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

195th General Assembly of the Hungarian Academy of Sciences -
The long COVID syndrome: Lingering illness after the pandemic

Date: 5th May, it can be followed online.

Programme:

Chairs: Veronika Müller, Sándor Szabó

10.00–10.05 Opening remarks - Veronika Ádám, Section President of Section of Medical Sciences of HAS (Hungary)

10.05–10.25 What is really ‘Long COVID’? - Veronika Müller (Hungary); Sándor Szabó (USA)

10.25–10.45 Lessons from the COVID-19 mRNA vaccine development - Katalin Karikó (Germany–USA)

10.45–11.05 COVID-19 is, in the end, an endothelial disease - Peter Libby (USA)

11.05–11.25 The main cardiovascular manifestations of Long COVID - Béla Merkely (Hungary)

11.25–11.45 Fatigue, dyspnea & pulmonary signs in Long COVID - Veronika Müller (Hungary)

11.45–12.05 The neurologic manifestations of Long COVID - József Janszky, Tamás Dóczi (Hungary)

12.05–13.00 Lunch break

13.00–13.20 Nutritional deficiencies that may predispose to Long COVID - John Schloss (USA)

13.20–13.40 The post-COVID stress syndrome & other neuroendocrine changes in Long COVID - Sándor Szabó (USA)

13.40–14.00 Specific coronavirus associated disease in children: MISC - Attila Szabó (Hungary)

14.00–14.20 The current therapeutic options for Long COVID - Klára Gyires, Szilvia Sebők (Hungary)

14.20–14.40 Break / Szünet

14.40–15.00 The socioeconomic impact of COVID-19 - Zoltán Ács (UK–USA)

15.00–15.40 The prevalence & incidence of Long COVID in Ukraine, Greece, Germany & Hungary - The 4 senior investigators in our grants from these countries

15.40–16.00 Round table discussion

16.00–16.20 Q & A
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My comment: some of you may remember that they organized a long covid symposium a few months ago. It was mostly about the organic problems after covid (and you can see this one is also about all the different post-covid sequelae). Only one person, Professor Janszky, a neurologist talked about the ME/CFS-like long covid and he also talked about ME/CFS itself. That was pretty much a disaster: instead of sharing knowledge about the disease we had to listen to how awful the patients are with their war on poor scientists, they even threatened them etc and that NICE, Cochrane are all under the patient activists' influence. And it is because of all these problems, this war that long covid is not called ME/CFS, to prevent the same thing happening with these patients. I complained to the Academy in a letter afterwards but they pretty much dismissed it by talking about totally different things, not the issues I raised. This time, professor Janszky will talk about the neurological problems of LC again, so can't wait. :grumpy:

I can see a few speakers from the US but I'm not familiar with their names.

The two women talking about therapies are from the field of pharmacology.
 
The Academy is launching a post-Covid national research program

Previously I wrote about the two rounds of post-covid studies that already won funding from the Academy (the topic was post-covid everything, including economic, social impact etc of the pandemic, so not just long covid but most were medical). Now they promised to continue this research with further studies, now called the "national post-covid reseach program". It will be interesting to see which direction the further studies will take.
 
So today is the international long covid conference of the Academy (posted at the top of this page) and I'm watching it online. So far it is much better than last time but not perfect.

The first section was the introduction basically, a brief summary of long covid in general. It wasn't so great, the speaker said a few things I didn't like, for example that the poorly defined disease CFS must be excluded for a long covid diagnosis but I honestly think he just didn't really know what he was talking about with regards to CFS. He mentioned a case of a young boy who improved a lot after cardiopulmonary rehabilitation but that his brain fog still remained so I think at least he acknowledged that rehabilitation may not work so well. He stressed that you must have confirmed covid infection for a diagnosis of long covid.

Then there was Peter Libby from the US talking about covid as an endothelial disorder. At the end he briefly talked about POTS and that they apply an exercise regimen because that is what they know (and medication of course). He stressed they need to learn a lot more about these issues that the cardiovascular and nervous systems cause.

Then there was the cardiovascular section talking about all the cardiological manifestations of long covid, including organ problems. This speaker also mentioned POTS and that it is poorly understood. Then she talked about returning to sport but I missed this part and have to talk another look later. But she may have been talking about the difficulties in this (but I really have to check). She said that often they don't find an underlying pathology but the symptoms are very real regardless and need to be studied.

