Long Covid, the ‘subpandemic’ that still dominates lives and baffles doctors five years on

Five years on from the outbreak of the Covid-19 pandemic, the disease still leaves much suffering in cases where vaccination and treatment aren’t sufficient, and many questions among the medical community. 

Despite society reopening and people flocking to public spaces and travelling once again, for thousands of people in Catalonia and many more all over the world suffering from ‘Long Covid’, the suffering of the pandemic has never really ended. 

Even doctors struggle to provide answers to the many patients showing varying levels of different symptoms, whose illnesses don’t respond to traditional cures. 

For many patients, including Sílvia Soler, this “subpandemic” still sets the parameters of much of what she can and cannot do in her life, while Laura Prats, who contracted Covid in her last year of school and had symptoms for two years, remembers needing half an hour to climb 14 stairs in her home.

Dr. Lourdes Mateu, the director of the Long Covid unit at the Can Ruti hospital in Badalona, tells the Catalan News Agency (ACN) that "there are people who have been unwell since the first infection in March 2020” and remain so. “We clearly have to keep working on it," she admits.

Her unit was a pioneering ward in the whole country when it opened in June 2020, and since then it has gone on to treat around 2,000 cases. Some months later, in December of the same year, the hospital opened up a pediatric Long Covid unit, which has treated around 200 minors since it opened. 

Mateu says that to this date, only 7.6% of the patients the ward has treated have been cured, "and that is why research is so important.”

"Abandoned" by authorities

One of the first cases diagnosed in March 2020 is that of Sílvia Soler, who is now the spokesperson for a collective of people affected by Long Covid. Five years on, she still suffers outbreaks that have changed her life. 

“I don’t have any day where I see the light and think I’ll be cured, that I’ll overcome it,” she tells ACN. “My voice is still hoarse, I’ve got muscular problems, joint pain, tinnitus, sensitivity to sound, skin issues, intestinal problems, and a general level of fatigue that leaves me wiped out.” 

While they wait for the arrival of a treatment that will give them "the opportunity to heal," those affected are at least thankful that the door has been opened for them to be treated as complex chronic patients. However, they say they feel "abandoned" by administrations that "don't want to assume their responsibility."

The “subpandemic” of Long Covid, as she puts it, generates not only health problems, but also social and labor problems, with thousands of people who have had to stop working and survive on "ridiculous incomes," or those who have had to continue going to work not in proper health conditions. "They told us to stay at home and heal ourselves, and five years later we are sick," she says.

Soler describes her situation in an interview with ACN at her home, which took place a week after it was initially scheduled. An outbreak, similar to many other outbreaks suffered in the past half decade, forced her to postpone the interview. "When you have an outbreak you just want to sleep until it passes, and the first five days are very hard. You never know what you will be able to do because any effort takes a lot."

Pediatric unit

The pediatric unit of the hospital currently treats around 80 minors, but has looked after 200 since it opened in late 2020. 

The frequency of the disease is much lower than in the adult population and it also has a much higher recovery rate - 53% have been discharged. Yet, the head of Pediatrics at Can Ruti, Maria Méndez, explains that there are "worse repercussions" because the disease impacts a vital moment of development at all levels.

The doctor explains that when Long Covid hits a minor, basic needs for personal development are suddenly cut off, such as studies, sports or socialization, “so the impact, I think, is worse than in an adult.” 

Complicating diagnosis is the fact that one of the main symptoms of Long Covid is neurocognitive alterations, but in a young child there is no history of grades to compare. “It is difficult to see if they are doing worse than before," Dr. Méndez says. 

Both Dr. Méndez and Dr. Mateu admit the limits of knowledge that the medical community have about Long Covid right now, and they are left unable to explain many cases. "Many cases have resolved spontaneously," admits Méndez. 

The head of Pediatrics points to the need to continue researching to answer these questions: "We still don't know many things and we don't know what makes a patient recover or not."

“It’s difficult, the uncertainty, not being able to offer explanations to a patient why they’re going through this, if they’ll be cured or not,” says Dr. Mateu. “There are some patients who, even though they’ve been cured of the disease, haven’t been able to return to their normal life from before, instead they’re just adapting to their new condition.”

"I've learned that I can do anything I set my mind to"

One of the patients who has been through the pediatric Long Covid unit at Can Ruti is Laura Prats. She is now 22 years old and is about to finish university, but when she was infected, on January 1, 2021, she was 17. She tells ACN that this was an "emotional shock" that lasted for nearly two years: "It's as if life suddenly stopped."

As happened in many cases, the first strong symptom was fever. After the regular confinement period, her symptoms persisted. "Instead of getting better, it was getting worse," Prats explains.

Within a few days, headaches and a loss of strength and mobility returned.

In addition to the physical deterioration, she was also worried about having to face her final year of high school and prepare for university exams. "I was tired all day, I needed to sleep, and I couldn't study for more than half an hour at a time. I wasn't hungry either and I hardly ate."

One of the biggest frustrations she remembers is having to face the stairs at her home. “There was a time when it took me more than half an hour to climb 14 stairs. My legs were shaking.” 

“I lost a lot of strength. In fact, that’s something that is still ongoing, because I used to play basketball, obviously I stopped playing when I had Covid, and I haven't been able to get back to the level of fitness that I had before Covid.”

In the hospital, she was looked after by rehab physios, nutritionists, psychiatrists, and psychologists, but she was not improving. A year later she was discharged, and her Long Covid had left without giving any explanation.

At the time, she felt life was “very unfair,” and she remembers thinking “why me?” However, these years of struggle has helped her grow enormously and find an inner strength. “I think I’ve learned a lot on a personal level to overcome it and say I've been through something very hard, I've managed to overcome it. 

“I think, above all, it gave me the strength to say that you can do anything you set your mind to.”

First clinical trial of a medicine

Dr. Mateu urges more resources to be put into research on Long Covid. She explains that it is necessary to better understand, define, and characterize the disease, as well as analyze risk factors to find the right treatment. 

High hopes are placed on the 'Thalassa' clinical trial, that she says "we think it can work."

The study is being carried out by the Fight Against Infectious Diseases Foundation and the biopharmaceutical company PharmaMar to evaluate the effectiveness of plitidepsin.

Doctor Mateu explains that it is an antiviral that "has effects against SARS-CoV-2, against herpes and also has an anti-inflammatory effect, which are three of the hypotheses of persistent Covid".