This week the Spanish Society of General and Family Physicians (SEMG) held a congress in Granada in which they presented the preliminary results of a follow-up survey of patients with persistent covid (long covid), of which there are almost two in Spain millions Once answered by 942 patients, 80% of whom were women, the results show the difficult situation that this group is in.
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 should be borne in mind that the grade they gave before they fell ill was very satisfactory, of 8.5 out of 10, and now they score with an average of 4.4, below the pass mark,” he explains to La Vanguardia Dr. Pilar Rodríguez Ledo, vice-president of SEMG. The perception of their 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, meaning they have been enduring the penalties of the disease for more than three years, and all three continue to suffer from a host of disabling symptoms on a daily basis. Anna says she has found 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 you are.” She explains that a simple family lunch last Sunday made her stay in bed all day the next day.
Olga describes a similar situation. She explains that her body is asking her to walk (she had always been very active), but she is not responding. “After any minimal activity, I have to go to bed.” He says that one day he went out to buy “two things” he needed and when he came back he thought he wouldn’t be able to get home, and that his town, he says, is small (he 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 also participated, are not yet known.
Not only does a small physical effort take its toll on them, but also a mental one brings consequences, as it happens to most patients, also to Sílvia. The SEMG survey states that around 90% of respondents get worse with physical (93.3%) and mental (87.8%) effort.
All three suffer from cognitive problems. Sílvia, referred by the general practitioner, has even visited the Ace Alzheimer Center Barcelona Foundation, where they have confirmed that she suffers from a mild cognitive deficit. It manifests itself mainly in language. “Many times I can’t find the word I want to say.”
He explains that he has always written, that he still does now “because it is part of cognitive therapy”, but that he lacks a lot of fluency. “I realize that it costs me a lot”.
Anna has also been diagnosed with cognitive errors, albeit minor ones. Especially in executive functions, which prevents him from doing, he says, “two things at the same time”. “At least the test comes out altered, because I’ve been given countless tests since the beginning and they’ve all come out fine. And you ask yourself: ‘If everything goes well, why are we so bad?'”.
A musician by profession (he plays the piano), he reveals that he can only perform pieces of little difficulty, like those he taught his students (he has been on leave for a long time, like Sílvia and Olga). He also 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, says that she has stopped reading. He doesn’t watch movies either. He can’t cognitively follow them if the plot is a bit complicated. “I don’t remember the characters or what they just said.” He even takes days to reply to the watsaps sent by his girlfriends. “I don’t know what to write, the words don’t come out.”
The three assure that the pathology disables them enormously. Most patients have the same perception. According to SEMG data, 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 in many cases”, affirms Rodríguez Ledo.
Silvia’s doctor has already told her to accept the idea that, if she does not recover, she will have to apply for disability. “But I don’t want it”, he says. “What I want – he continues – is to continue working, I’m 55 years old”. Anna has also been told about this possibility. “Some doctor told me, ‘think that when your leave ends you can apply for disability’. I don’t want her, I’m young. What I want is to be well, to go back to work, to have a life. I have the feeling that I am losing my life”.
According to SEMG figures, almost 50% of patients are either on sick leave (26%), or work with great difficulty (20%). Only 15.6% work under normal conditions. “We are not making things easy for this group”, points out Rodríguez Ledo. “It is also necessary to understand – he adds – that it is not easy to adapt the workplace to this situation, especially due to the neurocognitive alteration that the patients present”.
Sufferers don’t just have to deal with extreme fatigue and mental fog. In addition to this, they see themselves in the tessitura of having to endure a whole string of other symptoms. Olga, for example, suffers from, among many other things, dysphonia from the first day – “it limits me a lot” -, muscle and joint pains – which prevent her from sleeping at night -, dyspnea (difficulty breathing), palpitations , feeling feverish, anosmia (loss of sense of smell), rashes on the skin…
Anna also knows this list of symptoms well. And he assures that even today new ones are appearing. “One of the things that has appeared to me recently is the difficulty in calculating distances. I want to hang a hanger in the wardrobe and it falls because I don’t perceive the distance well. Also parking the car. I’ve had the same car and the same parking lot for years. Well, I’ve already scratched the rear-view mirror twice lately.”
Sílvia, on the other hand, continues to have a fever, neurological problems (severe migraines, very strong tinnitus, hyperacusis…). “I’m already very tired of it. It is very difficult to sustain”, he argues.
The most serious problem he has to deal with now, he says, is rumination. “I try not to enter the loop of ‘why me’, ‘why am I like this’… Even though I have accepted the disease, you think about these things”. He says he’s scared because he doesn’t know what “so much inflammation for so long” can translate into. A few days ago, a carcinoma in his eye that had been removed ten years ago was burned again (it did not go through surgery). “Now I’m sick, but I wonder how sick I can get.”
At the moment, he has not resorted to psychological treatment to cope with the situation. He says that his GP helps him in this regard, also Dr. Lourdes Mateu, from the persistent covid unit of Can Ruti. Anna and Olga have indeed placed themselves in the hands of specialized professionals. “The situation creates frustration and a lot of helplessness”, explains the first. “My body is tired of fighting every day,” adds the second.
Anna hopes that with the rehearsals that are underway, they will guess the key. And despite the discontent he expresses towards the health system, “which has washed its hands of it”. Olga, despite the difficulty, even considers herself lucky. “I am very aware that many people who were infected in the first wave did not overcome it”.
