Israel Sánchez/ Agencia Reforma
miércoles, 12 April 2023 | 06:29
Until May 2021, when she had her first and only contagion of Covid-19, Valeria Martínez considered herself a healthy person.
Today, with only 34 years and a diagnosis of dysautonomy -alteration of the Autonomous Nervous System (ANS), which controls the involuntary functions of the internal organs-, his life is subject to a pacemaker due to the persistent sequelae of that infection.
“Before, I didn’t know what it was tachycardia or what it was bradycardia (slow heart rate). But during my acute illness I remember that I called for emergencies because when I lay down I felt that my chest was oppressing me, horrible, and when I stopped I felt that my heart was coming out.
“I said: ‘What’s going on with me?'”, shared Valeria in the framework of the International Day for the Reconocimiento and Conscience of the Long Covid, the past March 15, echoing a question for which the overpast specialists in the they had a response, and the one that went unanswered at all.
So new and unknown it seemed that different signs and symptoms persisted among those who had been infected by SARS-CoV-2, that the answer of many doctors was that it should be dealing with anxiety, depression or some psychosomatic questioning.
“We asked for an apology on behalf of the doctors, who ignorantly brought this issue; we weren’t taught it at school, we didn’t know what to do. And within our ignorance it was much easier to say: ‘No, it has to be something psychological’, because we didn’t know”, explained the pediatrician Cipatli Ayuzo, invited to the virtual meeting organized by the Colectivo Covid Persistência México Comunidad Solidaria.
This rejection and invalidation of what these patients were suffering as an interminable nightmare did nothing but complicate their panorama, leading them to a tiring journey through how many clinics and consultations were necessary in search of the slightest clue of what happened to them and, with them, any possibility of treatment.
“Doctor, people say that I don’t have anything, and I feel bad! myopericarditis -an inflammation problem in a certain part of the heart-, cause of the unbearable pain that he already felt in his chest.
Between the disgust, the sadness and the fear of not knowing if each one of those nights in which he stayed without air would be the last, he started to think: “I don’t want to live like this”.
“It’s so frustrating, so feo,” he told me through tears. “I have little ones, and only for them I eché muchas hanas”.
Having given in to the Persistent Mexico Comunidad Solidaria Covid support group, and discovering that she wasn’t the only one who went through all this, a hopeful light became inversely proportional to the discomfort that the indifference of people who already thought they had overcome use of mouthguards and the same pandemic, without any consideration for the vulnerability of others.
“Until the WHO declares that the pandemic is over, we should be empathetic and continue using the mouthpiece. Not for us, but for the people around us”, remarked Valeria, whose life hung on a hilo because of a contagion in the job.
“Mis doctors say that by a miracle I’m alive”.
***
It was thanks to the insistence of patients like Valeria all over the world that the medical community finally began to review it and in no way recognized that that was a reality.
“I couldn’t decide what happened or how to name it”, subrayed the pediatrician Cipatli Ayuzo, part of a group of researchers who carried out a broad statistical meta-analysis that identified more than 50 symptoms associated with what would finally be called Long Covid (REFORMA 21/ 02/2021).
“The term Long Covid is used to describe signs and symptoms that continue to develop after having had an acute Covid, including symptoms that persist or appear from four to 12 weeks, and the postcovid syndrome, which are those that appear after of the 12 weeks”, explained the specialist, proud that the WHO had used as a reference the mentioned study that he did with his colleagues.
The broad and massive stele of long-term effects of SARS-CoV-2 infection would grow up to 200, among neurological, emotional, cardiac, pulmonary and musculoskeletal changes.
And that, if it is an infectious agent that enters through the respiratory tract, in the end the disease that produces is of the inflammatory type, which ends up affecting practically every one of the organs of the body.
“Today we know that there is no body that we can say is free from presenting a complication of Covid”, emphasized Ayuzo.
“At the end, we know that up to 87 percent of the patients who survive this infection will have at least one persistent symptom that will have an impact on their quality of life”, would add in the same virtual meeting the doctor Diana Gómez Martín , researcher at the Salvador Zubirán National Institute of Medical Sciences and Nutrition (INCMNSZ).
Among that in what seems to be already clear is that the Long Covid occurs regardless of sex, the variant of contagion and the severity of the infection. However, until it persists, if one, two or more years, it is something that follows aún en entredicho, triggered by cases of patients who with el tiempo continue suffering sequels.
That’s what happened to Daniel Zamora, who after his first contagion of Covid-19 in April 2021, lived “a hell in life”, as he defines it, due to the heart and neurological disorders that he developed.
“Why is it happening to me if the Covid was already gone, I went through it hard, that the doctors told me it was five days. For them, the first five days were the fatal ones, that if they had crossed it, I was a survivor” , I remembered, with irony, the also member of the Persistent Covid group Mexico Comunidad Solidaria.
