2020, Gez Medinger came down with COVID-19. The London-based filmmaker was 41 years old, busy with work, sports, and training for the London Marathon. “Exercise and activity were a huge part of my life,” he recalls. “I was near the end of my marathon training, and I was the fastest and fittest I’d ever been.”
Medinger’s bout of COVID was mild. “At the time, we were told there were basically two possible outcomes. If you’re old and have preexisting conditions, you might end up in the hospital and it might go very badly. If you’re young, you’ll get over it in a week and you’ll be fine.”
Feeling that he was in the latter category, Medinger returned to marathon training in the second week of his infection. “I started going on some gentle runs every day — because I didn’t want to lose fitness,” he says. “Looking back, I wish I hadn’t.”
After each run, he felt exhausted. But he kept powering through.
One morning, about five weeks after his initial infection, he woke up with a distinctly gristly feeling in his throat and chest. Medinger remembered having the same feeling 20 years earlier when he had mononucleosis, the illness caused by Epstein-Barr virus (EBV).
“It took me a year to get over mono. I thought, Am I looking down the barrel of another year like that now?”
Medinger struggled with intense fatigue, headaches, heart palpitations, and brain fog. Then he heard about others experiencing the same. So he decided to devote his YouTube channel to exploring the science of postviral fatigue and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which shares many symptoms with long COVID.
His videos soon attracted hundreds of thousands of views, many of them from fellow long-haulers — people who had also found themselves unable to return to their pre-COVID baseline.
Developing the Long-COVID Picture
Estimates for the prevalence of long COVID vary widely, in part because the condition still lacks a consistent definition. Different studies use different time frames or include varying sets of symptoms; many do not include a control group for comparison.
The Centers for Disease Control and Prevention (CDC) refers to the long-term effects of COVID infection as “long COVID” or “post-COVID conditions.” Experts and physicians also use the term “post-acute sequelae of COVID-19” (PASC).
The CDC generally characterizes the phenomenon as “a wide range of new, returning, or ongoing health problems that people experience after first being infected with the virus that causes COVID-19.”
The World Health Organization (WHO) offers a more specific definition, stating that post–COVID-19 conditions involve symptoms that arise within three months of the initial infection, persist for at least two months, and cannot be explained by an alternative diagnosis.
The WHO description includes these symptoms: “Fatigue; shortness of breath or difficulty breathing; memory, concentration, or sleep problems; persistent cough; chest pain; trouble speaking; muscle aches; loss of smell or taste; depression or anxiety; fever.” It also notes that symptoms might appear after an initial recovery or persist from the initial illness, and that they may fluctuate or relapse over time.
At the time of writing, the CDC estimates that 13.3 percent of people who had COVID experience post-COVID symptoms at one month or longer after infection, and 2.5 percent at three months or longer, based on self-reporting. It also estimates that more than 30 percent of those hospitalized for COVID exhibit PASC symptoms six months after their initial infection.
Many long-COVID treatment programs, including the one at UCLA, accept only patients whose symptoms have persisted for at least 12 weeks after infection. UCLA Health Long COVID Program director Nisha Viswanathan, MD, notes that many people with lingering COVID symptoms will see them resolve within a few months; those whose symptoms continue beyond that point can be considered to have PASC.
There is more to learn about who is most vulnerable, but research has revealed a list of possible risk factors: age younger than 50; type 2 diabetes, asthma, or allergies; the presence of autoantibodies; reactivated EBV; a diminished gut microbiome; a history of anxiety disorder; and autoimmunity.
Research also suggests that people who experience infections after being vaccinated are less likely to experience long COVID, compared with those who are unvaccinated. Yet, here again, the study results vary widely, ranging from modest protection from a vaccine (15 percent) to substantial (50 percent).
Is There a Long-COVID “Type”?
Medinger has found some provocative commonalities among his extensive community of long-haulers. “It’s a subject that’s quite sensitive to address for those with a history of ME/CFS, but we’re seeing a surprisingly high proportion of people who previously exhibited type A personalities,” he says. “And when you dig a bit more, they frequently have some history of significant prior physical or emotional trauma.”
