Chapter 1: The Reality of Long COVID

The lingering effects of COVID-19 can last for months, leaving survivors grappling with debilitating symptoms and skepticism from both medical professionals and friends.

By Ed Yong

For Vonny LeClerc, the onset of illness began on March 16. Just after stringent social-distancing measures were introduced in the UK, she returned home feeling unwell. In the days that followed, she experienced a range of symptoms, including a persistent cough, chest pain, and joint aches. Though she initially seemed to improve, by day 12, her symptoms worsened again, accompanied by a fever and loss of taste and smell.

When I spoke with LeClerc on day 66 of her ordeal, she described her condition: "I used to be a healthy 32-year-old, but now I can’t even stand in the shower without feeling exhausted. A trip to the supermarket leaves me bedridden for days. This is unlike anything I've ever faced." Despite multiple attempts, she has yet to receive a COVID-19 test. However, she insists that every doctor she consulted believes her symptoms are undeniably linked to the virus. Today marks day 80 of her symptoms.

COVID-19 has only been around for a few months, yet it is easy to overlook how much remains unknown about its long-term effects. Generally, it is accepted that a small percentage of those infected—usually older adults or individuals with pre-existing conditions—experience severe illness requiring hospitalization. The World Health Organization states that approximately 80% of cases are mild or asymptomatic, with recovery typically occurring within two weeks. However, thousands of individuals like LeClerc are participating in support groups where they share their experiences of ongoing symptoms lasting weeks or even months. Some refer to themselves as "long-haulers."

I spoke with nine of these long-haulers who share common experiences. Most have not required intensive care or ventilation, yet their lives have been profoundly affected by continuous and fluctuating symptoms that impair concentration, physical activity, and daily tasks. Many are younger and were previously healthy. "Relative to severe cases, mine might be classified as mild, but this virus has devastated my life," LeClerc explained. "Even simple pleasures like reading are exhausting. Activities that others find enjoyable—like yoga or baking—are simply out of reach for me."

As the world focuses on the pandemic, those suffering from long COVID often feel invisible and excluded from the narrative that dominates discussions about the virus. While statistics on confirmed cases, hospitalizations, and recoveries are readily available, individuals like LeClerc find themselves in a statistical void, unrecorded and overlooked.

Some have received diagnoses through testing, while others, like LeClerc, have been told by their healthcare providers that they likely had COVID-19. Many long-haulers face disbelief from friends and family who struggle to understand how someone can be sick for so long without being classified as severely ill. Chloe Kaplan from Washington, D.C., who is currently on day 78, shared, "People seem unaware of the reality of feeling unwell for weeks without being on a ventilator or in critical condition."

The prevailing belief that most cases are mild contributes to the misconception that only the vulnerable need to take precautions, leading many to assume that exposure to the virus is not a significant risk. Felicity Callard, a geographer at the University of Glasgow, who is on day 77, noted that this perspective fosters a notion that "not hiding" from the virus is a reasonable approach. As discussions of a potential second wave emerge, long-haulers still grappling with the consequences of the initial outbreak express frustration. Hannah Davis, an artist from New York City, currently on day 71, voiced her concern over friends and family who dismiss the seriousness of COVID-19, believing the only outcomes are mild cases or death.

"It has been an experience unlike any other," Paul Garner, an infectious disease expert at the Liverpool School of Tropical Medicine, said, reflecting on his condition on day 77. Despite testing negative on day 63, Garner was certain he had contracted the virus, having waited to be tested out of concern for preserving resources for healthcare workers. "I knew I had the illness; it couldn’t have been anything else," he stated. Garner, like many long-haulers, is uncertain why his symptoms persist. "I honestly don't know," he admitted. "I can’t comprehend what is happening in my body."

On March 17, just a day after LeClerc's symptoms began, Fiona Lowenstein was hospitalized due to the virus. After her discharge, she founded a Slack support group for those suffering from long COVID, affiliated with her wellness organization, Body Politic. This group has become a refuge for many long-haulers, with one channel for individuals experiencing symptoms for over 30 days boasting over 3,700 members.

