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

It may take years before it turns out how much the epidemic has actually ruined children

Very long article, which focuses on all kinds of covid and pandemic-related mental health issues in children, but of course a big part of it is about long covid because obviously that is also a mental health problem. (It is unfortunately in our long covid guideline that if you don't have some detectable cause for your symptoms then it is psychological.)

Dr. Gyula Sófi, Head of the Department of Child and Adolescent Psychiatry, Pál Heim National Institute of Pediatrics and Vivien Bognár, child and youth clinical and mental health psychologist are quoted mostly.

Highlights:
- Heim Pál Children's Hospital now has a post-covid clinic for children, and it is for mental health issues. Families from all over the country come with their kids. It is both for children who are stressed, depressed etc because of the pandemic and social isolation and for children with long covid. So very often you don't know which kids they are talking about, because it is not always clear. This is something I'm really not happy about.

- They also obviously don't think the difference between the two groups is that big, because they even draw parallels between them, saying their symptoms of mood disorders and anxiety overlap. But also long covid symptoms, like headache not responding to medicine, dizziness, cognitive issues, physical and mental weakness, sleep disorders, unrefreshing sleep, neurological problems, etc are mentioned.
- Two thirds of the kids who are referred there have long covid and one third has pandemic related mental issues. Age range: mostly elementary school and high school kids.

- Quote (Google translate): "Many of the children affected by Covid have already participated in 4-5 sessions, so they (the clinic) have also gained experience with the results of their treatments. “For those who have appeared several times in various controls, behavioral therapy, diagnostic, psychotherapy sessions, we see a clear positive change in quality of life,” said dr. Gyula Sófi."

Great, and what's with the ones who never came back? It seems to be quite universal that these patients are forgotten about in the stats.

- Chronic fatigue syndrome is not mentioned. Not even psychiatrists really mention it here in connection with long covid somehow. I'm not sure if even they don't want to make the connection or they do but just never specifically mention it for whatever reason. Again, ME/CFS is not on the radar at all in this country anyway, so...

But all I can say is that I really don't envy all these children with long covid participating in behavioral therapy now, with no other options.

Article: https://telex.hu/koronavirus/2021/07/08/gyerek-pszichologus-fiatalok-koronavirus

 

Do they present that as an "analytic" or "synthetic" view? i.e. are psychological illnesses, by definition, those for which no detectable cause has been found, or do they have other empirical criteria for "psychological"?

 

They mention symptoms without a detectable cause as one of the leading psychiatric symptoms of long covid: (edit: and no such thing is mentioned in the organic disease part)

And the literature they used:

 

Interesting. So all they need to do is say what they mean by "cannot" and by "organic".

 

I'm pretty sure people who pick cherries for a living don't do nearly as much cherry-picking as this. They pick them all and sort it out later.

 

Call for proposals of the Hungarian Academy of Sciences for the submission of high-risk applications for research on post-COVID phenomena
2021

The Hungarian Academy of Sciences is planning to spend 400 million forints (about 1.1 million euros) over two years on research on "post-covid phenomena", regardless of the field of science. 6-12 applications will be accepted. The word "phenomena" doesn't really help, and they say they want to see research into the health, economic, social and cultural implications, so this could be anything covid-related and not really about post-covid syndrome itself - although the text mentions covid as the cause for the "phenomena", not the pandemic. (There has been a lot of muddling going on about this here, basically that non-organic post-covid syndrome is just part of all these other post-pandemic psychological issues like the effects of isolation etc and not much different from those. So this may or may not be in the same vein.)

Some more details with Google translate:

The original: https://mta.hu/aktualis-palyazati-k...nagy-kockazatu-palyazatok-benyujtasara-111495

 

Research into long-term Covid may also help people with another syndrome

Very good article on a news site (not one of the major ones, but still, it's news site). Again, mostly based on foreign articles.

