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

[Wyva]

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.

 

[Wyva]

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

Chair: Renáta Cserjési – Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology
Opponent: Csaba Borbély – National Institute of Mental Neurology and Neurosurgery

Post-COVID syndrome, also known as long COVID, refers to a set of symptoms that persist for weeks or even months after the resolution of a COVID-19 infection. In addition to significantly increased fatigue, neurocognitive symptoms such as memory and executive function impairments, attention disorders, psychomotor coordination disturbances, and language difficulties may be characteristic. Additionally, depressive and anxiety symptoms can also emerge or intensify.

The remaining psychological and neurocognitive symptoms can have a significant impact on patients' quality of life and health status, making the study of this phenomenon and the exploration of potential intervention options of paramount importance. This symposium presents the research conducted by the EMIND Integrative Neuropsychology Research Group at the ELTE Institute of Psychology, in cooperation with the Semmelweis University Pulmonology Clinic and the University of Pannonia.

In the introduction of the symposium, Renáta Cserjési, head of the EMIND lab, will outline the structure and objectives of the post-COVID studies. The first presentation will compare the affective and cognitive neuropsychological functions of individuals who have recovered from COVID-19 with those who have not been infected (presentation by Fanni Forsthoffer, BA student). The second presentation will showcase a virtual reality-based cognitive intervention focused on post-COVID symptoms and its impact on the health status of the participants (presentation by Sarolta Imre, MA student).

The third presentation will present the results of an art therapy protocol specifically developed for post-COVID, through qualitative and quantitative analyses (presentation by Zsuzsanna Valachiné Geréb, clinical psychologist and art therapist). The final presentation will discuss the effects of these interventions on affective and cognitive neuropsychological functions (presentation by Kinga Nedda Pete, PhD student). The research is supported by the high-risk grant from the Hungarian Academy of Sciences (MTA) aimed at studying post-COVID phenomena.

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

Fanni Forsthoffer¹, Kinga Nedda Pete², Zsuzsanna Valachiné Geréb², Renáta Cserjési³, Sarolta Imre¹, Orsolya Gőbel⁴, Cecília Sik-Lányi⁵, János Tamás Varga⁴, Veronika Müller⁴
¹Student at Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology
²Eötvös Loránd University, Faculty of Education and Psychology, Doctoral School of Psychology
³Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology
⁴Semmelweis University, Pulmonology Clinic
⁵University of Pannonia, Faculty of Information Technology

The coronavirus pandemic, which has been part of our lives for nearly three years, poses both physical and mental health challenges to our society. COVID-19 complicates our lives not only during the infection period but also afterward with certain residual symptoms. The altered living conditions, the novelty of the disease, and its unknown long-term effects pose significant mental and neuropsychological threats. Depression and anxiety alone have a substantial negative impact on cognitive abilities, but increasing research supports that COVID-19, like other infectious viruses, can induce changes in the central nervous system.

These studies typically focus on Western societies and often examine cognitive functions in general. The aim of the current research is to gather information on a more specific area of cognitive functions, namely executive functions, after coronavirus infection, with a focus on a Hungarian sample. Alongside measuring executive functions, we also assessed the levels of depression and anxiety to exclude the possibility that our results could be attributed to factors other than the coronavirus. Consistent with previous studies, we predicted that our sample would also show better results in the control group, i.e., those who had not been infected with the virus.

Despite this, a significant difference was detected only in the results of the Frontal Assessment Battery's prehensile behavior subtest, where the group that had contracted COVID-19 performed significantly worse than the control group that had not been infected. Surprisingly, in the other tests, the group that had contracted the disease performed better. Further research is warranted to determine whether this finding is significant and, if so, what might be the cause for the significant difference observed only in prehensile behavior in a smaller sample.

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

Sarolta Imre¹, Kinga Nedda Pete², Zsuzsanna Valachiné Geréb², Renata Cserjési³, Fanni Forsthoffer¹, Orsolya Gőbel⁴, Cecília Sik-Lányi⁵, János Tamás Varga⁴, Veronika Müller⁴
¹Student at Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology
²Eötvös Loránd University, Faculty of Education and Psychology, Doctoral School of Psychology
³Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology
⁴Semmelweis University, Pulmonology Clinic
⁵University of Pannonia, Faculty of Information Technology

Patients suffering from post-COVID syndrome may experience impairments lasting for weeks, months, or even years, significantly reducing their quality of life. Among the most common symptoms is cognitive impairment, for which there is currently no well-established and effective method to compensate for the impairment or restore normal functioning. Among the new techniques for cognitive rehabilitation, virtual reality (VR) has shown promising results in patients who have had a stroke and those with mild cognitive impairment.

Therefore, the main aim of the present research is to confirm the effectiveness of VR techniques in patients with post-COVID syndrome. Only individuals who were at least 18 years old and had contracted COVID-19, and who subjectively perceived themselves as having cognitive deficits, were allowed to participate in the research. Exclusion criteria included prior psychiatric or neurological disorders. To test our hypotheses, we used a test battery consisting of neuropsychological tests, including assessments of memory, attention, and executive functions.

