Search results

  1. Ravn

    Melinda Gates resigns from Gates Foundation

    In addition, could be worth somebody on xtwitter (i.e. not me) pointing out to Melinda that people of colour and people with low socioeconomic status are even more neglected, and that's just in the wealthy countries. I can't even begin to imagine what it must be like for a poor woman in a poor...
  2. Ravn

    ME Assoc: How Many People in the UK have ME/CFS?

    Yes, I think the only way out of this muddle of confusion is a really good, big and solid epidemiologic study, one that's not based on recorded diagnoses which are a mess and could vastly over- or underestimate the real prevalence, we don't even know in which direction to err. Ideally a study...
  3. Ravn

    Remarkable researchers hunting for ‘something in the blood’ of people with ME

    Those last two are possibilities have been haunting my thoughts for a while. Partly because if it was a single something you'd think somebody would have at least narrowed the field down by now, though I take your point that some somethings are harder to find than others One thing is finding...
  4. Ravn

    Trial Report Possible Markers For Myalgic Encephalomyelitis / CFS Developed In Long Covid: Utility Of Serum Ferritin And Insulin-like Growth Factor-I,2023,Yamamoto

    Based on this paper in PNAS. Paywalled - grrrr Iron regulates the quiescence of naive CD4 T cells by controlling mitochondria and cellular metabolism, 2024, Ajay Kumar et al https://www.pnas.org/doi/abs/10.1073/pnas.2318420121 "Significance Iron plays a crucial role in several physiological...
  5. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    tweet in previous post says "Article published by the Otago Daily Times - includes a video interview with two people from Tapanui, West Otago, who caught Tapanui 'Flu 40-odd years ago" Early indications point to higher visibility for 12 May this year In the 30+ years I've been reading the...
  6. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    To my knowledge nobody has made any claims about proof of causation. On the contrary, my argument was that we don't know either way and that both possibilities are sufficiently plausible to not shut the door on either of them just yet. Until we have technology to provide more conclusive evidence...
  7. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    I'm working my way through some lectures on microglia*, nothing to do with ME, just how the things function in general. One key message is: there's an awful lot we don't know about their workings yet, especially about their roles beyond cleaning up undesirable stuff in the brain, e.g. their...
  8. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    Public health surveillance studies show many viruses produce asymptomatic infections, and in significant numbers. For some, like some enteroviruses it's even a majority of infections that remain asymptomatic
  9. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    Younger is doing a study using some fancy new scanning tech to determine if white blood cells from the periphery infiltrate ME brains. Hopefully this will give us a clear yes or no answer on that point. Though I'm not sure if he's planning to scan after exertion or during PEM, it's conceivable...
  10. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    Maybe different stories were told in different places and times? It's what I was told by my local MS society back when I was misdiagnosed with MS and also what was passed down the in-laws' family who had a member die from severe MS in the mid 1900s. Maybe the male vs female MS diagnosis issue...
  11. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    This thread is a valuable thought exercise even if it turns out to be impossible to agree on the ultimate list at this stage due to too little reliable data. Anything to help sharpen reasoning. A major issue is the difficulty in distinguishing what is core and what is secondary. I think we too...
  12. Ravn

    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    Highlighting some quotes I think are important - but also most at risk of being forgotten when considering models and unifying hypotheses. We can get carried away with trying to include everything and the kitchen sink in a model and that's rarely helpful, especially when much of our data limited...
  13. Ravn

    Different kinds of abnormalities of heart rate and blood pressure

    Another open question that would be important to answer: do the various manifestations of OI reflect stable patient subgroups or can they be the result of adaptations, albeit only partially effective ones, within a single patient over time? My own experience would suggest the latter. Over the...
  14. Ravn

    New Zealand: ANZMES

    press release for World ME Day https://anzmes.org.nz/category/news/
  15. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    The Press: Long Covid: ‘I don’t want to be stuck in this house anymore’
  16. Ravn

    New Zealand: Dr Vallings

    Is this website still being maintained and updated? Dr Vallings retired some time ago. Probably wishful thinking but if it is the case Dr Vallings' website is no longer being updated then the most effective strategy may be to simply point that out to the national health info website admins and...
  17. Ravn

    2021 Pan-Europe ME Patient Survey (EMEA)

    That's a good idea in principle. Most people outside our circles don't think much about what BPS actually means - to be fair, academics have been arguing about the originally intended meaning for decades and are still disagreeing. But history aside, if pushed, most people out there today assume...
  18. Ravn

    Low Vasopressin In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Huhmar/Bragée/Polo

    Can't tell much from the abstract. Reading between the lines I'm guessing the cohort may just have been regular patients coming through their clinic. Which raises the question if they then treated those they found deficient in vasopressin with vasopressin, and to what effect. Curiously, for me...
  19. Ravn

    Preprint System and Method to Determine ME/CFS and Long COVID Disease Severity Using a Wearable Sensor, 2024, Sun et al

    Undoubtedly. But I think it would be asking too much of a single measure to capture everything, let alone everything in detail. As a broad measure of physical and orthostatic function this looks as good as anything we've seen to date. That's assuming the readings are reasonably accurate. I'm...
  20. Ravn

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    :hug: I suspect the people at Cochrane wished you hadn't bothered either... because their pathetic non-reponses seem to suggest they actually are very much bothered (and are hoping that by delaying long enough they can make it all go away; looks like this will be a contest of who is going to be...
Back
Top Bottom