News from the Visegrád Countries - Czech Republic, Poland, Slovakia and Hungary

Just a bunch of unrelated long covid research news from Hungary that I've collected in the past couple of weeks.

1. The University of Debrecen receives roughly a billion forints from the Ministry of Innovation and Technology National Research Development and Innovation Fund to study the full disease spectrum of covid, including long-term sequelae. This uni was the first one to set up a long covid clinic in the country. They are going to build an epidemiological database based on the data of 700 people with long covid, 7000 people who had covid but recovered and 150 000 people who were vaccinated against covid and who they already have in their database. It will start with a retrospective analysis and longitudinal prospective studies will be built on it (clinical, immunological, socioeconomic, quality of life). They would like to identify risk factors and be able to choose more effective medication.

However, it looks like they are focusing on symptoms in connection with the lungs and heart. There is a lot of confusion about long covid here and most doctors seem to think it means those identifiable organic problems. However, they mention they want to study post-covid arrhythmias and I know that some doctors know about POTS at that clinic, so POTS may have a chance in these studies. (POTS seems to have a tiny bit better acceptance here than ME/CFS, I hear about it from cardiologists at these long covid conferences from time to time. However, I've never actually seen a LC patient with a POTS diagnosis in real life here, so this recognition is probably still rare.)

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2. An upcoming event: Young Pediatricians' 20th Conference. It has a few abstracts (PDF) on long covid in children and it is important, since Péter Krivácsy and Attila Szabó are the two doctors from Semmelweis University who managed to get funding from the Academy of Sciences for their research (long-term followup of children with LC) and this must be that.

Google translate:

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3. Andy posted this study a few weeks ago: The associations of long-COVID symptoms, clinical characteristics and affective psychological constructs in a non-hospitalized cohort, 2022, Ocsovszky
And I commented that one of the listed authors, Béla Merkely, rector of Semmelweis University might be the new person responsible for healthcare in Hungary. The good news is that it didn't happen, another person (I know very little about) got that position. Phew. This is important because Ádám Kósa MEP is going to talk to this person about adapting the NICE guideline in Hungary and about the fact that people with ME/CFS are practically just ignored here.

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4. There was a Hungarian article about this study: A Longitudinal Study of COVID-19 Sequelae and Immunity: Baseline Findings, 2022, Sneller et al, titled NO EVIDENCE HAS BEEN FOUND FOR LONG COVID SYNDROME, BUT SYMPTOMS MAY AFFECT ANXIETY WOMEN THE MOST

The first half of the article is as terrible as it sounds, however, the second half was pretty good, basically explaining why this may not actually be the case, quoting other examples from medicine, talking about how women are taken less seriously in medicine and mentioning a few studies that did find something in connection with covid (cognition, brain scans). I thought it was pretty good clickbait actually. It was published in a popular science-tech-economics kind of magazine.

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5. I've checked the Medical Research Council's website again and they approved this study:

Title: Measuring the quality of life of Post COVID / Long COVID patients in a non-interventional questionnaire clinical trial and comparing them with population reference values
Applicant: Semmelweis University
Supervisor: Dr. Zoltán Vokó and Dr. András Inotai

These people work for the Center for Health Technology Assessment at Semmelweis University.

 

A longer, in-depth article about one of the upcoming studies in connection with long covid that got funding from the Hungarian Academy of Sciences. This one:

- Effect of post-COVID-19 status on cerebral blood flow reactivity in physically active and inactive adults. Recognizing the role of sports in prevention / rehabilitation (Ákos Koller, Semmelweis University)

The people involved: Professor Ákos Koller, head of the Microcirculation Laboratories at the Faculty of General Medicine of the Semmelweis University and the Hungarian University of Physical Education and Sports, and Johanna Takács, a psychologist and sports psychologist, assistant professor at the Faculty of Health Sciences at Semmelweis University

Some excerpts with Google translate:

 

Interesting, but does this read as though the researchers are coming at the topic with a number of preconceptions that will get in the way of asking the right questions?

