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

Discussion in 'Regional news' started by Kalliope, Jun 29, 2020.

  1. Wyva

    Wyva Senior Member (Voting Rights)

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    Budapest, Hungary
    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.
     
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  2. Wyva

    Wyva Senior Member (Voting Rights)

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    Location:
    Budapest, Hungary
    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

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

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

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


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

    Wyva Senior Member (Voting Rights)

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    Location:
    Budapest, Hungary
    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.
     
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  4. Hutan

    Hutan Moderator Staff Member

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    Thanks @Wyva, so we have a whole batch of papers on poorly conceived studies to look forward to.
    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:
    So, that's weird. I wonder about sample sizes and also about any bias in the examiner as they perform the assessment.
     
    Last edited: Jun 12, 2024
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  5. Kitty

    Kitty Senior Member (Voting Rights)

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