News from Southeastern Europe

Wyva · Apr 26, 2022

Edit: Countries that are included in this thread in alphabetical order:

Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Cyprus, Greece, Kosovo, Moldova, Montenegro, North Macedonia, Romania, Serbia, Slovenia

I used the broadest definition of SEE here but there are overlaps with other regions and some of these are more cultural, not so much geographical groupings, so I'm open to changing the list of the countries belonging to this group if someone feels it is not appropriate.
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There is a sizeable ethnic Hungarian minority in Serbia too who have their own news sites in Hungarian, so I can read them - I get the Google alert notifications from those too. (And the same is true for Romania and Slovakia too - the latter is of course not in SEE.)

So far I've got nothing on ME/CFS at all but even long covid is something that extremely rarely gets an article, at least in the Hungarian language media of these countries. Of course I can't really get the whole picture through this lens but at least we can get some snippets.

These are the two items about long covid from Serbia I've seen this year.

From January: A post-covid counseling program is being launched in pharmacies across Serbia

Google translate from Hungarian:

The Serbian Chamber of Pharmacy has launched a post-covid counseling program that will be available in pharmacies across Serbia in the coming period.

Tatjana Šipetić, director of the Serbian Chamber of Pharmacy, told RTS that 80 percent of the more than 1,600,000 people infected so far may have some form of post-covid symptom and need help.

“From our environment and the literature we follow, we see that many have not even noticed that some of the symptoms are related to the coronavirus,” Šipetić said.

He claims that some have closed themselves completely because they think something terrible has happened to them and their lives have changed because they have memory problems or their hair has started to fall out.

He says the pilot project began on December 5 with an online training for pharmacists from different cities in Serbia.

“They had the opportunity to look at the underlying clinical symptoms of long-term post-covid syndrome and learn how they can approach the patient and how they can help reduce the intensity of the symptoms,” Šipetić said.

“I would never take on the role of a doctor. There are conditions that require you to see a doctor, but pharmacists will be able to make a recommendation, ”he added. (FoNet, RTS)
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The other one is from today and is actually a very short news item I saw in Hungarian media today (so this is not from the minority media):

Post-Covid surgeries have opened in Serbia

Google translate from Hungarian:

Cardiovascular disease, diabetes or even depression can be a long-term consequence of coronavirus infection, and post-Covid surgeries have been set up in Serbia to treat them.

Cardiologist Petar Seferovic told Serbian public television on Monday that while the epidemic was coming to an end, the coronavirus infection also had more lasting consequences. As he said, doctors have found that the coronavirus attacks the weakest parts of the body, leading to diseases that used to be hidden and the infection accelerated their development.
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So it looks like to me that they were quite slow to deal with long covid and also mostly see it as primarily consisting of noticeable organ damage and mental health issues like depression. (The latter part is the same in Hungary and Slovakia too.)

Peter Trewhitt · Apr 25, 2022

Wyva said: ↑

There is a sizeable ethnic Hungarian minority in Serbia too who have their own news sites in Hungarian, so I can read them - I get the Google alert notifications from those too. (And the same is true for Romania and Slovakia too - the latter is of course not in SEE.)

So far I've got nothing on ME/CFS at all but even long covid is something that extremely rarely gets an article, at least in the Hungarian language media of these countries. Of course I can't really get the whole picture through this lens but at least we can get some snippets.

These are the two items about long covid from Serbia I've seen this year.

From January: A post-covid counseling program is being launched in pharmacies across Serbia

Google translate from Hungarian:

The other one is from today and is actually a very short news item I saw in Hungarian media today (so this is not from the minority media):

Post-Covid surgeries have opened in Serbia

Google translate from Hungarian:

So it looks like to me that they were quite slow to deal with long covid and also mostly see it as primarily consisting of noticeable organ damage and mental health issues like depression. (The latter part is the same in Hungary and Slovakia too.)
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Thank you for posting this information.

Hutan · Apr 26, 2022

http://www.europeanmealliance.org/index.shtml
Linking EMEA (the European ME Alliance) here.

They currently have pages with contact details for
Croatia: ME Association in Croatia
Serbia: Association of People with Chronic Fatigue Syndrome in Serbia
Slovenia: Zebra Patients' Association

Hutan · May 1, 2022

Linking the EMEA News thread: there's a webinar coming up focused on improving things in the Eastern European part of the world.