Following this, a group of post-COVID patients participated in a 6-week VR intervention using the Enhance VR program. To assess the long-term effects of the intervention, we repeated the administration of the neuropsychological test battery twice: first, 9 weeks after the initial test administration, and then again 12 weeks after the second test administration. The practical benefit of the research is significant and timely; however, its limitations include the small number of participants due to the nature of the procedure.

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

Renáta Cserjési¹, Zsuzsanna Valachiné Geréb², Kinga Nedda Pete², Orsolya Gőbel³, Cecília Sik-Lányi⁴, Veronika Müller³

¹Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology
²Eötvös Loránd University, Faculty of Education and Psychology, Doctoral School of Psychology
³Semmelweis University, Pulmonology Clinic
⁴University of Pannonia, Faculty of Information Technology

The cognitive and affective psychological problems caused by COVID-19 can manifest during the virus's acute phase and may persist after the infection, significantly impacting patients' daily lives and work capacity. In our presentation, we will theoretically and practically present an art therapy protocol aimed at assisting in the rehabilitation of post-COVID patients. Our goal is to examine the effects of the interventions on changes in neuropsychological functions and quality of life in individuals with post-COVID symptoms.

Art therapy has been shown to promote neuroplasticity and has a positive impact on attention, executive functions, spatial-visual abilities, and memory, contributing to increased well-being and reduced depression and anxiety. It changes behavioral and thinking patterns and biologically reduces anxiety by normalizing heart rate, blood pressure, and cortisol levels. Art therapy provides access to emotions and autobiographical memories, helps integrate somatosensory experiences, increases functional connectivity in the default mode network, which serves not only cognitive development but also enhances psychological resilience. The effects of art therapy have proven effective on neuropsychological components as well. Art therapy rehabilitation aims to enhance both neuropsychological development and emotional improvement.

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.

The impact assessment consists of pre-post questionnaires. The sessions have a circular structure: check-in circle, relaxation with breathing, short directed imaginative creative art creation, and sharing. Participants report emotional improvements after the sessions. Longitudinal effects and neuropsychological follow-up examinations are ongoing. In my presentation, I would like to provide insight into the qualitative aspects of the research. The embodied experiences and internal resources presented externally in the participants' images and narratives.

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

Pete Kinga Nedda1, Valachiné Geréb Zsuzsanna1, Imre Sarolta2, Forsthoffer Fanni1,
Gőbel Orsolya1, Sik-Lányi Cecília4, Varga János Tamás3, Müller Veronika3, Cserjési Renáta2

1Eötvös Loránd University, Faculty of Education and Psychology, Doctoral School of Psychology

2Eötvös Loránd University, Faculty of Education and Psychology, Institute of Psychology, student

4Semmelweis University, Pulmonology Clinic

5University of Pannonia, Faculty of Engineering, Department of Information Technology

Longitudinal studies indicate long-term neurocognitive impairments in post-COVID patients, such as deficits in executive functions, memory impairments, attentional and language difficulties, as well as psychomotor disorders. Additionally, depressive and anxiety symptoms may appear or exacerbate. The remaining neurocognitive and psychological problems significantly impact patients' daily lives, quality of life, and perceived health status. Therefore, investigating post-COVID symptoms and exploring possible intervention opportunities are of paramount importance.

The presentation will discuss a virtual reality-based cognitive intervention developed for post-COVID symptoms, as well as an art therapy program focusing on post-COVID, and their effects on affective and cognitive neuropsychological functions. It is expected that both intervention programs will significantly improve problematic neurocognitive functions and reduce affective disorders, thereby improving patients' quality of life and perceived health status. The first group (1) underwent a virtual reality-based cognitive intervention (n=16, 11 females and 5 males), while the second group (2) was developed with art therapy (n=13 females) over a period of 6 weeks.

As a control, a third group (3) did not participate in any intervention (n=20, 10 females and 10 males). The measurement tools included the Montreal Cognitive Assessment (MoCA), the D2-R test, the forward and backward digit span tests, the verbal fluency test, the Trail Making Test (TMT), the Stroop test, the Frontal Assessment Battery (FAB), the Perceived Deficits Questionnaire (PDQ), the Post-COVID-19 Functional Scale (PCFS), EQ-VAS, the State-Trait Anxiety Inventory (STAI), the Patient Health Questionnaire (PHQ-9), and the Satisfaction with Life Scale (SWLS), which were assessed both before and after the intervention. The time between the two assessments was 9 weeks for both the intervention groups and the control group. The ongoing research is supported by the Hungarian Academy of Sciences (MTA) high-risk grant for research on post-COVID phenomena.

 

[Wyva]

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.

 

[Hutan]

Thanks @Wyva, so we have a whole batch of papers on poorly conceived studies to look forward to.