In short:

- research on long covid may help understand ME/CFS as well, because the two are very similar and both can be triggered by an infection
- PEM is mentioned as a very characteristic symptom for both (without calling it PEM - instead it is simply explained)
- emphasis on how debilitating the disease can be and that patients get no real help usually

- the research money of 1.15 billion dollars is mentioned, the Long Covid Alliance is mentioned, as well as Anthony Komaroff, whose opinion usually seems to be able to reach the Hungarian media the best for some reason
- the first SARS is mentioned as something causing similar problems, so long covid shouldn't have been a surprise
- the psychological interpretation is a huge obstacle for people with ME/CFS

- it is mentioned that a study in the Lancet in 2011 (they omit the name) was trying to prove that CBT and GET work as a treatment (supporting the psychological explanation) but many patients were harmed by these and the CDC removed them from its recommendations
- patients are hoping that research into long covid will support them that this is not a psychological illness

My only problem is that at the end it sounds like the issue is between patients and scientists, which is not great, but I don't think the journalist meant anything really bad by it, he/she probably just included what he found in some other articles.

You can read it with Google translate: https://translate.google.com/transl...gy-masik-szindromaban-szenvedokon-is-segithet

And the original, after Andy suggested it: https://infostart.hu/tudomany/2021/...gy-masik-szindromaban-szenvedokon-is-segithet

 

Given that you rate it as a good article Wyva, probably worthwhile adding the direct link to the article in your post as well. That should then help improve its performance in web searches a bit.

 

The German TV Documentary “Living with Chronic Fatigue Syndrome. ME/CFS – A Misunderstood Illness” from July 2021 is now also available to watch online (until October 7) with Polish subtitles:
https://www.arte.tv/en/videos/096283-000-A/living-with-chronic-fatigue-syndrome

 

Recent news from Hungary:

Article: Long Covid in children

The first article mentioning ME/CFS after a month, on a health site written by doctors for the general public: The article is mainly about the studies that showed long covid is not very common among children, but it also details the typical long covid symptoms etc. At the end it gives two examples for similar conditions: ME/CFS and orthostatic hypotension (it is not clear to me if the original source might have said orthostatic intolerance or indeed hypotension).

Anyway, the short ME/CFS description contained errors (Google translate):

Chronic fatigue syndrome

There is no known cause for this condition, but it is similar to the symptoms of long-term COVID-19. Chronic Fatigue Syndrome can cause severe headaches, fatigue, brain fog, or “Post Exercise Malaise” (PEM).

PEM can occur when children engage in more physical or mental activity than before. After that, they may feel extremely tired, have a headache, or be sensitive to light and sound for days.​

Due to the errors I messaged them about it and explained the name of PEM and PEM itself (and used the IOM criteria from the CDC website as a reference). The doctor who wrote it corrected the article and used my explanation word by word in the new version (that it depends on the person, for some people even walking can induce PEM while others can work a bit, that there is usually a delay in PEM symptoms and that it can last longer than a few days and these people could carry out these activities without a problem before, it is not due to literal overexertion). Hurray!

With Google translate:
https://translate.google.com/transl...sars/hosszu-covid-19-gyermekeknel-243364.html
The original in Hungarian: https://www.informed.hu/betegsegek/infections/viral/sars/hosszu-covid-19-gyermekeknel-243364.html

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Other things, mostly advocacy-related: I wrote a really long, detailed but easy to follow article on the pause of the NICE guideline on my ME/CFS Facebook page, so if any news about it hits Hungary (not yet), this article can be used right away to give a better picture.

I have also posted the petition on my Facebook page and in my group, so there were definitely at least a small number of Hungarians who signed it. (The admin of the big long hauler FB group who I'm friends with and who lives in London may even attend the protest.)

 

Tamás Freund, President of the Hungarian Academy of Sciences, also a neuroscientist, finally addressed the issue of long covid today. I believe this is the first time when someone in a more "official" role did so.

“As it has become known that Covid-19 can cause severe, sometimes long-term, damage to younger people as well, this issue needs to be given more attention. We agree with and support the vaccination campaign launched in schools, ”the document states.

(...)