Andy said: ↑

"The next roundtable webinar on Myalgic Encephalomyelitis (ME/CFS) in Europe will be held on Friday 27 May 14:00 CET.

This webinar will try to begin the process of raising awareness of ME in Slovenia, Croatia and Serbia, and the Balkan countries in general, in order to improve research and services for people with ME, and thereby overcome the inherent stigma and misinformation about the disease that still exists."
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Wyva · May 11, 2022

I saw this today on the Slovenian ME/CFS, fibro etc Facebook page. They will talk about the diseases on a regional radio station for ME/CFS Awareness Day.

Google translate:

ZEBRA SOCIETY REMINDS OF UNDER-KNOWN DISEASES

Tomorrow, May 12, marks the day of awareness of fibromyalgia and myalgic encephalomyelitis. The Zebra Society is based in Postojna, where patients with these rather poorly researched diseases come together. According to the president of the association, Barbara Gros, the association offers all its support to its members, and although the lives of patients are very stressful, they meet, share experiences and go to rehabilitation together.

The two diseases are very similar, although fibromyalgia is a rheumatic disease, and myalgic encephalomyelitis, which is often (wrongly) described as chronic fatigue syndrome, is a neurological disease. Although the cause of the disease often remains unknown, they mainly observe a connection with rheumatic diseases, connective tissue diseases, hypersensitivity and allergies.
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Wyva · May 12, 2022

Here is the full programme of the upcoming webinar "ME/CFS and post Covid in the Balkans" organized by EMEA:

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Wyva · May 16, 2022

Article from Serbia. Politika seems to be one of the major news sites in the country.

Chronic fatigue as a consequence of corona

Not everything is factually correct in the article but the president of the country's ME/CFS association is one of the people talking about ME/CFS.

Google translate:

More and more people are suffering from chronic fatigue syndrome, but they are often returned from health facilities, considering them hypochondriac.

Exactly how many people in Serbia suffer from chronic fatigue syndrome is not known because there is no register of patients, but the fact is that more and more people have this problem that the health system often does not recognize.

On International Chronic Fatigue Syndrome Awareness Day, which is held under the slogan "Head Wants, Body Can't," both patients and doctors warn that the Kovid 19 pandemic has only increased the number of people dealing with the symptoms of the syndrome. it happens that they are sent home from some health institutions because they think that it is not something worth paying attention to.

The symptom of this syndrome is inexplicable fatigue that does not pass even after a sleepless night and lasts a very long time, and there are arrhythmias, tachycardia, palpitations, deconcentration, disorientation, sensitivity to light and sound, frequent fever, indigestion, muscle aches and joints…

Ina Ignjatović, president of the Association of Patients with Chronic Fatigue Syndrome, says for "Politika" that the pandemic of the coronavirus virus influenced more to be talked about and thus highlights the disease that members of this organization fight every day.

- We have so many symptoms that the syndrome brings with it that we are sometimes ashamed to talk about it. Healthcare professionals did not see this as a serious illness. We are often told that we are lazy and that we have nothing. It takes a long time to get to the diagnosis. In health institutions, they do analyzes for us and they are good, such as an ultrasound examination or an ECG. And we still feel bad. The doctors tell us that we have nothing and that we should go home, take a sedative and rest. They do not understand that most of us have variations in blood pressure and the problems that this phenomenon causes as part of the syndrome. Not to mention how difficult it is for people with the syndrome who get covid. That brought them back a few steps - Ignjatović states.

Many scientists in the world believe that the fatigue that occurs due to the disease of kovid 19 belongs to this syndrome. Other viruses also cause chronic fatigue syndrome, but the crown puts people in a state of complete fatigue faster, due to which they cannot perform their daily duties.

- Not enough is known about this problem. We plan to have one webinar in a month, together with associations from Croatia and Slovenia, through which we will educate doctors in three countries. We are a member of an international organization and we try to follow world trends - Ignjatović points out.

Professor Dr. Branislav Milovanović, President of the Association of Neurocardiologists of Serbia, who is one of the 23 experts dealing with this issue, emphasizes that now one of the issues they deal with the most is dedicated to postcovid syndrome and its connection with chronic fatigue.

