The coronavirus pandemic is already on the decline, but its shadow persists in consultations. Between 10% and 20% of people who have had covid have constant symptoms weeks or months after infection: it is post-covid syndrome or persistent covid, a clinical condition that affects mainly women and manifests itself with varying intensity and various symptoms, from shortness of breath (dyspnea) to neurological problems. The World Health Organization (WHO) took a step forward last week in his recognition of narrowing down the definition of this new ailment, but doctors and patients are still in uncertainty. Doctors admit their ignorance about the origin of the symptoms or a curative treatment and the patients are forced to make a pilgrimage through the health system in search of answers to alleviate their ills. Training and information are lacking, one and the other coincide.
Isabelle Delez, 51, calculates that it must have been one of the pioneering cases of the first wave: on March 8, 2020, she began with general discomfort and on the 11th she already felt as if she had “knives in her throat” from pain, fever rose and began a persistent cough that still lingers today. “The acute phase of the disease lasted for two months. My hair fell out in clumps, every afternoon I had a fever and my throat wouldn’t stop hurting, it was like chronic pharyngitis, ”she says. After months with those symptoms that did not go away, her family doctor began to refer her, in November 2020, to various specialists. Delez went through the departments of pulmonology, digestive, endocrine, internal medicine and cardiology without much success. “Most of the doctors transmitted their ignorance to me, they told me that they did not know what to give me or what to do with this,” he recalls.
More than a year and a half have passed and Delez continues with “dyspnea, low-grade fever every afternoon, joint and chest pain, diarrhea for days, insomnia, sore throat and dysphagia,” as well as problems with the thyroid and palpitations, he lists. The woman regrets the ups and downs within the health system, the constant change of specialists and the lack of understanding of some professionals. “A pulmonologist told me: ‘I don’t see anything in the CT scan. It is what you have to live. Hold on, you’ll get over it ”, he recalls.
The health workers consulted admit that they are ignorant and lack answers to questions that they and their patients ask themselves. The scientific societies of family medicine have produced protocols and clinical guidelines for action to organize the care circuit in these cases, but the underlying question remains unresolved: they do not know why these symptoms persist and there is no curative treatment, admits Ana Moragas , spokesperson for the Spanish Society of Family and Community Medicine. “It is very difficult for us and for the patients because we do not know the causes of the disease, how long it can last or how it will limit their lives. We have no way to diagnose or treat. We are treating the symptoms, but not the disease ”, explains the doctor.
There are several theories that experts use to explain this amalgam of persistent evils, but none are definitive, Moragas points out. “It can be an alteration in the immune response, that the inflammatory response is altered or that the virus remains in a reservoir and is reactivated and causing a persistent clinic that fluctuates over time”, he resolves.
The OMS, which has already assigned a provisional code to persistent covid within the section of ailments “of uncertain etiology” in the International Classification of Diseases, put a limit last week to its definition like this: it is a condition that occurs in people with a probable or confirmed history of covid, it manifests itself some time later with varied symptoms that last more than two months (fatigue, dyspnea and cognitive dysfunction are the more common) and cannot be explained by an alternative diagnosis. For Joan B. Soriano, epidemiologist at Hospital Princesa de Madrid and WHO consultant in the working group that defined persistent covid, this definition means “a first step”. “But it will require that its thresholds, time and duration be quantified even more objectively with new studies. For example, a separate definition may be required for children, ”he adds.
No tools to fight it
There are no tools to combat persistent covid other than to alleviate the symptoms. But the clinical pictures are different in each patient and the professionals lack a universal recipe for all: what works well for one may not work for another. “In primary care we are overwhelmed in every way and we lack help. We need more doctors and more training ”, points out Moragas.
Lorenzo Armenteros, spokesman for the Spanish Society of General Physicians, admits his “frustration” due to the lack of resources and calls for specialized persistent covid units to treat patients in a comprehensive and organized way: “Now, we can only alleviate symptoms and speak with specialties that have sensitivity to this ailment. We are frustrated because we have more and more patients with this pathology and we are tied up because there is no standardized care of the process ”. For patients it is “a fight in stages”, says the doctor: “First, that they recognize the disease, then that they treat you differently and ensure that they do not put you in the mental illness section.”
