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

Really long interview with Éva Rákóczi, head of the infectology-rheumatology department of the long covid clinic at the University of Debrecen (this was the first long covid clinic in Hungary). This was published on ElitMed, in the Hungarian-language Lege Artis Medicinae journal.

The introduction is pretty horrible, talking about organic and psychosomatic causes but that was actually the interviewer's doing and the interview itself is a bit more subtle.

Dr Rákóczi has of course a somewhat limited knowledge (no mention of ME/CFS or post-viral syndromes) and tries to explain everything based on what medicine already knows. So there is a lot of focus on organ damage etc but she also doesn't seem to push a very aggressive BPS agenda and says that we don't really know what long covid is, this is something that is currently being researched in the world. She does mention the overreaction of the immune system or that virus particle may persist etc.

The interviewer asked about the psychiatric issues a few times but she avoided saying anything directly about psychosomatic causes and started to talk about something else instead, however there are also some signs of BPS way of thinking.

She said things like "people with long covid can be under a lot of stress" and "many of them can benefit from a psychologist listening to their problems" and mentioned a patient who is suffering from serious depression caused by his current quality of life. On the other hand she also said something like "patients recover more quickly if they are properly faced with the illness", which may be BPS stuff. She also mentions that patients should be calmed down that at least they survived the infection and they shouldn't be sent to too many medical examinations.

The good part: she explicitly mentions POTS (calling it a strange condition), also postural hypotension, postural dizziness, autonomic dysfunction.

However, she keeps saying that she thinks the patients who don't come back are probably on the way to recovery. And we know how this may actually be far from the truth. She says that once they have calmed down after being examined, they become a bit more stress-free and accepting of their symptoms and feel less inclined to go back.

So to me it seems this is a mix of "somethings going on with the immune system" and "it helps a lot if the patients calm down and stop panicking over their symptoms".

She talks about taking things slowly and that people shouldn't return to intense physical activity (eg workouts) right away.

This is where it can be found, registration is necessary but it is free: https://elitmed.hu/kiadvanyaink/leg...is-rengeteg-long-covid-beteggel-kell-szamolni

 

Sorry to divert this thread but this reminded me of a comic I recently saw:



Edit: a word

 

Earlier I wrote about the roughly 1 million euros the Hungarian National Academy of Sciences is planning to spend on high risk research in connection with "post-covid phenomena". They want to fund 6-12 studies in the next 2 years. I think the original deadline was October (with actual research starting in December) but now they are extending the deadline for application to 31st January (and they say they will decide about this until March).

I wonder if their is a lack of serious interest from researchers or what is going on.

The short announcement on the website of the academy (google translate): https://mta-hu.translate.goog/poszt...l=hu&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=nui

 

This one is from Slovakia, not Hungary this time. (Slovakia has a sizeable Hungarian minority for historical reasons and they have their own Hungarian-language news sites, so I can read about what's going on there.)

So the thing is: apparently, they don't have any long covid clinics there yet. Someone who recovered from covid has just started a petition to set up such clinics, because currently patients get lost easily in the system with their health problems after covid.

He brings up the Czech Republic and Hungary, that those countries already have such clinics operating. Well, it is true, we've had them for quite a while now and there seem to be plenty but unfortunately, they seem to focus on actually detectable organic problems (with the lungs etc) after covid and people with ME/CFS-like long covid aren't really helped, they aren't really taken any more seriously there either. (Based on what they write in Facebook groups.) I guess it will be similar in Slovakia if they start to set up these. But it has to start somewhere, of course.

Article with Google translate: https://felvidek-ma.translate.goog/...l=hu&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=nui

On another note, a researcher (of Hungarian ethnicity) working for the Centre of Experimental Medicine at the Slovak Academy of Sciences very recently followed my Facebook page. So who knows, I may even have a teeny-tiny influence over there too. That would be awesome!

 

English-language article in the Budapest Business Journal. It is a promotional piece on long covid, an interview with someone from a private clinic, however, there are some interesting bits:

This part is not particularly great:

If no serious organ abnormalities are found, symptoms are often caused by vitamin deficiency, mineral deficiency, or locomotor complaints. These conditions can be successfully treated by supplementing missing trace elements, musculoskeletal rehabilitation, and sleep therapy, although they often demand a lengthy period of time and perseverance.​

But this is actually a nice surprise (never heard this here before):

However, there are syndromes and diseases in which physical activity is specifically contraindicated. If there is no chronic fatigue syndrome behind the complaints, I suggest that you return to physical activity three months after the infection. However, it is important to bear in mind that resuming active exercise should be gradual, because excessive exertion can cause a significant relapse in recovered patients’ capabilities.​

Article in English: https://bbj.hu/business/people/interview/post-covid-symptoms

 

Symposium at the Hungarian National Academy of Sciences on 16th November: Current issues in post-COVID syndrome

There will be a live stream on YouTube too, so anyone can watch it. It will take place between 10:00 and 16:30, quite a lengthy event.

