lifetime

About this cluster of symptoms there are still many more uncertainties than certainties. Its origin and mechanisms are still unknown, although some hypotheses are being considered. And meanwhile, those affected tend to face labor and social difficulties and long medical journeys, jumping from specialist to specialist in search of treatments that, for the moment, are limited to alleviating the symptoms. “Many of us were not admitted and we really have not had a control, so we are a bit in limbo. We live a kind of health tour, you go from doctor to doctor doing tests, but there is no unification,” says Uge, that she was infected at the beginning of the first wave, most likely at the Hospital 12 de Octubre in Madrid, where she is a nurse.

As vaccination advances and the most vulnerable are immunized and with the prospect of controlling deaths and serious cases and also of recovering something similar to the previous life, the effects of the pandemic will still be ahead in many areas, including the care for these patients. And that is the line that the recent clinical guide published by fifty scientific societies and patient associations intends to mark. Promoted by the Spanish Society of General and Family Physicians (SEMG) and the platform for patients LongCovidACTS, it seeks to homogenize and coordinate care with the aim that health professionals have common guidelines and patients do not feel “orphans”, they explained their authors in the presentation.

According to the document, during the first months of the pandemic the situation of these people “went unnoticed”, until several scientific bodies have been recognizing it. “I always make the analogy of an iceberg. The persistent COVID is a great base that is submerged and as the floating part of the iceberg is controlled, which would be death and serious illness, the base emerges”, illustrates the vice president of the SEMG Pilar Rodríguez Ledo. The urgency to attend to the serious complications of the coronavirus, together with the saturation of health services, have parked other diseases, but “we have to start paying attention to them”: “In a first phase we have been concerned about saving the lives of the sick , and in a second we will have to see how these people recover theirs, who have parked it when they were very young. It must be one of the priority objectives of our health system in the coming months “, believes the doctor.

What we know about persistent COVID

An important step was its inclusion by Health in last January’s update of its scientific information document on the virus. The text recognizes that “although what is understood by persistent COVID has not yet been precisely defined, it seems clear that it affects a large number of people and that, therefore, it is having a great health and social impact in the pandemic.” The figure is still risky, because there are no clinical records, but according to a study carried out in the United Kingdom that is usually used as a reference, it would affect 10% of those infected. There are 360,000 in Spain, but that is based on the cases detected; we know that the real ones are much higher and today they could be around seven million [teniendo en cuenta que en la primera ola se infectaron 2,4 millones, según el estudio de seroprevalencia y a partir de entonces se detecta en torno al 70% de los casos], resulting in more than 700,000 people with persistent COVID.

The cause is still unknown, but there are basically three hypotheses on the table, the guide describes: the persistence of the virus in the body; the triggering of an “inflammatory storm” due to infection or the existence of autoantibodies, which “disturb the immune function” of the proteins they attack “and impair the control” of the virus. Beyond its origin, the disease appears as a cluster of diverse symptoms, more than 200 –36 on average per person–, according to a SEMG survey, which fluctuate over time: the most frequent are fatigue, general malaise, pain headache, low mood, shortness of breath, diarrhea, anxiety, low-grade fever … 72% reported memory loss and 78% concentration difficulties.

Like Uge, Nuria Hernández is also from the first wave. He was infected in March, he believes that “probably at work”, and since then he has been on leave. “You go from managing a team of more than 300 people, from taking care of your parents … From everything to nothing. It is as if they stopped you cold,” laments this Sevillian woman who turns 44 next Sunday. Coughing is the only symptom that has subsided in recent months. “Dyspnea, extreme tiredness, muscle aches, tachycardias … Capsulitis has formed on my shoulder and I can’t drive or wash my hair or even fasten my bra … I’m suffocating with minimal effort, I can’t do the shopping and climbing stairs to the first floor means stopping every little bit, “he sums up, almost losing track of everything that happens to him.

It sounds very familiar to Uge, who is 43 years old. And both add another of the conditions that most alter patients: cognitive and neurological. This is what is known as “brain fog” and includes memory loss, confusion, difficulty concentrating, conjuring up words or paying attention … “I haven’t been able to read a book, it’s like you can’t pay attention. relate things and think, sometimes it is as if they were speaking to me in another language, “says Uge. The woman returned two weeks ago to have an appointment with the neurologist and has started memory exercises. “It is exhausting to be more than a year like this. The way I already have to take it is to try to get used to it and enjoy my limitations, because if not, you will not survive. It is like a duel. There are days when you get angry and want to be like before, they are phases … “.

The need for “a comprehensive approach”

On the other hand, in the medical field, health professionals, tremendously demanded by the pandemic, face the added difficulty of treating the affectation. The symptoms “are extremely numerous and varied,” which “adds complexity in terms of diagnosis and the need for care,” advances Health. In addition, it affects both people who were admitted such as Nuria, who spent a week in the Virgen del Rocío Hospital in Seville, and those who had a mild infection and isolated at home, such as Uge. Xoan Miguens, vice president of the Spanish Society for Rehabilitation and Physical Medicine (SERMEF), explains that this conditions care: “To a large extent they are patients who did not enter the healthcare circuit, so they have not had a follow-up.”

The doctor agrees that “symptomatic variability” hinders standardized action, and therefore considers the guide presented last week as “a giant step” for health workers and patients. The care of the sick, adds Rodríguez Ledo, “exceeds the sum of their symptoms, someone has to take care of a comprehensive approach” whose coordination is carried out by Primary Care and from which “a shared and organized assistance between specialists” starts. In the case of Nuria, for a few months that is the approach that has been established in Seville, whose hospital has a post-covid unit for patients with sequelae but also monitors persistent COVID: “I feel lucky, with this I have won comprehensive monitoring, “he celebrates,” but it cannot depend on which center or community you are in. ”

And what about vaccination? For now, it is too early to draw conclusions. Uge has already been given the first dose, and has not noticed any effect. This is one of the common experiences in this group, but there are also those who improve, according to the clinical guide, which highlights the current absence of evidence. “If the positive effects that have been appearing are confirmed, instead of being preventive, it could be curative,” he highlights. But there are also cases of people who have worsened their symptoms after inoculation, although there are no markers that help predict who is likely to react in one direction or another. To what extent the vaccine can be the lifeline for those affected by persistent COVID is still a great unknown.