"The group has been a lifesaver for me," said Gina Assaf, a design consultant in Washington, D.C., who is now on day 77. With other members skilled in research and survey design, they have surveyed 640 individuals from the Body Politic group and beyond. Although their findings are not representative or peer-reviewed, they offer valuable insights into the long-hauler experience.

Approximately 60% of those surveyed are between the ages of 30 and 49. Around 56% had not been hospitalized, while 38% visited the ER but were not admitted. About a quarter tested positive for COVID-19, and nearly half were never tested. Some fell ill in mid-March when testing was scarce. Angela Meriquez Vázquez, an activist in Los Angeles, experienced gastrointestinal issues and loss of smell but did not meet the testing criteria due to the absence of a cough or high fever. By the time the criteria were adjusted, she was on day 14. Despite testing negative, she continues to experience symptoms associated with the virus.

The Body Politic survey indicates that a quarter of respondents received negative test results. However, this does not negate the possibility of COVID-19 infection, as diagnostic tests for SARS-CoV-2 can miss infections up to 30% of the time. False negatives become increasingly likely a week after the onset of symptoms. In the survey, those with negative tests reported similar symptoms to those with positive results, suggesting that their experiences are indeed related to the same virus.

While it is now clear that COVID-19 can affect various organs, many initial perceptions centered around respiratory issues. The CDC has only officially recognized loss of taste or smell as a neurological symptom, but survey respondents report a range of cognitive issues, including "brain fog," memory loss, and even hallucinations. Symptoms can vary dramatically, with some experiencing episodes of breathlessness despite normal oxygen levels or sensations akin to heart attacks without clear EKG or X-ray findings.

The reasons behind these persistent symptoms remain elusive. Akiko Iwasaki, an immunologist at Yale, proposes three potential explanations: long-haulers might harbor residual virus in organs that traditional tests miss, fragments of viral genes could provoke an immune response, or the immune system may remain in an overactive state after the virus has cleared. Distinguishing between these theories is complicated, given the novelty of SARS-CoV-2 and the limited understanding of post-viral symptoms.

There is a historical precedent for chronic symptoms following infectious outbreaks. For example, many survivors of Ebola experience long-lasting complications. The large-scale COVID-19 pandemic has resulted in sufficient numbers of long-haulers to advocate for their experiences and needs.

As the pandemic progresses, long-haulers navigate a landscape marked by uncertainty. If symptoms persist beyond two weeks, how long might recovery take? If symptoms deviate from the recognized list, which are significant? "I'm hyper-aware of my body's signals throughout the day," LeClerc noted, reflecting on how her experience has diminished her sense of normalcy.

Questions about contagion also linger for those still symptomatic. Garner believes he no longer poses a risk, but Meg Hamilton, a nursing student in Maryland, found her local health department's guidelines on contagiousness confusing. Meanwhile, Davis and her partner faced the dilemma of reuniting after two months apart due to the risks associated with lingering symptoms.

The pandemic's isolation has been challenging for many, but for long-haulers, it exacerbates their cognitive fog, fatigue, and anxiety about unpredictable symptoms. "It plays with your mind," Garner said. Some long-haulers grapple with feelings of guilt over their incapacitation despite their cases being classified as "mild." Hamilton worried excessively about the accuracy of her thermometer, convinced that acknowledging her illness meant she was mentally weak.

Communicating their experiences poses its own challenges. Initially, Hamilton withheld her illness from her parents to avoid worrying them, assuming she would soon recover. But as weeks turned into months, she felt guilty for not being truthful. LeClerc echoed similar sentiments, noting that friends struggle to respond when symptoms fluctuate instead of improving. "People don’t know how to react when the answer isn’t a simple 'yes' or 'no,'" she explained.

Long-haulers often encounter skepticism from healthcare professionals as well. Davis recounted describing her cognitive issues to a neurologist, who attributed them to ADHD. "It’s terrifying to seek help from those who don’t grasp your reality," she said. Vázquez faced repeated assertions from her doctors that her symptoms were merely panic attacks, despite her understanding of her own body.

