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

Open Letter to the Medical Authorities in the Czech Republic

Dear Minister, in the past year, the Czech Association of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (hereinafter referred to as “ME/CFS”) was involved in negotiations with the representatives of the Ministry of Health of the Czech Republic and the Czech Medical Associations. These negotiations were initiated after a suggestion from our patients' association. The goal was to draw attention to the neglected situation of ME/CFS patients in the Czech Republic and to initiate the development of clinical practice guidelines (CPG) or otherwise unify the diagnostic, therapeutic and social care for patients with this illness.

During the talks, we were told repeatedly by the Czech medical authorities, that chronic fatigue syndrome as an illness (diagnosis) “doesn't exist”, or that it is a “provisional” or “escape” diagnosis, meaning that all these patients have in fact some other, not yet diagnosed, illness. As a result of these nearly year-long negotiations, a proposal was submitted to the Ministry of Health to include ME/CFS in the clinical practice guidelines program. Subsequently on December 11th, 2019 the proposal was rejected by the Guarantee Commission with the explanation, that “in this case [of ME/CFS], it is not a defined illness in general, but a clinical syndrome. For that reason, an effort to create clinical practice guidelines could not lead to a meaningful outcome with the current state of evidence-based medicine”. At the same time, it was suggested that a protocol of examinations could be developed, “which would differentiate those patients from this syndrome, who suffer from treatable serious diseases – oncological diseases, myasthenia, myopathies, chronic infections, or possibly with multiple sclerosis, and then proceed with the established therapies for these illnesses”.

As the Czech Association of Patients with ME/CFS, we strongly disagree with this position. We are convinced, that the fundamental problem is still a wrong understanding of the term “chronic fatigue syndrome” as a sum of all the conditions, in which chronic fatigue occurs as a symptom. This is incorrect. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness, which usually has an acute, postinfectious onset and is manifested mainly by a major intolerance of both physical and cognitive exertion and a number of neurological (CNS and ANS), flu-like and gastrointestinal symptoms, not only by fatigue. After all, both the terms ME and CFS were introduced on the basis of the epidemic occurrence of this illness.
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As patients with myalgic encephalomyelitis/chronic fatigue syndrome from the Czech Republic, we ask for help. The rejection by the Guarantee Commission and the negative stance of the Czech Medical Associations mean, that we have been left in a desperate situation once again. We ask for nothing else than equal access to medical and social care. The Czech Association of Patients with ME/CFS offers a constructive approach and participation in any steps, that will improve the situation of the patients.

To support our stance, we attach signatures of researchers and physicians, who endorsed the content of this open letter. We also enclose several personal messages from ME/CFS sufferers in the Czech Republic, documenting their situation and the severity of the illness.
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The pages of testimonials from patients are very moving. Best wishes to the Czech Association of Patients with ME/CFS.
 
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So I am still building the ME/CFS community in Hungary, and as part of that I reached out to an immunologist/rheumatologist, who seems to be much more knowledgeable about this disease than most doctors here (based on the short but on-point summary he posted on his website). And in his reply he told me they are just planning to examine some people with fMRI to see if they find something. So this made me really happy, that at least something is happening here now, as opposed to absolutely nothing (except the standard psychosomatic, BPS direction).
 
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First outpatient care network for post-covid syndrome will be launched in Hungary on 1st March by the University of Debrecen (the second biggest city). The first wave was really small here due to the early lockdown, so that is part of the reason why everything is in delay here.

It involves a network of infectologists, pediatricians, cardiologists, pulmonologists, rheumatologists, neurologists, psychiatrists and psychologists. From what I understand there will be a central outpatient clinic but also specialists outside the clinic will be part of the network.

The first examination has to happen between 3-6 months after the infection and another medical examination will happen 6-12 months later. If the symptoms are severe enough, patients can go before the 3-month mark.

They don't go into detail about how they are planning to treat post-covid syndrome but they say they will share some guides on their website for patients in the future.

