The virus that wouldn't go away. Why Long COVID sufferers often can't get help

Stage of denial

«Our son fell ill with the coronavirus in early June, the doctors said that the course of the disease was mild, and we could safely be treated at home», - Anna R. from Vladivostok told The Insider. «At first, he did not complain about anything, only his sense of smell and taste were gone, and his temperature dropped pretty quickly after taking antipyretics.

On June 29, we took a PCR, the result was negative, and we calmed down. But then the whole nightmare began. The mild fever stayed for 3½ months, coming and going. We saw doctors, had tests. The doctor on duty, whom we called, told us not to worry, explaining that such things can happen after covid. Then it got worse. Alyosha kept saying his legs were hurting, and he cried all the time, sometimes I noticed he had difficulty breathing, but no one ever saw any reason to hospitalize him. The doctors said there was nothing wrong.

I don't know why I didn't insist on hospitalization, I believed the disease would really go away without consequences. But after a while, his temperature suddenly spiked to 39, and his sats began to drop (they were fine before). We called an ambulance, and we were told we had to go to the hospital immediately. Alyosha kept saying that he was in pain, he was hurting all over. I can still hear it in my head: «Mom, it hurts. It hurts».

The hospital put him on a ventilator, and they wouldn't let us in the ICU. Four days later they called and said his body couldn't cope and they were unable to help...<...> So, the infection was inside him all the time and it ate him up from the inside? Why didn't the doctors notice it? Why did they say that was nothing critical when he was in constant fever? Who can explain to me why my son died and how to go on living...?»

Medicine is not yet ready to answer these questions, research into COVID-19 began only two years ago and so far, even the treatment of the conventional form of this disease presents great problems for doctors, and the very existence of a longer form has only recently begun to be recognized.

Initial studies

The concept of “Long COVID” made its first appearance not in scientific papers, but on social media. In May 2020, it was used on Twitter by a doctor from Lombardy, Elisa Perego, who spoke of various, constantly disappearing, and reappearing symptoms that persisted for several months in a row. It soon became clear that such cases were not at all exceptional.

«Most people recover within the first 3-4 weeks of being infected. In patients with Long COVID, these symptoms persist for at least 3 months, with new symptoms often added, frequently causing damage to internal organs and changes in all body systems,» said American physician Jonathan Shaathal, who has faced such complaints more than once, in an interview with The Insider.

At the same time, feeling not quite well after coronavirus is normal, but there is already a lot of evidence that symptoms persist for a long time in a significant percentage of patients, - said Ancha Baranova, doctor of biological sciences, a professor at the School of Systems Biology of the George Mason University (USA), in an interview with The Insider. Moreover, some of the symptoms are related to brain function.

On July 21, 2021, a study was published in the Lancet showing that those who had been sick with the coronavirus infection may suffer from impairments in performance, attention, spatial perception, and memory.

«The paper is based on cognitive tests that a certain number of people agreed to take before the pandemic», - Ancha Baranova says. «After that, new coronavirus-related questions were added to the standard ones. During the test, attention, reaction speed, abstract thinking, i.e., those mechanical indicators which are related to the general physiology of the brain, were separately evaluated. If a person's rate of blood flow or rate of impulse transfer through neurons slows down, it will be reflected in simple processes that are easy to measure quantitatively. The results of this study surprised scientists - it turned out that the coronavirus does slow down the speed at which the brain processes information. First of all, the functions that are responsible for making small decisions are affected. This can be properly measured; for example, if you see a green dot, press the left arrow; if you see a red dot, press the right arrow. And even with such a simple example, those who had recovered from the disease already had slower reactions».

A great many of those who had recovered from the disease complained about the mental effects, and they were very serious:

«I was very ill for a very long time,» - Daria from Kovdor in the Murmansk region told The Insider. «I was in the hospital for three months and it's a miracle I survived. When I came back home, I was literally learning to walk again - my muscles had atrophied due to the lack of physical activity during my hospitalization. Everything was like in a fog. At first, the familiar symptoms persisted, but then new ones were added - panic attacks, irritability, aggression, lethargy, problems with the cardiovascular system, which I had not experienced before. In addition, my pulse was constantly racing, my anxiety was growing, my concentration was completely lacking - and, most importantly, my memory suffered tremendously. I still forget a lot of things, and right after covid I could not remember simple things, let alone small details of something. Apart from the hospital, I did not go out or communicate with anyone, I withdrew completely into myself. In addition, I began to have severe insomnia. I could not sleep at all – something was tugging at my legs from the inside, and they were constantly twitching. I lay like a tense string and there was nothing I could do about it».

Many other COVID survivors have roughly similar accounts of the effects, but since these symptoms can easily be written off as depression or some other more familiar disorder, they are most often not believed to reflect a specific illness at all.

