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

err.....why?

I have lost people very close to me very suddenly, I mean literally dropped dead.

I have also been made redundant - at a time when my industry was taking a downturn to boot so fewer jobs and more people going for them.

Not covid related, granted. Both deeply unpleasant & pull the rug right out from under your feet. However, they are still completely different experiences.

Are the psychs who come up with this guff some sort of budget androids or something with a really cheap AI chip where their understanding of emotions & trauma should be?

 

There's no specific medication for the chronic fatigue of post-covid syndrome

I've found the first doctor who actually talked about chronic fatigue syndrome in connection with long covid in Hungary. So far every doctor only saw it as either organ damage or a psychiatric problem and long covid as we know it just didn't seem to "officially" exist. (CFS is the only name used by everyone in the country: it's because no one has ever heard of ME, it just doesn't exist as a term. I'm popularising ME/CFS but in this case I'm going to use CFS to keep the wording of the original source.)

The doctor in the podcast was Ágnes Bencze, a cardiologist. The interviewer asked her a lot of questions about various organ dysfunctions which she answered but then added that the actual post-covid syndrome is a distinct group of symptoms that doesn't seem to have any obvious cause and science is still looking for an answer.

She also mentioned various possible scenarios: inadequate antibody response, ongoing inflammation, some additional bacterial infection, deconditioning due to lengthy hospitalization.

When asked about the severe fatigue and brain fog, she responded with talking about CFS, that it is a common phenomenon after viral infections and other viruses can cause it, not just covid. Of course, she wasn't an expert on the subject (no one here is) because she started saying it tends to go away after a few weeks. She said there was no treatment for it but what she recommends is rest, rest, and even more rest, no smoking, no alcohol and a healthy diet.

She expects most people to recover.

This is not much but I'm still happy because finally someone at least mentioned it in connection with LC, probably for the first time, even if not correctly. And told people to rest. This is actually way more than anything here so far, as odd as that sounds. Because if it is mentioned, it is a great opportunity for me to show up and comment and correct.

Source: https://hvg.hu/itthon/20210417_Benc...onikus_faradtsagara_nincs_specialis_gyogyszer

 

From the oldest Hungarian women's magazine. Long interview, I included only the ME/CFS part here (Google translate):

Dr. Judit Balázs on the psychopandemic: More and more people are already turning to us with psychiatric complaints

We talked about the mental effects of the epidemic, post-covid syndrome and the chronic stress that interweaves our everyday lives with dr. With Judit Balázs, President of the Hungarian Psychiatric Society, Head of Department, Institute of Psychology, Eötvös Loránd University, Child, Youth and Adult Psychiatrist.

Interviewer: I think a distinction should also be made as to whether the symptoms caused by the epidemic of confinement, insecurity, job loss, or possibly post-covid syndrome. As far as I know, this can also have nervous system effects.

Dr Balázs: A lot of research has been started on post-covid syndrome in recent times, which increasingly seems to have significant psychiatric symptoms. More than one-third of patients hospitalized with COVID-19 developed a psychiatric problem that persisted for months after discharge from the hospital. This is most depressed and anxious. More than half of the patients had no such symptoms before. What still seems to occur often is the development of chronic fatigue syndrome and a significant decrease in memory loss and ability to concentrate. However, studies as well as clinical experience with post-covid syndrome are still in their infancy, as the virus itself is still relatively new, so several months of follow-up could only begin recently.

-----

I have composed a response, which I'm going to send to the journalist, add as a comment to the article on Facebook and post it on my own Facebook page (Google translate - Hungarian is very different from English, so there are some limitations in this but anyway):

Dear Women's Journal Café, dear Szonja Herczeg!

