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

An article appeared on ME/CFS on Házipatika, the most visited health website in Hungary. This website is aimed at the general public. The article is a summary of description of the disease and it seems to be based on the CDC mostly (you can spot some of the problematic info you can find in CDC materials).

Unfortunately, the article doesn't seem to describe PEM or pacing well. PEM sounds like simple exercise intolerance and the name of pacing is just translated instead of explaining what it is. (The translation of pacing sounds more like "scheduling" in Hungarian, which is easy to misunderstand.) The article does not push GET or CBT. In general, I would say it is a well-meaning article written by someone who doesn't know the disease well.

Here is the Google-translated version.

 

The Canary: Poland doesn’t even recognise ME/CFS – leaving one man living with it with no way out from domestic abuse

Throughout all this time, Karol has been unable to get a formal diagnosis for his severe ME/CFS, and has only started getting diagnoses for the majority of the other chronic health conditions he clearly lives with as he has become progressively ill. However, a majority of clinicians still do not recognise these regardless. He told the Canary that he first learned of ME himself at the age of 17. However, he soon found out that Poland’s medical system does not have it listed as an official disease entity:

"when they check out their medical system, whatever they use for the information, I told them ‘encefalopatia mialgiczna’, which is a literal translation of myalgic encephalomyelitis, and they couldn’t find that in their system. So they think for days that I’m bringing up this disease that doesn’t even exist, but they only tell that to me much later. So they think I’m entirely cuckoo."

What this has meant in practice for Karol has been a catalogue of catastrophic care at the hands of Poland’s medical professionals.

When Karol initially approached the hospital for answers, he explained that clinicians had entirely dismissed him, and put it down to the serious bullying he was experiencing at school. A child there had been beating him, but nobody was intervening to stop this. It meant clinicians passed off his symptoms as psychological, suggesting he had agoraphobia on the basis of him: not wanting to leave the house and not wanting to go to school.

Consequently, instead of taking his debilitating symptoms seriously, they committed him to a psychiatric ward for three and half months.
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Full article: https://www.thecanary.co/global/world-analysis/2025/04/09/poland-me-cfs/

 

Saw this on the Facebook page of the Czech ME/CFS patient org.

Facebook translation:

ME Day 2025 exhibition is here!
You can now find a special exhibition dedicated to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) at the Westfield Chodov center.

On the information panels you can find out:
• What is ME/CFS
• How the disease affects the daily life of patients
• Real stories of people battling illnesses

Why go to the exhibition?
Because ME/CFS is a disease that in the Czech Republic still has no official diagnostic criteria and thousands of patients remain without help and understanding. By sharing information and awareness, we can make a difference together!
ME Day is held annually on 12th. May and remind us of the millions of sick people around the world who often go unseen.

More information about planned activities can be found soon in an upcoming event here on our networks!
Come, take a photo at the panels, share on your networks and help us spread awareness of ME/CFS! We will be glad if you send us your photo creations
Thank you for standing with us for those who can’t anymore
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The location seems to be a shopping centre.
https://www.facebook.com/neunavni/p...bCsPRLNRGXKnHDGFqhb32NHTsLmBwQTG8t1K6q5prxWsl