The Impact of COVID-19 on Executive Functions in a Hungarian Sample
Despite this, a significant difference was detected only in the results of the Frontal Assessment Battery's prehensile behavior subtest, where the group that had contracted COVID-19 performed significantly worse than the control group that had not been infected. Surprisingly, in the other tests, the group that had contracted the disease performed better. Further research is warranted to determine whether this finding is significant and, if so, what might be the cause for the significant difference observed only in prehensile behavior in a smaller sample.

When no cognitive dysfunction shows up, I often wonder about the selection of the participants. I think we might have expected some worse performance on more of the named tests e.g. the trail making test which is joining numbered dots together with a line as quickly as possible.

The people with Long Covid who make it to research studies are, I think, often well-resourced, well-educated and probably, pre-illness, would have scored high on tests of cognitive ability. They are probably also relatively mildly affected. They will often be medical staff such as doctors and nurses or the family of doctors and nurses, because recruitment notices are often circulated in the facility where the study is done. Pairing these people with controls of convenience, (and especially if controls were paid for their participation - no idea if that is the case here), is likely to mask any reduced cognitive function in the Long Covid cohort. Cognitive tests in adults tend to be highly positively correlated with years of education and negatively correlated with age.

I was intrigued to know what prehensile behaviour might be. I think it is this, a measure of environmental autonomy:

The Frontal Assessment Battery (FAB) and its sub-scales: validation and updated normative data in an Italian population sample
(instructions translated from Italian, from the supplementary materials)

6. Prehensile behaviour
The [examiner] is sitting in front of the [subject]. Put the hands of the subject with the palms up, resting on his knees. Without saying anything and without looking at the subject, the examiner brings his hands close to those of the subject and touches the palms, at the same time from both sides, observing if the subject spontaneously grasps them. If the subject grabs them, the examiner tries again after telling him, “Don't take my hands.”

Attribution of the score: 3=the subject does not grab the hands of the examiner; 2=the subject hesitates and asks what he has to do; 1=the subject grabs hands without hesitation; 0=the subject grabs the hands of the examiner even after he has been asked not to do so.

So, that's weird. I wonder about sample sizes and also about any bias in the examiner as they perform the assessment.

 

[Kitty]

Attribution of the score: 3=the subject does not grab the hands of the examiner; 2=the subject hesitates and asks what he has to do; 1=the subject grabs hands without hesitation; 0=the subject grabs the hands of the examiner even after he has been asked not to do so.

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

 

[Wyva]

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

Text of the abstract
Introduction: While chronic abdominal complaints pose a diagnostic challenge often attributed to functional disorders, the early detection of conditions such as celiac disease and inflammatory bowel diseases holds significant importance. In the history of children's complaints, we often hear about a preceding viral infection; however, examining this relationship is not simple.

Aims: We assessed the prevalence of gastrointestinal complaints among children post-COVID-19 and delineated both the organic origins of these symptoms and the prevalence of newly diagnosed celiac disease cases.

Methods: For our study conducted at the Long COVID clinic of the Pediatric Center, Semmelweis University, Bókay Unit, we enrolled children who underwent celiac screening between July 7, 2021, and July 6, 2022, following a confirmed COVID-19 infection. We analyzed gastrointestinal symptoms during and after the acute infection and conducted further investigations to distinguish between functional and organic gastrointestinal disorders.

Results: One hundred ninety-four children met our inclusion criteria. One hundred fourteen (58.8%) exhibited at least one persistent gastrointestinal symptom during examination (mean time since acute COVID testing = 207 days; SD = 130 days). At this time, 33.5% had loss of appetite, 32.5% abdominal pain, 26.8% nausea or vomiting, 16.5% diarrhea. Weight loss was observed in 14.9%, constipation in 11.9%, and difficulty swallowing in 4.1%. Further investigations revealed inflammatory bowel disease in two cases, lactose malabsorption in two cases, reflux in two other children, and cyclic vomiting syndrome in one child. However, functional disorders were suggested for the majority of children. The overall prevalence of celiac disease was 5.7%, with six newly diagnosed children (3.1%).

Conclusions: Differentiating between organic and functional etiologies of symptoms is essential, necessitating a multidisciplinary approach for comprehensive patient care. Furthermore, our study highlights a potentially elevated prevalence of celiac disease among children with a history of COVID-19, prompting further investigation into this association.

Funding: Supported by the ÚNKP-23-3-II-SE-4 New National Excellence Program of the Ministry for Culture and Innovation from the source of the National Research, Development and Innovation Fund.

 

[Wyva]

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:

Hungarian children report similar symptoms.

Dr. Réka Garai and Dr. Vivien Herczeg, pediatric resident doctors at the Bókay Street Department of the Semmelweis University Department of Pediatrics, have been involved in patient care and research at the long-Covid clinic: over the course of three years, they and their colleagues examined nearly 500 children. Although they are pleased to see that while many were previously skeptical about the phenomenon of long Covid, more and more people are acknowledging it now, unfortunately, establishing an accurate diagnosis—and thus treatment—still faces significant challenges.

