Society has known the concept of “persistent COVID” for more than a year, but it has not been until now, in the middle of the sixth wave, when it has been agreed a first official definition for this disease that can affect up to 16% of people who have overcome an acute infection, according to expert estimates.
This definition, published in the journal The Lancet Infectious Diseases (the one with the greatest impact on infectious diseases), comes after the consensus of a group of international experts led by Joan B. Soriano, epidemiologist at the Pneumology Service of the University Hospital of La Princesa, and determines that “post-COVID-19” is “the condition that occurs in individuals with a history of probable or confirmed infection by SARS-CoV-2, generally three months after onset, with symptoms that last at least two months and cannot be explained with an alternative diagnosis ”.
The description of this disease with more than 200 sequelae is part of a Delphi process that has been led from Geneva by the COVID-19 Committee of the World Health Organization (WHO) and in which 265 patients, their caregivers and specialists have participated.
This method applies a structured communication technique, developed as a systematic and interactive consensus method, which combines the opinions of patients, their clinicians, basic scientists, managers and other experts. Previously, Delphi was used to agree on the earliest definitions of AIDS or post-ICU syndrome, among other new diseases.
A “too long” definition, but a “consensus” definition
According to the agreed definition, “Common symptoms include, but are not limited to, fatigue, shortness of breath, and cognitive dysfunction, and generally have an impact on daily functioning. Symptoms may be new after initial recovery from an acute episode of COVID-19 or persist from the initial illness. Symptoms can also fluctuate or relapse over time. “
In the words of Dr. Soriano, also a researcher at CIBERES (Center for Networked Biomedical Research in Respiratory Diseases), it is about a “consensus” definition that is “too long as a description” but it is “a first step in the right direction.”
“It is likely that time thresholds and symptom groupings will change as knowledge about this new disease and its sequelae increases, but having agreed on a first definition provides a basis for ongoing clinical studies and trials, and a better exploration of its mechanisms, risk factors, and therapies “, says the same doctor, in statements published on the website of the Hospital de La Princesa.
Lorenzo Armenteros, coordinator of the working group on persistent COVID of the Spanish Society of General and Family Physicians (SEMG), affirms in a conversation with RTVE.es that the definition represents “a great advance” because “to define a disease is to give it its own entity“, which can help, he says, to speed up diagnoses, to consider this pathology as a work accident and sick leave is recognized, since the investigation is promoted. Ultimately, it can significantly change the landscape for those who are still affected by the coronavirus months after being infected.
However, from Armenteros’s point of view, the consensual definition is “incomplete” and contains some “generalities” and “ambiguous” words that should be “polished” soon.
“I would have to be more blunt so that the concepts are absolutely clear and are based on evidence, “says the doctor, who has also coordinated a guide on persistent COVID published by the SEMG, the first scientific society that has led a study on this disease in Spain.
Discrepancies on the name: “We prefer ‘long COVID’ and not post COVID”
Silvia Guerrero, patient with Persistent COVID, coordinator of the Long Covid ACTS research group and one of those affected who participated in the Delphi method surveys, believes that the definition “is a good starting base and it is fundamental “because, since there was no definition until now, there has not even been a record of those affected.
“At the patient level we are satisfied because reflects almost everything we’ve been through and because it talks about diagnosis by symptoms (and not for cases confirmed by test). In the first wave there was a great lack of diagnostic tests and that has been an added problem because many people do not recognize it if they do not have it, “explains Guerrero, who is a doctor in Biochemistry and Molecular Biology.
“We were in no man’s land and this makes it stop being an invisible reality“
Nerea Montes, intensive care physician, patient COVID and also a researcher with Guerrero, agrees to highlight the progress that this definition implies. “It is very important at all levels because we were in no man’s land and this makes it stop being an invisible reality (…) It can help people to know that it is a real disease, to start researching and looking for solutions. We need answers now “, emphasizes the doctor, who, like the rest of the experts consulted by RTVE.es, disagrees with the name that appears in the definition: ‘post-COVID-19’.
“We prefer to call it ‘long covid’ or persistent covid because it implies that it is about a disease that lasts, which is still active and we have not resolved. When you say ‘post-covid’ it seems that you have reached a cure and it is not like that (…) I, since I was infected, I have not had a single day in which I felt that I am 100% recovered, “says Montes.
Armenteros, for his part, points out that the term ‘post-COVID’ refers to something “much broader” because it includes two parcels: what could be sequels and what can be the persistent covid, which are two “totally different” aspects.
Patients call for this disease to come to the fore
Apart from this discrepancy, the experts value that during the process the vision of the patients has been taken into account, who, in many cases, are also science professionals.
“There have been different sources that have made us in the background“
“It is being a very slow path for patients. There have been different spotlights that have made us in the background. First, severe cases, then vaccines, and the time has never come for us to be the focus, despite the fact that it is a very limiting disease, “adds Guerrero, who has been dragging a “pack” of symptoms for two years derivatives of the coronavirus, such as tachycardias, amparesthesias, migraines or mental fog, that affect you in your day to day.
Faced with this reality suffered by many people in Spain and also before the possibility that the Omicron variant could cause new cases of ‘long COVID’ the experts ask that more specific units be opened in hospitals and that health professionals be provided with tools that allow them to diagnose, treat and accompany patients.
Montes already defines persistent COVID as “the pandemic of the pandemic” and to those who suffer it as “the war wounded”: “It is very important to find effective treatment now so that we can recover our lives,” he stresses.