Then came Professor Janszky, the neurologist who said a lot of horrible things about ME/CFS patients the last time (things originally coming from the PACE authors themselves). Again, his presentation of long covid was the most accurate of all (the others didn't really differentiate between organ damage, hospitalized patients and the rest). He stressed it is mostly people with mild original infection. Classic neurological problems are very rare. 25% are unable to work. He talked about PEM and that long covid is a central nervous system issue probably.

Then he talked about CFS, that it is mostly post-viral and especially prevalent after EBV. He talked about the names of CFS, correctly and in historical order! (Neurasthenia, ME, CFS, etc.) He found some really old medical source from 1899 in Hungarian that talked about the long term effects of the Russian flu and also quoted similarly old things about neurasthenia in Hungarian: it was eerily similar to all the ME/CFS symptoms and even mentioned infectious triggers. He cut the part about ME/CFS patients short this time: there is a lot of controversy, patients and researchers don't agree, so they avoid calling long covid CFS for this reason. That was all: it was bad but at least not as bas as last time. Maybe it was worth sending that letter after all.

He also said that loss of smell and taste are the only specific neurological symptoms. They found that the long haulers' orbifrontal cortex is thinner (and mentioned the UK Biobank who found something similar). This doesn't mean it is irreversible. He said that typical long covid may be a subtype of CFS and it may help CFS patients who have been suffering for 200 years without therapy. (So he didn't say PACE was great like last time and that therapy is available regardless of what patients and NICE etc say.)

He said complex multidisciplinary rehabilitation is necessary (so not just pulmonary etc).

There is a second part coming, I may be back with that if they say something interesting.
 
The second part was less interesting to me. However, we still weren't left without some first class BPS bullshit but this time it came from a German guy called Andreas Stengel from the University of Tübingen.

Just in short: among the predictors of post-covid fatigue he mentioned previous episodes of depression and anxiety, a lack of social support. He showed us a picture from the Dubbo study, showing that other infections can trigger similar fatigue (he talked about just fatigue the whole time I think). He never mentioned ME/CFS, not even once.

He said this post-covid fatigue is very likely the result of BPS factors. There may be a genetic predisposition and an infectious trigger but lack of social support etc contribute. He even said how the ICD-11 diagnosis of bodily distress disorder is the perfect category for post-covid fatigue because fatigue is even specifically mentioned in it. Well, he conveniently forgot to say anything about the fact that ME, CFS and PVFS are all very specifically mentioned as diagnoses that should be excluded from bodily distress disorder. (But was still happy to use the Dubbo study.)

He said people with this type of fatigue should be encouraged to be active, physiotherapy and psychotherapy is important, medication alone is not enough.

The whole conference was in English, so I attach the video for Germans, starting where Stengel starts to speak, if they want to hear everything he said:



There were also two speakers from Ukraine, speaking online from Lviv about long covid prevalence there etc and they even said something about Putin and the war but the sound quality was pretty bad so I didn't understand what.
 
This is from the Czech Republic. I started following the Facebook page of their ME/CFS patient organization and these are some recent posts from there (with Facebook's translation to English):

(In short: looks like they managed to get the Czech committee that develops guidelines to approve developing one for ME/CFS. Of course the patient org wanted them to adapt the NICE guidelines but the process was eventually stopped.)

Dear friends,

allow me to inform you that last week, the Committee on Clinical Recommended Practices (KDP) at the Ministry of Health managed to approve the intention to develop a clinical recommended procedure for chronic fatigue syndrome (ME/C) FS). This recommended procedure should be followed by adopting the British NICE guidelines and adaptation to the Czech environment. Now a working group will be created to work on this procedure and then submit it for further approval, which according to the rules of the KDP program at the Ministry of the Czech Republic, will include further steps, including opposition proceedings. The leader of this working group is MUDr. Milan Trojánek from the hospital Na Bulovce. This process will take, realistically speaking, many months.

Despite our efforts, our patient association is not an official participant in this process, because this is not a custom in the Czech environment, however, we will continue to press all parties involved and try to offer our help and experience. Our goal is to work as much as possible for the improvement of the situation of patients with ME/CFS in the Czech Republic. Perhaps the adoption of NICE guidelines to the Czech Republic is a step in the right direction, in our opinion.

