Long COVID Creating Long-term Complications
The latest research, signs to look for and ways to help the millions of 'long haulers'
An August 2024 review article published in Nature Medicine showed 400 million individuals around the world have been diagnosed with long COVID at a cost of nearly $1 trillion to the global economy. That's according to Ziyad Al-Aly, M.D., director of the Clinical Epidemiology Center and the chief of research and education service at Veterans Affairs St. Louis Health Care System. In the review, Al-Aly and his colleagues highlight the complexities of long COVID, including ongoing health effects, challenges around study data, impacts across society and vital recommendations for individuals.
The National Academies of Sciences, Engineering and Medicine describes long COVID as "[A]n infection-associated chronic condition (IACC) that occurs after SARS-CoV-2 infection and is present for at least 3 months as a continuous, relapsing and remitting, or progressive disease state that affects one or more organ systems." The definition of this public health crisis is expected to evolve. What's important to know is that the only way to get long COVID is to become infected with COVID-19 in the first place.
In a Zoom interview with Al-Aly, he explained the most common ailments of "long haulers" — the term for those with long COVID —are:
Neurological Issues: Problems with memory, "brain fog" or dizziness are several examples. In fact, neuroimaging studies performed on humans after 10 months of recovering from mild-to-moderate COVID-19 infection showed significant changes in cerebral white matter and increases in inflammation, representing more than seven years of healthy aging.
"I was in the best shape of my life before getting COVID. Afterward, I couldn't breathe when tying my shoes."
Chronic Fatigue and/or Post-Exertion Malaise (PEM): These issues include sleeping without waking feeling refreshed, or the reverse with insomnia. PEM happens when people exert themselves for a short time, such as taking the dog for a walk or making a meal for the family, activities that people required little effort to complete before having COVID-19 but now result in a physical "crash" for hours or days until feeling recuperated. Al-Aly explains, "When we looked back at the trigger in these cases, individuals did nothing exhaustive. Mild exertion put them over the edge." Without a better explanation than long COVID, patients are often diagnosed with a condition known as ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
POTS: POTS, aka dysautonomia, stands for postural orthostatic tachycardia syndrome. It manifests itself with a quickened heart rate and changes in blood pressure and can also present with gastrointestinal issues. In a Cedars-Sinai Health System study, patients were five times more likely to develop this cardiac condition after testing positive for COVID-19. According to a January 2024 Cedars-Sinai statement, Debbie L. Teodorescu, M.D., a cardiology fellow at the Smidt Heart Institute, stated, "COVID-19 infection itself seems to be either causing or unmasking a startling amount of POTS or POTS-like conditions globally."
Teodorescu added, "In our cohort, most patients responded well to treatment, but a subsequent COVID-19 infection tended to bring significant setbacks in recovery, which is why we urge all patients to be meticulous about avoiding COVID-19."
Early Symptoms to Watch For
The Centers for Disease Control and Prevention (CDC) estimates 25% of adults with long COVID experience serious symptoms affecting daily living and that 1 million U.S. adults miss work at any given time. As a result, long COVID is now a recognized disability under the Americans with Disabilities Act (ADA). Yet, many people, including health care professionals, continue to question the legitimacy of long COVID.
Many long-haulers say they dismissed early signs of long COVID — such as headaches, shortness of breath or swollen lymph nodes — because new symptoms didn't necessarily start as soon as they were clear of COVID-19.
"I was in the best shape of my life before getting COVID," says Rob Shankland, 64, of Filmore, Illinois. "Afterward, I couldn't breathe when tying my shoes."
"There are many people who invisibly suffer because they can't get help or people don't understand."
Shankland knew something was very wrong when his energy got so low he wasn't able to get out of bed for days. As a lifelong pilot, Shankland underwent physical examinations every six months for years to maintain his license — with excellent health results. But when he went to his doctor in early 2021 after testing positive for COVID-19, a heart monitor revealed abnormal heart fluctuations requiring him to take medication for several years.
Vivian, a long hauler from North Carolina, says, "There are many people who invisibly suffer because they can't get help or people don't understand. That adds insult to injury when people outright deny or question long COVID." At 54, Vivian (who spoke on anonymity) is an accomplished attorney, healthy by all measures, vaccinated and boosted, so when she caught COVID-19 on an international trip in late 2023, she assumed taking the anti-viral Paxlovid and resting would help restore her back to baseline.
Unfortunately, that wasn't the case. "Once the illness passed, cognitive issues and effort worsened my physical condition, which didn't make any sense to me. The mental exertion exacerbated symptoms, and I started noticing serious mistakes at work," she says.
Vivian has been on and off disability due to the gravity of her issues. After seeking expertise at a long COVID clinic in California, she was diagnosed with a number of disorders, including POTS and ME/CFS.