Athena Akrami, a neuroscience professor, encountered doctors who suggested she was stressed, while a colleague advised her to take antidepressants. "I'm usually calm, and something is clearly wrong," she stated. "As a scientist, I understand the unknowns of this virus, but as a patient, I seek acknowledgment." Each day feels like navigating a dark tunnel for her.

While many healthcare workers are also under immense pressure from the pandemic, the historical issue of medical gaslighting persists. This phenomenon often leads to patients’ suffering being minimized, particularly for women, who may be deemed less credible witnesses to their own experiences. Garner's candid portrayal of his symptoms garnered validation, as Callard noted, "His authority as a male professor lends weight to his words in ways that others may not receive."

Ramey, a musician and author, resonates with long-haulers through her own experiences chronicling her struggle with debilitating conditions. She observes that living with such illnesses mirrors the isolation and economic insecurity many face during the pandemic. "The illness itself is harrowing, but being disbelieved repeatedly is the most painful aspect," she reflected.

Formally diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and complex regional pain syndrome, Ramey also identifies as part of a group she calls WOMIs—women with mysterious illnesses. These conditions disproportionately affect women and often remain misunderstood and underfunded. The Institute of Medicine estimates that between 836,000 and 2.5 million people in the U.S. suffer from ME/CFS, with a staggering 84-91% undiagnosed.

The potential rise of ME/CFS post-pandemic is concerning, as previous infectious outbreaks have led to similar patterns of chronic illness. Studies reveal that a notable percentage of individuals recovering from viral infections experience prolonged fatigue. Ramey emphasizes, "With COVID-19 spreading globally, it would be unusual not to see a significant rise in ME/CFS cases."

Although ME/CFS is typically diagnosed when symptoms persist for six months or longer, the new coronavirus has not been around long enough for a definitive diagnosis. Still, many long-haulers report symptoms aligning with those experienced by ME/CFS patients. They often find that exertion triggers a post-exertional malaise, a hallmark of ME/CFS that results in severe fatigue following even minor activities. Garner learned this the hard way when he returned to intense workouts too soon, landing him back in bed for days.

The plight of ME/CFS patients has long been dismissed, but the pandemic may prompt much-needed attention to chronic illnesses. Research into the experiences of COVID-19 patients could lead to greater understanding of ME/CFS and similar conditions. Brea expresses hope for increased research efforts, while also mourning the years lost to studying these diseases.

While some long-haulers will eventually recover, the journey is fraught with uncertainty. The Body Politic Slack group features a victories channel where members share their progress. However, recovery remains a tenuous process, with good days intertwined with challenging ones. "It’s a slow upward trajectory; I gauge my progress in weeks, not days," Vázquez explained. While the Johns Hopkins dashboard shows millions have "recovered," recovery is rarely straightforward. Some may face lasting damage from the virus, while others will be diagnosed with chronic fatigue syndromes.

As the pandemic unfolds, the number of individuals experiencing long-term disabilities is likely to rise. "Science fiction narratives have misled us into believing in a future without disability," states Ashley Shew, who studies the intersections of technology and disability. "Given the environmental crises and new viruses we face, we should prepare for an increase in diverse disabilities."

In the 1950s, polio left many young people permanently disabled, leading to the rise of the disability rights movement. The current pandemic may similarly galvanize a new generation of advocates who push for a better understanding of chronic diseases and a recognition of the nuanced reality of health and illness. It highlights the importance of listening to patients' experiences and acknowledging that survival is a multifaceted journey.

Chapter 2: Understanding Long COVID

The persistent effects of COVID-19 are increasingly recognized, but many questions remain regarding their nature and treatment.

The first video, "Understanding Long COVID: What Every Patient Needs to Know," delves into the complexities of long-term symptoms following COVID-19.

Chapter 3: Long-Term Effects of COVID-19

The lasting repercussions of COVID-19 on various systems of the body are becoming clearer.

The second video, "Long-Term Effects of COVID-19," explores the ongoing challenges faced by individuals recovering from the virus.