“I see a movie and I don’t understand it;  I read a book and I don’t understand it

“I see a movie and I don’t understand it; I read a book and I don’t understand it

Until a few days ago, Olga Amigó (58 years old) and Anna Faci (43) did not know each other. But persistent covid has somehow brought them together. Especially since both are participating in the pioneering clinical trial against this disease that is being carried out at the Germans Trias (Can Ruti) hospital in Badalona. The technique they apply is called plasmapheresis and consists of cleaning the blood of inflammatory substances.

Olga and Anna are two of the 50 participants in the trial – called PAX and largely financed by the pharmaceutical company Grifols – which began on October 3 and will last until March. As it is an invasive procedure (treatment is intravenous), the doctors leading the investigation –Lourdes Mateu and Sergio España- chose the most affected patients from those they treat in the hospital’s specialized unit. Olga and Anna are part of that group.

Brain fog, memory loss…

The most disabling symptoms are those that have to do with cognition

Both have had endless symptoms for more than two and a half years, that is, since the start of the pandemic. The list is almost endless: intense fatigue, weakness, muscle, joint, thoracic, lumbar pain, sensation of electricity and numbness in the extremities, dysphagia (trouble swallowing), dysphonia, shortness of breath, incoordination, unsteadiness when walking (both have suffered falls), intestinal problems, skin eruptions, dry skin, hair loss, eye and skin photosensitivity, intolerance to physical and mental exertion, feeling of fever without having it…

For Anna, the most disabling symptoms are those that have to do with cognition: mental fog, difficulty concentrating, memory loss, attention deficit… “I watch a movie and I don’t understand the plot. I read a book and I don’t understand what it explains. She says that she can’t do two things at once and that she constantly makes to-do lists because she forgets.

Anna and Olga are two of the 50 trial participants

Anna and Olga are two of the 50 trial participants

LV / Àlex Garcia

The same is true of Olga, who, in addition to the mental fog, stresses that what greatly invalidates her is the dysphonia she suffers (and which has been with her since the start of the pandemic), the incessant coughing, fatigue, and muscle aches and pains. articular.

Unlike others affected, they do not have outbreaks (days on which the symptoms reappear after a few days of absence of symptoms). In his case, discomfort is always present. Sometimes a few symptoms predominate; other times others; but they are always there, persevering.

There came a day when I couldn’t get out of bed anymore.”

Anna Faci

They are both down. Anna was working until October 2021. “I didn’t stop doing it, although with difficulty, until one day I couldn’t get out of bed anymore.” He is a musician. Pianist. He teaches and works at a music management company, where he is a musician as well as being part of management. “I can’t even play the piano,” he laments.

Olga works at the ICS (Catalan Health Institute), in human resources. Since she suffered from the pathology, she has not been able to return to her job. “I am not able to do anything all day, my activity is almost nil. I am lucky to have my husband with me, that he is the one who does everything ”. She says that, before the pandemic, she was a very vital woman. She left her house, in Alella (Barcelona), early in the morning and did not return until 11 pm at night.

I am not able to do anything all day, my activity is almost nil”

Olga Friend

Anna was also very active. She “she had a lot of social life”. Now, however, she assures that she has to limit her activity “a lot”. “If in the morning I meet someone to make coffee, I can no longer have a social life that day. If I did anything else, it would mean spending the next four days in bed.”

Both are undergoing psychological treatment. It is not easy to bear the string of symptoms they suffer, for so long and without a horizon of improvement. The question of whether they will ever be cured does not stop resonating in their heads. “It is what generates the most frustration and impotence”, emphasizes Anna. “Please, when will this end?” she asks herself over and over again.

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Josep Fita

assaig clinic that is preparing the hospital to combat the persistent covid, and the technique used will be the plasmafèresi

The essay they are part of –in which the Fundació Lluita contra les Infeccions also participates- could answer this question. That’s why they see it as a window to hope and feel very lucky to be part of it. “We are only 50 participants and there are many people who are in the same situation as us”, Anna wields.

They are grateful even if they receive a placebo – the trial is double-blind: neither the patients nor the doctors know who gets the treatment and who doesn’t. “If the technique works, I will receive the treatment later,” says Olga.

Six plasmapheresis sessions

The 50 trial participants will undergo six sessions of plasmapheresis over three weeks (two per week). During the process, they will fill out a symptom questionnaire, to see if they modulate as the sessions progress. In March, when all participants have completed the cycle (not all do it at the same time), it will be time to verify the results.

“We will look at changes week by week both in the analyzes and in the symptoms, comparing what has happened after two, four or six sessions,” says Dr. Sergio España, a doctor from the Can Ruti infectious diseases service.

We will look at changes week by week both in the analyzes and in the symptoms”

Sergio SpainDoctor of the infectious diseases service of Can Ruti

Both he and Dr. Lourdes Mateu, both responsible for the trial, not only want to verify if the treatment works, but also if it is maintained over time. “That is why we will make a follow-up visit three months after the trial has concluded,” says Mateu, who is also coordinator of the hospital’s persistent covid unit.

“Due to the pathophysiology –he continues-, it is possible that they improve, because we are cleaning the blood of inflammatory substances. But will this improvement be maintained after three months? If the cause of the pathology is that there is something that causes this inflammation and we do not act on it, it is possible that this improvement will not be maintained. But the opposite can happen, that after cleaning all the inflammatory substances, the patients continue just as well after three months ”, she concludes.


The only study on this pathology with the technique of plasmapheresis

This is the only study worldwide that is being carried out on persistent covid -a pathology for which there is no treatment yet- with the plasmapherisis technique. “Some doctors, given the despair of the patients, have tried it individually, but without having any scientific evidence,” says Mateu. That is why he stresses the importance of generating knowledge.
These same researchers intend to carry out, beyond this trial, two more in persistent covid. The first, with an antiviral. It would be similar, in procedure, to the one they will carry out at the beginning of 2023 at Duke University -double blind-, although with fewer participants (the latter will have 1,700). The antiviral that will be tested at Duke for persistent covid is Paxlovid. The second trial they have in mind at Can Ruti for this pathology will be with an immunomodulator. Both -both the latter and the antiviral- are in the phase of seeking financing.

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