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

Excellent that you have been able to get the idea of PEM to a medical audience.

 

Excellent work, Wyva. You hit on all the important points while keeping the article concise.

 

Yeah, I meant something like "breaking up into smaller pieces, not doing everything all at once" by that but I can see how it can also be interpreted in other ways, especially if someone is not familiar with the concept of pacing. I haven't thought of that, to be honest, but I'll try to avoid this kind of wording and describe it differently instead.

 

Portfolio, a finance news site and one of the most visited websites in Hungary, published a series of articles about the potential long-term negative side effects of the covid vaccines.

Here are the links to the Google translated articles in English for those interested:

Part 1: Katalin Karikó: there were those who said that they got pregnant from the vaccine against the coronavirus

The journalist asked Katalin Karikó, Hungarian-American researcher who played a key role in developing the mRNA vaccine technology used by Pfizer in this part but also a virologist commented. The journalist also asked other experts who declined to comment.​

Part 2: Light has been shed on the side effects of vaccines: what can the vaccine against the coronavirus cause?

This article talks about the situation of the covid vaccines and their potential negative side effects in Australia, Germany and how those states handle this (people from those countries on the forum may confirm if this is accurate or not). POTS is mentioned as something that has become 5 times more prevalent after the covid vaccines.​

Part 3: Corona virus: There may be vaccine-injured people in Hungary, but no one pays them

This article describes two Hungarian cases, their symptoms and experiences in detail. One of these people mentions having CFS now, but she seems to talk about it as a symptom (while also mentioning many other symptoms she has), so this may just mean chronic fatigue here.​

 

Bad title but good article (and the photo is a picture from a Millions Missing protest, not a sleepy secretary in front of her computer at work):

People who get stuck in fatigue for months, years - and there is hardly any hope for change

The article appeared on HVG, which is a well-known news site here. It is paywalled but I subscribed just to be able to read it because this site has a history of publishing articles promoting psychosomatic views (not about us though).

So the article has some minor flaws, inaccuracies but in general it is OK and seems to be mostly based on the German situation, Scheibenbogen and her clinic are mentioned, that ME/CFS is often misdiagnosed as something psychosomatic and that the disease can be very severe etc. CCC is mentioned as the best way to diagnose patients.

So it is actually a pretty good article, conveying a lot of good info in a relatively short text. I suspect it was probably based on some German article from 12th May. It is very rare that someone writes an article about ME/CFS here, so I'm happy that this is actually a good one (which is even rarer here).

 

This is just an abstract from a conference (31st Meeting of the European Society of Paediatric Clinical Research) but I'm putting it here in case anyone is interested. From Semmelweis University.

 

One of the very few articles from Hungary where a doctor talks about long covid (so the article is not a translation of some foreign article about long covid, which is much more common, but original stuff - the latter is really rare). The doctor in the article is Gábor Markó, a neurologist and the website is a well-known women's magazine. ME/CFS is not mentioned and it is mostly about general brain fog but I think it is interesting how a neurologist sees this term or talks about it.

Google translate:
What causes brain fog?

 

Neúnavní joins the World ME Alliance to represent the Czech Republic

"We are thrilled to announce the newest member of the World ME Alliance: Neúnavní. This Czech charity is dedicated to supporting individuals living with Myalgic Encephalomyelitis (ME) in the Czech Republic. Neunavní has been at the forefront of raising awareness, providing resources, and advocating for better care and understanding of ME within their country."

https://worldmealliance.org/2023/06...-me-alliance-to-represent-the-czech-republic/

 

Recently I sent a letter to the Department of Quality Improvement and Methodology (a department under the Secretary of Health) about the ME/CFS situation in Hungary. I don't really have too much time right now but this is the answer I have just received (Google Translate):

 

Yes, looks like they want to develop a guideline. We don't currently have any such thing for ME/CFS, so it will be interesting to see what direction this will actually go in the end, how reasonable it will be. I'm happy to see that Internal Medicine and Immunology are interested in this, not just Psychiatry (although I kind of expected Immunology to be one of these, as my personal observation is that immunologists seem to be more interested in ME/CFS than say neurologists elsewhere in the world too).

It is good that they are acknowledging the recent changes in other guidelines. I made some quick observations in a members only forum for Hungarian advocacy if anyone is interested in those.

The letter states that recommendations/suggestions will be welcome for the interdisciplinary group but I'm not sure if that can involve me as a random person too. I'm going to ask this in my reply.

It was a while ago when I checked how guidelines are developed and from what I remember patient organizations can be involved somewhat but when I randomly checked actual guidelines (eg one for autism where I expected some patient involvement) they were never involved, so I'm not sure this is common in practice. And I'm not even a patient org, just a random person with a website and a FB group. I've wanted to create a patient org but it is a lot of work and you actually need at least 10 people for setting one up and I don't know 10 people who are 1) available for this 2) are knowledgeable enough about the scientific literature of the disease apart from personal experience. I know a few but not enough. This whole ME/CFS advocacy is still very new in Hungary unfortunately, even the availability of post-IOM info for patients is quite new.

So anyway, we'll see to what extent I can get involved or not. I would like to be of course.

 

To sum up the situation in the Czech Republic (from what I understand and my understanding probably doesn't give the full picture).

The patient organization wanted the new NICE guidelines to be adapted for the Czech Republic. They put a lot of work in it but the process was unfortunately stopped by the Czech Medical Association last year. In the end the patient organization decided to suspend their activities after this as they were too ill to continue.

In the meantime another Czech patient organization seems to have emerged, the one linked by @Andy just a few posts above this one. They chose a cute smiling sloth as their symbol. I'm not sure how I feel about that but maybe they are trying to make pwME look more harmless/innocent/sympathetic/relatable with such a cartoon character type of symbol.

Anyway, the actual point of my post is that this new organization posted this on Facebook: "Communication with the Ministry of the Czech Republic regarding ME/CFS diagnostics in the Czech Republic successfully launched!"

So I checked their website and this is what I found from February (Google Translate):

 

Just an abstract from the PhD Scientific Days at Semmelweis University but the authors are Johanna Takács and Ákos Koller, who are two of the people doing LC research here

I posted an interview with them here earlier: https://www.s4me.info/threads/news-...slovakia-and-hungary.15709/page-7#post-423109

 

I found this in the Hungarian-language media of the Hungarian minority in Slovakia, but this article is about a Slovak person. Warning: the content may be disturbing!

Google translate: The terminally ill Slovak actress chose euthanasia

 

Another article (Google translated) about the vaccines, this time on a pretty well-known news site. I only copy here the part that an immunologist said about what he believes to be the reason why these symptoms some people attribute to the vaccines are so similar to long covid:

 

Veterinarian and virologist professor Miklós Rusvai frequently talks about covid in the media, here is an article where he also mentions long covid (Google Translate):

 

Just an abstract from the 14th Congress of the Hungarian Society of Human Genetics and Genomics.

Google Translate: