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  1. Valentijn

    Is there such a thing as mild orthostatic intolerance?

    There's a partial list at http://me-pedia.org/wiki/Orthostatic_intolerance#Notable_studies I think it's missing some of the older stuff from Peter Rowe, and maybe some newer stuff from Julia Newton.
  2. Valentijn

    Is there such a thing as mild orthostatic intolerance?

    In my case my pulse pressure falls, often to the extent that blood pressure monitors (including ones in high-tech labs and doctors using manual ones) can't get a reading. Usually my systolic creeps downward while my diastolic creeps upward, and I end up with a pulse pressure under 25. Earlier...
  3. Valentijn

    Fiona Fox (SMC) blog: Research councils: Independence once lost, is hard to recover

    I think her gross hypocrisy is completely earnest :D
  4. Valentijn

    Is there such a thing as mild orthostatic intolerance?

    There are delayed forms of OI, such as neurally mediated hypotension. That can result in a low blood pressure or low pulse pressure after sitting or standing for a while. A blood pressure monitor at home should be able to show if something funky is happening.
  5. Valentijn

    Periodic Paralysis, myotonia, channelopathy and ME

    I don't know. Who was wanting to study it? :-P But there's tons of hypotheses, and most of them don't amount to much. I save my enthusiasm for research results.
  6. Valentijn

    Periodic Paralysis, myotonia, channelopathy and ME

    It's an article, not a paper. I'm not sure which studies you want to discuss ... a lot are cited, but some are just hypotheses (not research), and others are not regarding CFS.
  7. Valentijn

    Autoimmune antibodies - testing issues help needed

    Did you see the results yourself? The GP might be interpreting a low level as negative instead of telling you the actual value.
  8. Valentijn

    Sickness behaviour – useful concept or psycho-humbug?

    Yet single-celled organisms and many multi-cellular organisms without a brain need nutrition, and will alter behavior to get it. Since they manage to feed themselves and survive without a brain, it would seem that a brain is not particularly necessary to respond to hunger, except to the extent...
  9. Valentijn

    Sickness behaviour – useful concept or psycho-humbug?

    Yes, but it is ultimately the biology driving the behavior. Any mental aspect is so trivial and automatic as to be inconsequential except in the case of illness (anorexia). It isn't the mental state which modifies behavior - it's the biological need for fuel and the biological drive to fill...
  10. Valentijn

    Sickness behaviour – useful concept or psycho-humbug?

    But hunger is a biological state. It's a "feeling" in that it's perceived, not in that it's an emotion.
  11. Valentijn

    How near are we to a diagnostic biomarker? What is it likely to be?

    These sorts of results are usually pretty meaningless, until they've been replicated. Generally a lot of comparisons are being made between patients and controls, and then even more are being made based on severity level. False positive results are guaranteed in such a situation, unless...
  12. Valentijn

    How near are we to a diagnostic biomarker? What is it likely to be?

    "Epigenetics" is just one way of saying that an external factor has more impact than the DNA itself does. Hence a standard genetic test wouldn't show epigenetic changes. The problem with novel mutations (not inherited) is that they can't really proliferate enough after childhood to cause...
  13. Valentijn

    Phase III Rituximab Trial - News

    It was a bit odd that he he seemed to be happily sailing along with the rest of the crew for so long after saying "bon voyage" to ME/CFS. Now I realize he'd merely relocated from the captain's seat to an unlaunched life boat to prepare for the inevitable :rolleyes:
  14. Valentijn

    Esther Crawley talk at TEDxBristol, Thurs 2nd Bristol - "Disrupting Your View Of ME"

    Might be due to a copyright violation, if TED claims to own the contents of talks.
  15. Valentijn

    ‘Healthy Privilege’ – when you just can’t imagine being sick

    I think the author is blending several phenomena and confusing them with privilege. Health apps are marketed at healthy people because they're a bigger market than any specific disease or group of diseases. They probably don't understand illness, but that's irrelevant - their job is merely to...
  16. Valentijn

    Homeopathy Is a Bitter Sugar Pill

    Only if assuming that the lack of an effective treatment itself won't be incredibly harmful.
  17. Valentijn

    ADHD Drugs for Chronic Fatigue Syndrome - How Well Do They Work?

    Crappy criteria being standard doesn't make it less crappy. It just makes it a bigger problem. Two people diagnosed using Fukuda can have completely different symptoms, so patients selected with it can't be assumed to have the same disease, and outcomes can't be safely extrapolated to ME/CFS...
  18. Valentijn

    Menon - Mitochondrial Modifying Nutrients in Treating Chronic Fatigue Syndrome: A 16-week Open-Label Pilot Study

    Trial registration is at https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370610 It was supposed to be a 20 week trial, so maybe they went with 16 weeks because the results looked better at that point? Chalder fatigue scores were a primary outcome at 20 weeks, so they should...
  19. Valentijn

    Menon - Mitochondrial Modifying Nutrients in Treating Chronic Fatigue Syndrome: A 16-week Open-Label Pilot Study

    Abstract is at https://www.sciencedirect.com/science/article/pii/S2212958817300915 8 out of the 10 authors are from psychiatry departments, which explains this sort of complete disdain for scientific methodology: Seriously, it's one thing to say "pilot study, can't afford a control, sorry"...
  20. Valentijn

    UK: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis National Outcomes Database

    Did they specifically consent to it? It sounds like that wasn't required, which would have some serious ethical implications, since their data was used for (dodgy) research.
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