It, like many others, had to bear with what they said that the oppression of the chest “as if you saw an elephant on top” was nothing more than an anxiety crisis. Until some of the many cardiologists he visited finally diagnosed him with pericardial effusion (accumulation of fluid between the heart and the sac that surrounds it), myocarditis (inflammation of the heart muscle) and heart failure.
“‘You’re lucky to be alive’, that’s what the cardiologist says. ‘You’re back to Covid, and it’s a flight between life and death already with you'”, reports Daniel, who because of this has been going on for several months without being able to walk, at age 30.
“Es bienhard. My son took me to the cinema on the wheel silla”, he would say, with his voice half breaking. “Sí gives me a good sadness because I fell in a good time. My children say to me: ‘Hey, dad, why are you not playing with us?'”.
A buzz in the ear, accompanied by a strong pressure on the head, would later prelude your new calvary: encephalitis and damage to the nervous system; “since it was 25 times that I fell into emergencies, I speak a few times”, he illustrated that, decided to find a definitive solution, he left for Spain to try a consistent therapy in “washing” his blood to get rid of pro-inflammatory proteins, or cytokines .
“Finding a single treatment that works for us all is going to be difficult, from my perspective”, opined doctor Gómez Martín, confident that the effectiveness of senolytics -drugs against cellular aging- or of an antidiabetic such as metformin can be tested and help against specific sequelae.
For his part, Doctor Ayuzo would announce the creation of the first clinic in the country dedicated solely to Long Covid, in San Luis Potosí. This is where specialists such as virologist Luis del Carpio Orantes are contributing to the development of a guide for the care of these patients in both public and private institutions.
Brief but significant steps to alleviate this systematic neglect of what could only be recognized and named after much insistence and suffering.
¿Y Mexico? ‘In the dark’
As with other commemorative celebrations, the International Day for the Recognition and Awareness of the Long Covid in reality is far from being a day of celebration.
It is, more well, a wind from which a legion of afflicted patients claims a punctual demand: “Ask the authorities that we have reconocimiento”, clamored at the milestone of the journey of visibility César Medina, who in November 2020 founded the group of support for Persistent Covid Mexico Comunidad Solidaria, at a time when little was said and said of this condition with which he lives.
“In Mexico, today, the federal government has not recognized Long Covid as a disease that needs to be a priority”, he lamented. “There is no public policy and neither are there resources destined for research.
Much less statistics, Medina would continue, for which something is sadly obvious: “Without statistics, there is no patient to treat; and if there is no patient to treat, why invest resources?”. No one can be sick of something that “does not exist”.
But there is only one, but there are specialists who are coming to the next health crisis, which the country seems to be approaching with a self-imposed blind sale. “Mexico is totally in the shadows during Long Covid”, sentenced Medina, whose support group has more than 6 thousand members on Facebook.
“Unfortunately, we do not have very clear evidence at a public level. There is no organization that asks us for a record of those patients who we believe have Long Covid”, said, for his part, the doctor Guillermo Torre, Vice-president of Research of the Technological Monterrey.
“If you tell me that we have the obligation of public and private health institutions to report patients who have symptoms of Long Covid, then we could have a statistical analysis”, added in an interview via telephone the Rector of TecSalud, instance that in his moment launched a discussion group on the subject, which is no longer active.
According to Torre, one of the challenges in this matter is the difficulty of measuring all this constellation of symptoms, which perhaps is much more common in the primary sectors, where documentation and evidence are very precarious. Something that would have to be improved after the experience of the pandemic.
“Todo esto debe de llevarnos a replantarnos los systems de salud en Mexico; our primary care system is fragile, it has no coordination, no documentation. Hoy las clinics adjoining pharmacies and offices provide more primary care than probably all of our public sector. And that’s a penalty”, califorised Torre, for which it is clear that the contingency has already originated a crisis without precedent.
“This is already a topic, and we are going to deal with the consequences of families that are divorced, people who were partially disabled, of all those who died unnecessarily”, considered the doctor. “And another additional topic is to say: Today, of the people who are infected, how many will have an important impediment in time due to this wide Covid phenomenon? .
More than that, the possibility of carrying out research in this regard to define therapeutic alternatives for those who even han pilgrimage with their malaise outside the country, seems equally null.
“At the present time, in general, research in Mexico is extremely punished, but on this subject I believe it is still worse”, acknowledged doctor Diana Gómez Martín, researcher at the INCMNSZ, who led a study on cellular aging by SARS-CoV-2 with the support of Fundación Carlos Slim.
“I believe it is, regrettably, off the radar”.
