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

Context: basically you can't read anything about long covid in Hungarian media anymore (government or independent media, it really doesn't matter which one). I mean you can find a few articles sometimes that are translated from some foreign source about some LC research that made some waves abroad (like the Wüst paper), but even that is rare. There are basically zero original Hungarian articles about LC anymore (there weren't many to begin with).

Btw, a few people from my group (the ones with LC mostly) have tried to approach journalists but they weren't interested. They also tried to send them the stories of pwME from my group that we also sent to the Ministry a few months ago to show how bad the situation in healthcare is (that no one knows or understands the disease, no one can diagnose it etc). Not a beep came back.

So anyway, after this introduction even a short, not too well-informed article like this is newsworthy here.

ChatGPT translation:


Gábor Kemenesi: After the Pandemic, a Cure for Long Covid Must Be Found Urgently

Covid is a very new virus, so scientists are only now beginning to understand the long-term changes it causes in the body, said the virologist.​

According to a British survey conducted between November 2023 and March 2024, 71.1% of respondents said they had been suffering from Long Covid for at least a year, 51.3% for two years, and 30.6% reported post-Covid symptoms from three years ago. According to the UK's Office for National Statistics, this amounts to 1.5 million British patients, of whom 381,000 are in particularly poor condition.

"It is well known that some symptoms remain after the acute phase of other viral infections, but Long Covid is unique," said virologist Gábor Kemenesi on InfoRádió.

"What sets it apart is that Covid was a completely new virus, and it quickly swept across the globe, causing a sudden surge of infections. We still do not fully understand how, during its course of infection, it leaves behind various symptoms, inflammation sites, sleep disturbances, and other issues whose biological backgrounds are not yet understood," said the virologist, indicating that recognizing and treating Long Covid is difficult for this reason.

Initially, information about the disease comes from so-called correlation data, such as when someone notes that their sleep worsened after having Covid, and this is recorded by science. Then they examine whether there is a biological basis for this, and if they find actual organ changes or cellular processes, they can potentially look for a cure.

"So far, the concept of Long Covid is still very vague.

What is certain is that it exists and is known in other viral infections, but the Covid pandemic was caused by a very new virus. Scientists need to understand it now and find cures for it," said Gábor Kemenesi, recalling a previous statement that the Covid pandemic is evolving into the problem of Long Covid, its understanding, and its medical treatment. He emphasized that Long Covid is a significant factor in the world today, and science is rushing to understand and find treatments for it.

Simon Williams, a researcher at Swansea University, told The Guardian that the survey results proving the spread of Long Covid in the UK indicate a chronic public health crisis.​

Gábor Kemenesi is a young virologist/researcher who is a somewhat well-known face in the media. He doesn't seem to be super well-informed about ME/CFS but he is still someone actually talking about long covid, unlike basically anyone else, including doctors. Edina, my group moderator, who also happens to be the moderator of a big LC Facebook group, told me that Kemenesi is actually a member of their group and even liked some of her posts there. So now she is planning to approach him, with the hope of making him an ally.

 

Some conference abstracts from The 30th National Scientific Assembly of the Hungarian Psychological Society from 2023 (book of abstracts here). There was a whole section titled "Affective and cognitive neuropsychological functions in post-COVID syndrome, and specifically developed psychological interventions for these symptoms".

These abstracts are mostly about psychological research into post-covid syndrome funded by the Hungarian Academy of Sciences. These papers have yet to be published but they used art therapy and virtual reality-based therapy. Apart from the main authors, you can see involvement from Veronika Müller, who is actually a pulmonologist and seems to have a special interest in long covid as she also gave lectures on long covid at the two symposiums of the Academy earlier.

Some of you may remember her as someone not very familiar with ME/CFS and post-viral syndromes at all, to the point that one of the papers on long covid she contributed to said previous sars infections didn't have such lingering symptoms, which is very easy to disprove. I don't know if her knowledge is more up-to-date now. She is also pushing cardiopulmonary rehabilitation for long covid as far as I know but again, long covid to her may be lung-related long covid, people she sees at the pulmonary clinic.