The whole process of proposing and approving this intention was considerably elongated and complicated, and it was almost thrown off the table twice. For the first time, we managed to return this topic to the game with an open letter in which we tried to draw attention to the ill situation of patients, and for the second time thanks to former Minister of Health Adam Vojt nach, who stood up for the topic. Mr. Vlastimil Milata, Chairman of the Patient Council, also played an important role in this process of negotiations and communication with various stakeholders. A big thanks to all these people.

Please note that this is only the first step. There is still no certainty that KDP will be able to accept ME/CFS in our country. And even if it succeeds, for which we will do our best, it will most likely not mean a sudden improvement of the situation, so it is not appropriate to have too much hope. The situation of patients with ME / CFS not only in the Czech Republic remains desperate and in Czech medicine we continue to not register significant efforts to improve it. Hopefully, the possible adoption of the current recommended procedure, which would contain basic information and recommendations related to ME/CFS, would mark a significant step in the right direction.

I wish everyone a nice day, if possible.
John Choutka
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Dear friends,

yesterday 5.5.2022 in the afternoon the proposal of clinical recommended procedures for ME/CFS was canceled at MZ. This happened at the initiative of the Czech Medical Association JEP (text edited because Facebook originally mistranslated this as a medical company), which opposed this proposal through its chairman. The proposal to abolish KDP came unexpectedly, he was not communicated with us.

I am very sorry, we put a lot of effort and part of our health into this. I assure you that we did our best. However, it is difficult to change something when those who are supposed to help us are against us.

I find the whole approach of medicine to our disease, as well as the way we are treated, extremely incompetent and has a devastating impact on the situation of patients. Unfortunately, no positive change is on the horizon.
Despite this, I ask you to refrain from indecent or offensive speech.

Jan Ch.
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I think MZ means Ministry of Health.

Edit: JEP is not a medical company, but I think it is the Czech medical association.
 
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Thanks for sharing this @Wyva. That's sad news; the frustration of Mr Choutka is apparent and very understandable. I'm sure the effort will have brought better care of people with ME/CFS in the Czech Republic nearer, even if it is still some way off. There must be doctors in the Czech Medical Association who themselves have Long Covid who will eventually speak up.
 
A few days ago a Hungarian network of private clinics organized a series of short lectures on long covid and I watched the two videos about the neurological manifestations. One speaker couldn't participate due to illness, so it was a different neurologist (Dr Anita Mező) who gave the presentation instead of her but she made it clear that it wasn't her own work.

The whole thing wasn't particularly interesting until after Dr Mező stopped and said: "Let me interject here with something that I personally would like to add to this topic." Then she went on to talk about ME/CFS (which wasn't otherwise mentioned at all), she said it has been known for a long time, it was introduced in the ICD in 1969 as a neurological disease, its code is G9330 and it is called post-viral fatigue syndrome, aka myalgic encephalomyelitis aka chronic fatigue syndrome. It is mostly triggered by EBV, cytomegalovirus and herpesviruses in general and it has been treated really badly by medicine until now. It was seen and often still is seen as a psychological disease. Patients hope that due to long covid ME/CFS will get more attention, more studies will start and a treatment may be found, because right now there is only symptomatic treatment.

Then she continued with the other neurologists' lecture (which was pretty horrible and explained long covid sleep problems with BPS factors - the usual stuff about bad sleeping habits and practically not knowing how to sleep like a normal person).

I thought her interjection was great. She also mentioned vaccinations quickly: that vaccines seem to cause weird symptoms in some people and more attention should be given to this topic. I'm planning to message her but this part makes me a bit wary. I mean it is OK if this is literally what she means but I wouldn't want to team up with an even slightly anti-vaxxer doc and what she said was too short for me to know what she really thinks about this.

Another thing: I actually know who she is. I remembered her because a few weeks or months ago she registered on my website! She was the first person who did so and is not a spambot. :D (The people who follow me do so on my Facebook page or join my FB group.)

(To be honest, during her interjection I thought: hm, this part sounds like the things Professor Janszky said in his lecture the other day. And this part sounds like what I wrote. :) But there is of course no way to know, it may have nothing to do with either of us.)