I read with regret that "Dr. Balázs Judit about psychopandemias: More and more people are already turning to us with psychic complaints" (https://nlc.hu/egeszseg/20210419/dr...chopandemia-depresszio-poszt-covid-szindroma/) that chronic fatigue syndrome (myalgia encephalomyelitis, post-viral fatigue syndrome ICD 10: G9330) was mentioned by the doctor as a psychiatric illness. This is not the case. Following the 2015 report by the American Academy of Medicine (then also known as the Institute of Medicine), the CDC states in bold that it is a biological, non-psychological illness, classified by the WHO as a nervous system disease, and the British Health Organization (NHS) plans to issue new recommendations on it this year, as NICE, which sets out guidelines there, has identified the results of research into treatments for psychiatric origin as weak and very weak scientific evidence.

There is currently a slow shift in attitudes about psychic origins, and it would be extremely important to protect the interests of patients if, in the interests of balanced information, this information were equally represented and not considered psychiatric, while the view that biomedical may be the problem (i.e. their body is really sick). The previous approach to this disease has done a great deal of damage, very little has been spent on its substantive research, and it would be important to mention not only a one-sided, scientifically not generally accepted view, but also to know that otherwise serious organizations do not agree with it. A small detail in the article, but all the more important.

(And I included the proper references.)

----

The thing is that this seems to be a minor detail in a long interview but no one ever talks about ME/CFS here. I have Google alerts turned on for everything in Hungarian and basically this is the first time it alerted me in months. So I find it important to address this issue, even if it is rarely mentioned (or especially because of that).


EDIT: Wow, I got an immediate response from the journalist, who said she doesn't think the psychiatrist meant it as a psychiatric illness, she just mentioned it as a result of covid. She said it was probably her own (the journalist's) mistake, she should have worded it better. She immediately corrected the article and now it also includes that this is not a psychiatric illness. Cool! She says she has planned an article on ME/CFS for a long time but cannot find enough people to talk to about it. Well, I think this is a match made in heaven.

 

Wonderful, congratulations!

 

Thank you! It turns out she has already seen Unrest and Forgotten Plague. This was my first ever "letter to the editor" and it looks like I've hit gold.

 

First decent article in Hungary that discusses the connection between long covid and ME/CFS (which was not written by me)

So far, there have been only 1-2 short mentions of ME/CFS in the country in this respect, but either in the wrong context (psychosocial) or from someone not really understanding the condition and giving an incorrect description.

So this is the first really decent one that is based on an earlier Medscape article about the MEAction press conference about a month ago. The website is a magazine aimed at doctors, similarly to Medscape. Anthony Komaroff and Lucinda Bateman were quoted primarily and although the article is somewhat oddly worded (coming from someone who is probably not very familiar with the subject), it gives quite an accurate picture, mentioning the big variety of symptoms and PEM, and that this is not a new phenomenon, can be triggered by many different pathogens, etc.

The Hungarian article: http://otszonline.hu/cikk/az_akut_covid_19_fertozest_koveto_poszt_covid_szindroma

The original from Medscape: https://www.medscape.com/viewarticle/948223

I'm glad someone else covered the subject finally, so I don't look like some conspiracy theorist weirdo.

 

Good news.

It seems that the ME Action press conference was a success.

 

I've found another decent article. This particular page is a very popular health website for the general public and from what I've seen, even their previous (few) articles on ME/CFS are pretty good, they don't push the BPS approach at all, on the contrary. They very obviously base many of their articles on American health websites. This is great because people can see how differently ME/CFS is viewed over there (which is still not perfect but the US is way ahead of us).

This one is a "Things that can make you tired" type of article but ME/CFS is very prominently featured, with multiple paragraphs, taking up about half of the entire article:

- the first sentence starts with: "if the above lifestyle changes (eg exercise, diet, etc) don't work, you may have.."
- it mentions many other symptoms, including PEM
- lists causes such as viral infections like EBV and specifically mentions that covid may cause it too
- it mentions that HPA axis may play a role but it is not clear yet
- physical or emotional stress may be present for some people directly before onset
- possible involvement of the immune system is mentioned
- Maureen Hanson's study on how diversity of bacteria in the gut microbiome is different is also mentioned
- it also mentions that she sees it as evidence that ME/CFS is not psychological
- it adds that probiotics and probiotic and prebiotic food may help symptoms.