There are several reasons for this: in addition to the lack of a well-screened control group and often having to compare cases based on reports alone, it is also an issue that, when examining children, it is questionable how well they can verbalize their symptoms and how much can be attributed to certain developmental stages. Moreover, the symptoms are quite complex, with significant variations in severity: while some children report only prolonged mild fatigue, others may have missed school for months.

Current studies suggest that approximately 60% of the child population has contracted the coronavirus, and at the Bókay Street Department of the Pediatric Clinic, children around the age of 12 are predominantly seen. Although the diagnosis has been linked to symptoms persisting beyond a month, many children continue to struggle with these symptoms for years.

Dr. Vivien Herczeg adds that while adults often present with pulmonary and cardiovascular symptoms, children and adolescents exhibit a more varied set of symptoms. Common symptoms include fatigue, changes in smell and taste, lack of motivation, prolonged headaches, difficulty with exertion, memory issues, and brain fog.

“There are children who present with 30 to 40 symptoms, some of which are quite severe. We have seen athletes who were so fatigued after training that they had to completely abandon physical activity.”

Dr. Vivien Herczeg says. Dr. Réka Garai adds: “In addition to this, there is significant interest in research examining the mental health effects of Covid. Besides the fact that lockdowns have affected most children, the virus can enter the brain, where it may cause even structural changes that could lead to neuropsychiatric symptoms, such as brain fog, memory disorders, and the development of phobias, as mentioned in the Time article.”


In recent years, the doctors at the Pediatric Clinic have encountered quite severe cases: there was a patient who reported hallucinations, another who lost significant weight due to altered taste perception, and even someone who developed "Covid foot," meaning the end of their limb turned purple. According to the specialists' own surveys, girls are more affected than boys—although this may be partly because girls are more likely to report their symptoms or seek help.

A Solution Still Pending

Dr. Vivien Herczeg and Dr. Réka Garai also share that there are now fewer cases of long Covid. Patients now visit the still-operating Tűzoltói Street clinic more often due to the psychological consequences of the disease. Additionally, among those presenting with prolonged coughs, whooping cough is increasingly being considered. However, there are still many individuals with prolonged, complex symptom sets who are unsure where to turn. Since there is currently no universally effective long Covid medication, doctors are working based on a multidisciplinary approach, involving other specialists such as physical therapists, dietitians, and psychologists.

“There have been cases where we could use medication as a causal therapy, but most often only supportive therapy was available.”

Effectiveness involves conducting follow-up studies, but unfortunately, it is not always possible to distinguish whether a specific therapy is helping or if the improvement is simply due to the passage of time,” they point out. They also emphasize that in the case of such a multifaceted syndrome, effective therapy is even more crucially dependent on the understanding and supportive behavior of the professionals involved.

 

[Wyva]

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

Today we live in the age of epidemics. More and more serious epidemics are appearing. Coronavirus disease 2019 (COVID–19) is a highly contagious disease caused by the novel severe acute respiratory syndrome coronavirus (SARS-CoV-2). The virus probably spread from bats to humans. One virus of Rhinolophus sinicus showed 80% similarity, while the virus strain of Rhinolophus affinis showed 96% similarity with SARS-CoV-2.

Human-to-human trans-mission of the COVID–19 infection has led to the isolation of patients. Due to globalized travel, it has spread worldwide, the World Health Organization (WHO) declared it a pandemic, and today it is considered a major public health problem. Besides the acute symptoms after infection, patients and society are also being challenged by long-term health complications associated with COVID–19 including the post-COVID–19 syndrome, also known as long-COVID. Within the post-acute COVID–19 syndrome, two stages are distinguished: subacute COVID–19 between 4 and 12 weeks after acute infection and post-COVID–19 syndrome characterized by symptoms that persist beyond 12 weeks. It is characterized by a wide range of symptoms that affect several organ systems.

Treatment of complaints consists primarily of symptomatic treatment and multidisciplinary rehabilitation. Vaccination against COVID–19 is one of the most important means of mitigating the pandemic. Extensive research in recent years has confirmed the effectiveness of the COVID–19 vaccines. International studies have shown that the vaccine has proven to be a protective factor against long-lasting COVID symptoms. In this review, the symptoms, epidemiology, transmission, pathogenesis of COVID–19 as well as the effects of the post-COVID–19 syndrome on certain organ systems, its rehabilitation, and the effect of vaccines on the development of symptoms are highlighted.

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.

 

[rvallee]

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

Since there is currently no universally effective long Covid medication, doctors are working based on a multidisciplinary approach, involving other specialists such as physical therapists, dietitians, and psychologists.

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 also emphasize that in the case of such a multifaceted syndrome, effective therapy is even more crucially dependent on the understanding and supportive behavior of the professionals involved.

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.

 

[Wyva]

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:

**Chronic fatigue syndrome (CFS)** – once referred to as exhaustion, excessive tiredness, or neurasthenia – now has a specific medical name. However, CFS remains one of the more obscure conditions, and both its diagnosis and treatment pose challenges for professionals.

CFS affects 1.2–2.6% of the global population (around 17–24 million people), occurring twice as often in women as in men. It primarily affects young adults and middle-aged individuals, but cases among children are also on the rise.

