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Just a glance at the gym at the Guttmann neurorehabilitation center in Barcelona is enough to sketch an overview of what a year of pandemic has left behind. Numbered plastic partitions with oxygen intakes divide the room and recall the darkest days of the health crisis, when the gymnasium with hospital beds was set up in case available resources collapsed. The screens and the oxygen circuit are still there, just in case. But among them there are mats, stretchers and rehabilitation devices. In a corner, Carme Cañas, 57, pushes her wheelchair onto a stretcher, to which she is tied by muscle weakness that left her a two-month stay in the ICU due to the covid. A little further on, on a mat, 24-year-old Sheila Lozano does muscle strengthening exercises to stop the dyspnea (breathing difficulties) and joint pain that has been dragging on for a year, when she was infected with covid. In addition to the threat of a fourth wave, the disease has left an amalgam of sequelae of different intensity that compromises the day-to-day life of many patients. The European Observatory for Health Systems and Policies of the World Health Organization (WHO) estimates that a quarter of those infected continue with symptoms up to a month after diagnosis and 10% are still affected 12 weeks later. The health workers warn that there is a lack of rehabilitation resources to meet the growing demand.
The disease does not end with its cure. There is no clear pattern of the profiles most susceptible to sequelae, although the severity of the disease plays a role. Those people who have been hospitalized, especially in intensive care (ICU), have more letters. “Here two things come together: the neurological pathology that is conditioning the virus and, on the other hand, the extremely long stays in the ICU”, points out Montserrat Bernabeu, health care director of the Institut Guttmann. The center has treated fifty cases with severe neurological processes associated with covid, such as stroke or Guillain-Barré syndromes (a rare disorder where the immune system attacks the nerves and causes paralysis). There are also patients with heart, kidney or respiratory damage after the covid. And to all those problems is added, in addition, the post-ICU syndrome, characterized by muscle weakness and cognitive impact generated by long stays in these units. Ricard Ferrer, president of the Spanish Society of Intensive Care Medicine, points out: “It affects older patients with prolonged mechanical ventilation more. Neuromuscular alterations, dysphagia are seen [dificultad para comer} o problemas cognitivos, como pérdida de memoria y atención. Con la covid vemos también alteraciones respiratorias, como la fibrosis pulmonar”.
Cuando se despertó en la UCI, Cañas era incapaz de moverse. “No podía comer ni hacer nada. Ahora he mejorado con la rehabilitación y ya empiezo a caminar, pero aún no me puedo incorporar sola”, explica. También se cansa mucho y le cuesta respirar, algo común en las personas con secuelas. “Hay pacientes que presentan trombos en el pulmón o tienen focos de neumonía persistente y requieren tratamiento con cortisona tras el alta”, explica la neumóloga Diana Badenes, de la Unidad Postcovid del Hospital del Mar de Barcelona. “Pero en la mayoría de los casos, evolucionan bien. A los tres meses, la mayoría resuelven las alteraciones”.
La comunidad científica también está intentando arrojar luz sobre otros síntomas inespecíficos y prolongados que afectan tanto a los casos graves de covid como a los leves. Por ahora, desconocen por qué aparecen, en qué pacientes y hasta cuándo duran esos cuadros clínicos tan variables que configuran el llamado covid persistente —la OMS ya le ha asignado un código en la Clasificación Internacional de Enfermedades—. Según un estudio preprint —no revisado aún por expertos independientes— que ha analizado 15 investigaciones publicadas, el 80% de las personas que han pasado la covid sufren secuelas tras la infección, sobre todo fatiga (el 58%), cefalea (44%), trastornos de atención (27%) y disnea (25%).
Muchos pacientes con covid persistente no reflejan alteraciones en las pruebas médicas convencionales. “Aquí tenemos una manifestación clínica y lo que nos falta es la etiología [estudio de las causas]. There is no disease that explains this multisystemic damage ”, points out Pilar Rodríguez, from the Spanish Society of General Practitioners. This scientific society surveyed 1,834 people with symptoms compatible with persistent covid: the majority (79%) were women and the symptoms lasted more than half a year.
Lozano responds to that profile. “I have been like this for a year and I am worse now than when I was infected. I have fatigue, muscle aches, headaches, dizziness and more dyspnea: I get tired when I make bed. And I have cognitive alterations: the simple act of writing a seven-line email can take me an hour and a half ”, explains the young woman, a nurse by profession. She passed the covid in March 2020 and, although she returned to work, she did not last long in her position. “I was not able to endure a working day,” he says.