He’s also noted that a disproportionate number of athletes and highly fit people have been affected. In an informal poll of 1,200 long-haulers, Medinger found that two-thirds had engaged in vigorous exercise at least three times a week before their COVID-19 infection.
“The patients I’ve disproportionately seen in the long-COVID program are those who spend a lot of time on cardio-based activities — marathon runners, people who are really into biking. Less frequently, I see patients who do more weightlifting or yoga types of exercise.”
This mirrors Viswanathan’s experience. “Interestingly, the patients I’ve disproportionately seen in the long-COVID program are those who spend a lot of time on cardio-based activities — marathon runners, people who are really into biking. Less frequently, I see patients who do more weightlifting or yoga types of exercise.”
These anecdotes do not qualify as scientific data. But if they point toward an underlying vulnerability among highly fit, active, and driven types, what might be the cause?
“The thing that gives this theory merit is that there are downsides to being a type A personality and being an overexerciser in terms of immune function,” says Joel Evans, MD, director of the Center for Functional Medicine in Stamford, Conn. Whether physical or psychological, “stress decreases the efficiency of the immune system and could conceivably increase the likelihood of developing long COVID.”
High levels of activity can also stress the autonomic nervous system (ANS), adds Medinger. The ANS controls bodily functions that aren’t consciously directed, such as breathing, heart rate, and digestion.
“When those autonomic systems are running in a high state of stress, it’s relatively easy for them to be tipped over into this dysregulated state,” he explains. Indeed, many long-COVID sufferers experience dysautonomic symptoms: a racing heart, shortness of breath, headaches, dizziness, and extreme fatigue.
This may also explain why prior trauma could increase one’s vulnerability to the illness. Medinger explored this in video interviews with clinical psychologist Sally Riggs, DClinPsy. Riggs also suffered from long COVID, but she found relief through an approach that included addressing past emotional trauma.
“If you’ve got prior trauma, especially in childhood, you find yourself existing in a constant state of sympathetic overdrive, because that has become familiar,” says Medinger. “Going into rest-and-digest mode actually feels uncomfortable, so you do stuff to keep yourself in fight-or-flight mode — hence the type A personality. You may think you’re living a healthy lifestyle, but your whole body is on a knife’s edge.
“Then this pandemic virus comes along and knocks you over the edge.”
Long COVID and Fatigue
What makes some people more vulnerable to long COVID than others is still in question, but experts agree that the SARS-CoV-2 virus itself is the condition’s primary cause. Yet even here there are differing theories about the exact mechanisms at play.
One is that the virus (or virus fragments) persists in the body, causing an extended inflammatory immune response.
Another is that EBV and other dormant viruses reactivate while the immune system is distracted by fighting COVID. Patients who suffered more severe initial infections may experience organ damage. Others may develop autoimmunity.
Still others develop microvascular changes and clots that can affect heart and lung function. Any of these factors can also be at play in long COVID.
Different underlying causes may also contribute to different sets of symptoms. Leonard Calabrese, DO, director of the Cleveland Clinic’s R. J. Fasenmyer Center for Clinical Immunology, notes that research has identified a handful of different long-COVID “endotypes,” or subtypes.
One of these is dominated by neurological symptoms, such as headaches.
Another presents mainly with respiratory symptoms, such as coughing and breathlessness.
A third is the fatigue endotype. “This endotype is the most well defined,” says Calabrese. “This is very reminiscent of ME/CFS. It’s attended by fatigue that impairs activities of daily living and is made worse by exertion, whether physical or mental.”
People with this type of long COVID often have disturbed, unrefreshing sleep and neurocognitive problems, such as brain fog.
“We almost need a new word for the fatigue that comes with long COVID. It’s like no other fatigue you normally experience.”
This can be distressing for formerly fit and active people. “We almost need a new word for the fatigue that comes with long COVID,” says Medinger. “It’s like no other fatigue you normally experience. I’ve done three marathons and consecutive all-nighters running my own business, and nothing comes close. You can’t read, watch TV, think, sit up. You’re just gone.”
A few things may contribute to the severity of this exhaustion. One involves microclots in the blood, which can clog capillary beds and prevent tissues from getting oxygen, causing the cells to metabolize less efficiently.