Due to varying diagnostic methods, precise data are unavailable, and estimates suggest the condition might be even more prevalent (possibly affecting 10–20% of the population). Experts believe that up to 90% of CFS cases remain undiagnosed, partly because many doctors and healthcare providers are still unfamiliar with the syndrome. It lacks a universally accepted definition, diagnostic criteria, and a proven treatment that works for all patients.

**Is CFS real?**

Despite skepticism, CFS is a very real problem. For comparison, as many people suffer from diagnosed CFS as from lower back pain.

Dr. Tímea Zita Varga-Fekete, an internist from the Angio Center in Marosvásárhely, says, "Chronic fatigue syndrome is a typical disease of modern civilization, largely caused by today’s fast-paced lifestyle. A similar condition was described as early as the 19th century under the name neurasthenia, which referred to a loss of nerve cell energy. The symptoms were similar to those of CFS."

This was the first time modern society’s increased demands, leading to physical and mental exhaustion, were recognized and classified as a disease.

Although many physicians still doubt the significance of the syndrome, it is increasingly recognized as a public health issue. CFS is now acknowledged as a distinct condition, and research is ongoing into its causes. However, many patients still go undiagnosed due to limited access to healthcare and the lack of education about CFS among healthcare providers.

**Symptoms of CFS include:**
- Persistent fatigue that doesn't improve with rest.
- Feeling tired, sluggish, and confused upon waking.
- Extreme fatigue following physical or mental effort, which sets in hours later and lasts for a long time (e.g., after exercise).
- Sleep disturbances.
- Impaired concentration and cognitive issues.
- Dizziness upon changing position (e.g., standing up after sitting).
- Headaches and muscle pain.
- Frequent sore throats.

**How does CFS differ from ordinary fatigue?**

"CFS is more than exhaustion," explains the doctor. "It’s a specific type of fatigue triggered by activities that wouldn't normally require much energy. The weakness and tiredness are disproportionate to the activity performed. People with CFS can’t function as they did before the illness. They often struggle with basic daily tasks like showering or eating.

Sleep becomes disturbed, with frequent awakenings and shallow rest.

Cognitive impairments are also common in CFS, such as slow reaction times, disorientation, memory issues, decreased focus, and even temporary dyslexia or dyscalculia (difficulty recognizing letters or numbers)."

According to a 2020 study from South Korea, 29% of CFS patients are bedridden or housebound, more than half are unemployed or unable to work, and only 19% are capable of working full-time.

**What causes CFS?**

The exact causes of CFS are unknown, but researchers believe multiple factors may contribute to its development. More studies are needed, but current theories suggest CFS might be triggered by:
- Certain viral infections (particularly types of the herpes virus family, such as Epstein–Barr or human herpesvirus, and rubella).
- A weakened immune system.
- Hormonal imbalances.
- Severe allergies.
- Excessive stress.
- Mental or physical trauma.
- Genetic predisposition.

**Challenges in diagnosing CFS**

While several global health organizations (such as the U.S. NASEM and the U.K. NICE) have issued guidelines for recognizing and treating CFS, it is still often overlooked or underestimated by healthcare professionals. The U.K.'s NICE highlights that CFS sufferers may face stigma, sometimes even from healthcare workers, undermining their faith in recovery and trust in the healthcare system.

"We don’t have specific diagnostic tools for CFS. Diagnosis is based on symptoms," explains Dr. Varga-Fekete. Tests ordered by doctors aim to rule out other conditions that might be causing the symptoms. If no other disease is found, a CFS diagnosis is made when the following three core symptoms are present:

1. A significantly reduced ability to perform activities that were normal before the illness, accompanied by severe fatigue.
2. Post-exertional malaise (PEM), where symptoms worsen after physical or mental activity that wouldn’t have been problematic before the illness.
3. Disturbed, non-refreshing sleep.

These symptoms must have persisted for at least six months to establish a diagnosis. Additionally, at least one other symptom must be present, such as memory or concentration issues or orthostatic intolerance, which causes dizziness or nausea when changing position from lying or sitting to standing.

CFS is particularly difficult to diagnose because its symptoms often fluctuate, sometimes worsening and sometimes easing. Many patients simply accept their condition, believing they must live with it.

"Research is underway to identify certain biological and molecular changes that might help with diagnosis. There appear to be connections with lipid levels, markers of chronic inflammation, gut microbiota composition, and several other potential biological markers that require further study," explains the specialist.

**Experiments in Treating Chronic Fatigue Syndrome**

"Just as we lack specific diagnostic tools for diagnosing chronic fatigue syndrome (CFS), there is no specific cure for its treatment either. At this moment, the most important thing is perhaps the proper training of medical staff to recognize these symptoms in their patients, consider the possibility of CFS, and refer them to the appropriate specialists so that they can receive the necessary care as soon as possible," says our internal medicine expert. "The treatment focuses on alleviating the symptoms.

The treatment plan is personalized, depending on the severity of the symptoms.