Rodríguez warns that these are very disabling clinical pictures: “Within this symptomatic and causal heterogeneity, we must realize that it is generating a lot of disability in young and active people at work. 30% need help with daily hygiene tasks, according to our study ”.
The origin of these symptoms is uncertain, but the common link among patients is having passed the covid. “Many patients report a brutal headache and back pain. There is like a meningism, a meningeal affectation that resolves, but that can give cognitive sequelae, of affectation of the cerebral functioning due to the coronavirus ”, points out Bernabeu. Some known mechanisms of the virus could explain it, he argues: “We know that the virus affects nervous tissue and causes hypercoagulability problems, so it could give small thrombi that could affect nervous tissue. And then we have the hypoxia part: all the people who suffer from the severe form of the disease, even without receiving mechanical ventilation, go through a situation of lack of oxygenation of the tissues, which can lead to temporary damage ”.
The only treatment there is are drugs to alleviate the symptoms and, above all, rehabilitation. In Guttmann, for example, the outpatient Postcovid Unit has an eight-week plan of cognitive, respiratory and motor rehabilitation for less severe cases. “It is important to start rehabilitation as soon as possible,” warns Bernabeu. A study from the Mataró hospital revealed that patients with dyspnea and postcovid fatigue improve their respiratory capacity by 20% after rehabilitation.
Limbo in attention
The pandemic has crystallized the importance of these rehabilitation therapies, but also the under-endowment of resources in this field. “Rehabilitation has always been thought of as a luxury specialty: expensive and for select patients. But this concept is obsolete and shows the underuse of these services ”, protests Carolina de Miguel, president of the Spanish Society for Rehabilitation and Physical Medicine (SERMF). In Spain there are about 1,600 rehabilitation doctors in public health, according to the SERMF, and only large hospitals have specialized units. “Most of the patients who need rehabilitation have been left in limbo because there is no system to meet the demand. We can’t see everyone. Those who come to us are those who leave the ICU ”, adds De Miguel.
In addition, the health crisis exacerbated the deficiencies. In fact, hospital gyms were the first to falter when beds were lacking. “The WHO said that rehabilitation had to be on the starting grid to address the covid. And that has not been done. In most hospitals we had to give up our spaces in the first wave. We are a specialty with limited resources and that, together with the closure of facilities, has meant that both covid and non-covid patients have not been treated as due, ”assumes de Miguel.
Rehabilitation, experts agree, is and will be key to addressing the aftermath of the covid. “The covid has changed the role of rehabilitation and the need for physiotherapists since the ICU. There is a deficit in these resources and they must be corrected. It is important to start rehabilitating early and constantly ”, points out Ferrer. Bernabeu also emphasizes the need to improve cognitive rehabilitation programs. For his part, De Miguel asks to integrate rehabilitation teams from primary care and strengthen hospital care to prevent the disability from evolving. “What is lost in a day of admission to the muscular level, it will take four days to recover again,” he warns.
The sequelae in mental health
The long-term damage of covid is not just cognitive, respiratory or motor. There is more. Carmen, for example, admits that now she is “assimilating” everything that happened and it is not easy. “I don’t remember being sick or when I entered the ICU. They explained it to me later and I am processing it, but there are days when I am very sad. I am very afraid of falling ill again ”, she admits. The psychological burden of the entire disease process also overwhelms the patient. A study published in The Lancet Psychiatric revealed that, in the first three months after testing positive for coronavirus, about 20% of patients have suffered anxiety, depression or insomnia. Having had a diagnosis of mental disorder prior to covid increases the risk of developing another by 65%.
The care director of the Guttman Hospital, Montserrat Bernabeu, focuses on the high prevalence of mental health problems: “We have found post-covid patients who, associated with the cognitive and physical issue, had a significant problem of anxiety and depression. Passing the disease in isolation, with very little support, without knowing what would happen to them, has generated levels of anxiety and a depressed mood that is added to the cognitive disorder. The sooner their situation can be assessed, the first you can guide the patient and reduce their anxiety levels ”. In her case, Sheila Lozano assures that anxiety levels have been on the rise as she assumed the persistent covid diagnosis: “What I miss the most is going back to work. I want to get my life back from before. I think now I have anxiety – but as a consequence, not as a cause of the persistent covid – when I see the journey I have had and not know if I am going to recover.