 

I also get that impression a bit.

As for fit people: There are plenty of young, previously very athletic covid long haulers in my group who are literally going crazy right now because they can't return to their workouts due to PEM (clearly delayed PEM with a wide range of symptoms). They all join my group and ask about how they could get rid of this, what's the way out, when and how can they really return to sports? They tend to expect there must be some trick somewhere, somehow. Then the other previously super-sporty people in the group (often long haulers themselves who have been ill for longer) tell them not to even think about doing any such thing for a while, because even when they thought they were finally well enough they still weren't and relapsed again.

 

I think this is an important issue, you also see it with young ME suffers too. For many people in Western Culture exercise is part of their sense of identity and going to the gym significant for their self worth and a significant leisure activity. I suspect some people need the right support to cope with reducing their activity.

 

An abstract for a presentation at the Congess of the Hungarian Society of Nuclear Medicine, titled Examination and follow-up of COVID-19 disease by brain PET / CT examination. It is about a study that seems to confirm the changes in the brain scans after covid, reported elsewhere, but they also mention a limiting factor. Google translate:

 

An abstract from the International Conference on Sports Science, coming from the Hungarian Defense Forces Medical Center, Aeromedical and Military Aptitude Research and Treatment Institute. Data based on 47 divers and parachuters with a median age of 36.

Effects of COVID-19 infection on physical performance

 

I've found a 25-minute long presentation from Dr Guth-Orji (from my previous post) on YouTube on the effects of covid on aviation safety.

She talks a lot about the various sequelae of covid and that it should be taken very seriously because almost every one of these can effect a pilot's abilities to fly safely. She mentioned various medical post-covid problems and symptoms, even problems with the eyes etc, so it was quite detailed. However, she didn't mention ME/CFS or PEM at all (only chronic fatigue as the most common symptom). She empasized that mental health issues are also present, I think she said something like 30% of the patients have some mental health issue and 30% of those is newly diagnosed and that this can happen in mild or asymptomatic cases too. So this was quite disappointing, because I expected military/aviation research to be more thorough about this due to the safety issues.

One thing that was new to me (which may not be new to others, I don't know) is that in military aviation (and this applies to divers and parachuters too) if you catch covid, you are not allowed to fly (dive etc) for at least 30 days at all. Afterwards you have to go through a complete medical checkup to see if you are fit for the job. She said in civil aviation this is nowhere near as strict, which is an issue.

 

Not much, just a couple of long covid studies that got ethical approval recently in Hungary:

Google translate:

Title: Detection of eye movement disorders in dizzy patients after Covid-19 infection and analysis of the data with artificial intelligence
Applicant: MMS One Zrt.
Study leader: Dr. Tamás T. László

(The applicant is an IT development company, the doctor seems to be an otorhinolaryngologist from the local university hospital)
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Title: Measurement of the quality of life of Post COVID/Long COVID patients in the framework of a non-interventional questionnaire clinical study and their comparison with population reference values
Applicant: Semmelweis University
Study leader: Dr. Zoltán Vokó and Dr. András Inotai

(They work at the Center for Health Technology Assessment at Semmelweis University, and are not psychiatrists.)
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Title: Identification of biomarkers using multiomic methods in post-COVID syndrome
Applicant: National Institute of Early Pulmonology
Research supervisor: Dr. Balázs Döme

(This is pulmonology though and whenever I hear their experts talk about long covid here (at the Academy's symposium etc), they only talk about how it affects mostly older people who were hospitalized, so it may not be "our" long covid.)

 

I think I've mentioned it a couple of times that it is really rare here that anyone mentions ME/CFS at all in any context (and they don't mean simply chronic fatigue by it). We aren't really actively chased by psychiatrists here so much, we are just simply ignored usually and everyone is severely uninformed about the existence of the disease. So now I've found a review article from last September (which has been listed in the Academy's repository only now). It is from the journal Orvosi Hetilap ("Medical Weekly"), the oldest medical journal in Hungary, first published in 1857.