In some cases, the fatigue is so severe that the individual becomes bedridden, unable even to eat, requiring medical and hospital care. In milder cases, we can try to alleviate the symptoms with both medicinal and non-medicinal treatments. As with any illness, lifestyle changes are essential here as well—moderating physical activity, resting, following a healthy and balanced diet, and ensuring proper hydration. Perhaps the most important symptom to address is post-exertional malaise (PEM), which involves managing one's energy levels.

Patients need to discover their personal limits for mental and physical activity.

Afterward, they must plan their daily activities in such a way that they don’t exceed these personal energy limits, breaking up and shortening periods of activity. Patients and their relatives need guidance in this."

**Treating Sleep Disorders**

"Similarly, it is crucial to address sleep disorders. Common sleep complaints include difficulty falling asleep, extreme drowsiness, vivid dreaming, restless leg syndrome, and nighttime muscle cramps. Relaxation techniques can help with these, and if they don’t bring improvement, the doctor may suggest medication to help with sleep. Adapting to a chronic, debilitating illness can sometimes lead to depression or anxiety.

If present, depression or anxiety must be treated, and here, antidepressants and anti-anxiety medications can be beneficial.

For symptoms of orthostatic intolerance, it’s important to rule out possible heart or circulatory issues. If these are not present, the condition can be managed with adequate salt and fluid intake. Memory problems and difficulty concentrating can sometimes improve with meditation exercises. However, pain management is often a serious challenge for these patients, as conventional painkillers may not help. In such cases, stretching and movement therapies, gentle massage, or acupuncture can be considered as complementary treatments.

Many patients try different alternative therapies, but there’s little evidence that they work.

Patients with chronic fatigue syndrome may also be sensitive to medications, including herbal products and supplements, so expensive or potentially harmful treatments should be avoided."

**COVID-19 and Chronic Fatigue Syndrome**

Several health organizations worldwide have issued warnings that people with CFS are at greater risk of COVID-19 infection, so it’s especially important for them to follow precautionary measures. At the same time, many chronic fatigue syndrome support groups and organizations have reported an increasing number of people who have recovered from COVID-19 showing CFS-like symptoms.

This phenomenon is now called long COVID syndrome, and science is still baffled by it without clear solutions. The occurrence of this condition seems to support the connection between viral infections and chronic fatigue syndrome.

 

[Wyva]

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)

The effects and aftereffects of the COVID-19 pandemic cannot be overstated, either at the individual or societal level. The (auto)immune reactions occurring during the acute phase of infection and after its resolution influence survival and play a role in the development of lingering symptoms post-infection. The aim of our scientific program, supported by the Hungarian Academy of Sciences’ post-COVID program, was to understand these immune reactions. In our research, we examined the autoimmune processes occurring during and in the time window following COVID-19 infection. Furthermore, we identified a known drug molecule capable of effectively inhibiting harmful immune processes. Our findings may contribute to future therapies for COVID-19 and similar diseases.

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

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

In research supported by the Hungarian Academy of Sciences (MTA), we conducted targeted genetic studies related to the clinical course of COVID-19 and the emergence of post-COVID syndrome. This work expanded to include immunological research and practical developments related to COVID-19 diagnostics. In collaboration with clinical researchers (Dr. Judit Moldvay, Dr. Péter Hegyi, and colleagues), we analyzed polymorphisms in 12 selected gene segments in 850 patients. We found numerous correlations between genetic background and clinical parameters, and we plan to incorporate these genetic parameters into a clinical panel for personalized risk assessments.

We thoroughly analyzed the metabolic interactions of COVID-19 drugs, the impact of vaccines on the development of humoral immunity, and established diagnostic systems to more accurately determine the cellular and humoral immune responses to the virus. Our method for diagnosing cellular immune responses has been patented internationally, and to promote its application, we established a spin-off company.

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

Ádám Dénes (HUN-REN Institute of Experimental Medicine)

Beyond the public health and economic impacts of the COVID-19 pandemic caused by the novel coronavirus (SARS-CoV-2), inflammation and neurological complications were detected in the majority of patients, significantly influencing the course of the disease and contributing to the long-term, quality-of-life-defining residual symptoms. The aim of our research was to uncover the role of the inflammatory processes triggered by COVID-19 in the development of neural damage observed in brain tissue. We examined the brain tissue of deceased patients and the inflammatory changes in various other organs as well. We found that the brain's main immune cells, microglia, undergo significant changes in patients, impairing their protective functions and playing a major role in the development of neurological symptoms.

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.

 

[Hutan]

Biological research paper out from a team based in Szeged, Hungary:
Novel biomarkers of mitochondrial dysfunction in Long COVID patients, 2024, Szögi et al.

 

[Wyva]

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

On November 26, as part of the Hungarian Science Festival’s central events, the Academy will host a symposium titled "Research on Post-COVID Phenomena." At this event, researchers will present scientific findings made possible through grants awarded by the Hungarian Academy of Sciences for studies on the topic.

