Five years after start of pandemic, no one knows how many people are living with long Covid: ‘They see you as a bum who doesn’t want to work’

Five years after the coronavirus was first detected in China, no one knows how many people live with long Covid. The disease is undetectable through biological exams and those who live with it often feel misunderstood, in part because a large part of society, including some doctors, “doesn’t believe” in the illness, in the words of Elena Pérez Porres of Spain’s Association of Patients with Long Covid. “They see you as a bum who doesn’t want to work.”

Many of those who turn to the association, explains Pérez Porres, do so “looking for a group in which they’re not the weird ones.” The majority of them are women. Long Covid does affect some men, but largely seems to impact females, who have symptoms that range from dyspnea (difficulty breathing), mental fog, cognitive and cardiac issues, muscle pains, and fatigue. It is diagnosed by discarding other illnesses, when one or more symptoms last for three months after a Covid infection.

The challenge of identifying long Covid is one of the reasons why no one really knows how many people are living with it. A study published in the Nature Medicine journal earlier this year put the number at 400 million individuals worldwide. But that number refers to the people who had experienced the disease at any point up until now, and it’s less clear how many are still exhibiting symptoms. The most recent review of studies (which was carried out in 2022) finds that 12 months after their diagnosis, only 15% of people continue to have symptoms. Due to this, it is difficult to know the illnesses’ current incidence.

Another metric for the phenomenon is sick leave. Spain’s National Institute of Social Security has dubbed the persistence of physical, cognitive and/or psychological symptoms that cannot be explained by any other diagnosis, 12 weeks after the acute phase of the infection has passed, “post Covid-19 syndrome” or “post Covid-19″. Manuel Vicente Pardo, director of the International Chair of Evaluative, Expert and Labor Medicine at the Catholic University San Antonio of Murcia and an expert in long Covid, explains that no detailed follow-up of cases has been carried out. “It can be estimated that, of the nine million sick leaves due to Covid registered [in Spain] from March 2020 to the end of 2023, around 800,000 workers stayed away from work for more than six months due to long Covid symptoms. This does not mean that all of them are still experiencing a disability that prevents them from working, since most improve at least enough to be able to work after a year of being affected by the condition. But others do maintain persistent symptoms that prolong their functional limitation,” he says.

The percentage of patients who develop long Covid after a Covid infection, Vicente continues, continues to fall. In the first year of the pandemic, they comprised an estimated 16% of those infected, while today the number stands at 4%. Among those who were hospitalized due to seriousness of symptoms, those numbers are much higher; between 60% and 80% experience long Covid.

What is long Covid?

What happens to people who suffer from this illness? Though we still have much to learn about long Covid, it has been classified as a post-viral syndrome, a category that includes reactions to other pathogens. Pilar Rodríguez Ledo, president of the Spanish Research Network on Long Covid and the Spanish Society of General and Family Physicians, explains that after coming into contact with a virus, most people return to normal, but others can experience an inflammatory cascade associated with alterations to one’s immune system. “This produces an imbalance, depending on the immune and inflammatory state and on the persistence of the virus itself, which triggers all these conditions. Depending on which organ is most affected, different symptoms are triggered,” she says.

Those alternations are a (hypothetical) explanation that have been offered by researchers as to why the majority of long Covid patients are women, given that females experience more immunological diseases than men do. Long Covid alterations do seem to be connected to hormones, as some symptoms have been observed to vary in different phases of ovulation.

The Spaniard Maira Bergami, who is 48 years old, has lived with the disease since the beginning of the pandemic in March 2020. “I couldn’t get up for a month. They told me I had a post-viral syndrome and that I’d get over it, but that never happened. To the contrary, it has gotten worse: I have muscular problems, mental fog, tremors in my feet and hands, I started to lose my memory, have trouble breathing and developed arrhythmia. I started going from doctor to doctor, but no one could tell me anything. They tell you that you have to go to a psychiatrist, that you’re in low spirits, that you have to try to stop thinking about the disease,” she says.

She’s been on sick leave for more than 570 days, but her benefits are coming to an end. After two years, Spanish Social Security will make an assessment to determine whether she has a permanent disability or if she’ll be let go from her job. Pérez Porres says that many people who are not yet able to work are let go and wind up unemployed. “You are left helpless by the state,” she says. Many of their cases are winding up in Spanish courts, which are beginning to rule in favor of those affected, although, according to Pérez Porres, that’s not always the case.

New hope

At the end of November, Spain’s Congress considered, at the request of a parliamentary group, a proposition to improve the recognition and care of people living with long Covid. It aims to improve the processing of long Covid sick leave, but also the care, diagnosis and training of doctors, who are often unable to identify the disease. To address the issue, the proposal calls for the creation of more multidisciplinary health units, as patients often experience varied symptoms that require them to see more than one specialist.

The first long Covid multidisciplinary health unit in Spain was created at the Hospital Germans Trias in Barcelona in the spring of 2020. Lourdes Mateu, its director, explains that its first step was to develop professional training, particularly for primary care doctors, who often wind up treating long Covid patients. “There is a great lack of knowledge regarding the facts that this disease exists. Many think that patients are somatizing, and of course, many do have psychological problems, but those are secondary conditions to the other symptoms they have often been enduring for a long period of time.”

Once physicians have better training, the work of the multidisciplinary units will consist of assisting them in the facilitation of treatment and tests so that patients do not have to make appointments with separate specialists and their treatment plan is better unified.

Another issue with long Covid is that there is no specific treatment associated with the disease. One or more symptoms can be alleviated, depending on the patient’s condition, but there is no miracle drug that can cure them — though clinical trials are underway that could produce results related to pharmaceutical relief in coming years. “Both positive and negative results are important, because they will allow us to rule out unscientific treatments that are often used by desperate people,” says Mateu.

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