ONE the newspaper columnist came to me a while ago, after noticing some of my tweets. As a pulmonary and intensive care physician, I argued that researchers and journalists should speak more carefully about a still-mysterious illness that would come to be known as Covid a long time ago.
The columnist was curious as to whether other medical professionals shared my skepticism about the emerging narrative in the news. “I am asking as much as a person as a journalist,” this correspondent shared with me, “because I am more afraid of this syndrome than of death.”
This is not an isolated perspective. What the media stories about Long Covid and people calling themselves long-distance describe is scary. Ed Yong, a writer for The Atlantic, was particularly influential in sculpting this narrative. At the “Long-haulers are redefining Covid-19, ”He describes a mysterious syndrome that strikes even those 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 these individuals, he noted, described about five months of “extreme fatigue, protruding veins, excessive bruising, irregular heartbeat, short-term memory loss, gynecological problems, sensitivity to light and sounds and brain fog.”
For some of these people, Yong noted, “months of illness can turn into years of disability.” ONE Recent first opinion he asked in the same way whether Covid-19 long-haul trucks “could become long-haul trucks”.
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These reports are worrying, but I am also concerned that the narrative about a new chronic illness caused by a mild infection with SARS-CoV-2, the virus that causes Covid-19, is getting ahead of the evidence.
Long Covid does not have a universal definition. Instead, it is often used as a comprehensive term to describe individuals whose symptoms last for more than a few weeks or months after the onset of Covid-19. The fact that many individuals experience prolonged symptoms after infection with SARS-CoV-2, however, should not be surprising. After all, critical illnesses of any cause can be devastating.
Almost everyone who dies from Covid-19 develops a disease called Severe acute respiratory syndrome (ARDS), a form of pneumonia that involves severe inflammation of both lungs. A lot of studies demonstrated that, for some individuals, ARDS can have a myriad of long-term effects, including physical and cognitive impairments, reduced lung function, mental health problems and poorer quality of life. A 1999 study found that even patients with less severe forms of pneumonia can have lasting symptoms for months.
In addition, lung failure can precipitate the failure of other organs, such as the kidneys and heart, and can sometimes require rehabilitation and specialized care for months or even years. SARS-CoV-2 infection can also (although rarely) inflict permanent damage to other organs, including severe myocarditis (an inflammation of the heart muscle that leads to heart failure) and Brain stroke, in the absence of significant lung disease.
Still, even though these illnesses are sometimes recognized in media reports about Long Covid, most narratives evoke something entirely different: a debilitating syndrome apparently affecting multiple organ systems for months on end – and perhaps indefinitely – but without any specific diagnosis such as myocarditis or stroke. It is also notable that reports often suggest that even those with only mild acute symptoms – or no acute symptoms – They’re at risk.
The symptoms of this condition are often, if not predominantly, non-respiratory in nature, and the people most affected appear to be relatively young, while those most susceptible to severe acute Covid-19 are, on average, older and sicker.
1 BuzzFeed title captured this demographic divergence: “Covid is making younger, healthier people sick for months. Now they are fighting for recognition ”. In this story, long-haulers described a complex of persistent 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 described a dementia-like illness after a mild infection like this: “It’s becoming known as Covid’s brain fog: disturbing cognitive symptoms that can include memory loss, confusion, difficulty focusing, dizziness and difficulty understanding the words of the day -to-day ”. Other times history stated that a mild infection fully resolved could cause severe psychosis months later, even leading to thoughts of committing murder.
Long Covid reports need to be more cautious for several reasons.
First, consider that at least some people who identify themselves as having long Covid appear to have never been infected with the SARS-CoV-2 virus. In Yong’s influential article, he cites a survey of Covid long-haulers in which about two-thirds of them had negative coronavirus antibody tests – blood tests showing previous SARS-CoV-2 infection. Meanwhile, a survey organized by a group of self-identified long-term Covid patients who recruited participants from online support groups reported in late December 2020 that about two-thirds of respondents who had undergone blood tests reported negative results.
It is true that, although blood tests are highly reported sensitive and specific, they are imperfect and can generate false positives and false negatives. And there is some evidence that antibodies may decrease over time. But only to a certain extent: study after study has found what the antibodies remain positive in most people with confirmed infections for many months. Therefore, it is highly likely that some or many long-haulers who have never been diagnosed with the acute phase PCR test and who also have negative antibody tests are “true negative”.
Why does it matter? On the one hand, if any proportion of Covid’s long-term patients has never been infected with SARS-COV-2, it shows that it is possible for anyone to incorrectly attribute chronic symptoms to this virus. This is not particularly surprising, since the acute symptoms of SARS-CoV-2 are generally not unique and can be caused by other respiratory infections. But what is most notable is that the research at the end of December also found virtually no difference in the burden of long-distance symptoms between those with and without evidence of antibodies from previous SARS-CoV-2 infection (or any positive test) , which decreases the probability of a causative role for SARS-CoV-2 as the predominant driver of chronic symptoms in this cohort.
After all, symptoms reported to be consistent with long Covid are associated with many conditions. Gastrointestinal symptoms, confusion and forgetfulness (“brain fog”), severe fatigue, hair loss and headaches are surprisingly common, even in the general population. Unfortunately, physical suffering prevails in our society.
Add to that the fact that the past year has produced fired levels of social anguish and mental emotional suffering. Positioning a potential link between psychological suffering and physical symptoms is sometimes ridiculed as medical gas lighting. But there is no doubt that mental suffering can produce physical suffering. ONE New England Journal of Medicine report showed that, on several continents, about half of people with depression also had unexplained physical symptoms, which often predominated over mental ones. Sleep problems, mental and physical sluggishness, persistent fatigue and concentration problems (also known as “brain fog”) are among the real ones criterion 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, sadness and difficulties. The loved ones of more than 500,000 Americans who died from Covid-19 are in mourning. Tens of millions have lost their jobs. This was a period of prolonged social isolation with no obvious parallel in history. We he must expect an outbreak of mental anguish and physical suffering that, although connected to the pandemic that occurs once every century, will not always be directly connected to SARS-VOC-2 itself.
But make no mistake: the suffering described by long Covid patients is debilitating and real. There will, as usual, be unclear about the distinct cause of suffering in each individual; there can often be multiple causes, from virological to psychosocial. Needless to say, all of these patients deserve a careful and empathetic assessment, in addition to appropriate treatment and referrals.
More broadly, policies are needed to contain the psychosocial suffering resulting from the trauma of the pandemic. 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 talk a little more cautiously – about long Covid.
Adam Gaffney is a pulmonary and intensive care physician at 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 your blog.