So I'm planning to message her but I'm happy to accept some suggestions on how to do so. I know what to write to an academic or a researcher but how should I approach someone who is a doctor but neither of the above two?

I mean my goal is to see how much she is really interested in this, the depth of her knowledge, whether it is worth sending people to her for diagnosis etc, whether she is actually willing to do it and so on. But is there anything else I can ask from her?
 
Sounds hopeful. Good luck.

I think I'd like to know how she came to be interested in ME/CFS and how she has learned about it. I mean, it would be good to know if she has any personal connection through family or friends, or perhaps she has patients with it that she has known for a long time - but it's hard to ask that directly first up. I think an answer to the questions in the first sentence would tell you something useful about her beliefs, knowledge and commitment, and also about where sympathetic doctors are currently getting information from.
 
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One of the long covid studies the Hungarian Academy of Sciences is funding is this, as mentioned previously: - Training-induced compensation of cognitive decline in post-covid patients (Zsófia Anna Gaál, Research Centre for Natural Sciences)

I saw it today that they are recruiting now and they seem to target older people.

Details:

- applicants must be between 60-75, with covid infection in the past six months and symptoms that still persist (exhaustion, memory and concentration problems, problems with sleep, dizziness)
- the goal is to reduce symptoms with 8 sessions of some sort of training that can be done at home online. One session is about 50 minutes
- there will be examinations beforehand, a 30-minute neurological examination, also cognitive evaluation and EEG test, which is roughly 40 minutes
- they will repeat the cognitive evaluation and EEG test to track how the training improves their symptoms. This will take 3 hours (altogether I guess but they don't go into detail)

Source (FB page of the Research Centre for Natural Sciences):
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They can't be bothered to notice that cognitive problems are erratic, and so cannot possibly be related to brain connections?

They think that people can be trained out of something that can switch on and off in a matter of minutes? Can be improved or worsened by a vaccine or a mild infection? What was possibly "un-learned" or broken if it can switch on and off like that?

It's the complete lack of attention to details that gets me. All the information is there in front of them and they only look at what they want to see, ignore anything that doesn't conform to their expectations. They have scripts with conditionals that are clearly not met, and yet it still executes.

Literally:

if(up == down) {
// do the script
} else {
// do the script anyway, no one cares
}

I am continuously shocked at the level of systemic ineptitude, just how widespread it is.
 
I talked about a potentially sympathetic neurologist in this earlier, longer post:

Wyva said:
A few days ago a Hungarian network of private clinics organized a series of short lectures on long covid and I watched the two videos about the neurological manifestations. One speaker couldn't participate due to illness, so it was a different neurologist (Dr Anita Mező) who gave the presentation instead of her but she made it clear that it wasn't her own work.

The whole thing wasn't particularly interesting until after Dr Mező stopped and said: "Let me interject here with something that I personally would like to add to this topic." Then she went on to talk about ME/CFS (which wasn't otherwise mentioned at all), she said it has been known for a long time, it was introduced in the ICD in 1969 as a neurological disease, its code is G9330 and it is called post-viral fatigue syndrome, aka myalgic encephalomyelitis aka chronic fatigue syndrome. It is mostly triggered by EBV, cytomegalovirus and herpesviruses in general and it has been treated really badly by medicine until now. It was seen and often still is seen as a psychological disease. Patients hope that due to long covid ME/CFS will get more attention, more studies will start and a treatment may be found, because right now there is only symptomatic treatment.

Then she continued with the other neurologists' lecture (which was pretty horrible and explained long covid sleep problems with BPS factors - the usual stuff about bad sleeping habits and practically not knowing how to sleep like a normal person).

I thought her interjection was great. She also mentioned vaccinations quickly: that vaccines seem to cause weird symptoms in some people and more attention should be given to this topic. I'm planning to message her but this part makes me a bit wary. I mean it is OK if this is literally what she means but I wouldn't want to team up with an even slightly anti-vaxxer doc and what she said was too short for me to know what she really thinks about this.

Another thing: I actually know who she is. I remembered her because a few weeks or months ago she registered on my website! She was the first person who did so and is not a spambot. :D (The people who follow me do so on my Facebook page or join my FB group.)