Well, better than nothing, I guess. It would be better to know their views about the ME/CFS like symptoms but I guess sooner or later long haulers will share their experiences in the Facebook groups.

https://hirek.unideb.hu/hu/hir/2021...lGHsQuLbMu7Cli9lOOY4EzsZ8UYIe7-92F4sxlU4nnewU
 
Wyva said:
First outpatient care network for post-covid syndrome will be launched in Hungary on 1st March by the University of Debrecen
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So now they have a short description on the website of the university (by the way, this post-covid clinic seems to be this university's own idea and is not an official response from the government/healthcare system or anything).
There's not much new information there, except that they also accept athletes/previously very active people who don't have long covid but would like to make sure they also don't have any underlying medical issues after their covid infection that they don't know about, before returning to sports.

And the more interesting part is that they have a short informational section for GPs and there they refer to "Management of post-acute covid-19 in primary care, Trisha Greenhalgh, Matthew Knight, Christine A'Court, Maria Buxton, Laiba Husain, BMJ 2020" (thread here: https://www.s4me.info/threads/bmj-m...-in-primary-care-2020-greenhalgh-et-al.16286/), which may not be perfect but it mentions chronic fatigue syndrome and that evidence is not so convincing about GET, and that they recommend being cautious about increasing physical activity for post-covid patients if they respond badly.

I don't know if this is something they follow in practice, but this is not a bad sign. And it is something I can cite myself if they (or anyone) seem to go against it, since this is the only paper cited on the website of the only post-covid clinic. (And it is great that there is a group of volunteers who translate covid-related studies to Hungarian and they translated this paper too, so at least that makes it a bit easier for me.)

https://klinikaikozpont.unideb.hu/hu/post-covid-szakambulancia-halozat-haziorvosi-tajekoztato
 
OK, my excitement about the possible attitude of the Hungarian post-Covid clinic was a bit too early. Since I posted here they have also shared their pediatric guide for GPs. And there I found a sentence that says if no organic change is found during the medical examinations, they will be sent to a psychologist.

Looks like I need to write (another) post explaining what is wrong with this protocol and remove my recommendation of this clinic from my Facebook page and group.
 
Wyva said:
Since I posted here they have also shared their pediatric guide for GPs. And there I found a sentence that says if no organic change is found during the medical examinations, they will be sent to a psychologist.
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It's not just for screening? You'd hope a GP could ask the questions needed to rule out a psychological cause for symptoms, but I guess seeing a psychologist as part of a screening process could be defended. Especially for a child, who might not be able to articulate their concerns well, or while a parent is present. I mean, it could go dreadfully wrong if the psychologist is driven by dogma, but, in principle it seems ok.

Of course, if no organic change being found automatically results in psychological treatment to remove faulty thoughts, then that is different and very problematic.
 
Hutan said:
It's not just for screening? You'd hope a GP could ask the questions needed to rule out a psychological cause for symptom, but I guess seeing a psychologist as part of a screening process could be defended. Especially for a child, who might not be able to articulate their concerns well, or while a parent is present. I mean, it could go dreadfully wrong if the psychologist is driven by dogma, but, in principle it seems ok.

Of course, if no organic change being found automatically results in psychological treatment to remove faulty thoughts, then that is different and very problematic.
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Maybe, it is hard to tell. Google translate:

Patients under 18 years of age with COVID-19 infection confirmed by PCR, Ag rapid test, or antibody They can apply to the pediatric clinic's post-COVID outpatient clinic or, if an organic abnormality has not been confirmed by an outpatient examination, to the Children's Clinic's psychological clinic after prior appointment, with a duly completed referral and questionnaires.
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To me it sounds like that once they don't find anything physical at the pediatric clinic's post-Covid clinic, then the kid is sent to the pediatric psychology clinic. From this sentence it sounds like the psychological clinic is not part of the Post-covid clinic.

Actually I looked up the child psychology clinic and there it says:

Child psychological outpatient clinic

(for children screened at PostCOVID)
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I'm not sure it comes through in English the same way but in Hungarian this "screened" sounds like that the screening process was over.

Edit: I have to add that here, so far post-Covid syndrome has been mostly viewed as some kind of organ damage. I rarely hear about the ME/CFS like complaints in the media. Whenever it is mentioned by doctors it is almost always either organ damage or psychological (anxiety, PTSD, etc).
 
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So, finally the official Hungarian guideline for post-covid syndrome has arrived. (Additional info: we have no ME/CFS guidelines, at least I couldn't find any.) And yes, my suspicion was spot-on, things are really dire.