I don't know how much the last bit of information really helps but I'm glad that I've found another article, even if not perfect, where the author tried to read up on it at least a little bit. This is not so common.

https://www.hazipatika.com/taplalko...m_akaro_faradtsag_mi_okozhatja/20210505163553

 

"They know almost nothing about it here, although it has ruined life for many of us" - a misunderstood disease, chronic fatigue syndrome

This is an article with ME, both literally and figuratively. This is the one with the journalist that I messaged a few weeks ago about correcting what that psychiatrist said and she was interested in doing an article and publishing it on ME Awareness Day. This is a women's magazine, one of the most popular ones in the country.

She wanted to put the focus on my personal story and symptoms to gain sympathy, which I didn't think was a good idea because I don't believe one person's story represents the entire patient community very well, and instead I wanted to talk about ME/CFS patients and the situation of the disease in general. In the end, it was a bit of a compromise between the two.

It is quite long and I don't want to torture you so much with how Google translate attempts (and often fails) to translate Hungarian, so here is a summary with the highlights:

- The introduction, written by the journalist, starts with talking about Jennifer Brea's documentary that she saw. It gives a short description of the disease, how debilitating it can be, some theories about what is going on etc. and also how little is spent on research and that it is not psychiatric. It has some flaws but nothing too crazy.
- Then comes the interview with me as a patient: I mention that this can be officially diagnosed but most doctors don't really know about it or recognize it and I mention that ME is the older term

- I mention that often women in their 30s and 40s, previously healthy, are affected but men and children can have it too
- diagnosis is extremely difficult to get and there aren't even any specialists in the country at all
- a variety of symptoms are mentioned, including sensory sensitivities and I also said that symptoms are a bit different for everyone
- I mentioned my original (moderate) and current (mild) level of severity and what it roughly means and I also added Whitney Dafoe as another example, so readers can get a good grasp of the severity scale

- I mentioned PEM, not by the name, but what it actually means
- I also talked about how you can get better spontaneously in the first few years but that chances are very slim later on
- I mentioned my group and page and that I hope it will give birth to a patient organization, similar to the ones in Western countries because the patients are very alone, ignored by healthcare and society

- at the very end I talked about how teaching doctors properly about this is a must and I mentioned the IOM report, what the CDC says on its website and that the British are rewriting their guidelines too and that it is high time we jumped on that bandwagon, because there is a high chance there will be a lot of new patients now with covid.

https://nlc.hu/csalad/20210512/itth...tett-betegseg-a-kronikus-faradtsag-szindroma/

 

Wow, what a great job @Wyva Thanks for the summary and for doing the interview!

 

Chronic fatigue is not hysteria but a serious post-covid symptom

Very odd article and I think this type may be even more harmful than purely BPS inspired ones because it mixes things. I don't think this is intentional: people not familiar with the topic write articles about it now and turn to sources they can easily find, which results in an article that gives the impression that ME/CFS patient groups agree with what certain doctors say, because they are presented right next to each other like they are talking about the same thing in agreement. This is really harmful: the article (published on a very popular website) was actually sent to me by the admin of the biggest Hungarian long covid Facebook group, thinking it was great and recommending that I should include the doctor in my list. Even she was fooled by it.

Anyway, the author clearly used two sources, one was probably some article in English and that part is really good: very definitely states that it is not mass hysteria, mentions that the PACE trial was seriously flawed and the numbers don't hold up, mentions the new NICE guidelines and even one of the old outbreaks of ME. This would have been an exceptionally good article.

But: the other source was Dr Arnold Dénes Arnold, head of a private clinic called the Pain Centre. He is an actual doctor, a surgeon but one that also jumped into alternative medicine, including acupuncture, neural therapy, traditional Chinese medicine and some sort of homeopathy.