Immunological phenomena related to infections: the importance of the gray zone, 2021, Zóka et al

Fortunately they also provided an English abstract:

It is behind a paywall and was written by three infectologists/microbiologists. I checked the references and while most of them were about certain infections and their connections with various well-defined medical conditions, the last few references were these:

• 50
  Rasa S, Nora-Krukle Z, Henning N, et al. Chronic viral infections in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). J Transl Med. 2018; 16: 268.
  
  
• 51
  Lande A, Fluge Ø, Strand EB, et al. Human leukocyte antigen alleles associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Sci Rep. 2020; 10: 5267.
  
  
• 52
  Curriu M, Carrillo J, Massanella M, et al. Screening NK-, B- and T-cell phenotype and function in patients suffering from chronic fatigue syndrome. J Transl Med. 2013; 11: 68.
  
  
• 53
  Montoya JG, Holmes TH, Anderson JN, et al. Cytokine signature associated with disease severity in chronic fatigue syndrome patients. Proc Natl Acad Sci USA 2017; 114: E7150–E7158.

(I also found a Wessely one though but far before these in the list:
11 Wessely S. Surgery for the treatment of psychiatric illness: the need to test untested theories. J R Soc Med. 2009; 102: 445–451.)

So now I'm planning to buy the article to read those probably two sentences about ME/CFS at the very end. (I need to set up a Paypal account to do so and I think I'll just need to start a whole new day to be able to do that...)

 

I've bought the article: most of it was about other, much better defined medical conditions and one paragraph was about ME/CFS. (The Wessely quote was about something unrelated.)

It only said that basically due to the association with HLA alleles and certain measurable immunological differences (T-cells, NK cells, serum cytokine patterns) a consensus has been formed about an autoimmune origin. (Well, I'm not quite sure about this.)

It also said that despite this, no biomarker suitable for diagnostics has been identified. This may mean that a central part of the pathogenesis has not been found yet, but they think it is much more likely that the condition is due to some complex imbalance problem.

There are various infections involved, viral, bacterial, etc, also these pathogens can be there temporarily or for a longer time or even persist forever in the body. There is not enough data to see if these different pathogens create different changes immunologically or they have different risk factors.

And then in the conclusion it says that these particular issues supported by little or weak evidence might lead to misdiagnosis (they mean overdiagnosis here), but that cannot be a sufficient argument for ignoring them. Also mentions that in cases of people with hard-to-define symptoms, subclinical infections and immunological conditions but with incomplete symptoms should not be ignored. Then in the very end the article says that if, while keeping medical evidence in mind, we (=doctors) can also incorporate a spectrum-level view about medical conditions with an infectious or immunological background into our thinking and we can also draw the patient's attention to these associations, then maybe several psychiatric diagnoses can be avoided and the patient won't become a "crux medicorum" in our eyes. Or that patients won't end up feeling they are not understood and look for unevidenced health services outside of evidence-based medicine.

 

An abstract published in Ideggyógyászati Szemle Proceedings (Clinical Neuroscience Proceedings) by neurologists at the Hungarian National Institute of Mental Health, Neurology and Neurosurgery. This is the Google translated version:

Post-Covid syndrome autonomic nervous system abnormalities
Danuta SZIRMA1, Orsolya GYÖRFI1, Anita KAMONDI1

Introduction: Based on literature data, residual neurocognitive symptoms can be detected in approximately 80% of cases after a Covid illness. Some of these symptoms can be associated with damage to the autonomic nervous system (for example, blurred vision, palpitations, dry eyes). The damaging effect of the infection on the nervous system is explained by several possible mechanisms, so the virus-induced cytokine storm, the damaging effect of direct viral spread and the immune-mediated autoimmune mechanism also arise. The exact localization of the autonomic nervous system abnormalities and the degree of involvement are not known.