The programme (Google translate):

As you can see, some of it is about post-acute Covid sequelae and not really post-covid syndrome. However, there are a few speakers who cover more relevant topics to us, neurology, immunology, rheumatology. I'm planning to watch those, however, my expectations are quite low. Zoltán Szekanecz, who is going to talk about the immunological mechanisms, keeps saying that post-covid syndrome mostly affects people who had severe covid infection or people who have chronic diseases. I remember he talked about autoimmunity in long covid before (never mentioned ME/CFS, as far as I know), so I'm interested in what he is going to say though.

Source: https://mta.hu/esemenynaptar/2021-11-16-a-poszt-covid-szindroma-aktualis-kerdesei-4083

 

These are the first studies on long covid that earned grant from the Hungarian National Academy of Sciences. There are more actually because they have awarded grants to non-medical studies too in connection with covid and also medical studies in connection with other complications after covid, so I only include the ones that interest us. You can read the details below every title.

Google translate:

Renáta Cserjési

Innovative rehabilitation of neuropsychological functions in post-COVID patients

Eötvös Loránd University

--

Ádám Dénes

Role of inflammation and microglia in COVID-19-related neuropathology and long-term neurological symptoms (This is an English title, so I guess it will be an English-language study)

Research Institute for Experimental Medicine

--

Gábor Kovács

Follow-up study of the discovery of immune (epi) genetic components that play a key role in long-term COVID syndrome in children

Semmelweis University

--

Balázs Sarkadi

Investigation of the genetic background affecting COVID-19 disease susceptibility and post-covid syndromes (Another English-language study)

Natural Science Research Center

--

Márta Széll

Assesment of immunological background and prediction of post-COVID syndrome by extracellular vesicle profiling (Another study in English)

University of Szeged

Edit: sorry, forgot to add the source: https://mta.hu/mta_hirei/a-poszt-co...-kiirt-palyazat-elso-korenek-nyertesei-111746

 

So I decided to watch the long covid symposium of the Hungarian National Academy of Sciences but I only got to the third speaker when I decided to give up (although I semi-watched the next two but I was also too annoyed to really pay attention - I didn't miss a lot though: they mentioned fibromyalgia and POTS but only in passing). The third speaker was József Janszky from the Neurology Clinic at the University of Pécs.

He started well, he gave a very good description of post-covid syndrome (unlike some others who kept saying it affects people with severe covid infection, etc). He talked about PEM (calling it post-exertional weakness but unfortunately that's how they teach it at SOTE, in that very problematic material that I previously complained about to the author), and that it doesn't seem to go away for a lot of people etc. I was thinking: I should message this guy afterwards, he seems like a potential ally.

Then he asked the question: How much of this is immunological and how much is a psychological effect? And then he presented the worst BPS nightmare in front of the Academy that I could imagine here in Hungary. First, he pulled a Michael Sharpe and said: a lot of covid long haulers are online, present in social media and you would expect that to be a good source of support but it is actually a very negative effect and that can help the symptoms persist.

Also, why would a respiratory illness have all these neurological symptoms afterwards? And the epidemiological data is hard to believe: first he said the prevalence is 10-60% but then he kept mentioning these studies of 50% prevalence even 6 months later and he implied he doesn't believe those numbers. (Thus long covid as a biomedical problem should be doubted.) Also, most people are between 15-30, they weren't even that much affected by covid.

Then he started talking about ME/CFS, which he said cannot be separated from long covid. He called it CFS of course, so that's how I'll call it here too. He said there have been many problems with it. He gave a brief history of the name, mentioning neurasthenia, then saying it was first called ME but there was no neuroinflammation, so they later called it CFS instead but patients now want it to be called ME again, even though the name is not supported by evidence. There is no clear cure.

There is very heated debate going on between patients and doctors (although he also added that even between doctor and doctor but that's not what he wrote on the slide). Activists criticized PACE (he only called it a 2011 paper in the Lancet), which proved that CBT and GET improves this condition but which is still not withdrawn (he saw this as proof it cannot be wrong then). Patient activists threatened the authors.

Also, patient organizations made Cochrane withdraw their reviews and NICE changed their guidelines etc etc etc because patient orgs asked them to. For all these reasons, scientists gave up on studying this condition.

This is something that shouldn't be repeated with long covid and neither patients, nor doctors want this to happen.

He then brought up XMRV and that the researcher, Mikovits is now an infamous anti-vaxxer. So you see, we really don't need this. (Seriously, these are the things he believes are important to talk about at the symposium? Wtf.)

Then he started talking about how there is no organic damage in long covid and it means this can be rehabilitated etc etc.

