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

Two abstracts from the 32nd International Congress of Clinical Neurophysiology (ICCN) of the IFCN, September 4-8, 2022, Geneva, Switzerland.

The authors are neurologists at the National Institute of Mental Health, Neurology, and Neurosurgery, Budapest.

TH-284. Dysautonomia in patients recovered from COVID-19, 2022, Győrfi et al

TH-285. Autonomic nervous system dysfunction in long-COVID patients, 2022, Győrfi et al

Edit: I've just realized these are from 2022, not this year, so edited the years accordingly.

 

HUF 3 billion research is being launched in Szeged on the relationship between infectious and immunological diseases (Google translated article)

"Among the diseases selected for detailed analysis are the post-Covid syndrome, an inflammatory autoimmune disease affecting the central nervous system, multiple sclerosis, chronic fatigue syndrome, an autoimmune disease with inflammatory changes in the joints, rheumatoid arthritis, chronic autoimmune disease that attacks various organs of the body disease, systemic lupus erythematosus and inflammatory bowel diseases."

I need to run, so I'm not able to take a closer look right now, but this looks interesting in a country where the highlighted diseases are rarely even talked about.

 

So: after taking a bit better look: This is part of the ID-DarkMatter-NCD project, coordinated by Thomas Vogl from the Medical University of Vienna, Austria and the Biological Research Centre from Szeged (Hungary) is part of the project. The latter's systemic immunology research group is responsible for the genetic analysis of the 6000 participants.

From the Hungarian research centre's page: "With the help of modern multi-omic methods and genetic tests (HLA molecule and immune receptor genotyping), the team creates a detailed immunological profile of each patient, which allows them to get a comprehensive and detailed picture of the development of diseases."

Here you can read about this in English on the page of the Medical University of Vienna. There are a lot of partners:

There is supposed to be a website which doesn't seem to work yet.

Is this of interest to you @Andy and @Simon M ? Maybe you are already aware of this project but I'm just putting all this out here in case you would like to reach out to these researchers because of the genetic part.

 

Thanks Wyva, I'll pass details on to the team. Here are further details about the project.

Abstract
While it is known that post-COVID-19-condition (PCC) is caused by SARS-CoV-2 infection, for most other immune-related noncommunicable diseases (IR-NCDs), no such infectious disease (ID) triggers have been identified (yet). Many IDs exist that could potentially cause IR-NCDs, however these microbes have large genomes encoding many antigens possibly associated with IR-NCDs. Given that it is challenging to measure all these 100,000s of structures in parallel, they represent the dark matter of ID-immune interactions. Furthermore, exposure to an ID alone typically does not trigger development of an IR-NCD: For example only a subset of patients infected with SARS-CoV-2 develop PCC. So, genetic- and environmental aspects also affect the onset of IR-NCDs, but the exact factors are unknown for most IR-NCDs.

Here, we aim to 1.) identify IDs triggering IR-NCDs by screening for antibody responses against 600,000 ID antigens, and 2.) to disentangle environmental and genetic factors affecting the transition from IDs to IR-NCDs. We will combine novel multi-omics approaches and technologies for personalized genotyping of HLA and adaptive immune receptor genes to deeply profile 6,000 patients of six IR-NCDs (PCC, multiple sclerosis, ME/CFS, rheumatoid arthritis, lupus, IBD) to identify novel biomarkers and disease mechanisms.

This project will represent the largest and most deeply profiled systematic study of multiple IR-NCDs with layered datasets allowing for comparative analyses yielding insights into shared mechanisms and potential differences in the role of IDs between IR-NCDs. Building on associations identified from population scale and clinical cohorts, we will demonstrate causality in gnotobiotic mouse models, and leverage machine learning (ML) algorithms to predict disease progression and response to treatment. The combination of novel assays with ML represents a broadly applicable pipeline that can be used for studying the interplay of any other IDs/ IR-NCDs.

https://ec.europa.eu/info/funding-t...42/project/101136582/program/43108390/details

 

Thanks for posting @Wyva and @Andy

I think they got funding from the Horizon Europe call 'Relationship between infections and non-communicable diseases'. The European ME Coalition (EMEC) tried to highlighted this call as a potential funding source for ME/CFS research. Great to hear that this project by Vogl got funded and that ME/CFS will indeed be included.

To clarify: I don't think the EMEC website info had anything to do with the application and consortium. This call is also different from the one EMEC lobbied for, namely the one on under-researched high-burden diseases (where review is still ongoing).

 

This is great to see. It does feel like a real missed opportunity that Sjogren’s disease is not being included as one of the autoimmune diseases, given it is one of the closest to post-viral illnesses and post-Covid, with respect to its ability to trigger things like autonomic nervous system dysfunction and small fibre neuropathy, both of which are being seen in post-Covid (Sjögren’s is second known leading cause of neuropathy after diabetes. Many neurological Sjögren’s patients do not present with dryness and are seronegative. They are often misdiagnosed with ME, fibromyalgia, IBS POTs etc.,… profiling this type of Sjögren’s patient would be well worth doing!

 

What is covid doing in the brain?

Just recently there was an event in Hungary called the Brain Research Week, where the general public could attend talks by researchers about various brain-related topics. The effects of covid on the brain was one of these topics and the lectures of two researchers, Imola Wilhelm (Institute of Biophysics, Biological Research Center) and Ádám Dénes (Neuroimmunology Research Group, Experimental Medical Research Institute), were detailed in the article above. Ádám Dénes might sound familiar to some of you as I have mentioned him a couple of times, for example here. ME/CFS is not mentioned.

