What applies to the long COVID - The experiences of specialists and patients

Inside its evolving pandemic COVID-19 A second "pandemic" is already emerging for patients who suffer for a long time

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The SARS-CoV-2 pandemic has found the lady Eleni Iasonidou, pediatrician in Thessaloniki, mother of twin two-year-old girls at the time, very busy. "The obligations during the day are many, but I always managed to cope, I was in good physical condition, I exercised regularly" says in BIMA-Science. And then, in October 2020, when there were still no vaccines for SARS-CoV-2, Mrs. Iasonidou's life changed drastically because of her. COVID-19.

In the acute phase of the disease its symptoms were mild. "I had an outbreak of asthma from which I suffer, rhinitis, anemia and tastelessness, however I never developed a fever. Prof.' throughout the quarantine I was fully functional. And when my quarantine ended, I returned to work relieved. " A relief that did not last long. "About 20 days later, I woke up one morning with a strong tachycardia. I was diagnosed with pericarditis. Over the next ten days I also developed skin manifestations, very painful gingivitis, very intense shortness of breath - I could not even speak - and chest pain. Computed tomography showed no pneumonia. I received treatment with colchicine and cortisone for two months and I believed that I overcame it ". After the end of the treatment, however, the symptoms returned and were even "embellished". "Cough and asthma flared up again, hair loss and manifestations from other systems began. I had entered the vicious circle of Long COVID, in a pattern of ups and downs that defined my life ".

"Light in the tunnel" of the long COVID, Mrs. Iasonidou believed that she saw when she was vaccinated. "In the first few weeks after the vaccine, I thought it was all over, but then last summer, I had a very severe relapse with hoarseness and shingles. Since then about half a month every month I am in relapse and the other half I feel better. In the relapses I have cough, hoarseness, shortness of breath even when I speak or walk, intense orthostatic tachycardia, exhausting fatigue ".

The "drains" of the disease with SARS-CoV-2 are debilitating for a portion of patients, and as the first Greek study showed in people with long-term COVID syndrome, the severity of the disease is not a prerequisite for its prolongation. Specialists and patients describe the peculiarities of the complex pathological entity, about which we still do not know much


Association - "lifebuoy"

These days he feels well but lives constantly with the fear of the next recurrence of a problem to which even doctors can not, as he says, provide a solution, since there is no specific treatment for long COVID. Ms. Iasonidou, a former doctor, fully understands that we are talking about a new disease entity, which is often not recognized by doctors, and that both she and other Long COVID patients are currently "swimming" in uncharted waters without they know if and when they will be able to get out… safe on land. However, wanting to find a "lifeline" in this difficult journey but also to share what he experienced with other people facing the same problem, he created on Facebook in March 2021 the "Long COVID: Greek Support Team" which now numbers 2.500 members. The Group, which is the only one of its kind in Greece - there is only one other that deals exclusively with aspiration and anosmia -, has become a member of international organizations for long COVID, while since last December the " Association of Patients with Long COVID "(those interested can visit it on the website longcovidgreece.gr). "We have already met twice with the Minister of Health and an agreement has been reached for the establishment of two reference centers in our country for Long COVID - one has already started its operation at the" Evangelismos "hospital and the second is organized at the Papageorgiou hospital in Thessaloniki" .

Study - guide

The important "pool" of patients of the Greek Long COVID Group was in fact the basis for conducting the first study in our country concerning people with Long COVID in the community - the publication of this interdisciplinary study, whose main author was the Associate Professor of Pulmonology of the National and Kapodistrian University of Athens (EKPA) in the Pulmonology and Respiratory Insufficiency Unit of the AD Clinical Intensive Care of the "Evangelismos" Hospital lady Friday Katsaounou (photo left), expected soon in the review "Journal of Personalized Medicine".

The researchers note that an estimated 3% -12% of people worldwide infected with SARS-CoV-2 have symptoms 12 weeks after the initial infection - and this is defined as long-term COVID, which has been officially recognized as new. syndrome by the World Health Organization in 2021. The study included 208 patients with prolonged COVID aged 18 years and older (8 out of 10 were women) who answered a special questionnaire - the majority (68,8%) had not been treated ( in fact, only 1,3% of the respondents had been admitted to the ICU) and had been diagnosed with persistent symptoms more than six months ago (66,8%).

"Equilibrium" of symptoms

Eighteen different symptoms, most notably fatigue, tachycardia, dyspnoea and parsimony, were reported by both patients treated with COVID-19 as well as those who were not hospitalized. The authors state that "It was remarkable that patients with mild symptoms in the acute phase of the infection suffered from the same persistent symptoms as those who were hospitalized." Specifically based on the findings, 68,5% of patients who had not been treated continued to experience fatigue, 16,8% dyspnea, 28,7% inability to concentrate and 28% tachycardia, even after six months or even one year after diagnosis. Skin symptoms were also common, mainly prolonged hair loss but also acne, psoriasis, rash.

