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Study suggested by @Utsikt

Abstract A water-insoluble β-1,3-glucan (Wβ) with a molecular weight of 8.12 × 104 Da was extracted from an edible fungus Wolfiporia cocos. Its backbone was composed of 1,3-β-linked Glcp branched at the C-2, C-4, and C-6 positions, connecting more 1,3-β-linked Glcp with a triple helical...

Long COVID: assessing work ability, adapting the workplace and supporting rehabilitation. A practical short guide for the workplace (This is another document from the post above, I'm just highlighting its content here):

European Agency for Safety and Health at Work (EU-OSHA): Long COVID: Rehabilitation and practical workplace support "New publications from EU-OSHA detail how to support workers affected by Long COVID, offering information on rehabilitation and guidance on how to assess work ability and make...

The Canary: Poland doesn’t even recognise ME/CFS – leaving one man living with it with no way out from domestic abuse Throughout all this time, Karol has been unable to get a formal diagnosis for his severe ME/CFS, and has only started getting diagnoses for the majority of the other chronic...

Btw, the author of the original paper only included a short reply to Tényi's letter: Rough translation: Dear Professor, I read with great interest your valuable addition, which confirms the timeliness of the topic I have chosen. Respectfully, Noémi Somorjai I have actually skimmed through...

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...

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...