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  1. Ravn

    Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

    I want to scream yes, yes and YES!!! in response to every single one of these sentences but will restrain myself to one word in capitals. Is this something that could be done through one of the more sensible charities, in collaboration with S4ME? They've done those big surveys on harm from...
  2. Ravn

    Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al

    Yeah, the choice of the term "severe" here is unfortunate and creates unnecessary confusion. There's plenty enough confusion around what "severe" actually means as it is. No need to add to it. It's perfectly sensible to separate a group which only meets Fukuda from a group which also meets...
  3. Ravn

    Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al

    It was just about the number of criteria met, based on past studies having found patients who meet stricter criteria usually are more severe than patients who only meet Fukuda. They didn't describe how severe their severe group was. Though you could go through the tables and check the results...
  4. Ravn

    Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

    Gosh, I wish more ME studies would consider PEM in this much detail and relate PEM findings with overall symptom picture! This study asks about: PEM after physical vs mental exertion how long after exertion it starts (since we still don't know if the immediate and delayed symptom exacerbation...
  5. Ravn

    Risks for Developing ME/CFS in College Students Following Infectious Mononucleosis: A Prospective Cohort Study, 2020, Jason et al

    I thought this was a missed opportunity together with there not being a split analysis of the ME/CFS (mostly Fukuda) group with respect to PEM. Would the not-recovered-but-not-quite-ME/CFS group have looked the same as a Fukuda-without-PEM group? And a Fukuda-with-PEM group may have looked...
  6. Ravn

    Fatigatio digital symposium in Hannover, 19 September 2020

    Videos have been posted (most are in German, some of the English ones have a German voice-over, at least at the start, haven't watched any through): https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg Prusty's is here (English):
  7. Ravn

    What is an engaging, informative, short, accurate description for ME/CFS?

    Actually, this may not have the expected effect. I tried that phrase out on some friends and a few of them interpreted it as positive. As in "I was living this horribly rushed and stressed life and then the illness gave me a chance to turn my life around and now I'm so much happier". Aargh!
  8. Ravn

    What is an engaging, informative, short, accurate description for ME/CFS?

    Come to think of it, I rarely even try these days because it is so difficult to do it succinctly. What I do say when I try is, let's say, highly colloquial. I agree, especially for a general audience. Plus, all the other, longer descriptions are packed with abstract words. Most people, the more...
  9. Ravn

    ScienceAlert: Early Humans May Have Hibernated Through Long Winters, Study Hints

    I take back the ancient fossil thing - looks like what we're really doing is training for a mission to Mars :alien:. https://news.harvard.edu/gazette/story/2020/06/neurons-that-control-hibernation-like-behavior-are-discovered/ We also have this thread on mouse torpor neurons...
  10. Ravn

    ScienceAlert: Early Humans May Have Hibernated Through Long Winters, Study Hints

    Mainly posting for the irresistible headline :slugish::woot::laugh: Just as I got used to seeing myself as a dauering - is that a word? - nematode I may have to readjust my self-image to prehistoric fossil, or rather to semi-incompetent-at-hibernating prehistoric fossil. Stuff those illness...
  11. Ravn

    Covid-19 vaccines and vaccinations

    I had a look into this because I've had at least one significant demyelination event (not Guillain-Barré syndrome), documented on MRI. The neurologists can't quite agree on what it was but but the favoured explanation seems to be Transverse Myelitis, the same thing they stopped one of the...
  12. Ravn

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    This! Really I think NICE should have just left it to you guys to write the guidelines from the start but that not being an option I'm very, very grateful to everyone who's worked/is working so hard at making sure we get the best possible guidelines. Thanks!
  13. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    I like @Carolyn Wilshire's comment, my bolding:
  14. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    I think all the publicity came out of the Brain Health Research lecture. I know they were trying to get the press interested at the time but it took a while to catch on. Until it got on breakfast television that is, and then the others had a moment of FOMO or something. Here's another (short)...
  15. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    The man appears to have achieved a state of omnipresence. Here's yet another article, this one a little bit different from the others which were basically a direct copy-paste of a University of Otago press release. Also has a slightly cringe-making, if largely harmless, American video inserted...
  16. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    After explaining where the terms ME and CFS had originated Prof Tate actually said, with emphasis, that patients hated the CFS one because it minimised the disease. Doubly disappointing - disrespectful one could argue - that the host continued using CFS after that. Otherwise it was a pretty...
  17. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Mostly about validating ME. Part of it was Ritchie (former league star, ANZMES ambassador or something in that line) telling his story. 12 years ill, well the last 4 years. Explained how he was affected and how there was no help for him at the time. A bit too much emphasis on healthy living and...
  18. Ravn

    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    Also sensitivity to touch? Hard to avoid in a medical setting but at least avoid unnecessary touch like that nurse kindly patting your arm all the time, well-meaning but...
  19. Ravn

    Informatics Inference of Exercise-Induced Modulation of Brain Pathways Based on Cerebrospinal Fluid Micro-RNAs in ME/CFS, 2020, Narayan et al

    I'm confused about the cohort here. Is it a subgroup from a larger (GWI&CFS&HCs?) study doing double duty? Or a different cohort but they're using data from the larger study as a sort of control? Does the "suggested upregulation of phosphoinositol signaling pathways" (in the conclusion) tie in...
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