Anyway, here are the abstracts about the upcoming studies, translated by ChatGPT:

Introduction:

Affective and cognitive neuropsychological functions in post-COVID syndrome, and specifically developed psychological interventions for these symptoms

The Impact of COVID-19 on Executive Functions in a Hungarian Sample

Rehabilitation of Neuropsychological Functions in Post-COVID Patients Using Virtual Reality (VR) Methods

Art Towards Health - A Short Art Therapy Program in the Rehabilitation of Post-COVID Patients

Effects of Virtual Reality-Based Cognitive Intervention Program and Art Therapy on Affective and Cognitive Neuropsychological Functions in Post-COVID Syndrome

 

This is my favourite part, from the art therapy abstract:

"The art therapy protocol consists of 6 sessions with the following themes: (1) presenting ourselves and our experiences; (2) body image and imagination about the functioning immune system; (3) restoring safety; (4) following the rhythm of breathing and releasing tension with directed drawing techniques; (5) gratitude sculpture for resources and survival; (6) foresight image of the process and comfort box. The technical background of the sessions is compiled from protocols of positive art therapy, healthcare art therapy, and art therapy practices for life-threatening illnesses. We conducted state assessments before and after each session."​

I guess I'll just start imagining that my immune system works just fine, maybe paint some weird Dalí-style artwork inspired by it and wait for my brainfog to eventually go away!

In all honesty, it sounds like it was mostly designed for people who almost died at the ICU though.

 

What about when the subject moves their hands back so as not to make contact? That would be my instinctive reaction!

 

An abstract from the PhD Scientific Days in Budapest just a few days ago:

Viral infection associated pediatric gastrointestinal disturbances in the context of the COVID-19 pandemic
Author(s)
Dr. Réka Garai1, Dr. Vivien Herczeg1, Dr. Fanni Kovács1, Dr. Anna Máthé2, Dr. Ágota Nyírő3, Dr. Péter Krivácsy1, Prof. Dr. Attila József Szabó4, Dr. Nóra Judit Béres, PhD1
1: Pediatric Center, Semmelweis University, Bókay Unit, Budapest
2: Észak-budai Szent János Hospital, Budapest
3: Albert Schweitzer Hospital, Hatvan
4: Pediatric Center, Semmelweis University, Budapest

 

An article in the women's magazine WMN with pediatricians (resident doctors) Réka Garai and Vivien Herczeg. I occasionally post here conference abstracts from Hungarian pediatricians on long covid, these conference abstracts are from these doctors (my very last post just above this one for example).

Long Covid in children: It can be accompanied by pain, sleep disturbances, and phobias.

First they talk about this study, then they go on to talk about the situation in Hungary. No mention of ME/CFS. They are sympathetic towards patients but this is an article you would have expected in the first year or two. Not well-informed enough. It illustrates the situation in Hungary well though. ChatGPT translation:

 

Ádám Dénes neurobiologist researcher was asked to comment on a long covid study on the channel RTL (link to video). I've mentioned Dénes several times here, he is one of the (neuroimmune) long covid researchers here but he also seems to be as unaware (or ignorant) of ME/CFS and post-viral disease as the other Hungarian researchers and clinicians. I've never seen him mention these or PEM. He seems to be a promoter of exercise (mental or physical) for health in general, he frequently mentions it in connection with chronic disease for example.

The study he commented on was the one about adolescents and how the lockdown has aged their brain, especially for girls. He didn't question the findings entirely but at least he added that you cannot exclude covid as another contributing factor and how covid may affect the brain, especially now that most people have been infected a couple of times probably. So at least he emphasized that at least as a contributing factor.

--

Something else:

Symptoms and options in rehabilitation of post-COVID–19 syndrome (long-COVID), 2024, Kupovits

Abstract

This was published in Orvosi Hetilap, this is that very old Hungarian-language medical journal that will publish the promised consensus recommendation for ME/CFS when it is done. I think this review was written by a physio. No mention of ME/CFS or POTS or PEM at all. The review discusses the various issues grouped by symptoms (lung-related, etc.), all the covid sequelae mixed together basically. CBT is also briefly mentioned as recommendation. Not good, especially that not a lot is published here about this.

 

About as informed as what LC forums knew by about July 2020. And barely at that. Probably less than average.

I don't understand why almost no one in this profession seems able to question the awful logic here. That with no effective treatments, you can just deploy this useless multidisciplinary approach, especially featuring professionals who barely seem able to learn the first thing.

What is it that makes this rehabilitation a solution when there is no solution? It's not even based on anything, and even they seem to realize that it's likely for nothing since they can't ever tell the difference whether it makes any difference, and all the evidence points towards a firm no.

They don't understand it so how is that even supposed to work out? Again with the if(false): code_runs_anyway(); logic. The complete disconnect with reality and lack of adaptation is maddening. They just always have the one solution that they run in an infinite loop.