«Doctors say I'm faking it»

Ekaterina Komissarova from Ulyanovsk fell ill with COVID-19 back in September 2020. But as the weeks and months passed, not only did the familiar symptoms not go away, but also new ones emerged. The girl lost 20 kilos and now weighs only 37, complaining of constant nausea, vomiting, high fever, severe fatigue, insomnia and panic attacks:

«I contracted covid while caring for my sick husband. On the fifth day, my husband lost his sense of smell, and so did I a few days later. But my husband recovered fairly quickly, and I immediately began to lose weight, vomiting, with blood appearing in the saliva. After a while I thought I was cured, but I was wrong. The vomiting intensified, and it hasn't gone away yet. At the moment I am nauseous and I'm vomiting all day long. I can't sleep at all, but I can barely get out of bed - my whole body is very weak. Even just sitting is unbearable for me now. And I am very afraid. Every day I am alone with all of this, and no one can help me. During the period of illness, I lost most of my hair – it came off in bunches, and I constantly felt I was losing more and more of it. This is very frustrating, but no one listens to me or understands me. The doctors say I'm faking it».

Tests show there was no RNA virus in Ekaterina's body, but she insists the tests were negative only in the last few months. Doctors believe that all her problems are gastroenterological and have nothing to do with the COVID-19 virus, but at the doctors' counseling center, according to Ekaterina, there were no specialists who had ever treated coronavirus.

Back in summer, the Ulyanovsk-based media outlets reported on the mysterious case of Komissarova, who continued to be tested positive for coronavirus months later; since then, the girl's condition has not improved, and health officials now insist that she had never been diagnosed with coronavirus.

The problem is not the incompetence of Russian doctors at all; American patients describe their illness in roughly the same words. Here is what Long COVID Foundation member Dana S. from Texas told The Insider:

«We came down with COVID in March 2020. My son got sick first, but the pediatrician we went to kept telling us kids couldn't get COVID. Two weeks later my son got better, and I got horribly sick. The doctors didn't help me, they wrote off all my symptoms as asthma or bronchitis. Later, in October 2020, my daughter Francesca became ill. From time to time, she had severe pain in her chest, which kept coming and going away. In addition, her condition was so severe that she could not even walk because of weakness, but the doctors stubbornly refused to clarify the situation, telling us it was a purely psychological problem, and some of them even called my daughter a fake. Treatment for us was exactly the same – nothing.

After a while, Francesca began to have serious breathing problems, her pulse rate went up to 160. We went to the emergency room, but they sent us home, saying her condition was not critical and her pain was not due to COVID but to her digestive system. I saw that Francesca could hardly stand on her feet, but the doctors were not concerned at all. They didn't give us any medication, they refused to believe that Francesca had COVID. When I told them that she began to have severe sleep problems (she slept through the night and most of the day), the only thing the doctors recommended was to take a course of antidepressants. We used to be a very healthy family before – I used to dance, my daughter was a competitive soccer player, nobody smokes. Being alone with our problems, we found a group organized by the Long COVID Foundation, it is very supportive, but we are still out of shape. Francesca has been bedridden for 8 months and I still can't do even the simplest things properly. I have chairs all over my kitchen because I can't stand for long when I'm cooking or washing dishes, because every time I do, my heart rate goes up and my legs start to shake. It ruins a normal life.

There is a kind of surreal feeling of hopelessness that I have never experienced before – it doesn't make sense for the doctors to deny what is happening right in front of their eyes. Everything they did then and are doing now is a crime, and there will come a point when everyone knows about it».

Failure to recognize the diagnosis is not just a problem related to improper treatment and patient morale, it is also a legal issue, because people with this condition cannot work properly and are forced to quit their jobs. Here's what James from Tallahassee told The Insider:

«I got sick with COVID last September. At first everything was fine, and I already thought I was lucky - I'll have a mild form, but after five days my condition got much worse: I lost the sense of smell, my temperature rose to 39. When I was hospitalized, my oxygen level was already low, I was afraid that I would not come home from the hospital, but it turned out all right. After the hospital, nothing bothered me for about a month, I was happy and wanted to go back to work, but suddenly it was back again - only instead of fever I had severe chills, apathy, and very pronounced weakness. I, a healthy man who does not fall under any risk category, could not get out of bed for hours, just lying down and counting my racing pulse. When I did find the strength to go to work, I found myself unable to climb stairs beyond the fifth step, and eventually I had to quit. At this point, I no longer work as an office manager; I work as a driver instead, because it's easier for me. It's very frustrating, but I don't see any other way out, this weakness has not gone away so far».

«People are disappearing from their jobs, especially the older generation. Long COVID is more common among them,» - Ancha Baranova says.

Recognition

Faced with doctors' unwillingness to recognize the disease and trying to explain the reasons behind their condition, people around the world have begun to join chats on social media where they tell one another about the new coronavirus symptoms. Biologist Tatyana Balyuk has formed one such Facebook group with more than 50,000 participants from different countries.

Due to the efforts of her group, this diagnosis is now officially included into WHO's International Classification of Diseases, code ICD-10 U09, as post-coronavirus syndrome (post-COVID-19 condition) and is described as a disorder that usually appears 3 months after the onset of COVID-19 with symptoms that persist for at least 2 months and cannot be explained by an alternative diagnosis and include fatigue, shortness of breath, cognitive dysfunction and some other disorders.