- We have several gatherings in the coming period dedicated to this topic, and a very important meeting will be held on May 18. I will present the results of the studies we have come to. We believe that there is no major difference between patients with postcovid syndrome and those diagnosed with chronic fatigue syndrome. Kovid has contributed to an increase in the number of patients who come to us due to rapid fatigue and tiredness. Such a condition can lead to disability. We now have an army of people asking for help. At the end of the month, the EU will organize a large round table in order to educate both patients and doctors about this problem - adds Dr. Milovanović.

Our interlocutor reveals that patients with a mild form of kovid can feel chronic fatigue and therefore cannot function, which is a big problem.

- At the examination, we determined that their heart function is preserved, and the patients cannot even walk, they just lie down. The problem is actually at the cellular level and can only be determined by neurocardiological testing. My experience shows that it takes seven months to two years for a patient to return to a functional state. However, many people do not understand how serious the condition of these patients is, so they consider them hypochondriacs. In fact, it is a serious disease that incapacitates - warns Dr. Milovanović.

Chronic fatigue threatens vital organs, brain and heart, and affects the whole organism, and it is also called myalgic encephalomyelitis. In October 2019, the World Health Organization gave the code of this disease R 53.8, which is treated within the neurological group and disorders.
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ME/CFS Skeptic · May 21, 2022

Wyva said: ↑

Article from Serbia. Politika seems to be one of the major news sites in the country.
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Sounds interesting.

Thanks for keeping us informed about the ME/CFS situation in eastern European countries @Wyva. Much appreciated.

Wyva · Jul 12, 2022

This article was posted on Facebook by the Serbian ME/CFS association. An interview with prof Branislav Milanovic about the disease:

Google translate:

What is chronic fatigue syndrome and why it cannot be cured by rest

Patients are often referred to a psychiatrist, and this is the biggest misconception, because it was considered that we do not have an organic basis, but that there is a psychological problem. In this way, the patients' condition generally worsened. Everything often ended with resignations, divorces and disruptions in social relations - says prof. Dr. Branislav Milovanović

Chronic fatigue syndrome ( Chronic Fatigue Syndrome ) or myalgic encephalomyelitis (Myalgic Encephalomyelitis) is manifested by severe exhaustion, and in the most severe forms of the disease, patients are bedridden . This is a disease that occurs in young people, because of it marriages fall apart, they lose their jobs. Chronic fatigue syndrome under code R-53.8 is recognized as a disease by the World Health Organization.

Chronic fatigue syndrome is a devastating and multisystemic disease
The condition is often misdiagnosed, so patients are sometimes treated incorrectly or take therapy on their own for many years.

- Chronic fatigue syndrome is manifested by muscle pain, cognitive disorders. According to the opinion of most scientists, this is a disease that is on the same level as cancer or HIV infection, and in more severe stages, it is more serious. This is a devastating and multisystemic disease for which there was not enough understanding until now - says Prof. Dr. Branislav Milovanović , one of 23 experts at the level of the European Union who deals with the treatment of chronic fatigue syndrome.

How does the disease arise and how is it diagnosed?
Prof. Dr. Milovanović was the first in our country to start dealing with neurocardiology, he introduced a number of diagnostic methods, he is a member of the European Academy of Sciences and Arts, and he has been dealing with chronic fatigue syndrome for more than 20 years.

- It has been noticed that the disease occurs after some infection, when the patient does not recover after 15 or 20 days. Diagnostics does not find anything that could indicate the existence of a disease, because the main problem is at the level of the cells, at the level of the mitochondria organelles that produce energy. If we did a skin or muscle biopsy, we would detect the disease, but you can't biopsy everyone. The only way to prove this disease is to test the autonomic nervous system - says Prof. Milovanović.

Serious damage
The problem, however, is that there are few autonomic nervous system testing laboratories in the region. Laboratories exist in KBC "Bežanijska kosa", Klinik "Rebro" in Zagreb and KC Ljubljana and in Banja Luka. Prof. Dr. Milovanović explains that experts can test the autonomic nervous system and find serious damage.

- You find, for example, a complete disorder of blood pressure regulation. Accompanying symptoms are pain in the muscles and joints , in 80 percent of cases there are problems with the gastrointestinal tract. Neurological outbursts, muscle spasms, tingling sensations, weakness in the arms and legs, tremors, usually trembling of the fingers are possible - says Dr. Milovanović.

Three basic symptoms
Over time, patients notice that they lack strength. The state of chronic fatigue disrupts everyday life. There is, however, a certain number of symptoms, symptomatology and conditions that must be met in order to establish a diagnosis.