Researchers write that "Most of the symptoms as described by the patients seem to be related to the nervous system - 75% of the participants had at least one neurological problem months after the infection." They added that almost 78% of participants reported musculoskeletal problems which were 8,7 times more common in hospitalized patients than in those who had a mild acute phase of the disease.

It is emphasized that 73,6% of the respondents were vaccinated and 26,4% unvaccinated. Among those vaccinated, only 20,4% reported improvement in the symptoms of prolonged COVID after vaccination.

More than 200 symptoms of prolonged COVID have been reported to date.

Incomplete information of doctors

Regarding rehabilitation for long-term COVID, 51% of patients had not enrolled in a rehabilitation program. In fact, only 12% were monitored in a public hospital for the treatment of the syndrome. More than half of the respondents were not regularly monitored by a doctor while three in ten were monitored by private doctors - it is worth noting that 42,3% had visited as many as 10 different doctors to find a solution to their symptoms and 47,6% had spend at least 500 euros on doctors. And in all this, many doctors, always based on the answers, were not aware of the long COVID - in fact, 46,6% of patients answered that the doctors they visited had no specific knowledge about the syndrome.

In conclusion, the researchers emphasize that doctors' knowledge about the effects of Long COVID seems to be several times small, while the treatment options that have to incorporate targeted rehabilitation programs are either not available in our country or are not in the management plan of patients with long COVID. They conclude by emphasizing that given that long COVID is a multisystematic entity, a holistic approach to its treatment is needed that will include interdisciplinary teams for the diagnosis and treatment of the syndrome.

Reference centers

For all these reasons the creation of the first two reference centers for Long COVID in our country "It is a necessary step to alleviate the many patients currently suffering" says to KIMA-Science to BIMA-Science (photo on the left), creator of the interdisciplinary Post Covid Clinic of "Evangelismos" that accepts patients and non-patients, who is also the head of the Reference Center for Long COVID in "Evangelismos". As he adds, the doctors together with the Patients' Association have found "favorable ears" in the Ministry of Health that shows a strong desire to help and cover the (many and specialized) examinations that these patients need. The professor even informs us that the overall proposal of the Patients' Association concerns the creation of seven reference centers for long COVID in the country (2 of which are pediatric).

According to Mrs. Katsaounou "It is important that through the referral centers there will be an interdisciplinary approach of the patients and their submission to specialized examinations. For example, in Evangelismos, patients are tested for dyspnea by ergospirometry, a test that is similar to the heart fatigue test but studies respiratory and metabolic parameters at the same time to reveal the cause of the dyspnea. Also as time goes on we learn how we have to conduct even the conventional examinations. A patient e.g. with orthostatic tachycardia shows a normal cardiogram when lying down but the cardiogram is abnormal when standing and our cardiologists know this now. The journey of our knowledge about the long COVID is. Long and is constantly enriched ".

Instructions post COVID

In terms of patients who have just recovered from COVID-19, next everything they read about Long COVID causes anxiety about whether it can knock on their own door. The teacher therefore advises patients who show persistent symptoms, even if their illness was mild in its acute phase. "To visit their family doctor one month after the illness, who will examine them and subject them to a basic laboratory and imaging test. "If pathology is found or the symptoms persist after the third month, patients should be referred to appropriate structures."

"Soul" of the second reference center organized in Thessaloniki is the neurologist, doctor of the Aristotle University of Thessaloniki, director of the Neurological Clinic of Papageorgiou Hospital. Georgia Deretzi (photo left). As Mrs. Deretzi notes "Long-term COVID syndrome is a new major challenge for the medical community. We have seen that a percentage of 10% -12% of the patients we treated, who number 4.900, show continuous or new symptoms from one to six or more months from the acute phase of the infection. The Central Nervous System appears to be the main target of long-term COVID, which is affected by the release of inflammatory factors such as cytokines. Common post COVID conditions include foggy thinking, mental retardation, cognitive deficits, sleep disorders, dizziness, tinnitus. The impact on quality of life is very large - data show that 2/3 of patients report dysfunction in their professional and social life ".

It is not uncommon for persistent symptoms like these to be attributed to psychological factors. "And yet there is a recording of them through neurological examinations" points out Mrs. Deretzi. "For example, a test that requires special software shows a reduction in brain volume in patients with Long COVID - something that is not seen on MRI."

