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I have never got a reply from the editor-in-chief of this journal to my letter but I have found something else. This is not related to ME/CFS but it is a letter to the editor by one of the authors of the paper in this thread, Tamás Tényi. The paper the letter addresses is about how non-binary...

Thanks. I also actually wrote an article about this in Hungarian of course and I'm planning to send both my letter and my article to the Hungarian media as well as key political activists, NGOs etc, basically anyone who may show interest in this. We do actually have independent media here, I...

Just sent this to the Ministry of Interior and the Health Colleges so that they are aware that I know about this. It may be a bit harsh near the end but I want to have a record of this, that this was even actually pointed out to them by me and the gravity of the situation properly explained...

I met János Réthelyi, head of Psychiatry and Beáta Sebestyén from the Ministry. Réthelyi said he is someone who loves patient advocacy and presented himself as someone very open to that. Than basically his second sentence was that this disease is the same as depression just without the mood...

So the story in short (this is mostly what you could read from me about the process if you followed my advocacy - newer info in the next post after this one): First, the Ministry of Interior and the Health Colleges promised me a guideline after my letters. I told them I would like to...

Oh and some "fun" tidbit" from the beginning: "The authors dedicate their study, prepared at the request of the Editorial Board of the Medical Weekly, to the memory of Ignác Semmelweis, on the 160th anniversary of his death." Ignác Semmelweis was the doctor other doctors ridiculed and didn't...

No, and I only know this because I bought the paper so that I can see it. Most papers in this journal are free to read, btw.

This is the Hungarian consensus recommendation for ME/CFS. It is bad news. As some of you may know, I was allowed to see the text before publishing. This was NOT the text I saw. A lot of it was the same or very similar, but key parts were added to the published version. Most of the text is...

Interdisciplinary consensus statement about the diagnosis and treatment of chronic fatigue syndrome/myalgic encephalomyelopathy Simonyi Gábor dr ■ Bedros J. Róbert dr. ■ Réthelyi János dr. Polgár Anna dr. ■ Kiss Emese dr. Chronic fatigue syndrome/myalgic encephalomyelopathy is a disease...

Recently a new member joined my group and asked a question about how she was supposed to do exercise as she is just not capable without triggering PEM. She said she read a lot of books about ME/CFS and they universally recommend some kind of exercise. I asked her about the books and they were...

Full title: Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK Maedeh Mansoubi, Thomas Richards, Martine Ainsworth-Wells, Russell Fleming, Phaedra Leveridge, Charles...

I don't really know too much about MS but I watched the documentary about Selma Blair, an actress who has MS. And there was a scene where she was sitting in front of the camera for the documentary, talking about something and as she was talking, her speech started to become more and more...

Mahdi Bagherpoor Helabad, Irina Matlahov, Raj Kumar, Jan O. Daldrop, Greeshma Jain, Markus Weingarth, Patrick C. A. van der Wel & Markus S. Miettinen Abstract Neurodegeneration in Huntington’s disease (HD) is accompanied by the aggregation of fragments of the mutant huntingtin protein, a...

I'm kind of getting the feeling Mitodicure is the new BC 007. People keep sharing posts about it in my group. There is also this new book that builds a lot of hype around it: Understanding ME/CFS & Strategies for Healing by Patrick Ussher https://www.patrickussher.com/#my-new-book "About the...

I encounter this error page every once in a while when checking the Hungarian repositories and I have no idea what is going on when it shows up. (Maybe the study is not "indexed" yet?) However, when I google the title of the study, it is easy to find it in the journal. In this particular case as...

I'm not sure that's why. I think the comma and the period are simply used in the opposite way (at least here in Hungary but I guess elsewhere too). For example: In English you would write 3.5 g, meaning 3 and a half grams. In some other countries this is 3,5 g because they use the comma in...

They don't mention ME/CFS, only chronic fatigue, the symptom and say for example: Exercise therapy usually has no significant effect on chronic fatigue [55], with amantadine being the most commonly prescribed drug for its treatment, constituting approximately 53.8% of fatigue prescriptions...

Abstract Objective Although SARS-CoV-2 primarily targets the respiratory system, there is evidence that it can also infect the central nervous system, especially in children, leading to neurological symptoms and long-term consequences. It is imperative to summarize the possible mechanisms, main...

Abstract Background/Objectives: Headache is one of the most common neurological symptoms associated with COVID-19, affecting approximately 25% of patients. While most headaches resolve within weeks, some persist for months, suggesting underlying structural brain changes. This study aimed to...

I think the show you are talking about is called Once Upon a Time... Life in English and many kids watched it all over the world. :) I even posted about it earlier myself as I was also a kid who grew up with it. It was a great show for children :)