On October 28, 2024, Attila Károly Nagy and Ádám Dénes, head of the Neuroimmunology Research Group at the HUN-REN Institute of Experimental Medicine, will deliver a presentation titled "The Role of Inflammation and Microglia in the Neurological Effects of COVID-19." He is expected to share findings of significant interest, including insights into the long-lasting symptoms collectively known as long-COVID syndrome.

Research Starting Point: Understanding COVID-19's Inflammatory Impact on the Nervous System

The research begins from the premise that, while inflammatory processes play a key role in the development of neurological diseases, the exact mechanisms of these disease processes remain largely unknown to scientists. Due to the dramatic public health and economic impacts of the COVID-19 pandemic, it is crucial to gain a comprehensive understanding of the mechanisms and medical-biological effects of the SARS-CoV-2 virus. This knowledge could help reduce the complications, mortality, and economic consequences associated with the infection.

During the peak of the pandemic's first wave, it became clear that COVID-19 causes significant inflammation throughout the body. Over the years since the pandemic’s emergence in late 2019, researchers have also learned that a large percentage of patients exhibit complex neurological symptoms, including changes in cerebral circulation, which often persist for months post-recovery. Observations indicate that the inflammation is a contributing factor not only to the lengthy hospitalizations and high mortality rates seen early in the pandemic, but also to the development of lasting symptoms that significantly affect quality of life for many who have recovered. Although the immune system has progressively adapted to combat new viral variants and the number of severe cases requiring hospitalization has dropped, the long-term, multi-organ impacts of COVID-19 remain. For this reason, studying long-COVID syndrome is particularly important.

At the HUN-REN Institute of Experimental Medicine, one research goal was to investigate the role of inflammation caused by COVID-19 in neurological damage observed in brain tissue. “We examined various aspects. One of our studies aimed to understand the changes in brain tissue of patients who died from COVID-19 and to identify which of these changes can be attributed to the virus’s effects,” explained neurobiologist Ádám Dénes, Doctor of the Hungarian Academy of Sciences. The study analyzed brain samples and samples from peripheral organs collected from patients who died during the acute phase of COVID-19—predominantly older men and women—and included non-COVID samples for comparison.

Researchers examined the inflammatory changes in these tissues, specifically looking at alterations in microglial cells, which are essential immune cells in the nervous system and play a key role in regulating inflammation in the brain.

“We found that COVID-19 triggers substantial inflammation in various regions of the brain. This does not necessarily mean the brain tissue itself is infected by the virus, but a complex inflammatory state develops within the brain tissue, altering the basic state and functioning of microglial cells, which are crucial for normal brain function,”

explained the researcher. Inflammatory changes were observed in brain areas where clinical imaging also showed inflammatory foci that correlated with neurological symptoms. The researchers hypothesize that these changes likely contribute to the development of various neurological conditions. “We examined this from multiple angles. We analyzed different inflammatory proteins and used RNA sequencing to determine if inflammatory cells—not only microglia but also other brain cells—exhibited phenotype changes. Using highly sophisticated molecular anatomical methods, we aimed to understand how cellular states change around the affected brain areas, particularly near blood vessels, and to identify the specific inflammatory changes present.”

One key conclusion is that COVID-19 can lead to highly heterogeneous inflammation in various brain areas, primarily affecting the brain parenchyma (functional tissue of the brain composed of neurons and glial cells) from the vascular areas. This involves significant disruption of microglial cells and increased production of numerous inflammatory proteins. Such inflammation coincides with neurological changes in brain tissue, including the disappearance of synapses essential for neuronal communication and damage to the myelin sheath, which insulates nerve cell extensions and facilitates signal transmission. Similar to how insulation protects electrical wires, damage to the myelin sheath disrupts signal transmission, explaining some observable abnormalities in brain tissue.

“This research is part of a study currently completed and awaiting publication. Parallel to this, we conducted another investigation under the Hungarian Academy of Sciences' post-COVID grant. This involved monitoring patients who had recovered from COVID-19 but developed neurological symptoms. These patients were examined using various imaging techniques (e.g., circulation MRI, EEG) and complex psychological and memory tests,” explained the researcher. They aimed to determine if there was a connection between the types and levels of inflammatory markers in COVID-recovered patients’ blood and observed changes in the connectivity of specific brain regions, including brain inflammation and potential degenerative processes, such as cortical thinning. This study is still ongoing. The researchers plan to continue following up with these patients, as while most have shown improvement, some still suffer from neurological symptoms, indicating a prolonged, slowly improving neurological process.

"One of our main strengths was the collaboration with several excellent partners during both the acute and long-COVID projects, including the National Korányi Institute of Pulmonology, the Research Centre for Natural Sciences, and the National Institute of Mental Health, Neurology, and Neurosurgery,” the researcher added.

“These two studies have taught us a lot, and we now see that COVID-19 entails serious neurological involvement,” emphasized Dr. Ádám Dénes, who also discussed cases of severe health deterioration due to long COVID. He noted that long-COVID syndrome includes not only neurological effects and symptoms but also involves significant impairment of the autonomic nervous system and brain areas responsible for its regulation. This is concerning as the autonomic nervous system governs basic functions like blood pressure, circulation, heart rate, and respiration. Many patients experienced symptoms across various organs, likely due to underlying nervous system processes.