(To be honest, during her interjection I thought: hm, this part sounds like the things Professor Janszky said in his lecture the other day. And this part sounds like what I wrote. :) But there is of course no way to know, it may have nothing to do with either of us.)

So I'm planning to message her but I'm happy to accept some suggestions on how to do so. I know what to write to an academic or a researcher but how should I approach someone who is a doctor but neither of the above two?

I mean my goal is to see how much she is really interested in this, the depth of her knowledge, whether it is worth sending people to her for diagnosis etc, whether she is actually willing to do it and so on. But is there anything else I can ask from her?
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I messaged her a couple of days ago and asked if she might potentially accept ME/CFS patients in the future (for diagnosis, medical advice according to NICE etc) and she replied (Google Translate):

Dear Agnes!

Thank you for the letter! Sorry I didn't answer for so long, but I was very busy. All my appreciation for your work and website.
I have to admit that I didn't know almost anything about this disease either, but I learned a lot by reading the website.

Many questions have been raised about Covid virus infection, and then more patients have showed up with similar but diverse symptoms after vaccinations. These symptoms did not appear to be due to the virus but to the immune response. So I tried to find answers to this and that’s when I came across your website. In the presentation, I also wanted to show that not only Covid exists and that long-term symptoms are also caused by other viruses.

I would love to learn more about this illness. I am currently between two jobs, working in a specialist clinic for the time being, and then I will be in a hospital ward from 1 June, so I do not yet know how much free capacity I will have left, but I would be happy to stay in touch with you to see if we can move forward.

Sincerely, Dr. Anita Mező​

I'm only sharing this here and not on my website yet, because I don't want to get everyone's hopes up if nothing really comes out of this in the end.
 
The University of Debrecen (one of the biggest unis in the country, it also set up the first long covid clinic) is organizing the 17th Behavioural Science Days, where behavioural scientists from all four medical universities will participate. The main topic will be covid and the impact of the pandemic but this is what I've found at the very end of the article:

Google translate:

"There are also lectures on eating disorders caused by the epidemic, time spent sleeping, anxiety about climate change and the links between mental health status, and changes in the perception of chronic fatigue syndrome."​

I managed to find the programme and the abstract of the presentation:

Google translate:

Dr. István Tiringer
assistant professor
University of Pécs, Faculty of Medicine, Institute of Behavioral Sciences

Changes in the perception of chronic fatigue syndrome

Chronic Fatigue Syndrome (CFS) receives little attention in Hungary. Empirical research has led to significantly different views on the causes and treatment options for CFS.

There is still convincing evidence that CFS is a functional somatic syndrome. Over the past decade, however, there has been a growing body of views that have sharply opposed psychosomatic concepts and argued for the immunological origins of the disorder. In addition to scientific debates, patient organizations have also made significant political efforts to recognize chronic fatigue as an organic disease.

The COVID-19 epidemic and the symptoms of fatigue, which are common in the acute and post-infectious condition, have given another impetus to CFS research.

The presentation analyzes the views, pros and cons of CFS judgments based on current publications. It also summarizes some ethical principles that may help address the uncertainties surrounding CFS and postcovid fatigue in patient care.​

I'm trying to find out if they are going to record this but I can't see anything so far.
 
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It sounds like this will be a similar narrative to what Professor Janszky presented last year at the long covid symposium of the Academy: The science is sound, no probs, it is just that these extremely powerful patients with their incredibly strong political ties keep influencing NICE, Cochrane and so on and so on. But we shouldn't be deterred and should stick valiantly to the unquestionable BPS science, since it is obviously true and everything is just a matter of politics. The science is still OK, no change in that.

(And this is also similar to what the author of the CFS chapter in that family medicine textbook at Semmelweis University replied to me.)

I'd love to be proved wrong!
 
Trish said:
Oh dear. I hope you're proved wrong.
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Well, at least the presentation focuses on the change, so maybe I'm just too harsh with how psychiatry might deal with this. I don't think this will be available online and I would love to see it. Do you think (not necessarily you, Trish, but people on the forum in general) that it would be seen as too much if I asked him in email if any material in connection with his presentation is available to see for those interested (me)? I mean he is a BPS person and might interpret this the wrong way, who knows. I'm just so damn curious.

Edit: He is one of the authors of the chapter "Somatoform disorders" in the Hungarian Handbook of Psychiatry.
 
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