This is what he says about ME/CFS in the article:

This is a mess and very misleading to "newcomers", with a doctor who obviously finally takes them very seriously. Thankfully, the LC admin removed it from her group after posting it happily. The good thing is that we are on very good terms and she often asks for my input. She is my long covid equivalent: she would like to do something, reads a lot about determined LC groups and advocates abroad and what is going on there but finds that here people with long covid really don't care so much about advocacy or standing up for themselves, so she is quite alone with it. I think the two of us together form the Hungarian ME-Long covid Alliance.

https://www.szeretlekmagyarorszag.h...ulyos-tunet-a-covid-utani-kronikus-faradtsag/

 

A journalist, also suffering from post-covid sequelae herself (not sure which one) posted her article about PACS in the long covid group. I commented that the ME/CFS-like long covid is not a new phenomenon, medicine owes pwME a lot, and the lack of research is the reason why doctors are so confused right now and long haulers are without proper help etc etc. And she said it was an important topic and she is going to write about it! I offered my help in case she needs it (she may not).

This is not one of the biggest news sites but it is quite a serious one and is still quite well-known, it was originally a weekly (offline) political news magazine, kind of like Newsweek a little bit. I hope she'll write something that is based on English-language sources and not Hungarian ones. Now I'm both anxious and excited about this.

 

All the energy was sucked out of my soul and my bones

Another, originally English article has reached Hungary, this time based on this one in Time: https://time.com/6051767/long-covid-19-rare-disease-pots/

It is about post-covid syndrome and that many long haulers have POTS and ME/CFS. It is a very good and detailed article that also quotes Peter Rowe. Important facts are mentioned, eg. there are way too many patients with these diseases and way to few doctors to treat them and that they are often seen as psychiatric problems etc.

The website is one of the most popular health magazines in the country and they have a history of (sporadically) publishing the translations of foreign articles on ME/CFS in Hungarian (I mentioned them previously).

(Unfortunately, the simple translation of a foreign article is newsworthy here.)

https://www.hazipatika.com/eletmod/..._a_lelkembol_es_a_csontjaimbol/20210531154227

 

@Wyva Just happened to see that by @Mike Harley: "If you live in Hungary with M.E and would like to tell your story, please get in touch by clicking here."

http://www.mikeseumarathons.eu/hungary.html

 

Breaking news! (?)

I just came back from my GP and it turns out he cannot diagnose me with ME/CFS because GPs cannot add these kinds of diagnostic codes like that, it won't show up in the system. And because there is no one who diagnoses you with this, he is trying to refer me to that endocrinologist again, who also doesn't know much about the disease but at least wrote it down for me (but without the code). We are hoping that maybe when the referral is accepted, the diagnosis will be added by the system, LOL. I feel like I am in a Kafka story.

So anyway, for the above reasons my GP also understands how difficult it is even to get a diagnosis. He said there must be quite a lot of people with this disease and we should start a public ME/CFS clinic. (My GP also happens to be the chief medical officer and the healthcare manager of a polyclinic, so he has the power to do this.) I have to call him about this a month from now to talk about it.

This sounds great but I'm also terribly afraid what the clinic might be like. I mean no one really knows this disease here and when he was thinking about what specialist he could send me to he said: "hm, maybe a neurologist, maybe a psychiatrist, maybe an internalist", which is not that great. I obviously don't want to create a monster but I have a month to get prepared to convince him to follow what the CDC said and what NICE is planning. He is a pretty open-minded doctor, I hope he can understand that here it is not enough to simply find someone, that person actually has to seriously educate themselves on the topic.

Thanks, I contacted him, we're doing the short interview.

 

@Wyva

On a positive note (?), sending you to different specialist can help r/o other illnesses? I was sent to many specialists and had tests and blood work done before being diagnoses.

 

Thanks @Joh and @Wyva for your help with this. Just shared the interview on facebook and twitter