Who's at Risk?
All people — regardless of, age, class, or health status — are at risk for long COVID if they have been infected with SARS-CoV-2. In the United States alone, long COVID has disrupted the lives of more than 22 million Americans.
"Long COVID seems to go after a person's vulnerabilities."
According to a CDC spokesperson, "The CDC continues to collaborate with clinicians, public health partners, academic institutions and other federal agencies to better understand the impacts of long COVID." Additionally, "Long COVID occurs more often in people who had severe COVID-19 illness but can occur in anyone who has been infected or reinfected with SARS-CoV-2, including children.
Delainne Bond, RN, principal consultant at ProMedView, supports, coaches and helps "long haulers" manage the debilitating symptoms and stresses the importance of seeking support sooner than later for those who are not feeling 100% healthy soon after having COVID-19.
"Through 12 weeks," she says, "this is our opportunity to get things under control. If you're having symptoms post this time, it's hard to sort it out." In Bond's experience working with clients with underlying conditions, "Long COVID seems to go after a person's vulnerabilities."
Studying Long COVID
Since the start of the coronavirus pandemic in early 2020, Al-Aly says researchers have learned much about the lingering effects. "At this point," he says, "we have associated more than 200 symptoms to long COVID, lasting months to years." However, it's not enough to understand the consequences, but learn why long-term effects happen. "We need to think about the total time we've known about long COVID — it would be like a kindergartner," he says.
Clinton Wright, M.D., associate director for the National Institute of Neurological Disorders and Stroke (NINDS) and director of the Division of Clinical Research, explains, "If we define long COVID as symptoms that persist for a certain amount of time after infection, the severity of the infection probably has something to do with it."
"We need to think about the total time we've known about long COVID — it would be like a kindergartner."
In addition to the severity of symptoms, other areas continue to be explored through the RECOVER initiative, including new variants popping up, especially with the latest summer wave of COVID-19, rebound COVID-19, and whether SARS-CoV-2 is triggering dormant viruses as well as underlying conditions. In both Shankland and Vivian's cases, they each had Lyme disease in the past, and Shankland also had contracted SARS years earlier.
Another study Wright discussed focused on Paxlovid and whether increasing the length of time patients take it further reduces initial COVID-19 symptoms and the chances of having long COVID. Governmental agencies such as the CDC and the National Institutes of Health (NIH), through RECOVER, continue leading observational studies and clinical trials across all age groups to determine the root causes of long COVID and ways to eradicate it.
Notably, while most studies use adult cohorts ages 18+, NIH recently released findings on the impacts of long COVID on children and adolescents. The findings show children present more with headaches while adolescents feel more tired.
Finding Support and Prevention Resources
The good news is that most people recover after having a COVID-19 infection, and more frequently since the first variants appeared. However, the numbers are less favorable for the millions who go on to have long COVID. And finding physicians educated on the long-term effects of COVID-19 can be problematic.
For those whose primary care doctor is not familiar with long COVID, Wright suggests long haulers visit dedicated long COVID treatment centers since they can test and deal with the range of symptoms affecting all areas of the body. Alternatively, they can consider getting involved in clinical trials or participating in other studies.
Recognizing everyone is unique, Bond has found alternative medicine as well as the "antis" to provide relief, including anticoagulants, anti-inflammatories, antihistamines and sometimes antidepressants, depending on the specific issues patients may be experiencing.
Al-Aly, Wright and the CDC all reinforced the COVID-19 vaccination is the most effective tool to help prevent long COVID, with research showing vaccination reduces the risk of developing long COVID. Furthermore, the CDC recommends everyone ages 6 months and older get the updated 2024-2025 COVID-19 vaccine when available. Those who are eligible for an anti-viral medication should also be aware there is some evidence indicating its use within five days of symptoms beginning may reduce the risk of developing long COVID as well.
Long haulers can find a myriad of resources and support ranging from mental health therapy to long COVID health care support groups, as well as social media. Bond leads a popular Facebook COVID-19 Long Haulers Support group. With more than 100,000 members, this community forum offers peer advice, personal solutions and clinical information, all focused on recovery of long COVID.
Because people become infected with COVID-19 through airborne particles or droplets of respiratory fluid while simply breathing, the United States Environmental Protection Agency (EPA) provided guidance as recently as May 2024 as protection. These steps include increasing ventilation with outdoor air and air filtration; maintaining a 6-foot distance from others because particles can remain in the air for hours after an infected person has left the area; and wearing masks.
While not referenced by the EPA, not all masks are created equal. Be sure to purchase well-fitting N95 quality masks for the most protection. With the majority of Americans appearing to "be over" masking, Al-Aly says, "Masking strategically in high-risk places such as public transport and crowded indoor places all help minimize risks."
