This week, the Spanish Society of General and Family Physicians (SEMG) held a congress in Granada where they presented the preliminary results of a follow-up survey of patients with persistent covid, which in Spain number almost two million. Duly completed by 942 patients, of whom 80% were women, its results show the difficult situation faced by this group.
To begin with, it details that, on average, the health of those affected has worsened by about 4 points on a scale from 0 to 10, with 10 being the best score. “It must be taken into account that the score they were given before they got sick was very satisfactory, 8.5 out of 10, and now they are scored with an average of 4.4, below the pass rate,” La Vanguardia explained to La Vanguardia. Dr. Pilar Rodríguez Ledo, vice president of the SEMG. The perception of her state of health is even worse: the score drops from 8.46 to 3.90.
Olga Amigó (59 years old), Anna Faci (43) and Sílvia Soler (55) corroborate these assessments. All three were infected during the first wave, that is, they have been enduring the hardships of the disease for more than three years, and all three continue to suffer daily from a multitude of symptoms that invalidate them. Anna says she has verified that if she tries to do something more every day, no matter how small, her condition worsens. “It’s like it’s counterproductive: the more you do, the worse off you are.” She explains that a simple family meal last Sunday left her in bed all day the next day.
A similar situation describes Olga. She says that her body asks her to walk (she had always been very active), but he doesn’t answer her. “After any minimal activity, I have to get into bed.” She assures that one day she went out to buy “two things” that she needed and, when she returned, she thought that she would not be able to get home, and that her town, she says, is small (she lives in Alella ).
Both participated, six months ago, in a clinical trial carried out at the Germans Trias i Pujol (Can Ruti) hospital in Badalona. The applied technique, called plasmapheresis, cleans the blood of inflammatory substances. The results of the study, in which the Fundació Lluita contra les Infecciones also participated, are not yet known.
Not only does a small physical effort take its toll on them, but also a mental one has consequences, as it happens to most patients, including Sílvia. The SEMG survey states that around 90% of those surveyed worsen with physical (93.3%) and mental (87.8%) effort.
All three suffer from cognitive problems. Sílvia, referred by her family doctor, has even visited the Ace Alzheimer Center Barcelona Foundation, where she has been confirmed that she suffers from a mild cognitive deficit. It manifests itself to him above all in language. “Many times I can’t find the word I want to say.”
He says that he has always written, that now he still does it “because it is part of cognitive therapy”, but that he lacks a lot of fluency. “I realize that it costs me horrors.”
Anna has also been detected with cognitive failures, albeit mild. Above all, in executive functions, which prevents her from doing, she says, “two things at the same time.” “At least the test comes out altered, because they have done endless tests on me from the beginning and they have all gone well. And you ask yourself: ‘If everything goes well, why are we so bad?’
A musician by profession (he plays the piano), he confesses that he can only interpret pieces of little difficulty, like the ones he taught his students (he has been out for a long time, like Sílvia and Olga). He, too, can’t read sheet music at first sight: “I’m unable to do it right now because my brain doesn’t coordinate.”
Olga, for her part, affirms that she has stopped reading. She doesn’t watch movies either. Cognitively, she can’t follow them if the plot is complicated. “I don’t remember the characters or what they just said.” She even takes days to respond to the watsaps that her friends send her. “I don’t know what to write, the words don’t come out.”
The three assure that the pathology invalidates them greatly. Most patients have the same perception. According to data from the SEMG, the degree of disability of patients before the pandemic was 0.73 -they were healthy- while now it is 6.09. “This indicates that the disease is disabling on many occasions,” says Rodríguez Ledo.
Sílvia’s doctor has already told her to get used to the idea that, if she doesn’t recover, she will have to apply for disability. “But I don’t love her,” he says. “What I want – he continues – is to continue working, I am 55 years old”. Anna has also been mentioned that possibility. “Some doctor has told me, ‘she thinks that when your sick leave ends you can request disability’. I don’t love her, I’m young. What I want is to be well, to go back to work, to have life. I have the feeling that I am missing my life.”
According to SEMG figures, almost 50% of the patients are either on sick leave (26%) or working with great difficulty (20%). Only 15.6% work under normal conditions. “We are not making things easy for this group,” says Rodríguez Ledo. “You also have to understand – he adds – that it is not easy to adapt the job to this situation, especially due to the neurocognitive alteration that the patients present”.
Sufferers not only have to deal with extreme tiredness and brain fog. In addition to this, they find themselves in the position of having to endure a whole string of other symptoms. Olga, for example, is afflicted, among many other things, with dysphonia from day one – “it limits me a lot” -, muscle and joint pain -which prevents her from sleeping at night-, dyspnea (difficulty breathing), palpitations , sensation of fever, anosmia (loss of the sense of smell), skin rashes…
Anna knows this list of symptoms well too. And she assures that even today they are appearing again. “One that has arisen to me recently is the difficulty in calculating distances. I want to hang a hanger in the closet and it falls off, because I don’t perceive distance well. Also parking the car. I have had the same car and the same parking lot for years. Well, lately I’ve scratched the rear-view mirror twice”.
Sílvia, for her part, continues with a fever, neurological problems (strong migraines, very strong tinnitus, hyperacusis…). “I am very tired already. It is very difficult to sustain ”, she argues.
The most serious problem he has to face now, he says, is mental rumination. “I try not to get into the loop of ‘why me’, ‘why am I like this’… Even though I have accepted the disease, you think about these things.” She says she is afraid because she doesn’t know what “so much inflammation for so long” can be translated into. A few days ago she was burned again (she did not undergo surgery) for a carcinoma in her eye that had appeared ten years ago. “Now I’m sick, but I wonder how much sicker I can get.”
At the moment, he has not resorted to psychological treatment to cope with the situation. She says that her family doctor helps her in this regard, as well as Dr. Lourdes Mateu, from the Can Ruti persistent covid unit. Anna and Olga have put themselves in the hands of specialized professionals. “The situation creates frustration and a lot of impotence,” says the first. “My body is tired of fighting every day,” adds the second.
Anna is hopeful that with the rehearsals that are underway, they will hit the key. And all despite the discontent that she verbalizes regarding the health system, “that she has washed her hands of it.”
Dr. Rodríguez Ledo corroborates it. “They are the great forgotten ones,” she maintains. “The reality is that the adequate response to their needs is not being given. Maybe we don’t have it either, but accepting that we don’t have it is a good step forward,” she adds.
He understands that there are a series of modifications that patients need that would not be “as difficult to implement, as it is to know and recognize who is suffering from this process.” “It is the minimum to have these patients identified,” she emphasizes. “It would not occur to anyone that we did not have patients with diabetes, ischemic heart disease or kidney disease identified in the consultations.”
Despite the difficulties and ostracism, Olga considers that she has been lucky. “I am very aware that a lot of people who got infected in the first wave didn’t get over it,” she concludes.
