Search results

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 :)

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...

I didn't do a full detailed article about this in the end but decided to incorporate it into an article about why the BPS model has failed and this is one of the methodological problems I talk about. But it is not very detailed and is in Hungarian, as I intended this article to give insight into...

He played Superman in the 70s and 80s and he was pretty famous back then for it. His story was of course tragic in itself to begin with but the fact that he was widely known as Superman, the opposite of a paralyzed person basically, probably touched a lot of people back then even more (he had a...

Offtopic side story: A couple of weeks ago I watched the documentary about Christopher Reeve. It dealt both with his film career and his accident and aftermath. And there was a part that struck me as really odd. He of course tried to draw a lot of attention to paralysis and did a lot of...

It's in the Introduction: "The impact of CFS/ME on patients can be profound, with many individuals experiencing a significant decrease in their quality of life and ability to perform daily activities. In severe cases, patients may be bedridden or housebound, unable to work or engage in social...

This is a Hungarian study where Ádám Dénes was the senior author. I already mentioned him a couple of times on the forum, as he sometimes talks about long covid in the media (but never about ME/CFS). Here is the accompanying press release from the website of the Hungarian Research Network...

Full title: Microglia dysfunction, neurovascular inflammation and focal neuropathologies are linked to IL-1- and IL-6-related systemic inflammation in COVID-19 Rebeka Fekete, Alba Simats, Eduárd Bíró, Balázs Pósfai, Csaba Cserép, Anett D. Schwarcz, Eszter Szabadits, Zsuzsanna Környei, Krisztina...