Methods: The aim of our study was to measure the involvement of the peripheral autonomic nervous system in patients with SARS-CoV-2 infection and to compare the data with the results of the physical neurological examination. During our research, we examined 35 (21 women, 14 men, average age: 39 ± 7 years) patients with SARS-CoV-2 infection and temporary or permanent neurocognitive and/or autonomic nervous system symptoms. After a detailed physical neurological examination, a Quantitative Sudomotor Axon Reflex Test (QSART) and sudomotor sympathetic skin response (SSR) tests were performed to assess the functioning of the peripheral autonomic nervous system with the Vitalscan SudoCheck+ device. Heart rate variability (HRV) was also determined using a WIWE device.

Results: No focal neurological symptoms were found in any of the patients. Among the autonomic nervous system tests, the SSR measurement proved to be the most sensitive in the studied population: a discrepancy was found in 8/35 patients (23%). In five patients, we obtained results indicating a moderate level of damage (bioelectrical skin conductivity: 43.6–59.4 µS, normal range: 60–100 µS), and in 4 patients, severe damage (bioelectrical skin conductivity: 24.3–39.5 µS).

During the examination of the sudomotor axon reflex, a borderline pathological response was found in 24/35 patients (67%).

During the one-minute HRV measurement, we followed the standard deviation of the heart rate variability (SDNN) and the square root of the mean square of the RR intervals (RMSSD). Abnormally low values were measured in two patients (SDNN: 18–23 ms; normal range: >100 ms, RMSSD: 13–14 ms; normal range: 15–63 ms).

Conclusion: During our autonomic nervous system examination, we confirmed a peripheral autonomic nervous system disorder in approximately 20% of the test subjects. This rate is higher than before the Covid-19 epidemic in the average population of the same age group; to verify this, we plan to compare the data with a control group (without SARS-CoV-2 infection).

 

An interview with Dr Ádám Dénes about covid and its effects on the brain. His field is neurobiology/neuroimmunology and he is one of the people who received a grant from the Hungarian Academy of Sciences to research long covid. He is investigating the role of microglia at the Institute of Experimental Medicine (and his paper is supposed to get published soon).

The interview is quite lengthy, the negatives are: no mention of ME/CFS or PEM and he also talks about the benefits of exercise (mostly in general for similar neurological conditions).

Translated with DeepL (and its mistakes edited by me - hopefully I didn't miss any):

 

I'm trying to catch up with things a bit. I didn't even really check Facebook when I was on my break for health reasons so I missed this very sad post from the Czech ME/CFS patient organization from August.

Translation:

Here is the Google translated version of their full announcement.

If you remember, Jan Choutka is a Czech pwME who tried to get the NICE guideline implemented locally, without success despite his efforts. He met too much resistance (you can read a bit more about it here). I also remember he published a paper about post-viral syndromes in Nature with Iwasaki etc.

 

I was asked by the editor-in-chief of the health website InforMed to write an up-to-date article on ME/CFS. InforMed is a smaller health news website written by doctors for patients (but it definitely has some traffic because the "ask a doctor" section seems pretty busy with questions). It is also quite old, started more than 20 years ago and in general is seen as a reliable health website as it is operated by doctors themselves.

So here is my article, translated to English with Google translate:
What we know today about chronic fatigue syndrome

And here is the original Hungarian version: https://www.informed.hu/betegsegek/...a-kronikus-faradtsag-szindromarol-246732.html

The Google translation might sound a bit weird, as always. I tried to be as conservative in my statements and as close to what my sources say as possible, in order to show a high degree of credibility. The editor-in-chief asked about me after publishing the article, so I hope that the fact that I am a patient will be alright and the article will remain regardless (this info about me is openly available on my website, I'm not hiding anything).