- The first is fatigue that lasts longer than 6 months. Then a drop in energy during some physical effort, the third very important symptom is a sleep disorder. At the beginning of the infection, there is great drowsiness, and later there is a sleep disorder, so patients wake up during the night and cannot sleep - explains prof. Dr. Branislav Milovanović.

There are also side symptoms in the form of cognitive disorders, most often problems with memory, concentration, difficult speech. Disturbances in the function of the autonomic nervous system are also manifested in the form of loss of consciousness, some patients feel dizzy when standing up. Heart palpitations , ringing in the ears, dizziness also occur .

The dead end of chronic fatigue syndrome
In almost 80 percent of patients, anxiety, phobia, and depression are also registered, and that is what, as pointed out by Prof. Dr. Branko Milovanović is actually a dead end.

- These are psychological disorders that some patients had earlier, and in some they appeared with the onset of this disease. Since diagnostics do not find anything, patients are then often referred to a psychiatrist, and this is the biggest misconception, because it was thought that we do not have an organic basis, but that there is a psychological problem. In this way, for the most part, the condition of the patients worsened, often ending in resignations, divorces and disruptions in social relations - says Dr. Milovanović.

Alarming data
Prof. Dr. Milovanović states that the problem is also in the education of doctors, who mostly could not learn about this disease during their basic studies. Dr. Milovanović says that, nevertheless, progress is being noticed and that there are young experts who want to devote themselves to the treatment of this disease. At prof. A student from Slovenia graduated from Milovanović on the topic of chronic fatigue syndrome, and the professor is the author of the chapter on chronic fatigue syndrome in the textbook from which students from Osijek will gain knowledge. When it comes to chronic fatigue syndrome, Dr. Milovanović says that all this is necessary, because the epidemiological data are alarming and very worrying.

- In the United States of America, about 2 million citizens already have this diagnosis, but it is considered to be only the tip of the iceberg. In Europe, 2 million people have this disease, and the seriousness of the problem is evidenced by the fact that the European Parliament passed a resolution to urgently establish funds, educate doctors and take action - warns prof. Dr. Branislav Milovanović.

A few weeks ago, a European Union round table was organized for the countries of the Balkans. A working group was formed at the meeting attended by the Assistant Minister of Health Dr. Jelena Janković on behalf of the Ministry of Health of the Republic of Serbia.

Post-covid syndrome that turns into chronic fatigue syndrome
The European EMEA network of patients and doctors believes that in Serbia, about 30,000 people have chronic fatigue syndrome, which was presented at the round table of the Balkan patient associations a few weeks ago.

- The post-covid syndrome that is now appearing and turning into chronic fatigue syndrome is worrying. Based on European data, 10 to 30 percent of patients who have post-covid syndrome enter chronic fatigue syndrome. Then the question arises, is it the same disease? For the autonomic nervous system it is the same, we did not find any differences. But, if 10 to 30 percent of post-covid patients enter chronic fatigue syndrome, that means you get a minimum of 30,000 more new patients. These are serious numbers and our clinics are flooded with patients who have passed covid 19 - says Prof. Dr. Branislav Milovanović.

The doctor explains that among post-covid patients, there are those with a diagnosis of complications of an acute infection.

- These are patients who have had a heart attack, stroke, thrombosis, have pulmonary fibrosis. When you perform diagnostics, you see the presence of inflammation of the heart muscle, arrhythmia. With the largest number of post-covid patients, however, you do not find anything and that is the group that is the largest, and those are the patients who enter chronic fatigue syndrome - emphasizes prof. Milovanović.

Dormant viruses and stress
Viruses are one of the main causes of this disease, it is assumed that Epstein - at least a virus is the cause of this disease. Prof. Milovanović, however, based on his decades of experience, believes that herpes viruses are behind everything. As he explains, these are mostly dormant viruses, the appearance of which provokes some stress, which is also a trigger for the appearance of the disease.

- Science has not yet determined exactly why the disease develops in some people and not in others. There are patients who have congenital mitochondrial damage, which is inherited from the mother, so the disease usually develops during puberty in female children. This disorder of cells at the level of mitochondria is congenital, and there is also an acquired disorder where the peak occurs after puberty or after the age of 30 - explains prof. Dr. Milovanović.

Who are the most difficult patients?
Due to chronic fatigue syndrome, young people become disabled. Prof. Dr. Branislav Milovanović says that there are four stages of the disease.

