We need to start thinking more critically about long Covid

A A newspaper columnist contacted me some time ago after noticing some of my tweets. As a pulmonary and intensive care doctor, I had insisted that researchers and journalists should speak with more caution about a still mysterious disease that would come to be known as Long Covid.

The columnist was curious if other medical professionals shared my skepticism about the narrative emerging in the reports. “I ask as much as a person as as a journalist,” this correspondent shared with me, “because I am more terrified of this syndrome than of death.”

It is not an isolated perspective. What the media is saying about Long Covid and the people who say they are long haul describe is frightening. Ed Yong, writer for The Atlantic, was particularly influential in sculpting this story. In “Long-haul redefines Covid-19He describes a mysterious syndrome that strikes even people with mild Covid-19, people who have never needed hospitalization, oxygen or ventilators, but who never seem to recover.

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One of those people, he noted, described five months of “extreme fatigue, bulging veins, excessive bruising, irregular heartbeat, short-term memory loss, gynecological problems, tenderness. to light and sound and brain fog.

For some of these people, Yong noted, “months of illness could turn into years of disability.” A Recent first opinion also asked if long Covid-19 carriers “could become lifelong carriers”.

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Reports like these are concerning, but I’m also concerned that the narrative of a new chronic disease caused by a mild infection with SARS-CoV-2, the virus that causes Covid-19, may be ahead of the evidence.

Long Covid does not have a universal definition. Rather, it is often used as a catch-all to describe people whose symptoms last more than a few weeks or months after the onset of Covid-19. The fact that many people experience prolonged symptoms after infection with SARS-CoV-2 shouldn’t be surprising, however. After all, serious illness, whatever the cause, can be devastating.

Almost everyone who dies from Covid-19 develops a disease called acute respiratory distress syndrome (ARDS), a form of pneumonia involving severe inflammation of both lungs. Numerous studies have shown that for some people, ARDS can have a myriad of long-term effects, including physical and cognitive impairments, reduced lung function, mental health issues, and reduced quality of life. A 1999 study found that even patients with milder forms of pneumonia can have symptoms that persist During months.

Additionally, lung failure can precipitate the failure of other organs, such as the kidneys and heart, and can sometimes require rehabilitation and specialist care for months or even years. Infection with SARS-CoV-2 can also (although rarely) inflict permanent damage to other organs, including severe myocarditis (inflammation of the heart muscle leading to heart failure) and stroke, in the absence of significant lung disease.

Yet even though these ailments are sometimes acknowledged in media reports on the long Covid, most accounts point to something entirely different: a debilitating syndrome apparently affecting multiple organ systems for months – and perhaps indefinitely – but without specific diagnosis like myocarditis or stroke. It’s also noteworthy that reports often suggest that even those with only mild acute symptoms – or no acute symptoms – Are at risk.

Symptoms of this disease are often, if not primarily, non-respiratory in nature, and those most affected appear to be relatively young, while those most susceptible to severe acute Covid-19 are, on average, older and sicker. .

A BuzzFeed Title captured this demographic divergence: “Covid makes younger, healthy people debilitatingly sick for months. Now they are fighting to be recognized. In this story, The Long Haul described a complex of relentless chronic symptoms, including palpitations, headaches, severe fatigue, difficulty sleeping, hair loss and brain fog.

Other reports describe something even more frightening. In October, a New York Times article describes a dementia-like illness following a mild infection like this: “Now it’s called Covid Brain Fog: Disturbing cognitive symptoms that can include memory loss, confusion, difficulty concentrating, dizziness, and comprehension of common words. days.” Again history claimed that a mild, fully resolved infection could cause severe psychosis months later, even leading to thoughts of murder.

Long-term Covid reporting needs to be more careful for several reasons.

First, consider that at least some people who identify as having Covid for a long time appear to have never been infected with the SARS-CoV-2 virus. In Yong’s influential article, he cites a long-haul Covid investigation in which around two-thirds of them had negative anti-coronavirus antibody tests – blood tests revealing a previous infection with SARS-CoV-2. Meanwhile, a survey organized by a group of long self-identified Covid patients who recruited participants from online support groups reported in late December 2020 that around two-thirds of those surveyed had undergone blood tests. reported negative results.

True, while blood tests are reported as sensitive and specific, they are imperfect and can give both false positives and false negatives. And there is some evidence that antibodies can decrease over time. But only to a certain extent: to study after to study at found this antibodies remain positive in the majority of people with confirmed infections for several months. It is therefore very likely that some or more long-haul carriers who have never been diagnosed using PCR tests in the acute phase and who also have negative antibody tests are “true negatives”.

Why is this important? On the one hand, if a certain proportion of patients with long-standing Covid have never been infected with SARS-COV-2, this shows that it is possible for anyone to wrongly attribute chronic symptoms to this. virus. This is not particularly surprising, as the symptoms of acute SARS-CoV-2 are often not unique and can be caused by other respiratory infections. But what is more remarkable is that the survey at the end of December also found virtually no difference in the burden of long-term symptoms between those with and without evidence of antibodies from a previous SARS infection- CoV-2 (or any positive test), which reduces the likelihood of a causative role for SARS-CoV-2 as the primary driver of chronic symptoms in this cohort.

After all, the symptoms reported to be consistent with a long Covid are associated with many conditions. Gastrointestinal symptoms, confusion and forgetfulness (“brain fog”), severe fatigue, hair loss and headache are surprisingly common, even in the general population. Unfortunately, physical suffering is widespread in our society.

Add to this the fact that the past year has produced skyrocketing levels social anguish and mental emotional distress. Asking a potential link between psychological suffering and physical symptoms is sometimes derided as medical gas. But there is no doubt that mental suffering can produce physical suffering. A New England Journal of Medicine report showed that, on several continents, about half of people with depression also had unexplained physical symptoms, which often outweighed their mental symptoms. Sleep problems, physical and mental slowing down, persistent fatigue and problems concentrating (or “brain fog”) are among the Criteria for major depression in the current Diagnostic and Statistical Manual of Mental Disorders (DSM-V).

The sad truth is that we are living in a time of incredible trauma, grief and hardship. The relatives of more than 500,000 Americans who have died from Covid-19 are in mourning. Tens of millions of people have lost their jobs. It was a period of prolonged social isolation with no obvious parallel in history. We should Expect a surge in mental angst and physical suffering which, while linked to the once-in-a-century pandemic, will not always be directly linked to SARS-COV-2 itself.

But make no mistake: the suffering described by long Covid patients is debilitating and real. There will be, as is often the case, a lack of clarity on the distinct cause of suffering in each individual; there can often be multiple causes, ranging from virological to psychosocial. It goes without saying that each of these patients deserves a careful and empathetic assessment, as well as appropriate treatment and referrals.

More generally, policies aimed at stemming the psychosocial suffering resulting from the trauma of the pandemic are necessary. And rigorous research into the long-term effects of Covid-19 must continue.

But at the same time, we need to start thinking more critically – and speaking a little more carefully – about the long Covid.

Adam Gaffney is a pulmonary and critical care physician at the Cambridge Health Alliance in Cambridge, Massachusetts, and an assistant professor of medicine at Harvard Medical School. An earlier version of this essay was published on his blog.