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<Reevaluating the Definition of Long Covid: Insights and Suggestions>

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In June 2024, the National Academies of Sciences, Engineering, and Medicine (NASEM), which represents the scientific community in the U.S., published a comprehensive 242-page report detailing expert consensus on long-Covid.

The NASEM report introduced a standardized definition of long-Covid, noting the inconsistencies across various guidelines (over ten distinct ones). To address this, the NASEM committee proposed a unified definition:

"Long COVID (LC) is an 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."

However, this definition raises important questions.

As a researcher from Malaysia with published work in this area, I affirm that long-Covid is a genuine post-viral condition, not merely psychological. Despite this, I, along with other professionals, believe that the current long-Covid definition could be refined. This article aims to highlight these areas for improvement.

The NASEM's definition closely resembles previous definitions. For example, the World Health Organization (WHO) characterizes long-Covid as "the continuation or emergence of new symptoms three months following the initial SARS-CoV-2 infection, with these symptoms persisting for at least two months without an alternative explanation."

The U.S. Centers for Disease Control and Prevention (CDC) has a more lenient stance, defining long-Covid as a chronic condition that arises post-SARS-CoV-2 infection and lasts for at least three months. Earlier, the CDC only required symptoms to persist for four weeks to be classified as long-Covid, but this definition was recently updated.

In a previous Medium article titled “The Problem with Long-COVID Research No One Talks About,” I argued that the current definition is overly ambiguous.

This ambiguity means that virtually any symptoms occurring after Covid-19 could be classified as long-Covid. For instance, both Bob, who experiences a mild headache, and Sarah, suffering from severe fatigue, could be categorized under long-Covid, provided these symptoms manifest post-infection. Indeed, both headaches and fatigue are recognized as long-Covid symptoms.

It is important to note that not all headaches are mild—some can be quite severe. However, headaches are common, occurring in approximately three out of four adults, with the majority being mild to moderate and resolving independently.

Even prior to the Covid-19 pandemic, many symptoms associated with long-Covid, such as headaches, fatigue, and cognitive fog, often lacked clear causes. These issues affected around 10-30% of the general populace even before the pandemic, becoming everyday complaints for many. Now, they are collectively referred to as long-Covid.

Dr. F. Perry Wilson, MD, MSCE, an associate professor at Yale University School of Medicine, has also addressed this concern in his Medium article “Long Covid Has an Inclusivity Problem.” He states:

“I want to help those suffering from long Covid as much as anyone. However, we face a significant issue. To put it simply, we are being overly inclusive. The first lesson you learn in disease epidemiology is the necessity of a clear case definition. Our current definition for long Covid is inadequate.”

Dr. Wilson emphasizes that the NASEM's long-Covid definition is so expansive that it may include individuals who do not genuinely have the condition. He elaborates:

“Basically, if you had COVID — and nearly everyone has by now — and experience any symptom, even one that fluctuates, for three months thereafter — it’s considered long Covid. They don’t even specify that the symptom needs to be new.”

For example, I experience bloating for reasons that are likely unrelated to Covid-19, possibly due to stress or dietary habits. Since bloating is listed as a potential long-Covid symptom by NASEM, if I tested positive for Covid-19, I could be classified as having long-Covid despite having experienced bloating since childhood without significant severity.

The current long-Covid definition leads to many individuals qualifying for the condition, likely inflating the prevalence and complicating resource allocation and our understanding of the disease.

Research on long-Covid may categorize both Bob (with a mild headache) and Sarah (with debilitating fatigue) as suffering from the same condition. However, it is evident that their experiences differ significantly. This is the crux of “The Problem with Long-COVID Research No One Talks About.”

As Dr. Wilson insightfully remarks,

“If everyone has long Covid, then no one truly does.”

Unfortunately, this nuanced understanding is not receiving the attention it deserves. Mainstream media often presents the NASEM report as the definitive solution to long-Covid, but this is misleading. The reality is far from a resolution—it may even exacerbate existing issues.

A more effective long-Covid definition should take into account the severity of symptoms, especially those that significantly disrupt daily activities.

For example, Bob’s post-Covid headaches could be classified as long-Covid if they are severe enough to impair his focus. Conversely, if his headaches are mild and sporadic, they should not be equated with Sarah’s severe fatigue.

Additionally, long-Covid symptoms should ideally be newly developed or aggravated post-Covid-19 and not attributable to other factors.

For instance, if Bob has recently relocated for work after recovering from Covid-19, his headaches might be primarily stress-related rather than long-Covid symptoms.

Therefore, a more precise long-Covid definition could be:

Long-Covid is a chronic condition that occurs post-SARS-CoV-2 infection, characterized by symptoms lasting at least three months that significantly disrupt daily activities and cannot be explained by other causes.

That said, I acknowledge that my perspective may be biased, as I am just one individual among many. While I do not represent a panel of experts like NASEM, I hope this article sparks reflection on the future of long-Covid definitions. I welcome your thoughts in the comments.

Thank you for taking the time to read this. If you found this insightful, consider subscribing to my Medium email list. Any contributions you wish to make would be greatly appreciated, as they support my work.

Explore my other Medium articles on long-Covid here:

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<h2>Long-COVID: What's Still Relevant</h2>

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<div><p>shinjieyong.medium.com</p></div>

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