- In the fourth degree, a person is bedridden, literally unable to get up, young people are unable to take a shower for six months, these are the most difficult patients. The third degree is when the patient is unable to work and has to leave work. There are also two milder forms when the functionality is disturbed - emphasized Dr. Milovanović.

Why is it important to detect the disease as soon as possible and start treatment?
European countries are conducting numerous studies on the topic of chronic fatigue syndrome. In Norway, patients diagnosed with this disease are allowed reduced working hours. When it comes to healing, Doctor Milovanović says that the data are, unfortunately, disappointing.

- Only 5 to 10 percent of patients are cured, and these are mostly younger people who are treated immediately. If the patient has had the disease for 5 or 10 years, then the cure is very difficult. About 64 percent of patients can return to a functional state, but feel discomfort. It is important, however, to fight so that the disease does not develop further. According to my experience, depending on how long the disease lasts, it takes a minimum of three months to two years to return to a functional state - says Prof. Milovanović.

Multidisciplinary treatment
The treatment is multidisciplinary, it is necessary to know how much physical effort the patient can be exposed to, in order to preserve his capacities. Prof. Milovanović says that the degree of damage to the autonomic nervous system is first tested.

- After testing, I have to see in which direction I can go. It is necessary to determine which infection is behind the disease. The patient has a mineral and vitamin deficiency , so supplementation must be applied . Depending on the degree of the disease, antiviral and antibacterial therapy is sometimes used. If necessary, antibiotics are given. Amino acids, peptides, antioxidants are sometimes used, but the main treatment is mitochondria, coenzyme Q 10 is one of the main drugs used to improve energy production in mitochondria - says prof. Dr. Branislav Milovanović.

Prof. Dr. Branislav Milovanović was the first to introduce the new scientific discipline of neurocardiology in the Republic of Serbia, for which reason he became a member of the European Academy of Sciences and Arts at the suggestion of President Felix Unger. An international congress on neurocardiology is held in Serbia every year, and prof. In 2019, Milovanović also organized the World Congress on Non-Invasive Cardiology, making Serbia one of the leading centers in the world for this issue. Dr. Milovanović is the founder and first president of the Section for the Autonomic Nervous System of the Serbian Medical Society . Since May 2005, the section has been a member of the European Federation for the Autonomic Nervous System as the first national association outside the European Union.
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Hutan · Jul 12, 2022

It was going pretty well until the treatment section.

How he reconciles this sort of cure and improvement rate (which look very very much like the natural incidence and effect of ME/CFS):

Only 5 to 10 percent of patients are cured, and these are mostly younger people who are treated immediately. If the patient has had the disease for 5 or 10 years, then the cure is very difficult. About 64 percent of patients can return to a functional state, but feel discomfort.
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with the special multidisciplinary treatments that only Prof Milovanovic offers, I don't know. But two months to two years of treatments sounds very expensive.

It is important, however, to fight so that the disease does not develop further. According to my experience, depending on how long the disease lasts, it takes a minimum of three months to two years to return to a functional state - says Prof. Milovanović.
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Wyva · Feb 24, 2023

Posted today on Facebook by the Serbian ME/CFS page I follow (translated by Google):

Important❗️❗️❗️
On the initiative of the Association of Chronic Fatigue Syndrome and Crisis of Consciousness, on February 24, 2023, a meeting was held with Assistant Minister, Dr. Jelena Janković, in the premises of the Ministry of Health, Public Health Sector.
On that occasion, the president of our association, Ina Ignjatović, pointed out the importance of recognition of problems by health workers, which sufferers of chronic fatigue syndrome have, as well as questions related to their right to sick leave.
It was also agreed that in the coming period, a Plan for continuous medical education will be prepared, which will have the task of raising the awareness of the professional public about the recognition of Chronic Fatigue Syndrome.
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This was all, but I guess we'll probably find out more soon. (Don't ask me what "crisis of consciousness" exactly is. FB, Google Translate and ChatGPT all translated it the same way.)

Sid · Feb 25, 2023

Wyva said: ↑

This was all, but I guess we'll probably find out more soon. (Don't ask me what "crisis of consciousness" exactly is. FB, Google Translate and ChatGPT all translated it the same way.)
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Loss of consciousness. Dizziness, syncope and the sorts of symptoms we would call dysautonomia.

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