 

There was an article a couple of days ago in Nők Lapja, a well-known women's magazine about ME/CFS. It is a mixed bag, starts pretty badly but then it talks about PEM, pacing, orthostatic intolerance, things that are basically never mentioned on the Hungarian internet (neither by the media, nor by doctors), except on my website and related social media. So it is not a great article because of certain parts but the bar is very low here and it is much better than the other rare articles here on the topic. There is an ethnic Hungarian doctor from Targu Mures/Marosvásárhely (Romania) in the article, it looks like the it is mostly based on what she said. She is called Tímea Zita Varga-Fekete and is an internist. The article is actually from 2021 and first appeared in the printed version of the magazine but it looks like they posted it online only now.

In Pursuit of the Mysterious Chronic Fatigue Syndrome

ChatGPT translation:

 

Upcoming event organised by the Hungarian Academy of Sciences:

Research on Post-COVID Phenomena, 26th November, 14:00-17:00

Researchers will talk about their post-covid research projects, which are funded by the Academy. Not all of these are medical, some of these examine the legal, sociological etc aftereffects of covid. I will only share the description of the medical research topics here. Also, not all medical post-covid research funded by the Academy will be presented at this event, a lot of the other researchers will be absent. Luckily, the event will be streamed on the YouTube channel of the Academy, as usual.

The medical programme (translated by ChatGPT):

Investigation of Immunological Changes in the Acute and Post-COVID Periods

Attila Tóth (Department of Clinical Physiology, Institute of Cardiology, Faculty of Medicine, University of Debrecen); Péter Bay (Institute of Medical Chemistry, Faculty of Medicine, University of Debrecen)

Research on the Genetic and Immunological Background of COVID-19 and Post-COVID Syndrome

Balázs Sarkadi (HUN-REN Research Centre for Natural Sciences)

The Role of Inflammation and Microglia in the Development of COVID-19's Neurological Effects

Ádám Dénes (HUN-REN Institute of Experimental Medicine)

Link: https://mta.hu/esemenynaptar/2024-11-26-poszt-covid-jelensegek-kutatasa-5525

I'm planning to watch the medical presentations. I wonder if anyone will mention ME/CFS or PEM at all. I see Ádám Dénes every once in a while in the media talking about his research but never mentioning these but I don't know about the others.

 

Another article about Ádám Dénes' long covid research, this one is from the website of the Hungarian Academy of Sciences as some sort of a teaser for the upcoming event of the Academy on long covid (you can find details of the event in my post above). The article is quite long though (and it was widely reported in the media.)

You can see Ádám Dénes relatively often in the media talking about his long covid research, however, he never mentions ME/CFS or PEM. He even talks about the benefit of exercise at times. I don't think he is fully BPS, he clearly sees long covid as a biomedical problem but he also seems to ignore ME/CFS and PEM. I don't think he has a well-characterized cohort in his research because of this. One of his studies found neuroinflammation in the brain and he talks a lot about this but the people he studied were mostly older people who died of covid. So this may not actually say anything about long covid. He also talks about his other, still ongoing research, that follows people dealing with neurological symptoms after covid and they are trying to see how these are connected to the brain, neuroinflammation and if there are any degenerative processes.

You can read about all this in detail here (translated by ChatGPT):

Post-COVID: The Greater Concern Now is Not Ventilator Use, but Long-Term Neurological Damage

 

Ironic that he is pursuing the whole it's-literally-the-name model of inflammation of the brain and nervous system of ME, while completely ignoring it. It's easy to see why most discoveries in medicine are down to chance. Remove chance from this and you basically have nothing going on for the most part. Well, only technology, and even then.

 

Radio Free Europe has created a video about long covid in Hungarian. It is about 10 minutes long and two members from my ME/CFS Facebook group share their story and experiences in it, Beáta Szabó and Edit Tarjányi (they are the only pwLC in it). The reporter also interviewed Ádám Dénes brain researcher for the video. I have mentioned him several times on S4ME, basically he is a long covid researcher who also frequently talks about long covid and his research in the media. However, he never mentions ME/CFS or PEM, which I find really odd.

I don't think the reporter was very well-informed, because he also completely ignored ME/CFS. (He was the one I sent a letter to, trying to convince him of the importance of talking more about it but I never got a reply.)

Luckily one of the women in the video, Bea mentioned ME/CFS a few times but I think with a better-informed reporter this could have been much much better. Because there was nothing in it about how there is nothing new about this and how this is a systemic problem, not a one-time thing.

So I think that while it was great that someone made a video about long covid, which frankly, no one else seems to do here these days, it was also a missed opportunity for discussing ME/CFS.