It is quite a long article, translated by ChatGPT. If anything sound too confusing, let me know:

 

Just saw this on the Facebook page of the only Polish ME/CFS website I found a couple of years ago. It seemed to be dormant back then but this is today's FB post (Facebook translation):

After a while, the website me-csf.pl is back! We start a big-small comeback with the discovery of a YouTube channel by a chroniczynka - a patient who decided to spend her little energy exactly to make patients looking for information, diagnosis, or current recommendations of ME/CFS in Polish come across this easily accessible form which is a video-blog. So I encourage and invite you to subscribe, follow, listen and recommend - the protagonist does a lot of good work! ​

This is the website: me-cfs.pl

About the person running it:

 

From the Polish ME/CFS website I follow:

Google translation:

Everything indicates that this summer (2024) we will happily see the first clinic in Poland dealing with the clinical diagnosis and management of ME/CFS as part of NIGRIR - Warsaw, Spartańska.​

The department is still being prepared to expand its activities, and patients who ultimately want to have professional diagnostics for ME/CFS performed there can also start preparing medical documentation to reduce the time and energy spent on diagnostics.

(...)

• Help for ME/CFS patients that the clinic will be able to offer will include:

Clinical diagnosis for ME/CFS patients (including the possibility of performing a two-day stress test - which at the moment is one of the best available tests in the context of ME/CFS diagnosis that medicine provides us with);

Support in managing the symptoms of the disease based on current recommendations - including pacing (here called rehabilitation for formal reasons); psychological support .​

The full article

 

Hyperbaric Oxygen Therapy Conference in Hungary

Context: Nikolett Szolnoki, who offers this service, has been promoting HBOT as treatment for long covid in the media for a year or two now. The conference also took place where her private clinic operates.

Key points:
- They are (Szolnoki et al) doing long covid research in collaboration with the Medical University of Graz (Austria).
- They are working together with the University of Pécs, where a new course on oxygen therapy is starting for medical students, for the first time in Hungary.
- They are planning to work together with a county hospital in Croatia to do research in the future.

 

Some good news:

The governmental healthcare website Egészségvonal has updated its informational page on ME/CFS (written by the National Public Health Centre) after I sent them a letter pointing out in detail how much it differs from the current literature. Although I could still find a problematic part about treating symptoms with supplements, etc, it is now much better than the original version.

This is good news not only because journalists started to cite the original, poorly written Egészségvonal description in their articles about ME/CFS, but because there is barely anything available in Hungarian about ME/CFS that is factually correct and follows the current literature (apart from my website).

So I see this as a big win that a website that is probably seen as quite authoritative provides such information now. Here you can check out the version translated to English by Google. (For some reason Google only translates about half of the text for me, hopefully it works better for you.)

 

Thank you. There are still some minor issues with it but it is much better than the original. Here is my letter to them pointing out the problems, so if anyone is interested, they can see what these problems were in the original version (ChatGPT translation, so far from perfect):

I also have to add that I have to credit S4ME as well for many things that I do. I have learnt an awful lot here about the science (or lack thereof), the methodology and also about how to do advocacy. Really it is the best resource for me, I'm really just copying and applying what others already said or did before me. 2-3 years ago I was much less confident in really having the knowledge base to be able to properly challenge doctors and academics but S4ME has taught me so much that it is not really an issue anymore (although I still need to learn a lot as I'm just a layperson).

 

From the Polish ME/CFS blog written by a patient:

SCIENTIFIC MEETING ON CHRONIC FATIGUE SYNDROME AT NIGRIR

Google translation:

NIGRiR is fully committed to preparing to work with ME/CFS patients. Therefore, on May 15 at 11:00 there will be a Scientific Meeting focused on Chronic Fatigue Syndrome - at which I will have the pleasure of being one of the speakers. Specialists and patients are invited to the event - it will be possible to participate online (which we know may be the only option for many patients!). The meeting will last about an hour, and then there will be time to ask questions about the disease itself, as well as issues related to the technical aspects of the diagnostic process that some patients are waiting for.

Online participation will be possible via Microsoft Teams - I will share the link closer to the event, and in the meantime I am posting the full text of the invitation below.​

NIGRIR is the National Institute of Geriatrics, Rheumatology and Rehabilitation in Warsaw. This is the same place that is setting up the first ME/CFS clinic in Poland, according to an earlier post on the blog.

 

This year ME/CFS Awareness Day was a little bit more in Hungary than in the past few years. First, one of my group members, Angelina Zakar created a dozen pictures with simple messages on them for 12th May to raise awareness. These were all variations of the same thing: eg. "I have ME/CFS", "my child has ME/CFS", a friend of mine has ME/CFS", "I stand with people with ME/CFS" etc etc, so everyone could share in their social media whichever was appropriate for their situation.

Then today, we had the first ME/CFS Awareness Day event (or any kind of ME/CFS event really) organized by an ME/CFS patient from my group called Mátyás Harangi, his wife Anna Harangi and the charity of their church. It was super lucky that the event took place super close to where I live (not on purpose, it was just coincidence).

So basically it was the three of us on the stage (and Adrián Molnár, a mental health professional was asking us some questions to guide the conversation). This is how it was structured: we watched a video with Hungarian subtitles about the disease (one by OMF, one by @Adam pwme , that old one with Charles Shepherd talking and one about severe ME/CFS made by a patient with severe ME/CFS). And after each video we had a short discussion.

It is in Hungarian so you won't understand it but just in case someone Hungarian who doesn't know my website stumbles upon this, here is the video.