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    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    Except for the effort part, which simply doesn't belong. People with channelopathies may have an involuntary block per se, but they still usually can exert normal effort; their muscles just don't respond as well. I have no clue what "sense of intolerability that prevents voluntary effort" might...
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    Resonant breathing improves self-reported symptoms and wellbeing in people with Long COVID 2024 Putrino et al

    I fear research like this can send the wrong message. Take some deep breaths, calm yourselves - and you'll feel better? Even if it has a transitory effect, it may well just be transitory. Whatever is causing the problem in the first place - as far as I can see - is not being resolved...
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    Long Covid: Where Things Stand: Washington post live show, July 25th, 9AM USA East Coast time

    Jaime was so good. I could never have comported myself as well as she as sick as we are. She conveyed some complex concepts easily and engagingly.
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    Novel characterization of endogenous transient receptor potential melastatin 3 ion channels from Gulf War Illness participants 2024 Marshall-Gradisnik

    Maybe not landmark, but once again a curious concept, this one of acquired channelopathy, in that in many ways it fits into several contested diseases' sequelae - including ME/CFS and Gulf War. You'd think large scale replication efforts would have already been done, or at least attempted...
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    News from the USA, United States of America

    Yes. For me. at least, it could not be much worse. As with the NIH Eefrt bizarre weirdness, you have to ask, "Why"?
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    News from the USA, United States of America

    Yes. Agreed. But it's complicated by issues you don't necessarily see in ME/CFS (just as ME is beset by things you don't see in Lymeworld). One example is diagnostics. Let's say you dedicate all that $25 million to erecting a diagnostics' platform that actually identifies directly whether you...
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    News from the USA, United States of America

    I'm all for getting more money in an area that is seriously underfunded, and I applaud such efforts, especially successful ones. That being said, depending where that money goes, it could be little more than Groundhog Day.
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    News from the USA, United States of America

    Broadly speaking, yes, and - on paper at least - for longer. These (TBDs and ME/CFS) are in large part diseases whose narrative is politically derived and maintained
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    News from the USA, United States of America

    Allocating more money in theory is a positive. Respectfully, throwing that increase at more or less the same groups who have failed patients for almost a half a century doesn't strike me as "a pretty big deal" anywhere. If a few million more $'s were allocated for ME research and given to the...
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    News from the USA, United States of America

    Meh. $25 million for "Lyme", defined and characterized by whom, spearheaded by whom? Spent by whom? As for $125 for tick-borne diseases, sounds alright until you realize how many TBD's there are - and how prevalent some have become. Babesiosis alone could use that amount. I suppose it...
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    Orthostatic intolerance

    To me, this simply seems poorly worded and vague. First, pwME can suffer from OI even when not in PEM. Perhaps if they had observed that PEM exacerbates OI symptoms, it may have been closer to the mark. Second, they appear to be equating energy expenditure with PEM triggers. Maybe so, but...
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    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    Back in the early 1950's the Nobel Prize went to a couple of guys who demonstrated that a fetus can inherit from its mother an immunological unresponsiveness toward an antigen or group of antigens. But some veterinarians had been purportedly toying with the concept before that, and well after...
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    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    Could still be a downstream effect of a virus, just not a flare per se. Acquired channelopathies come to mind (just as an example).
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    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    I'm pretty sure we discussed it here. Sorry, my brain can't work the Search function.
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    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    It could be a lot of things. My vague recollection is he found NO evidence of ANY pathogen - virus, bacteria, or parasite - in ANY OF HIS COHORT (if I recall correctly, and I may not be). Given that his cohort was in large part from the NY metro (if I recall correctly), that would be quite...
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    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    I believe this may apply to me as well. Not clear if it's viral, though. Overall though, in terms of persistence, the more I dig into immune tolerance and it's role in viral reactivation, the more I suspect it may prove relevant.
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