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What Do We Know About COVID-19 (Coronavirus) Long Haulers With Chronic Disease?

It's still early in the COVID-19 epidemic to really say for certain whether people can have COVID-19 in a truly chronic manner. But it is silly to say that the process is mysterious or even puzzling. Within the huge patient base of COVID-19 sufferers around the world, a few patients are more than likely to have lingering symptoms. All disease processes follow a spectrum and clearly COVID-19 runs the gambit from asymptomatic to death. So a few people will likely fall into the "not dying and not fully well" spectrum. A few people of the millions who have been infected will mean thousands of individuals will suffer a more low grade, chronic form of the illness.  

Despite the clear likelihood of its occurrence, we're seeing a disturbing pattern of disbelief about chronic COVID-19. Laypeople are largely disbelieved by both medical personnel and their families. That disbelief leads to a lack of follow up and testing so that we can know if someone who continues to have symptoms can also continue to infect others. So chronic COVID-19 sufferers must protect others based on the possibility of passing on a disease no one believes they have, leading to further isolation and increased desperation.  

The only people who seem to be believed are medical professionals who demonstrate symptoms. But this cannot be the benchmark for chronic COVID-19. If a layperson has no positive test but exhibits symptoms in the short term, we assume they have COVID-19. A person is denied services, asked to quarantine, and treated as if they had tested positive. But at some point around/after two weeks of symptoms, that same person is considered to no longer have COVID-19? Suddenly the symptoms they are experiencing, which haven't changed, are now part of a picture of mental illness or just a stress response to the anxiety of the pandemic? 

Chronic COVID-19 sufferers are part of our new inconvenient truth about the world. We do not want to believe that COVID-19 can continue without ending. The story we are telling ourselves is that there will be an end, a vaccine at the end of the tunnel. Chronically ill COVID-19 patients who will not respond to a simple jab in the arm do not match our hope that things can someday return to normal. 


From the outset of the pandemic, chronic COVID-19 has been considered. "It has been reported by some patients that the symptoms may be phasic, with relatively asymptomatic spells interspersed among severely symptomatic periods" (quote taken from the International Working Consensus Paper). So having low-grade symptoms is a normal part of the disease spectrum. Even within the illest patients with COVID-19, "clinical evidence suggests that there are important phenotypic differences in their presentation." We cannot expect that all patients will respond the same to this virus. So there is no doubt that some patients might experience prolonged symptoms. The only question is whether or not they present a challenge to the mindset of the rest of the populace. "The mindset of providers, the public, and the families of victims is important during this crisis."

If we disregard the need to not have chronic COVID-19 sufferers for our communal mental health, then we can make some very specific claims about what it means to have COVID-19 over the long haul. The best information we have about symptoms is that: "No studies assessed combinations of different signs and symptoms and results were highly variable across studies. Most had very low sensitivity and high specificity; only six symptoms had a sensitivity of at least 50% in at least one study: cough, sore throat, fever, myalgia or arthralgia, fatigue, and headache. Of these, fever, myalgia or arthralgia, fatigue, and headache could be considered red flags (defined as having a positive likelihood ratio of at least 5) for COVID‐19 as their specificity was above 90%" So a person presenting with post-COVID exposure (this year) fever, muscle or joint pain, tiredness, and headache would be considered positive for the illness if they presented at a hospital. The same criteria should mean that we assume chronic COVID-19 illness in a previously healthy person. That assumption and exhaustive testing (nasal, antibody, and fecal as a baseline) should be the first response to a person presenting with possible chronic COVID-19. 

We also have a range of factors that seem to relate to the severity of the illness in the short term that may be helpful for chronic COVID-19 sufferers. (The following is summarized from the Consensus Paper on COVID-19)

COVID-19 is spread by both droplets and by oral-fecal (eating) exposure. It can be passed by asymptomatic carriers three days before they experience symptoms.

Viral load can increase the severity of COVID-19. More exposure means more viral load.

It attacks the body through the ACE2 receptor, which is most common in the lungs and gut.

With an average incubation of five days, a new exposure may show up twelve days later.

Preexisting conditions, such as asthma, chronic lung disease, cardiovascular disorders, history of smoking/vaping, or hemoglobinopathies, may be more likely to experience severe or even fatal COVID-19

More severe illness can include the appearance of a dysregulated immune response, with observed relatively higher leukocyte and neutrophil counts, elevated levels of alanine aminotransferase (ALT- a liver enzyme),  elevated levels of hemoglobin, and a high prevalence of hypokalemia (low potassium).

"COVID-19 mortality was significantly associated with vitamin D status in different populations...'we don't have randomised controlled trial evidence, but how long do you want to wait in the context of such a crisis?'"

While it may take a shift in perspective to allow us to fully see chronic COVID-19 sufferers for who they truly are, we do have a precedent group. After SARS, a small group of health workers in Canada presented with post-SARS syndrome, which bears a close resemblance to the current health issues of COVID-19 sufferers. These workers, all of whom had acute SARS, presented a year later with: "variable musculoskeletal pain, profound weakness, easy fatigability, shortness of breath that accompanied psychological distress and major sleep problems." They were compared to laypeople who had also had SARS. These also had symptoms: "at the one year mark some continued to describe problems with pain, reduced vitality, physical, mental, and social functioning." What's most disturbing about this study is that only 13% of those studied were asymptomatic, which means that those currently describing themselves as chronic COVID-19 "long haulers" may only be a tiny percentage of those continuing to suffer long term consequences of COVID-19. 

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