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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...

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 :)

This is really appalling, especially if you remember how things went down for pwME in the Czech Republic a few years ago. The patient org wanted the country to adapt the new NICE guideline and the Ministry of Health kind of promised to develop one. Then unexpectedly the whole process was stopped...

Abstract Background: This study aims to explore the perceptions and clinical approaches of pain management specialists toward myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a condition characterized by persistent fatigue, widespread pain, unrefreshing sleep, and autonomic...

@Yann04 I remembered this paper by Bateman et al that was published in Mayo Clinic Proceedings. It is not about the HADS scale specifically but a consensus recommendation for ME/CFS in general: https://www.mayoclinicproceedings.org/article/s0025-6196(21)00513-9/fulltext You might find this part...