What is long Covid and why is it so hard to identify

Researchers and patients, in partnership with the National Health Agency of Canada, held yesterday (June 9) the first Long Covid Awareness Day. The disease, also called post-Covid or persistent Covid, would be a prolonged form of the pandemic respiratory syndrome that lasts for more than a month since the infection. The first person to use the term “long Covid” with this specific connotation seems to have been Elisa Perego, honorary researcher at the Institute of Archeology at University College London, in March 2020, to describe what she herself went through when she contracted the coronavirus.

In preliminary reports, the World Health Organization estimates that 10 to 20% of those infected may have persistent symptoms. Theresa Tam, head of health for the Canadian government, speculated in May that the number could be as high as 50%. There are two studies with large samples in which the estimate is an intermediate value between that of the WHO and that of Tam, both published in the scientific journal BMJ.

The first, published in April of 2021 by Sarah Daugherty, a researcher at UnitedHealth Group’s OptumLabs laboratory in Minneapolis, USA, and colleagues, used a sample of 193 thousand adults between 10 and 67 years that they had Covid and concluded that 14% had at least one persistent sequel. The other large study, from February of this year, focused on 93 a thousand elderly people from 93 years that they became infected; 32% of them sought medical help for persistent sequelae for 70 days or more. As other lung diseases can leave symptoms lingering, the authors — Ken Cohen, also a researcher at OptumLabs, and colleagues — compared the long-term Covid group with those who had these other diseases and found an increased risk for breathing difficulties, dementia, post-mortem fatigue -viral. The risk for most symptoms was higher in those who had more severe forms of the acute illness. However, scientists do not use the term “long Covid”.

Patients created the diagnosis

Long Covid was the first disease defined by the union of patient narratives on social networks. They used storytelling devices such as chronology, metaphor, suspense and imagination, and their narrative has the distinctive feature of the absence of a medical professional as a witness. These are the conclusions of Alex Rushforth, a British health sociologist and researcher at the Nuffield Department of Primary Health Care Sciences at the University of Oxford, together with collaborators, in an article published in February 193 in the journal Social Science & Medicine. The devices used “create persuasive explanations of a strange and frightening new disease, fraught with setbacks and ignored or despised by healthcare professionals,” say the authors.

Alex and colleagues are not committed to confirmation or rejection of long-term Covid as a diagnosis and are more interested in the social dynamics behind its emergence in the public environment. But they are sympathetic to patients and say part of the problem was the “tragically misleading” error in the official description of Covid as a transient disease, which was supposed to pass in two weeks. In fact, the first descriptions of the disease were inadequate: it is not, for example, just a respiratory disease, but also a circulatory one.

Reports of long Covid are found on specialized websites and groups in the social networks, six are mentioned in the study, totaling almost 70 a thousand people. The reports mention discouragement, anxiety, depression, shortness of breath, low blood oxygenation indicated on home oximeters, deep exhaustion to the point of limiting movements, and mental confusion with loss of concentration and memory. Compared to the official diagnosis, “the symptoms were inconsistent and vague, affecting any one or many of the body’s systems and coming and going without a pattern or reason.” In the sample of this narrative study, 93% of patients had not been hospitalized (out of a small sample with a total of 193 ).

Long Covid recognized as a disability

The United States Department of Health and Human Services (HHS) acknowledged in July 2021 that long-term Covid may be a disability under the country’s law.

Journalists with long-term Covid report persistence of debilitating concentration difficulties for their work. Richard Gard, 67, a music professor at Yale University, who is a scuba diver and describes himself as “very fit”, reports that after being sick with severe Covid-19 for two and a half weeks, needing a respirator, is not the same as two years ago. He tells Kaiser Health News, a website linked to a health plan, that he has already racked up more than two months of hospital stays with symptoms resembling a heart attack. “If I tried to climb stairs (…) I would almost faint from exhaustion” with chest pain that spread to the arm and neck, accompanied by fatigue and sweating.

Some of the symptoms proposed for Covid-19 long have elements of subjectivity. One interviewee in the Rushforth Narrative Study only received negative results for infection with the coronavirus. Although more scarce in the literature, there are studies proposing that at least part of the phenomenon is hypochondria or Munchausen syndrome. In the syndrome, which is recognized by psychiatry, a person tries to mimic the symptoms of a disease they don’t have in order to play the role of patient and gain medical attention. “It is quite easy to mimic the symptoms of Covid-19”, say three Indian researchers in a July article 2020 first authored by Avik Ray, Department of Pharmacology, All India Institute of Medical Sciences in Bopal. For them, a sign of Munchausen with Covid would be vague and incoherent descriptions of symptom onset and progression, in addition to visits to multiple testing sites. Cases of patients with the syndrome cheating laboratory tests are known. As the article came early in the pandemic, the authors are not able to point out such specific cases for Covid. In another article by 2021, geriatric doctor Yadollah Abolfathi Momtaz, affiliated with the University of Social Welfare and Rehabilitation Sciences in Iran, claims that “some people are pretending to have Covid-19, which has become a generalized social phenomenon”, but does not present data or analysis about it.

Fearful experts

Reacting to the alarmism of other experts and part of the press regarding the trips of millions of Americans to Memorial Day, the day in honor of those killed in fighting in the United States that falls on the last Monday of May, the professor of epidemiology and biostatistics at the University of California at San Francisco Vinay Prasad declared in his blog that “to the extent that long-term Covid is a problem, it is also inevitable” .

He thinks long-term Covid research is in its infancy, and that more precise definitions are needed. “All we know with confidence at this point is that anosmia is part of it”, says the scientist. “Everyone who lives long enough will get Covid-19, (…) all roads lead to Rome ”. He thinks current studies may be exaggerating the frequency of the long version because of inadequate control (comparison with other groups).

Prasad offers another prediction: “Covid cases will continue to rise and dropping until we reach saturation from 98 to 98 % of all infected Americans. Then cases will still rise and fall with reinfections, but most will be so fed up with it that they will no longer test or document” their cases. Asking himself who is right, the citizens who traveled or the experts, he says that “the experts have lost their minds” and “are elitists who have lost touch” with the rest of the country. “Your policies make no sense. They are trying to please the most fearful among them. My concern is that retaliation will go too far, but at this point, your gaffes were so big that”, like the long Covid, retaliation would be “inevitable”.

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