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After a while, Francesca began to have serious breathing problems, her pulse reached 160. We decided to go to the emergency room, but there we were immediately sent home, adding that there was nothing critical, and the pain that my daughter was experiencing was not related to COVID, but with problems of the digestive system. But I saw that Francesca could hardly stand on her feet, but the doctors did not bother at all.
At the same time, no one prescribed us any medications – the doctors refused to believe that Francesca had COVID. When I said that she started having severe sleep problems (she slept all night and most of the day), the only thing the doctors advised was to take a course of antidepressants on drink. Faced with our problems, we found a group organized by the Long COVID Foundation, it is very supportive, but we are still not in shape.
Francesca was bedridden for 8 months, and I still can’t do even the simplest things normally. I have chairs all over my kitchen, because I can’t stand for a long time when I cook or wash the dishes, because every time my heart rate increases and my legs tremble. This destroys normal life.
Despair gives rise to a surreal feeling that I have never experienced before – this is nonsense when doctors deny what is happening right in front of their eyes. Everything they did then and are doing now is a crime, and the moment will come when everyone will know about it. “
Non-recognition of the diagnosis is a problem not only from the point of view of improper treatment and the patient’s morale, but also from a legal point of view, because people in this state cannot fully work and are forced to quit. Here’s what James from Tallahassee tells The Insider:
“I got sick with COVID in September this year. At first everything was fine, and I already thought that I was lucky – I would endure everything in a mild form, but after five days my condition deteriorated sharply: the smells disappeared, the temperature rose to 39. When I was hospitalized, I already had a low oxygen level, I I was afraid that I would not return home from the hospital, but nothing happened. After the hospital for about a month, nothing bothered me, I was delighted and wanted to go to work, when suddenly everything returned again – only instead of a fever, a strong chill, apathy and very pronounced weakness began. I, a healthy man who did not fall into the risk group, could not get out of bed for hours and constantly lay in a horizontal position, counting the beats of a frantic pulse. When I did find the strength to go to work, I could not rise above the fifth step, and in the end I had to quit. At the moment, I no longer work as a manager in the office, but as a driver, because it’s easier for me. It’s very offensive, but I don’t see any other way out, this weakness has not gone away until now. ”
“People disappear from their jobs, first of all, representatives of the older generation, among them Long-COVID is more common,” explains Ancha Baranova.
Confession
Faced with rejection from doctors and trying to explain the reasons for their condition, people around the world began to gather in chats on social networks, where they tell each other about the newly emerging symptoms of the coronavirus. One of such groups on Facebook, where there are already more than 50 thousand members from different countries, formed biologist Tatiana Balyuk.
Including thanks to the efforts of her group, this diagnosis has now been officially entered into the WHO International Classification of Diseases with the code ICD-10 U09 as post-coronavirus syndrome (post-COVID-19 condition) and is described as a disorder that usually manifests itself 3 months after the onset of COVID -19 with symptoms that last at least 2 months and cannot be explained by an alternative diagnosis, including fatigue, shortness of breath, cognitive dysfunction, and some other impairment.
It was not easy to achieve recognition of this diagnosis, says Tatiana Balyuk:
“Initially, many groups were created in different countries. The most active of these were representatives of the English, Spanish and French communities. They even formed the Association of Patients in the network (which was not done in Russia), whose members decided to break through a new syndrome in WHO. We made a decision to join the general process. Gradually, we created a huge number of surveys that were supposed to help us figure out exactly why we got sick. After all, we led a healthy lifestyle and were not at risk.
First, we found out what percentage of patients had liver problems, then we identified those who developed Gilbert’s syndrome, then those who began to suffer from migraines or had problems with serotonin metabolism. We also noticed that dormant infections are activated, mainly herpes, shingles, Epstein-Barr herpes, which causes another serious pathology – mononucleosis, but to find out where the starting point of the Long-COVID “launch” is, we, like many other scientists, never succeeded.
One way or another, we came to the conclusion that Long-COVID is associated with an autoimmune process that affects internal organs and tissues, as well as the nervous system. A state of dysautonomy begins – a violation of the autonomic nervous regulation of all basic life processes – respiration, heartbeat, pressure, temperature and vestibular correction. It is possible that autoimmune processes immerse the body in immunosuppression, while damaging that part of the immune system that is responsible for the viral response. And this conclusion a year later was confirmed by French scientists, in particular, Jerome Larcher.