Long COVID is a real problem, the expert emphasizes. "The key for doctors is to listen to patients who do not 'take' the symptoms out of their minds but suffer, and to develop the right tools for their diagnosis. It also requires proper information of the scientific community and the public and tracking of cases in primary health care so that they can be referred to the appropriate centers. "


Rehabilitation of patients and truth

An important asset for patients with long COVIDs to return to their normal lives as much as possible is rehabilitation - which, as the Greek study showed, is probably the last resort.

As the doctor of Physical Medicine and Rehabilitation at the 414 Military Hospital of Special Diseases, Mr., tells BIMA-Science. Antonios Kontaxakis "Rehabilitation seems to be lagging behind in both those who have been mildly ill and those who have been hospitalized. Recently, I was only referred to two or three people who had a mild illness and had symptoms of long COVID, and also from my search for hospitalized patients I noticed that while 40% continued to have symptoms in the four months after the illness, only 8% had referred to rehabilitation services. Although there is now a protocol for rehabilitating patients, there does not seem to be any awareness of the issue from acute care physicians. However these individuals need rehabilitation by specialists, they need to receive specific self-management instructions in order to achieve a graduated return to their daily routine. "And that also applies to mildly ill people."

The following words of Mrs. Iasonidou are probably the best epilogue on a subject of which, as everything shows, probably only the first preface has been written: "When in the 19th century thyroid diseases were not known and there was no thyroxine treatment, these patients were considered psychiatric cases. This, as history has shown, did not mean that thyroid disease was non-existent. "The same thing is happening now with the long COVID, which exists and science must find a way to diagnose and treat it for the good of millions of patients worldwide and consequently for the viability of the health systems themselves."

National Theater program helps patients

The art can be the "balm" for patients with long COVID in our country, as evidenced by a pioneering program conducted by the National Theater in collaboration with the Long COVID clinics of the hospitals "Attikon", "Sotiria" and "Evangelismos". This is a free online lab for retraining the breathing and voice of Post and Long COVID patients who experience shortness of breath, dysphonia and anxiety. The workshop, which has already completed two cycles and now begins the third, was designed and coordinated by Ms. Angeliki Toumpanaki (photo left), PhD in Molecular Oncology, vocalist, voice trainer and member of the interdisciplinary team Voice Mentoring for the rehabilitation of patients with vocal disorders . As Dr. Toumpanaki explains to VIMA-Science, "THE NATIONAL LABORATORY workshop is inspired by the ENO Breathe program of the English National Opera, in collaboration with the National Health System (NHS) of Great Britain, the results of which are impressive, providing important physical and emotional support to patients experiencing Long COVID symptoms, and demonstrating that art and science can work great together.

The workshop uses as a starting point music from around the world, vocal games, vocal techniques and a specially designed exercise book for participants which they practice in their own time, as a self-management tool.
Dr. Toumpanaki informs us that so far 43 patients aged 27-70 years (26 women and 17 men) have completed the program. "Patients noticed a significant improvement in symptoms such as shortness of breath, dysphonia, muscle aches, cognitive functions while noting that the exercise book and the process of singing offered them mental and physical well-being. In fact, the last laboratory of each cycle is done live and there all the patients join their voices in a choir with the common singing offering them great joy ".

One of the patients who have completed the laboratory is 35-year-old Tassos Theotokis who fell ill in the first wave of the pandemic. "My illness was mild. However, I then developed shortness of breath and heaviness in my chest, which for almost two years now have been my permanent "companions". I heard about the National Theater workshop on the radio and declared my participation. The workshop offered me a lot. I now live without shortness of breath. And contact with other patients who also had to fight with the remnants of COVID was a redemptive process for all of us. "

Those interested in the 3rd cycle of workshops starting tomorrow Monday can contact Ms. Giota Baka, tel. 2107001469 (ext. 317), e-mail: gmpaka@nt.gr.

Same symptoms in mild and severely ill

The experience of Post Covid Clinics of public hospitals

The main residual symptom in people who have had COVID pneumonia is shortness of breath.

To date, the Post Covid Clinics of public hospitals are mainly engaged in the follow-up of patients treated with severe COVID. Here is what the experience so far shows, as their managers tell us.

The Post COVID Clinic of the 2rd Pathological Clinic of EKPA, which operates in collaboration with the 2020nd Pulmonary Clinic at Sotiria Hospital, has received about 600 patients since its establishment in May 5, informs us the pathologist-infectious disease, assistant professor Mrs. Garyfallia Poulakou (photo left). Most patients who go to the doctor "show shortness of breath on fatigue, chest pain, instability of blood pressure, headaches and disturbances in concentration. Over time the symptoms subside, however there is a percentage of about 1% in whom the symptoms persist after three months of illness or are new. About XNUMX% of the patients we follow show symptoms for more than a year ". As the professor notes, Long COVID is an important and real problem that also affects people who have had a mild illness. "Some of the oldest cases we see involve people who have a mild illness. In fact, mildly ill patients do not appear to have different symptoms of long-term COVID from those treated - the onset of persistent symptoms does not appear to be associated with the severity of the disease.