A small study published in August 2021 found that 10 patients who had recovered from COVID reported reduced peak aerobic capacity compared with controls, as well as “impaired systemic oxygen extraction.”
Researchers are also examining the role of mitochondria, the energy-producing parts of our cells. “Mitochondria help protect against viral infection,” notes Evans. “SARS-CoV-2 has direct pathways to damage mitochondria. Normalizing and optimizing mitochondrial function is so important across the spectrum of COVID, from prevention to mitigation to recovery and treatment of post-COVID syndrome.” (Read more on supporting these energy producers at “The Care and Feeding of Your Mitochondria“.)
Viswanathan doubts that there’s a single cause at play. “Not only are we seeing patients who are having fatigue as a result of some compromise to their heart and lungs; we’re also seeing fatigue related to poor sleep quality and uncontrolled depression and anxiety — issues that go beyond the scope of one organ and are more multifactorial.”
What We Know About Treatment
The multifactorial nature of long COVID highlights both the need for a multidisciplinary treatment approach and the limits of a drug-first approach. “There’s no drug intervention for long COVID specifically,” says Evans. But depending on a patient’s symptoms or underlying conditions, medication can be a useful part of the healing toolkit.
Researchers are looking at whether Paxlovid, the antiviral drug designed to treat acute infection in high-risk patients, could help long-haulers whose symptoms may be caused by persistent virus infections. Statins, mast-cell stabilizers (anti-inflammatory drugs that calm histamine-releasing immune cells), or anticoagulants could be indicated for some people. Others may need treatment for asthma or new mood disorders.
“We know there’s a strong mind–body connection, and it looks like COVID can cause changes in the hormones in the brain that can lead to depression and anxiety.”
“We know there’s a strong mind–body connection, and it looks like COVID can cause changes in the hormones in the brain that can lead to depression and anxiety,” notes Viswanathan. “Often we find that by treating that, some of these other symptoms are better controlled as well.”
Medinger has found relief with antihistamines, medications usually used to treat allergy symptoms by blocking the body’s histamine receptors. His experience is echoed by a pair of case studies, in which two long-COVID patients saw significant improvement in some symptoms after taking common over-the-counter antihistamines for unrelated allergies.
Another study, in the Journal of Investigative Medicine, found that 72 percent of long-COVID patient participants who received antihistamines reported partial or complete resolution of their symptoms, compared with 26 percent of controls.
“There’s a very small evidence base at the moment, but antihistamines seem to show benefit, particularly in those with any previous indication of allergies, but also in people with no history of allergies,” says Medinger. He notes that more research is needed.
The Supplement Question
Many people with long COVID have tried a vast array of nutritional supplements, searching for one — or a combination — that will help. “Anecdotally, patients say some of these supplements work, but we have no studies showing any one thing has been superior for all patients,” says Viswanathan.
Medinger agrees. “You can find someone for any supplement, saying, ‘This fixed me.’ There’s a list as long as your arm, and you can spend thousands of dollars on them. Do any of them really seem to help consistently across the board? No.”
Nutrients that support mitochondria, such as carnitine, thiamine, riboflavin, magnesium, CoQ10, and alpha-lipoic acid, can help enhance mitochondrial function and energy production.
Still, Evans notes that quercetin (a bioflavonoid found in onions, green tea, apples, and berries) is important for immune function. And nutrients that support mitochondria, such as carnitine, thiamine, riboflavin, magnesium, CoQ10, and alpha-lipoic acid, can help enhance mitochondrial function and energy production.
Restoring gut health with probiotics is also important and supported by research. (For more on probiotics and gut health, see “Everything You Need to Know About Probiotics“.)
Just as everyone will have unique supplement needs, dietary approaches work best when personalized. Viswanathan has seen some patients improve on an anti-inflammatory, low-histamine diet that limits carbs and omits meat, lactose, and alcohol.
But this highly restrictive approach can be difficult to maintain over time. Working with a functional nutritionist or doctor can help someone with long COVID chart a sustainable, personalized path forward.
Accepting Where You Are
The toll long COVID takes on the body is exceeded only by the one it takes on the mind and spirit.
