The loss of life is not the only consequence of the COVID-19 pandemic; we must also focus on the individuals who continue to suffer from its aftermath, known as Long COVID. Dr. Akiko Iwasaki emphasizes that “millions are enduring the severe effects of Long COVID.” This article is inspired by her recent lecture at the FNIH.

The current state of affairs is a result of poor decisions made by various stakeholders. Instead of eradicating the virus, many Western nations adopted the misguided approach of ‘coexisting with the virus,’ which has led to people enduring the disease for years. This is not a sustainable way to live.

We have neglected Long COVID patients by allowing this situation to develop and even more so by failing to take their condition seriously. They have been enduring these symptoms for over a year and deserve to be heard.

Recognizing Chronic Illness

A significant issue is the societal indifference toward chronic illnesses. Even healthcare providers often misdiagnose or overlook chronic conditions, particularly those with vague symptoms like chronic fatigue. The general public tends to dismiss fatigue as mere tiredness, suggesting rest as a remedy. However, when something as simple as standing in the shower becomes impossible for months, it’s clear something serious is at play. One doctor shared:

> “A patient expressed: ‘Dr. Ely, I wish my hand was amputated so that people could recognize my suffering. Instead, they see me and think I’m fine, but I’m deeply affected by Long COVID, and this perception exacerbates my distress.’”

For many chronic conditions, the typical advice is to wait, lose weight, or simply go away. Unfortunately, these diseases do not just vanish; we are essentially telling suffering individuals to disappear.

Moreover, the unfamiliarity and rarity of certain diseases can lead us to perceive them as non-existent. Conditions like Long COVID fit into this category. While we may not be accustomed to the idea of prolonged symptoms following infections like the flu or common cold, Iwasaki points out that long-term effects of various infections have been documented for quite some time.

Many of these conditions are categorized as neglected tropical diseases, thus falling under the broader umbrella of chronic illnesses that receive little attention. This lack of recognition is unfortunate as the symptoms can be extremely debilitating.

Long COVID: A Significant Issue

Long COVID is a recognized concern within the broader landscape of post-infection syndromes. With COVID-19 being a global issue, it has transformed into a widespread problem rather than one limited to tropical regions. The clinical definitions of Long COVID can differ, and not all cases are documented. Iwasaki notes that a “significant percentage” of affected individuals are not being accounted for.

Reports from the US and UK indicate alarming statistics, suggesting that around 5 million people in the U.S. alone are grappling with Long COVID, representing at least 14% of reported cases in the UK. While these figures are staggering, it is crucial to approach them as real people enduring serious health challenges rather than mere statistics. The ultimate goal should have been to eliminate COVID, as seen in China, rather than compromising lives as we currently are.

The Reality of Long COVID

The impact of Long COVID is profound. Among those who suffered severe COVID-19, approximately 50-70% experience recurring symptoms for months. These symptoms can include fibrosis, tissue damage, and organ dysfunction—serious consequences that cannot be ignored. Even individuals who had ‘mild’ cases of COVID-19 report ongoing health issues, affecting 10-30% of those who were previously asymptomatic.

Experiencing symptoms such as fatigue and cognitive difficulties can severely disrupt everyday life. The term “brain fog” may seem trivial, but it signifies a significant impairment in cognitive function. One survivor articulated this struggle, stating:

> “Brain fog is frustrating; I’ve been experiencing it since contracting COVID, and it’s worsening. My mind feels clouded, and I forget how to perform even the simplest tasks, which is frightening.”

The term “fog” fails to adequately describe the reality of this condition, as expressed by survivor Michael A. Osborne.

It is essential to focus not just on numbers, but on the human aspect of this crisis. We are dealing with individuals facing the long-term repercussions of a preventable disease. If this were happening to you, it would be taken seriously; we must extend that same level of seriousness to others.

Long COVID and Its Disproportionate Impact on Women

Similar to broader societal trends, Long COVID appears to affect women more severely. Studies indicate that women are seven times more likely to experience breathlessness compared to men, highlighting the potential for underreporting and underdiagnosing due to societal biases regarding women’s pain.

Potential Mechanisms Behind Long COVID

Iwasaki suggests that some individuals with Long COVID may have failed to eliminate the virus entirely, leading to ongoing health problems. This raises concerns about the possibility of the virus remaining dormant and undetected, allowing it to mutate and cause further issues. Symptoms such as loss of smell and gastrointestinal disturbances could indicate areas where the virus might be hiding.

> “We know that long-haulers have no detectable levels in their nasal passages or saliva. However, remnants of the virus could still exist in various tissues, potentially leading to chronic inflammation and long-term symptoms,” Iwasaki noted.

This means that the presence of ongoing health issues in multiple organ systems could suggest that the virus is lingering within those organs. Research involving intestinal biopsies has revealed that, after three months, some patients tested positive for the virus, highlighting the need for further investigation.

Iwasaki describes this as the potential for having a “viral reservoir” or “viral ghost,” a metaphor that is both poignant and alarming. This scenario poses significant public health implications as it suggests the virus could continue to evolve within individuals.

Long COVID's Impact on the Immune System

The body’s response to foreign substances, such as peanuts, can resemble a fierce battle, leading to symptoms akin to autoimmune disorders. In Long COVID patients, the immune response may persist even after the virus is cleared, resulting in continuous attacks on healthy tissues.

Research has identified the presence of autoantibodies in Long COVID patients, with some studies showing elevated levels of T-cells that do not decline as they would in healthy individuals. While we cannot generalize findings from these studies, there is compelling evidence that something significant is occurring. Long COVID is not a figment of imagination; measurable physiological changes are evident.

Despite our lack of understanding regarding the precise pathology of Long COVID, we can confidently assert that it is a genuine and serious condition.

Long COVID's Duration

According to Iwasaki, while severe Long COVID symptoms may lessen over time, moderate symptoms can plateau, and mild symptoms may even worsen. It is essential to clarify that ‘moderate’ and ‘mild’ are clinical terms with different implications than those typically understood in everyday language. As one survivor noted, what was termed a ‘mild’ COVID case has resulted in debilitating consequences.

The Path Toward Treatment

For those grappling with Long COVID, it’s crucial to acknowledge the complexity of this condition. It encompasses a range of symptoms affecting various organs, and responses to treatment can vary significantly among individuals. However, some treatments have shown promise, though they may not work for everyone.

In a survey conducted by the patient group Long COVID SOS, over 60% of vaccinated individuals reported improvements in their symptoms. This finding underscores the importance of listening to patients, as Iwasaki emphasizes that “patients are the experts in their disease.”

Recent studies have suggested that vaccination could significantly enhance the likelihood of symptom remission for Long COVID patients. The mechanisms behind this effect may involve clearing lingering viral remnants or rebooting the immune system, albeit temporarily. However, some individuals report a recurrence of symptoms after initial improvement.

Researchers, including Iwasaki, are committed to understanding the molecular basis of Long COVID to better target treatments for specific patient profiles. They are collaborating closely with patients, recognizing their invaluable insights in this effort.

Ultimately, those suffering from Long COVID are individuals who have borne the brunt of misguided public health strategies. They now face the daunting challenge of living with a virus and an immune system that is not functioning as it should. As we continue to learn about Long COVID, it is vital that we prioritize the voices of survivors and approach this issue with the seriousness it deserves.

In summary, we must listen to the experiences of Long COVID patients and acknowledge the reality of their suffering.

1. Watch the lecture and follow Dr. Iwasaki on Twitter.
2. Subscribe to my newsletter. It focuses on various topics, including science and public health.