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    The disappearance of ME/CFS

    Science doesn't necessarily win. It might not even place. Lots of books out there that try to demonstrate what happened, and why, but there's simply too many why's. ETA: This is an epic fail in diagnostics, which is different than what drags at ME/CFS, at least in theory. Geez, even that is...
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    The disappearance of ME/CFS

    Throughout the 1980's, in all facets of medicine, there was an acknowledged Lyme persistence called chronic Lyme. By the early 90's, a mammoth and sustained PR blitz to disappear chronic Lyme as a politically correct concept - that continues to this day - had been launched. By most accounts...
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    USA 2024: Want to participate in MAESTRO? Chronic Lyme; Long Covid

    That's Bay Area Lyme. How circuitous of them. Lol. Thanks @Mij , I'm going to call just to say WTF. Nicely. In a patronizing old guy sorta way.
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    USA 2024: Want to participate in MAESTRO? Chronic Lyme; Long Covid

    No phone number. Shame on them. It may be a generation thing, but if I can't talk to somebody, I'm not filling out any questionnaire.
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    Post-Exertional Malaise - a discussion including defining and measuring PEM

    Understood. Thank you. For the first time in about a decade, I just had my EBV and HHV6 levels tested. I feel like crap and likely look like death as well, but am unsure what my high titers signify other that past exposure - that's why I asked. :)
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    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I'm sorry. How did you decide you'd HHV6 and EBV reactivation? I'm not disputing this; I'm asking to the metric. Why I'm asking is because I distrust current standards across many infections. I respect your interpretation.
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    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    With immune tolerance, in theory, virus can persist without producing antibodies, so it's only through PCR or direct culture that we can "see" them, and if they're recused in reservoirs hard to access - like brain tissue -persistence can be difficult to demonstrate.
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    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Btw, I am aware he is making this our fight, and am relieved and empowered that we have members far smarter than I that are willing to take him square on and highlight the holes in his specious "theory". I just think we should be responding to him with "Hey, kid, you're in the wrong class" as well.
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    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Understood. And well done. I'm just suggesting this shouldn't have to be our fight. We have many symptoms. One of my worst is balance. This can be objectively tested for. Fine. But there are others that cannot. Walitt is making a case based on one claim that he really is making, while...
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    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    I'm not sure that is our main argument. I think that's what Walitt appears so eager to disprove. I think our main argument is we are too sick with too many persistent symptoms to have any meaningful QoL, and to engage in any substantive effort for too long without having to stop because of...
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    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    I fear that resolution to the contested disease debacle must be political. That means, probably, something bipartisan. There really isn't much of bipartisan going around in the US these days. If there were, it likely wouldn't flow in our direction. We may have to build a better mouse trap, but...
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    NEWS: Chairman Bernie Sanders Releases Long COVID Moonshot Legislative Proposal

    @Dakota15 , I'm sorry, I don't know which group you're affiliated with. Do you work with Jamie Selzter? Sorry, my memory is not good. But I'm thinking I want to try to contribute something to the national cause, more politically, while I may still be able. When we were healthy, way back when...
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    Post-Exertional Malaise - a discussion including defining and measuring PEM

    I think this is an appealing idea. I don't think it will apply to cognitive/emotion/focus-based PEM, though. Still cool to try.
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    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I still want to rail. Especially when inserting ideology into the mix. Ideologies come and go, though. This is sustained bullshit that has endured scores of years, and spanned countries and continents. I'm not sure what the constant is beyond sick people being mischaracterized and ostracized...
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    Post-Exertional Malaise - a discussion including defining and measuring PEM

    This is intriguing. One point, however: channelopathies can also manifest with delays.
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    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I worry that this is a top down phenomenon, one with many points of influence. I think it predates Wallit,, that he is a downstream ripple, a means to an end, much as the BPS school is. Someone years ago suggested the way out of this morass would be through political leverage. Maybe so. In...
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    Brian Walitt and his role leading ME/CFS research at the USA NIH

    Oh dear. If there are persistent foreign antigens at play, then no, this argument cannot be right. This seems to me more dangerous than wishful thinking. ETA: They'd have to demonstrate an agnostic antigen, one common to groups of people, self-generated, but not a remnant or debris from the...
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    Brian Walitt and his role leading ME/CFS research at the USA NIH

    To me this feels like a contrived forced fit. It reads like that. The logic feels like that. The entire Wallit thing doesn't fit. They jammed this thing in. So why force it now when the spot light is on? Well, it could be Stupid and greed and culture. They seem to be present everywhere in...
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