A mere glance at the gym inside the Guttmann neurorehabilitation center in Barcelona is enough to see what a year’s worth of pandemic has left in its wake. Numbered plastic partitions with oxygen outlets divide the ample space as a reminder of the health crisis’ darkest hour, when the gym was filled with beds in case available hospital resources became insufficient. The screens and the oxygen circuit are still there, just in case. But there are also mats and rehabilitation equipment. In one corner, Carme Cañas, 57, pushes her wheelchair, which she has been bound to since suffering muscle weakness caused by two months in an intensive care unit (ICU).
Close by Sheila Lozano, 24, is doing muscle-strengthening exercises on a mat to help with the breathing difficulties and joint pain that have plagued her since her “recovery” from the virus last year. Not only is there a threat of a fourth wave on the horizon, but Covid-19 has also left a range of physical and neurological effects in its wake that is undermining the daily lives of many former patients in varying degrees. The European Observatory on Health Systems and Policies, hosted by the World Health Organization (WHO), estimates that a quarter of those infected still have symptoms up to a month after diagnosis, and that 10% are still suffering the after-effects 12 weeks later. Meanwhile, healthcare professionals warn that there is a lack of resources to meet the growing demand for rehabilitation therapy services.
The disease does not end when it is “cured.” And there is no clear profile of who may be susceptible to post-Covid effects, although the severity of the disease does play a role. Those who have been hospitalized, especially in an ICU, are more likely to succumb to what is known as long Covid or post-Covid syndrome, which has already been assigned a code in the International Classification of Diseases by the WHO. “Two things come together – the neurological pathology that is conditioning the virus and the very long stays in the ICU,” says Montserrat Bernabeu, Care director at Institut Guttmann.
I’ve been like this for a year and I’m worse now than when I was infectedSheila Lozano, 24
The center has treated 50 cases suffering severe neurological conditions associated with Covid-19, such as a stroke or Guillain-Barré syndrome, which is a rare disorder in which the immune system attacks the nerves and causes paralysis. There are also patients with heart, kidney and respiratory damage. And then there is post-ICU syndrome, characterized by muscle weakness and the cognitive impact of long stays in intensive care. According to Ricard Ferrer, president of the Spanish Society of Intensive Care, this affects older patients and those who have had prolonged mechanical ventilation. “We see neuromuscular disorders, dysphagia [difficulty eating] and cognitive problems, such as loss of memory and attention. With Covid-19, we also see respiratory disorders, such as pulmonary fibrosis,” he explains.
When she woke up in the ICU, Cañas was unable to move. “I couldn’t eat or do anything,” she says. “I’m getting better now with the rehabilitation and I’m starting to walk, but I still can’t sit up on my own.” She also gets very tired and finds it hard to breathe, conditions common in people with persistent symptoms.
“There are patients with blood clots in the lungs or pockets of persistent pneumonia that requires treatment with cortisone after discharge,” explains the pulmonologist Diana Badenes, from the Post-Covid Unit at the Del Mar hospital in Barcelona. “But in most cases, they evolve well. After three months, most of the disorders are sorted out.”
The scientific community is also trying to shed light on other non-specific and persistent symptoms that affect those who have had both severe and mild cases of Covid-19. They still do not know why these highly variable long-Covid scenarios emerge, who they affect and how long they may last. According to preprint research based on 15 published studies, which has not yet been reviewed by independent experts, 80% of people who have had Covid-19 suffer after-effects, especially fatigue (58%), headaches (44%), attention disorders (27%) and dyspnea or difficulty breathing (25%).
Many of the persistent symptoms suffered by long-Covid patients do not show up in conventional medical tests. “Here we have a clinical manifestation and what we are missing is the etiology [study of its cause],” says Pilar Rodríguez, from the Spanish Society of General Practitioners. “There is no disease that explains this multi-system damage.” The Spanish Society of General Practitioners surveyed 1,834 people with symptoms compatible with long Covid: the majority (79%) were women and the symptoms lasted more than six months.
Lozano, who used to work as a nurse, is a case in point. “I’ve been like this for a year and I’m worse now than when I was infected,” she says. “I suffer from fatigue, aching muscles, headaches, dizziness and more dyspnea – I get tired making my bed. And I have cognitive problems: the simple act of writing a seven-line email can take me an hour and a half.” Lozano caught the virus in March 2020 and, although she returned to work, she did not last long on the job. “I was not able to last a whole working day,” she says.
Rodriguez warns that these are clinical scenarios that are extremely incapacitating. “Within this symptomatic and causal heterogeneity, we have to realize that it [long Covid] is generating significant disability in young, active people. According to our research, 30% need help with daily hygiene tasks.”
The origin of these symptoms is uncertain, but the common link among patients is they have all had Covid-19. “Many patients report severe headaches and back pain,” says Bernabeu. “Due to the coronavirus, there is a kind of meningismus [a group of symptoms usually associated with meningitis], a meningeal aspect that clears up, but which can have cognitive effects affecting brain function.”
There are several of the virus’ mechanisms that could explain this. “We know that the virus affects nervous tissue and causes problems of hypercoagulability, so it could cause small clots that might affect nervous tissue,” she says. “And then we have the hypoxia aspect [lack of oxygen reaching the tissues]. All those who suffer from a severe form of the disease, even if they don’t go on mechanical ventilation, experience a lack of oxygen in the tissues, which can cause temporary damage.”
The only treatments available are prescription drugs to alleviate symptoms and, more importantly, rehabilitation. At Guttmann, for example, the outpatient Post-Covid Unit has an eight-week cognitive, respiratory and motor rehabilitation program for less severe cases. “It is important to start rehabilitation therapy as soon as possible,” says Bernabeu. A study at Mataró hospital revealed that patients with shortness of breath and fatigue after having Covid-19 improve their respiratory capacity by 20% after rehabilitation.
The pandemic has flagged up the importance of rehabilitation therapies, but also the lack of resources for treating long Covid. “Rehabilitation has always been thought of as a luxury specialty – expensive and for the select few,” says Carolina de Miguel, president of the Spanish Society of Rehabilitation and Physical Medicine (SERMF). “But this concept is obsolete and highlights how little these services are made use of.”
In Spain, there are some 1,600 rehabilitation doctors in the public health system, according to SERMF, and only large hospitals have specialized units. “Most patients who need rehabilitation have been left in limbo because there is no system to meet the demand,” De Miguel adds. “We can’t see everyone. Those who reach us are those who come out of the ICU.”
The healthcare crisis has also exacerbated this lack of resources. In fact, hospital gyms were the first to be used when there was a lack of beds. “The WHO said that rehabilitation had to be used from the word go to address Covid, but that has not been the case,” says De Miguel. “In most hospitals, we had to cede our spaces during 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 they should have been.”
The experts agree that rehabilitation is and will continue to be key to dealing with post-Covid effects. “Covid has changed the role of rehabilitation and the need for physiotherapists starting with the ICU,” says Ferrer. “There is a deficit regarding these resources and that needs to be addressed. It is important to start rehabilitating early and consistently.”
Bernabeu also stresses the need to improve cognitive rehabilitation programs. And De Miguel calls for rehabilitation teams to be integrated as early as primary care, as well as reinforcing their role during hospitalization to prevent disabilities from evolving further. “What is lost from one day’s hospitalization at a muscular level will take four days to recover,” she says.
English version by Heather Galloway.