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    Long COVID Persistence and Surveillance Gaps Across 58 US Hospitals, 2026, Tian

    A chronicity rate of roughly 20% is strikingly familiar.
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    Very mild or prodromal ME/CFS

    In 1999 I went camping. Was roughing it in the Northeast US woodlands for three days. This was a year before my symptoms slowly started to appear. When I got back home, first thing I did was shower. I noticed all these freckles on my legs and lower torso. I looked hard and suddenly realized...
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    How old is ME/CFS and what are the implications for theories of mechanism?

    This gets complicated very quickly - or at least it does for me. And I must confess up front that I really don't have a horse in this race. It's just me opining. Regardless, too many question marks confront us for any solidly accurate response. Definitions are important and I'm not sure things...
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    Brain cells

    I'm not sure I agree with that. At the very least, I suspect this is not the same iteration as similar conditions reported in medical annals. I think our ME/CFS is less than 100 years old. There is precedent in Lyme disease. Technically, Borrelia has been around for thousands of years. But...
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    Brain cells

    Immune system signaling is part and parcel of our immune system. This theory presupposes our immune system is in part broken, that the immune signaling switch is stuck in "on" mode, without persistent provocation, and that malfunctioning signaling is in turn causing faulty brain signaling...
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    Brain cells

    This. The brain is involved, and so too is the immune system. Trying to unravel our symptom stew can be daunting, but I think I prefer the simpler answer: Our immune system is the chief culprit behind our symptoms - as it is with most diseases.
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    Genetic similarities between ME/CFS and other diseases

    I'm sorry, it was late for me eight hours ago. I believe in the persistence theory. I believe that's what makes us sick, fools us lab wise. A pathogen tandem abrogates our immune system, it snips the wiring so to muffle the alarms. But I also think, paradoxically, our immune system is making...
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    Genetic similarities between ME/CFS and other diseases

    Even if the immune didn't think so? If it never had been activated? If it had been duped? Thank you @paolo.
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    Genetic similarities between ME/CFS and other diseases

    @paolo , quickish question: What if ME/CFS is not simply an ongoing, and unique "virgin" and unqualified disease, but instead is an enduring end-point that can be reached through any number of mechanisms, most of which might be explained by pathogen persistence - and the persistent agent can...
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    Does ME/CFS cause permanent damage? Is it a degenerative disease? Discussion thread

    I have to admit to both @Verity and @Utsikt that's a dubius scientific method I am embracing. :)
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    Does ME/CFS cause permanent damage? Is it a degenerative disease? Discussion thread

    What percent of us return to our premorbid levels? We don't. So perhaps the initial insult caused mci, or other damage, and then we level set. Maybe. But I feel worse, and that's my metric after studying all these studies about so many of us and folk like us for far too many years. BTW. I've...
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    Does ME/CFS cause permanent damage? Is it a degenerative disease? Discussion thread

    Over 30 years? Sure it is. I've steadily seen my IQ drop over the years. The last I checked, it was down 20 points over premorbid levels. Now, it may be fair to claim those are objective tests, but I can feel my Stupid, much as I can the sense of poison that courses through me that no one can...
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    Does ME/CFS cause permanent damage? Is it a degenerative disease? Discussion thread

    Maybe. For those that report sustained improvement, is that improvement back to before symptom onset? If not, and for those of us who do not truly improve, I'd stick with degeneration without necessarily the implied downward continuum. Truth be told, the terms are not mutually exclusive and...
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    Very mild or prodromal ME/CFS

    Like most, I didn't know my first symptoms were symptoms. Hindsight granted me that insight. My very first was a balance issue that affected my drive to work. And driving at night. I say "balance" because I cannot think of a better word. Equilibrium? Then came the issues with writing and...
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    Does ME/CFS cause permanent damage? Is it a degenerative disease? Discussion thread

    I suspect most pwME would argue it can be degenerative, and at some point (probably early on?) absolutely is - but also in a very peculiar manner, can halt its downward spiral, or continue after the wrong provocation to plummet. I know for a fact my first eight years were a constant downward...
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    Brain cells

    Some, but only some. ETA: And how did they shoehorn that into neurology? We have more than what we did before DecodeME.
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    Brain cells

    Fair, but ascribing channelopathies to neurology seems almost capricious. How did they pull that off? Some PP researchers like Tawil did have genetic references - as we also do now. If those researchers can stake a claim, maybe we should be doing the same.
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    Brain cells

    I am concerned about the practical ( e.g., insurance and treatment) and cultural implications of a neuropsychiatric heading. Channelopathies, which certainly resemble ME/CFS, fall under a neurology umbrella. They are considered neurological, not neuropsychiatric, even though cognitive and...
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    Brain cells

    We need more ME/CFS brain autopsies. How many have been competently performed in the last almost half century? Moreover, we don't just need pathologists that have a good idea of what they are looking for, we need to ensure they don't find only and precisely what they are looking for due to...
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