In the brainstem, where the center of the autonomic nervous system is located, severe inflammation was observed in many COVID patients. Imaging techniques also detected similar inflammation in long-COVID patients, and there is evidence that such inflammation subsides extremely slowly. "When such a chronic inflammation starts in the brain, especially in older individuals with lower regenerative capacity, recovery tends to be slow and difficult. Even in younger individuals, the aftereffects of brain inflammation persist much longer than in most peripheral organs, partially explaining why long-COVID symptoms can be severe and long-lasting even in younger people. Brain tissue doesn’t regenerate effectively on its own, and in some cases, the SARS-CoV-2 virus may persist in brain tissues for a year or more, sustaining inflammation not only in the brain but in other organs as well,” Dr. Dénes added.

Regarding future research steps, the team is considering ways to help those affected by these issues. Currently, doctors have limited options for treating long COVID, and no universally effective therapy exists. “One reason is the wide range of affected areas in the brain and peripheral organs. For example, if a blood vessel becomes inflamed, it can trigger systemic inflammation throughout the body. Even after the inflammation subsides, its ripple effects are difficult to manage. Long COVID and neuro-COVID are particularly challenging to address until we fully understand the mechanisms behind these processes,” Dr. Dénes explained. His team has identified some clinically modifiable mechanisms that, after further investigation, could lead to developing medications to treat long COVID.

For long-COVID patients who are slowly recovering, maintaining and increasing physical and mental activity is beneficial, as observed with other neurological diseases. However, about 10-15% of patients suffer from autonomic nervous system disturbances that prevent activities like running or swimming, as these cause their heart rate to spike too quickly. “It's essential to address associated issues, such as sleep disorders or cardiovascular involvement, as pathological changes in these systems make it difficult to treat only the COVID aspect. Even if the primary cause is no longer present, a persistent autonomic nervous system disorder with complex underlying brain involvement may remain,” noted the neurobiologist, pointing out that conventional anti-inflammatory therapies have not been very effective.

Although such treatments sometimes helped reduce acute mortality, they did not effectively target the processes that cause brain inflammation. “Simply treating with steroids was ineffective from the start of the pandemic, and antiviral drugs also fell short. Interestingly, lifestyle improvements often aided recovery more than medications. Of course, professional medical care is crucial, but there are few effective tools for mitigating long-term effects,” he added.

Since the pandemic began, the virus has mutated and become milder, partly due to the immune system's improved ability to recognize it. In early variants, the correlation between severe pneumonia and neurological symptoms was unclear, as many patients with severe neurological issues had no respiratory problems. “Today, newer variants cause fewer pathological changes, and concerns have shifted beyond lung involvement. Although the chance of needing ventilators has decreased, neurological symptoms and issues like circulatory or blood clotting disorders remain more likely,” Dr. Dénes noted, adding that around 10-15% of patients also showed a tendency toward depression, indicating neurological involvement. These symptoms, though less severe than those seen with early variants, still impact overall health.

Looking at COVID wave variations, it's essential to study the long-term physiological effects COVID-related symptoms, neurological or otherwise, could have on the brain and other organs as patients age. It’s unclear whether COVID-19 will accelerate degenerative symptoms such as dementia or memory impairment or lead to an increase in neurological diseases like Parkinson’s in the coming years. There are indications that COVID-19 negatively impacted neurodegenerative disease trends, and it could take 20-30 years to fully understand its effects on society as a whole,” Dr. Dénes concluded.

Hungarian Academy of Sciences Post-COVID Research Grant
In June 2021, the Hungarian Academy of Sciences launched a post-COVID research grant initiative. Its goal was to support fundamental research exploring health, social, cultural, and other issues arising from post-COVID phenomena, regardless of scientific discipline. Through this grant, the Academy seeks to foster solutions to societal, environmental, and economic challenges based on scientific evidence and the latest research findings. The grant was open to researchers from all fields and career stages, with projects needing to address unique or breakthrough research questions related to post-COVID phenomena.

 

[rvallee]

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.

 

[Wyva]

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

 

[Wyva]

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.

 

[Trish]

Oh dear, I do hope it turns out not to be BPS, it's concerning that they won't reveal to you want the recommendations are yet. Well done for fighting on.

 

[Wyva]

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".

 

[SNT Gatchaman]

Reading those comments Wyva I think there are grounds for cautious optimism. The field of psychiatry does seem to be moving forward with mechanistic investigations of dysregulated immune and coagulation systems* with pathways involving gut microbiome, mitochondria etc. The dept head you're meeting may well respond quite warmly to the idea that new knowledge in his field and ours might cross-pollinate to the benefit of both.

* eg Dysregulation of complement and coagulation pathways: emerging mechanisms in the development of psychosis (2021, Nature Molecular Psychiatry)

 

[Wyva]

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.