Jeez, what a nightmare.

 

I have rewatched the video now and forgot to add one thing: he said the only reason LC is not called CFS is because doctors don't want to get involved in these kinds of things again, so it is just better to stick with LC.

 

Not exactly what one would call a deep thinker, uh? Did the virus not get the memo, that they are restricted to the lungs and are forbidden from moving elsewhere?

 

So, he's never heard of Guillain-Barré Syndrome ?

[ETA: Another major cause of GBS is foodborne contamination with the bacteria Campylobacter jejuni.]

 

I lead slovak ME/CFS group and i also follow some slovak long covid groups. To my knowledge there is already one clinic for long haulers in Nove Zamky. But how you write they are mostly focused on detectable organic problems. Btw the petition for clinics goes very bad. The people dont sign it even you promote it every day

 

So I sent a message to the Academy about the presentation above and they replied (my message was a list of questions about it actually). They absolutely avoided the topic about patients' threats or the claim that dozens of doctors left the field, they didn't address it at all. They replied there was nothing in the presentation that would paint ME/CFS patients in a bad light or that prof Janszky would blame the patients.

I also asked them about equal representation of the differing views on the disease and the current shift happening elsewhere in these views. They said they cannot make a statement about the disease in general, only if this specific condition is the actual topic and then they would invite different experts, but at the symposium the topic was long covid, not ME/CFS. Prof Janszky brought up ME/CFS in connection with this and he didn't present any personal opinion of his own. (I asked if all this was in line with the views of the Academy, this may be a reply to that.)

The Academy absolutely doesn't want to paint any patient groups negatively, on the contrary, all their efforts serve the goal to find the best treatment for all diseases. They understand my sensitivity and thank me for sharing my opinion with them and wish me a treatment for my disease.

They also sent my letter to prof Janszky who said that he only talked about the war between the different groups but didn't say who is right and if it was easy to misunderstand then he corrects what he said. He only said that patients are left alone, and not that it is their fault. (He actually said this after talking about the threats against the PACE people, that patients ask institutions to change recommendations and that many clinicians left the field. So yeah, he didn't say it in a single sentence but it was very heavily implied.) He says they are left alone because not one field in medicine feels they belong to them and that is why he recommended complex rehabilitation.

He says that according to them, mid-term long covid seems to have a biological basis and thus maybe the biomarker of ME/CFS will be found too and thus a therapy as well. Currently neither the mechanism, nor a therapy is known.

Well, his message is quite different from the presentation. They also haven't addressed several of my questions (the threats, etc, I mentioned above) but also why he literally said nothing about the disease at all (apart from the main, compulsory symptoms), as he mostly talked about the patients. Or why it was important to mention Judy Mikovits and her anti-vaccine sentiment (while again, sharing almost nothing about the disease itself). I also asked them about the fact that Janszky said Cochrane, NICE etc were influenced by the patients and if they question the scientific credibility of these institutions. They haven't addressed that either.

I also asked what they think about NICE, the CDC etc having a very different stand on ME/CFS from what happens in Hungary and especially that they mention that exercise therapy is not tolerated by some patients/ it can harm them. They didn't answer that one either. They also didn't say anything about me mentioning that the stigmatization pwME face is very real and it is important to avoid further stigmatization for their own sake, especially in such a dire situation they are in (and I referred to NICE and the IOM report which specifically mention stigmatization).

 

Thanks for informing us @Wyva and for sending a letter.

 

Although you didn’t get the responses to specific points you wanted, or a more general acknowledgement that things Prof Jansky said were a problem, I think you’ve still achieved something. They know that patients are becoming increasingly well informed and they are on notice that they can’t remain unaccountable for ever, even if they are perhaps denying it to themselves as well as to you! Thank you for what you are doing, @Wyva

 

If you have a social media presence then you could post it there, and attempt to put some pressure on them that way. Twitter seems far better for this than Facebook though.

 

Unfortunately, Twitter is really not popular in Hungary, so I have to stick with Facebook. (I have about 2500 followers there with about 450-500 group members but the algorythm is not my friend at all and most people aren't that much interested in advocacy to begin with - though a few pwME were really excited about this letter.) I also run the ME/CFS website here and I actually wrote an extremely long article there that questioned or refuted about 90% of what the prof said, well supported with proper sources. That was included in my message to the Academy, so they could see that it is actually not so hard to challenge these things. And they know about the website now, which they may or may not care about, I don't know that.

But yes, I'm planning to share their response and in the meantime I also decided to ask a civil rights NGO about how far I can or cannot go in these kinds of things. (I'm not asking them to take on my case - I don't even have a case or plan to have one - I just have some very specific questions to make sure I won't cross any line in the future accidentally that might lead me to some legally risky situation.)

 

https://twitter.com/user/status/1463610373517553671