When we collected general statistics from all groups, it turned out that our reports are absolutely similar. We folded them up and sent them to WHO. Then there was a meeting at WHO, where we were invited as group administrators. It was also attended by scientists who have just begun to study Long-COVID. They made a report in which they said that Long-COVID can indeed be considered a physiological condition, which is caused by a change in the properties of blood and an attack on neurons in the brain. And WHO supported the initiative of our groups, including the Russian one, where I am the administrator. And the disease was classified as post-coronavirus syndrome and included in the ICD. It happened on October 20, 2020 ”.
Subsequently, the recognition of this phenomenon took on other forms. The UK has a special stockwhere people who continue to suffer from coronavirus infection can go after an official recovery. The Long-COVID-19 Foundation estimates that more than a million Britons are affected by the lingering coronavirus, 13% of whom are children.
“When we started working in the spring of 2021, there was no information at all about Long-COVID – a rather limited circle of specialists had just begun to deal with this issue,” Valentina Viduto, the founder of the foundation, tells The Insider. – Later we were joined by doctors, mainly from the United States, who partly worked on the “post-tail”. Contacting them, we began to record information videoso that people can become familiar with long-covid symptoms and understand how to live with them. “
According to Viduto, it is already known that Long-COVID provokes a multisystem disorder in the body’s work, and it is difficult to find a suitable treatment; the work of the digestive tract, the lungs, and the brain can be disrupted.
In the US in the fall of 2021, the National Institutes of Health (NIH) singled out $ 470 million to study the long-term impact of COVID-19. Also in July, the national RECOVER project was launched to bring together all research related to long-term covid and its consequences.
In addition, an important amendment was made to the Americans with Disabilities Act (ADA) – now especially affected patients with “long” coronavirus are assigned a disability.
Where a virus can hide in the body
Back in 2020, scientists started talking about the fact that SARS-CoV-2 is capable of disrupting the work of all body systems, since, penetrating from the nasopharynx into the bloodstream, it quickly spreads through the human body and “settles” in the most unpredictable places, affecting the work of the cardiac vascular, nervous, digestive and other systems.
“The virus“ lives ”in the nasopharynx no longer than ten days. At the same time, there are two hypotheses regarding the functioning of the virus in Long-COVID, which do not contradict each other at all, – says Olga Matveeva, molecular biologist, founder of the biotechnology company Sendai Viralytics (USA). – One of them says that the virus remains in the cells of the body, and the immune system collides with it all the time, so the virus is activated. The second is that the immune system is “heated up” so much that it begins to attack its own cells, thus triggering the development of an autoimmune disease ”.
The scientist draws parallels between COVID and AIDS: the virus enters immune cells, where it replicates, exits, infects new cells, and sometimes just sits in a cell in a depressed state. In the cell, because of this, it starts the process of inflammation, and the body, not distinguishing a potential enemy, begins to attack itself.
Biologist Tatyana Balyuk agrees with Matveyeva: “Immunity crushes the AIDS virus, he sleeps somewhere for several years, and then, under favorable conditions, wakes up and“ finishes off ”after 10-15 years. The problem is that we still don’t know if we are in a situation like AIDS? After all, the SARS-CoV-2 virus can really “settle” in the most unpredictable places – it can be in the ganglia, and in the muscles, in places inaccessible to immune cells, that is, the gonads – the testes in men and the ovaries in women, but no one this issue has not yet been thoroughly investigated, everything remains at the level of a hypothesis. “
The fact that the virus can remain in the human body for a long time, says the head of the COVID treatment program in Israel, general practitioner Yekaterina Levitskaya: “Whether the virus can reproduce in the human body for more than three weeks depends on the state of the immune system. If it is weak, then it is quite possible (and we have come across such studies) that the virus is in a state of replication, that is, division and reproduction. But if the body is young, and the person has a strong immune system, then, most likely, after two weeks the virus will no longer be in the body, although the PCR test may still detect it for some time, but it will no longer be a live virus, but its genetic code”.
Scientists have learned to detect Long-COVID by examining the cornea, says Professor Ancha Baranova: “Recently came out article, which describes how damage to the density of nerve endings on the cornea of the eye can be considered a non-invasive Long-COVID detector. The cornea is transparent and very well innervated. If you examine it with a microscope and take a special picture, you can count the nerve endings. Long-COVID leads to a decrease in the density of nerve endings in the eye, and the specialist can immediately tell whether a person has this syndrome and how pronounced it is. “
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