One interesting thing the reporter did is that he asked Péter Takács, State Secretary for Health about the bad situation of people with LC. And the only reply they got was a link pointing to the long covid entry of the Egészségvonal website. That is basically the equivalent of the NHS page about long covid.

Anyway, it is in Hungarian, so you won't understand a thing, but here is the video in the article: https://www.szabadeuropa.hu/a/a-kor...lunk-van-csak-nem-vesszuk-eszre/33264739.html

 

Dr Beáta Sebestyén, the Head of Department, Department of Quality Improvement (from the Ministry of Interior) just called me on the phone after I sent them a short email yesterday asking about the promised consensus recommendation. I asked how it is going and why they said "they found contradictions" when they made it a consensus recommendation instead of a guideline (which they had first promised).

She said that the consensus recommendation is basically finished, they are going to send it to me soon, before publishing it. Now they are only waiting for some shorter, 1 or 2-page long additional commentary from the Department of Immunology and Department of Family Medicine (these are departments of the Professional Health Colleges).

The head of the Department of Psychiatry is going to send me the paper apparently. (I'm raising an eyebrow here.) Reminder: the recommendation was created by the Departments of Internal Medicine and Psychiatry, with Family Medicine and Immunology taking a smaller part in it. The Head of Internal Medicine was the chair.

Dr Sebestyén also said that she thinks the recommendation is great, beautiful, a very very good one, they are very proud of it.

I pressed her a bit about the "contradictions" they found and why they first promised a guideline, then changed it to a consensus recommendation. She said a couple of things. One was that they don't think there is enough research on ME/CFS for a full guideline. (They first promised it though.)

Another thing she said that making it a consensus recommendation instead of a guideline will make it more widely read in medicine. Guidelines are published in the official Healthcare Bulletin of the Ministry of Interior, the consensus recommendation will be published in Orvosi Hetilap (Medical Weekly), which is a Hungarian language, very old medical journal. (Kind of like the local BMJ probably.) I was surprised by this and personally I have no way to tell if this is true. I find it a bit strange if the official bulletin of the ministry is less well-read.

Anyway, she said they find it very important that the recommendation reaches as many people in medicine as possible. So they are also going to send it out to GPs, so every GP in theory will be informed. She emphasized they find this very important.

I think this is what she mostly said, if I remember something else from our conversation, I'll add that too in a later comment.

Important thing: I have no idea what is in the recommendation, she didn't reveal anything about that. It may be the worst BPS stuff ever, it may be reasonably acceptable, I have no idea at this point.

Additional info: she just called me again, while I was writing this: I will have to go to meet them on 28th January for some discussion in person. I had a lengthy conversation about this to make sure this is not the only time I can read the recommendation and give feedback. She was wishy-washy first (hence the longer convo) but she eventually kind of promised that the text will be available to me to read in detail afterwards and I will be able to give feedback eventually. She said this is not actually up to her but up to the Head of Psychiatry and it should be arranged with him.

She was on one hand quite nice in our conversation, on the other hand I also felt she had mild annoyance towards me and my questions, as "they are working for us, this is their job, I should have trust in their work". I may be seen as a bit of a problem person.

I'm not happy about the personal meeting. Not because of going there, I can do that, it is not that far, I live in the centre of Budapest. But it is difficult to react well quickly with brain fog. I'll try my best though.

 

Btw, the guy I have to meet, János Réthelyi, the Head of the Department of Psychiatry, seems to be mostly interested in the biological background of psychiatric diseases, the genetic background of schizophrenia and ADHD and the genetic background and environmental risk factors in developing these. I don't know how much this helps or us or not.

The first Head of Dept was quite BPS and I was worried about him. Réthelyi became the Head of Dept afterwards (sometime last year) and I'm hoping he may be a better candidate for dealing with something like an ME/CFS consensus recommendation. But I have no idea, this is simply based on his area of interest with all the genetic stuff and this may be no more than just wishful thinking on my part. But at least his main interest is not "functional somatic symptoms".

 

Another thing is: if you remember, last year I asked the National Centre for Public Health to rewrite their page about ME/CFS on the governmental website Egészségvonal ("Healthline"), which is kind of like the NHS website with information for the general public. They rewrote it without any objections and without much delay.

It is the National Centre for Public Health that provides the information there (which is under the supervision of the Chief Medical Officer), but according to the website, they are cooperating with the Ministry of Interior in doing so. I don't know to what extent. But I know that when I asked them to rewrite the ME/CFS page, I also sent them the letter from the Ministry where they acknowledged the change in the scientific views on ME/CFS and promised us a guideline. So there may have been some discussion and agreement from the Ministry. Or not, just my speculation.