The professor of Pulmonology of EKPA, president of the Hellenic Pulmonary Society and head of the Post COVID Clinic of the Pulmonary Clinic at Attikon Hospital Mr. Stylianos Loukidis (photo left) states that "at the Post COVID Clinic we have 90 people who had all been hospitalized. The main residual symptom in people who have developed pneumonia due to COVID is shortness of breath in fatigue. "Psychological disorders such as anxiety and depression are also recorded, especially in those patients who have been admitted to the ICU."

The professor of Pulmonology and director of the University Pulmonology Clinic of the University General Hospital of Heraklion, Mr. Nikolaos Tzanakis, notes that in the Post COVID Clinic of PAGNI, which has been visited by more than 80 people, "there are some patients whom we follow for months" . In terms of treatment, "we give them regimens that we have seen that can benefit them. There is no specific treatment - there are some treatment options under test, as well as some instructions for administration mainly corticosteroids.

Mr. Athanasios Zacharias, pulmonologist, curator at the Respiratory Insufficiency Clinic of G. Papanikolaou Hospital in Thessaloniki, notes that the Post COVID clinic of the Hospital also accepts patients who had a mild illness. "Most of the patients we've seen lately have been mildly ill or asymptomatic - and their main persistent symptom is fatigue, which is very difficult to manage, but also inappropriate tachycardia. That's why we have an interdisciplinary team - we work closely with neurologists but also with occupational therapists and physiotherapists. " Mr. Zacharias emphasizes that most patients with persistent symptoms who arrive at the doctor's office are unvaccinated.


I continue to live in her shadow Covid

The 41-year-old clinical psychologist Faye Vassiliadou "Met" with SARS-CoV-2 last May. Here is her story:

"I got sick 10 days before my vaccination appointment. Until the day I got sick I was a person who exercised regularly, who worked 12 hours a day, a healthy person. Coronavirus disease was not easy, but I did not have to go to the hospital. I had bone pain, chest pain, fever, borderline oxygen. The fever finally went down after eight to nine days, however I continued to have exhausting symptoms as "companions". At first I could not even speak for 30 seconds and I was panting, it was a feat for me to go to the bathroom, I had stomach pains, I was constantly lying down. In 10 days I could not even go down a ladder, it was impossible for me to drive since my brain felt betrayed. I had orthostatic tachycardia, I was going to work and I did not understand what I was reading, in the supermarket I could not even keep the things I was catching on the shelves. I slept endlessly and in the morning I was a corpse. In the 3rd month of the disease I experienced terrible insomnia and severe chest pain. Until then I thought my subject was psychological but I decided to enter the examination process after seeing the situation prolong. I underwent a series of tests, however there were no clinical findings. And yet I was constantly experiencing pain - in my chest, in my back, I was still unable to walk for even five minutes. For eight whole months I was living with symptoms and as the doctors did not have to give me any specific treatment, I was taking supplements, following a diet under the supervision of a nutritionist in order to strengthen my body. The vaccine was the catalyst for me - after the second dose I felt much better. I'm back now, a year later, but not completely. THE Covid but it continues to "haunt" my life. If I get tired even a little more one day the next I am a raccoon. I have changed my hours as I can no longer work long hours. What bothers me most of all is that I am constantly thinking as a patient, I plan my whole life with the sole aim of not recurring. THE Covid he has changed me and continues to dominate my thoughts and actions ".


The "key" is the patient-doctor trust relationship

Dr. Stamatoula Tsikrika, pulmonologist at Sotiria Hospital, President of the Hellenic Pulmonologists Association

In a disease that we all still learn and whose dynamics we experience in real time, the newly formed patient relationship with Long COVID and health professional is very special and interpersonal, with constant communication and exchange of knowledge and views.

The patient with Long COVID must trust his treating physician who is committed to providing his services with the utmost ethics and scientific knowledge. It is important to understand that medical misinformation, Internet "medicine" of dubious credibility, dishonesty, lack of respect, courtesy, non-compliance and trust in the treating physician cause more confusion and stress than help solve the problem.

The treating physician, who is often part of an entire interdisciplinary team, must inform in detail about the next steps and the treatment plan of the syndrome and through a mutually beneficial cooperation to make informed decisions for the benefit of the patient. In addition, he must devote the required time and due diligence, respecting medical confidentiality, the required level of objectivity, courtesy and empathy.

No one knows for sure if we are at the end of the pandemic, but it is certain that the beginning of the reconstruction of the patient-health professional relationship has begun with a new dynamic regarding a disease which the doctor has probably lived in his "skin" having already and the same patient.