One of the basic problems is that there are no physical signs or affected organs. Persistent covid must be distinguished from the sequelae that the disease can leave behind. For example, the lung capacity of a person who has been seriously ill tends to suffer: his organs are injured and these are recovering little by little. “It is something that is clearly seen in radiological tests,” explains Germán Peces-Barba, president of the Spanish Society of Pneumology (Separ).
In persistent covid, in contrast, patients were often very mildly infected. “Later, maybe weeks later, he suffers from dyspnea and we can’t find anything to justify it. Lung function is normal, tests too, but the person suffers from it, they have not invented it. And it tends to be intermittent: sometimes you suffer from it at rest, others with intense exercise, not … ”, explains Peces Barba. As time goes by, these pulmonary symptoms usually subside. “Only in one in 10 these symptoms remain after three months and patients in whom it persists for more than a year are very rare,” says this pulmonologist.
Other characteristic symptoms of persistent covid are cognitive problems such as memory loss and lack of concentration. David García Azorín, from the Spanish Society of Neurology, observes that with the passage of time they are remitting, although, according to him, there is a lack of rigorous studies with reliable data to establish to what extent this is the case. “You see improvement, but we have patients who continue with symptoms and the problem is that we have not found any treatment that is the panacea,” he says. From what neurologists are seeing in their consultations, the frequent headaches that last after suffering the disease are possibly due to other pathologies. “We are thinking that headaches that were there, but had not yet begun to suffer, would be unmasked,” says García Azorín.
The lack of clear answers, in any case, worries patients. Edurne Estévez, 44, was infected in March 2020 and, although she suffered loss of memory, attention and orientation then, eight months later new symptoms appeared, such as dyspnea, fatigue or joint pain, which now remain. “We see ourselves going from specialist to specialist and how they pass the buck,” he laments. She has also visited half a dozen professionals and criticizes the “denialist doctors who do not believe in persistent covid” and the lack of a gender perspective with this ailment. “There is a lot of gender bias and we are pushed into mental health. The third time they told me it was anxiety, I said enough. That is the disaster drawer where they want to direct us instead of saying: ‘We don’t know’. In the end, you end up having depression because you have no one to take care of you. In other words, it is not the cause, it is the consequence ”, he protests.
A year and a half after suffering the covid, the National Institute of Social Security already considers Estévez suitable to work, but nothing is further from reality, says the woman: “Joint pain is what affects me the most in the plane physical, but mentally, I find it difficult to stay focused. Looking at the system I am fabulous, but the performance would not be the same and a working day would be a martyrdom for me, “he laments.
The problem of sick leave
Being a syndrome composed of multiple symptoms, which vary greatly between patients, sick leave for persistent covid poses a challenge for family doctors. The latest data from the Spanish Association of Occupational Medicine Specialists (AEEMT), from March, indicated that 100,000 out of the 1.2 million sick leave due to covid lasted more than 12 weeks. With the Social Security figures, it was not possible to distinguish which ones were due to the prolonged infection or persistent covid, two different diseases.
It is a common practice that sick leave remains in force in people with persistent covid. Decree 6/2020 of March 10 established that temporary disabilities due to covid have benefits that differentiate it from one due to any other disease, such as that 75% of the salary is charged from the first day, instead of 65% from of the fourth day. Faced with this situation, the General Directorate for Social Security Organization last week sent a note to the provincial offices to remind them that in case of persistent covid, the sick leave due to infection had to end and start a new one.
José Manuel Vicente Pardo, coordinator of the AEEMT document on persistent covid and return to work, explains that if a process of temporary disability is due to this syndrome, it is assimilated to any process of sick leave, with a lower economic amount. Also, if a person is unemployed during the sick leave and it runs out, they could not collect it. “This situation can generate an occupational and health risk, precipitous discharges can occur that worsen the symptoms or that lead the worker to perform a position in which they cannot perform and sometimes a declaration of unfit, which can lead to a dismissal, “he says.
The limited scientific advances to unravel the persistent covid and the bureaucratic obstacles to recognize its limiting capacity leave those affected in a kind of limbo: without a cure or resources to overcome the disease.