The so-called long Covid disease is placing an increasing burden on the health care system and can cause serious problems in its detection and proper treatment. It manifests itself in a variety of forms, from psychiatric problems to severe nervous system symptoms, so scientific and clinical analysis is essential for its cure. The appearance of the disease can be significantly influenced by the economic and social situation of the population of the given country, so this research is especially important in Hungary as well, he wrote.

The academy has been asked by the prime minister to “develop a post-Covid strategy, as well as a long-term overall pandemic plan, for which the government will provide significant resources in the MTA’s (this is the Academy) base budget from 2022,” he said.​

From a different article about the same subject:

The Hungarian Academy of Sciences will direct research on long-term covid diseases.​

This is what I wrote about previously and I didn't understand what their post-covid "phenomena" research project was about: post-covid syndrome or just the general effects of the pandemic because they really didn't make it clear first (I wrote about this in one of the posts above). So long covid is definitely a main (or the main) focus. Good. Finally someone said something at least, it was high time.

Edit: found the original text on the website of the Academy: https://mta.hu/mta_hirei/az-mta-eln...ik-oltas-szuksegessegevel-kapcsolatban-111557

Media sources: https://www.magyarhirlap.hu/kronika...eg-nem-oltatta-be-magat-minel-elobb-tegye-meg
https://telex.hu/belfold/2021/08/27/mta-covid-javaslatok-kormany-kutatas

 

So, I've launched the first Hungarian ME/CFS website.

https://mecfs.hu/

It is the same as my Facebook page was, with mostly research and advocacy news summarized in Hungarian, but this way it is much more organized and with tags it is easier to look up things that someone wants to learn more about. There is also a lot of quite detailed (and well-referenced) info on ME/CFS in the menu, that is easy to navigate. (I'm still adding more info there, that part is not entirely finished.)

There is a section for doctors with the most important literature and also a section where I'm looking for interested doctors (and what requirements they need to meet because we all know that any kind of random doctor with a so-so knowledge would probably not be enough for running a proper clinic for example).

I tried to make it as visually simple as I could and I think in the end it is alright. ME Association and ME Action have more visually overwhelming websites, I believe (I checked to see). But I asked pwME to give feedback if something is seriously problematic, so I'll know.

Edit: It may not look very complex, but I've actually worked a lot on this in the past couple days, so I'm quite done now.

 

Definitely all right! I really struggle with lots of images and competing colours, especially when I'm trying to get important information from the text rather than just scrolling through the way you do on a social media feed. It looks very clean and simple – great work. I know how much work goes into creating pages, so I'm not surprised you're due for a break now!

 

Looks good. Wel done!

 

Short article on post-covid symptoms on one of the major news sites. It is a very good illustration of how long covid is viewed or treated here: it isn't even really named, only some of its symptoms get mentioned along with organ damage and other issues after being on the ventilator. Long covid is rarely in the news here, so right now it seems to be soon on its way to where ME/CFS is in this country: to become an illness that just doesn't really exist apparently. The patients are there, but somehow barely anyone knows or hears about it, including people in healthcare.

Btw, Gábor Zacher is a well-known and extremely popular guy (a toxicologist though), people listen to him.


Here is the version translated with Google in full (it is quite short):

Source: https://index.hu/belfold/2021/09/28/zacher-gabor-keresztes-emilia-poszt-covid-szimptomak/

 

Research in connection with post-acute sequelae of covid (they are just recruiting):

Google translate:

Have you been through Covidon? Help assess how the disease affects brain aging!

"The ELKH Natural Science Research Center and the Research Institute for Experimental Medicine are waiting for applications between the ages of 18 and 75 for just such a study. The research they conducted aims to “examine lifelong brain function and mental decline in old age, with particular reference to Covid-19-induced neurological disorders and residual symptoms, and their impact on brain aging,” reads their call.

Applicants are expected to take the following tests:

MRI
outpatient specialist neurological examination
sleep EEG
lifestyle questionnaires
memory tests
blood collection.
Anyone who would take part in the research can apply at the email address mri.akk@ttk.hu."​

Source: https://telex.hu/koronavirus/2021/1...ntkezes-elkh-termeszettudomanyi-kutatokozpont