Getting this diagnosis recognized was not easy, says Tatiana Balyuk:

«Initially, many groups were formed in different countries. The most active of them were the English, Spanish, and French communities. They even formed Patients' Associations online (which has not been done in Russia), whose members resolved to seek recognition of the new syndrome from the WHO. We decided to get involved in the process. Gradually, we created a huge number of surveys that were supposed to help us figure out why it was we who fell ill. After all, we were leading a healthy lifestyle and were not at risk.

Firstly, we found out what percentage of patients started to have 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 were activated, mainly herpes, shingles, Epstein-Barr herpes which causes another serious pathology - mononucleosis, but we, like many other scientists, failed to find out what triggered Long COVID.

Anyway, we came to the conclusion that Long COVID is associated with an autoimmune process, which affects internal organs and tissues, as well as the nervous system. It causes the state of dysautonomia - disturbance of autonomous nervous regulation of all basic life processes - breathing, heartbeat, blood pressure, temperature, and vestibular correction. It is possible that autoimmune processes plunge the body into immunosuppression, while damaging the part of immunity that is responsible for the viral response. And this conclusion was confirmed a year later by French scientists, in particular by Jerome Larcher.

After we complied overall statistics from all the groups, it turned out that our reports were absolutely similar. We put them together and sent them to the WHO. Then there was a meeting at then WHO, where we were invited as group administrators. Also in attendance were scientists who had just begun to study Long COVID. They made a report in which they stated that Long COVID can really be considered a physiological condition that is caused by changes in blood properties and an attack on the neurons of the brain. And the WHO supported the initiative of our groups, including the Russian group, where I am the administrator. The disease was classified as post-coronavirus syndrome and included in the ICD. It happened on October 20, 2020.»

Subsequently, the recognition of the condition took other forms. In the U.K., a special foundation has emerged which people who continue to have the coronavirus infection after having officially recovered can join.

«When we began our work in the spring of 2021, there was no information about Long COVID at all - a fairly limited number of specialists were just starting to deal with this issue,» - says Valentina Viduto, the founder of the foundation, in an interview with The Insider. «Later we were joined by doctors, mostly from the U.S., who were partly working on the «post-covid tail». In contact with them, we started recording informational videos so that people could become familiar with the 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, and finding the right treatment is difficult, you need a comprehensive solution: «For instance, a pulmonologist alone cannot treat all abnormalities, because he is focused only on lung problems, while the patient may have a disorder in the digestive tract, lungs, and brain as well».

In the U.S. in the fall of 2021, the National Institutes of Health (NIH) allocated $470 million to study the long-term effects of COVID-19. And back in July, the national RECOVER project was launched to bring together all research on «long term» covid and its effects. In addition, an important amendment was made to the Americans with Disabilities Act (ADA) – now those who suffer from «long» coronavirus are being treated as persons with disabilities.

Hiding place

Back in 2020, scientists started talking about how SARS-CoV-2 can disrupt all body systems, because after penetrating into the bloodstream from the nasopharynx, it quickly spreads through the human body and «settles» in the most unpredictable places, affecting the cardiovascular, nervous, digestive and other systems.

«The virus «lives» in the nasopharynx ten days at the most. There are two hypotheses regarding the functioning of the virus in the case of Long COVID, which do not contradict one another at all», says Olga Matveeva, molecular biologist and founder of Sendai Viralytics, a US biotechnology company. «One of them says that the virus remains in the cells and the immune system keeps encountering it, so the virus is activated. The second is that the immune system gets so «fired up» that it starts attacking its own cells, triggering the development of an autoimmune disease».

The scientist draws parallels between COVID and AIDS: the virus penetrates immune cells, where it goes through replication cycles, comes out, infects new cells, and sometimes just sits in the cell in a suppressed state. This triggers the process of inflammation in the cell; as the body fails to recognize a potential enemy, it begins to attack itself.

Biologist Tatiana Balyuk agrees with Matveeva: «Immunity suppresses the AIDS virus; it sleeps for several years and then, under favorable conditions, wakes up and «kills off» the body after 10-15 years. The problem is that we still do not know whether we are in the same situation as with AIDS. The SARS-CoV-2 virus may indeed «settle» in the most unpredictable places: it may be in the ganglia, in the muscles, in places inaccessible to immune cells, i.e., in the gonads (male testicles and female ovaries), but nobody has studied this question thoroughly.

General practitioner Ekaterina Levitskaya, head of a COVID treatment program in Israel, also suggests the virus may stay in the human body for a long time: «Whether the virus can reproduce in the human body for more than three weeks depends on the condition of the immune system. If it is weak, it is quite possible (and we have seen such studies) that by that time the virus is still in a state of replication, that is, division and reproduction. But if the body is young and the immune system is strong, then most likely after two weeks the virus will not be in the body anymore, although PCR test can still detect it for some time, although it will not be a live virus, but rather its genetic code».

Scientists have learned to detect Long COVID, examining the cornea, - says Professor Ancha Baranova: «A paper was recently published describing how damage to the density of nerve endings in the cornea can be considered a non-invasive detector of Long COVID. 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 causes the nerve endings in the eye to become less dense, and a specialist can immediately tell if a person has this syndrome and how severe it is».

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