It's really long, very thorough and 90% of it is about damage to the lung, heart, certain neurological issues. 10% is mental health and there is exactly zero mention of the unexplainable long covid symptoms. (This has been true of media reports too, it's like this problem just doesn't exist here, you have either organ damage or PTSD/anxiety. I feel I am the only person in the whole country accurately reporting about long covid - and I'm not exaggerating here.)

Anyway, here is the interesting part, from Google translate:

2.3.4 Psychiatric consultation (initiating a specialist examination if necessary)

Fatigue, sleep disturbance, irritability beyond three months, have changed
behavior, sensory disappointments, low stress tolerance.

Leading psychiatric symptoms:
(a) low mood, anxiety and anxiety;
b) reduced social interest, avoidant behavior, or increased
dependency requirement;
c) negative automatic thoughts and attributions;
d) traumatic breakthroughs;
e) increased vigilance and stress activity, sleep disturbance;
f) bodily symptoms, fatigue, increased that cannot be explained by organic causes,
health anxiety;
g) dissociative symptoms (depersonalization and derealization) and short transient
psychosis (hallucinations and delusions)
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This sounds like this was specifically written for ME/CFS, especially f) and b). But especially F.

Ugh, I'm so angry now, I won't be able to sleep.
 
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Trish said:
So sorry to hear that. It must be so hard feeling you are fighting a lonely battle on this. Surely others will realise there's a problem soon.
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I hope so!

A few weeks ago a reporter from the biggest TV station showed up in the long covid Facebook group, she was looking for material, people she could interview. I took the opportunity and sent her some of my articles, eg the summary of that great New York Times article about the long covid and ME/CFS connection, the short guide I wrote specifically for covid long haulers with potential ME/CFS, so that they can understand the situation quickly and easily etc. I told her this is nothing new and I believe I made her job quite easy with all the easily digestable material I sent her. (Making my articles accessible even for total outsiders is one of my priorities.) She was excited and very grateful. And then she chose not to include any of it in the report at all. Zero mention of ME/CFS or that long covid is not unprecedented. Maybe I'm naive but I thought this was actually a great story, something that might interest the media at least a little bit but I was mistaken.

Anyway, not giving up, tomorrow I'm going to post something about why the long covid guidelines are unacceptable.
 
Wyva said:
And then she chose not to include any of it in the report at all. Zero mention of ME/CFS or that long covid is not unprecedented. Maybe I'm naive but I thought this was actually a great story, something that might interest the media at least a little bit but I was mistaken.
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How disappointing but well done for trying. Very hard when you expend valuable effort to have it disregarded.

You never know what seeds might have been sown though. Maybe her piece was edited. Maybe in a few months time or a bit more she'll want to revisit that angle. Or her editor will. One can hope.
 
Mental health related long covid clinic set up in Hungary

If you haven't had enough of reading BS on long covid yet: now there is a long covid clinic in Hungary specifically for people dealing with mental health issues afterwards (it is part of the National Institute of Psychiatry and Addictions). Which in itself wouldn't be a problem but here is what the director of psychiatry said - and mind you, here long covid is seen as either organ damage or mental problem (google translate):

A lot of people struggle with mental post-Covid, up to 30 percent of those infected. They developed depressive, anxious symptoms, and possibly a mental illness due to abnormal fatigue and sleep problems. We are waiting not only for them at the outpatient clinic, but also for those who develop post-Covid syndrome for social reasons. If someone has lost a family member or job due to the virus, they may experience the same symptoms.
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These people have no idea what they are talking about.

Post-Covid psychotherapy itself is a brand new cure, there is no serious literature from which doctors can quickly build a methodology, as the virus is also new, causing problems. Szabolcs Kéri put it this way, assemble the aircraft on the fly, that is, they begin treatment for post-Covid syndrome based on the latest psychological and psychotherapeutic study results. Treatment is performed using cognitive therapeutic, interpersonal, and relaxation methods.
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And now they are working on a guideline (I guess specifically on mental health because that wasn't very detailed in the general long covid guideline).

https://index.hu/gazdasag/2021/04/08/mentalis-poszt-covid-szindroma-nyiro-gyula-korhaz
 
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