“Long COVID steals almost everything from you,” says Medinger, “including the things you used to love, like exercise, hobbies, or even just being social.” People who used to find pleasure and purpose in being active may have to find gentler, slower ways to nurture their well-being — particularly ways that offer an opportunity to turn inward.
“The frustration and anger you feel over huge amounts of your life having been stolen — you have to process that somehow,” he adds. “You can’t bottle it up, because that will result in your autonomic nervous system becoming even more highly strung. You have to release it if you want to open the door to getting better from a dysautonomic point of view.”
Meditation, vagus-nerve stimulation (via methods like cold therapy, breathwork, or electrical stimulation), yin yoga, tai chi, and qigong are all potent tools for mind–body healing and release.
Meditation, vagus-nerve stimulation (via methods like cold therapy, breathwork, or electrical stimulation), yin yoga, tai chi, and qigong are all potent tools for mind–body healing and release. “Our brains and our immune systems are connected,” says Calabrese. “They’re one organ. Recognizing this is empowering.”
“Healing starts with accepting where you are,” adds Evans. That might mean dialing way back and identifying the most rewarding, joyful, and fulfilling ways to use one’s newly limited energy.
“Long COVID prompted me to look at who I am and what’s meaningful to me on a fundamental level,” says Medinger. “There’s so much I can’t do, so I have to really focus on the things I still can engage with that matter to me.”
To be sure, no one would choose long COVID from life’s menu. But many who have been traveling its hard road do have hope to offer others.
“There are a bunch of people who felt that there would never be a silver lining and the torment would never end,” says Medinger. “For the people feeling that way now, know that there are others who felt like that who are now in a better place. The place you’re in right now is not necessarily permanent.”
Do’s and Don’ts of Exercising With Long COVID
A standard approach to graded exercise — walking one mile one week, two the next, etc. — isn’t likely to work for people with long COVID. “Pushing through ‘the wall’ is more detrimental for them than allowing the body to rest,” says Nisha Viswanathan, MD. She charts a gradual, tiered exercise-recovery process:
1. Minimal movement, keeping the heart rate below 100 bpm
2. Slowly increasing the duration of gentle activity, keeping the heart rate low
3. Building toward brief bursts (five to 10 minutes) of movement with higher heart rates
|Do keep movement minimal for two to four weeks following a COVID infection (or a period of lingering symptoms). “Give your body some time to let inflammation come down,” says Viswanathan. “If you have any crushing fatigue or shortness of breath, stop what you’re doing.”
Do ease back into movement slowly and gently, with five to 10 minutes at a time of stretching, light yoga, housework, or gardening. “The goal is that within an hour after that activity, you should not feel fatigued anymore,” she says.
|Don’t do too much too soon. Pushing through pain or fatigue is likely to do more harm than good.
Don’t get discouraged by setbacks. Progress toward recovery may be marked by periods of relapse. “If at any point in the three steps we see fatigue coming back, then we know we need to dial it back,” explains Viswanathan.
Progress isn’t always linear. But even when it’s two steps forward and one step back, focus on the forward motion. “I’ve seen a lot of improvement with this approach,” she says.
How to Pace Yourself After COVID
Pacing was developed in the late 1980s as a tool for patients with chronic fatigue syndrome. Now, many long-COVID patients struggling with fatigue are finding it useful. The goal is to allow for as much activity as possible while limiting the frequency and severity of relapses.
People with severe fatigue usually have good and bad days. Good days present the temptation to accomplish as much as possible to make up for lost time, but this often backfires and leads to a crash.
Pacing takes a different approach. “When you have a good day, you do more things than on a bad day, but you don’t push yourself to the limit,” explains Leonard Calabrese, DO.
You calibrate an “energy envelope” for the day, allocate it carefully, and make sure you keep some in reserve. “It’s almost an art form,” he adds. This careful balance of activity and rest helps to manage a damaged aerobic energy system.
Pacing also requires a reappraisal of what constitutes activity. Anything that takes effort, whether mental, physical, or even postural (such as being upright), comes out of the day’s energy budget. Reading, talking on the phone, attending a Zoom meeting — these all count as activities.
“With pacing, I tell people to find ways to savor the good days and do things that bring joy,” says Calabrese. “If this is successful, the good days get more frequent and the bad days get less frequent and less severe.”