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    Genetic studies of ME/CFS and other diseases including GWAS - discussion thread

    Only if the cause is a genetic anomaly. I fear anything else discovered, e.g. a predilection to develop long-term sequelae, could lead to some unwanted consequences. Best to hone in on cause(s), imo, from multiple vantages. I think we can no longer afford to look under rugs sequentially. If any...
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    Excessive Postural Tachycardia and [POTS] in ...: Associations With Distress, Impairment, Health Behaviors, and Medication Recommendations, 2022,Klaas

    Seems to me if a study has the word "health" in any way near the word "behavior", someone is going to get screwed.
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Yep. But the idea that Lyme diagnoses are handed out like candy with no concern about serology is pretty much the stuff of propaganda, at least in the US these days. I cannot speak to Europe. It's all about what we know and what we don't. The bottom line is we don't know as much as orthodoxy...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    Well, yes, I suppose to a certain extent that's true. But your picture is so incomplete it does a disservice to the thousands upon thousands of people with Lyme who HAVE done their homework - many of which satisfy the 2T diagnostic protocol and have had the conventional treatment protocol fail...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    @Wyva and @Mij, Im sorry I don't want to derail this thread, but there is a logical fallacy about applying exceptional occurrences to broad ones. Unfortunately I cannot for the life of me recall it. :) Why do you imagine these foolhardy sick patients buy into what you seem to think is BS...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    @Mij , I am sorry for the loss of your friend.
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    I am always taken aback when I see such perspectives from people I respect. That's because it well may be. Can be. But not in a vacuum. Most Lyme clinicians insist on some sort of serological proof, not just symptoms. Certainly the ones I follow usually do. Well, yes, and you consider this...
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    Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

    Always nice to see some of these authors, but imho crappy Lyme coverage. I'm not sure what that says about the integrity of the rest of the piece. Maybe nothing. Also, I bring a bias to bear in that if I think someone's Lyme position is suspect, that reflects often on how I regard other musings...
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    Unexplained post-acute infection syndromes, 2021, Choutka, Iwasaki, Hornig et al

    merged thread A couple of the authors' names got my attention, so I skimmed this. I honed in on their Lyme analysis. I personally would give that a "D" grade, but I'm sicker than typical these days so perhaps I'm being too harsh. I cannot speak to the strength of the rest.
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    USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next call 4 Dec 2024

    I suspect it's not limited to liability concerns. Naturally there may be related concerns in play - for instance, insurance lobbies - but I imagine, because we're speaking the US, entrenched worries may run a little deeper.
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    Question: what do you think is a reasonable time that passes between an infection and ME/CFS onset?

    Infectious diseases have an entire discipline dedicated to them for a reason - and still they proliferate. Many of them - many - have little in the way of a signature, and many have no way of diagnosing them serologically. There arguably may be a clinical signature, but who are we kidding? This...
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    Question: what do you think is a reasonable time that passes between an infection and ME/CFS onset?

    Yes, but ME/CFS is quite often triggered after an elongated lag phase, so then by your logic it is pretty likely that this is the norm for ME/CFS. On the contrary, I think it can be telling and help with the diagnosis, that is, help determine which infection brought on ME/CFS. I think this will...
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    Question: what do you think is a reasonable time that passes between an infection and ME/CFS onset?

    Delayed onset may ultimately reduce down to delayed onset of ME/CFS symptoms - not necessarily delayed onset of disease or infection. Two broad examples that come to mind are asymptomatic disease and relapsing remitting disease. Also, now that I think about it, "packaged" diseases that...
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    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    Sure, it's good to debate any views, and to disagree. But you suggested her's were unhelpful. You don't think medical experts make assumptions all the time, and consider their's earned? I might suggest HJ could qualify as an expert on ME/CFS issues. But it does afford them the right to opine...
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    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    Why? She's earned her assumptions. She helped put us smack in the public square, at least for a time. Besides, we all have some earned assumptions, just as most of us have opinions as to culprits , whether pathogens or immune issues or what have you. Should she shelve hers until something...
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    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    This is an important step in the right direction, but I'd suggest more political than anything else. Hard fought for, though, yes. Perhaps a different way to view her reporting is it informs patients. BTW, what agreement? As for good faith... This strikes me as an odd observation. So you are...
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    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    Not a good era for the CDC or NIH since the 80's...Seems to me heavy on political expedience and light on deep and accurate and patient-centric research. I mean look at what got screwed up during the 80's: AIDS and Lyme and CFS. How many people grew disabled in the U.S. alone? Not a decade for...
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    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    Doubtful it was the right thing to do considering where we find ourselves today. Moreover, if I read his note correctly, he was trying to disappear a disease entity that was created by the EIS in lieu of ME - or at least reduce it to the symptom of chronic fatigue. Shouldn't he have instead...
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    "The Why: The Historic ME/CFS Call To Arms": new book by Hillary J Johnson

    Are these patients misbehaving in some manner, and if so, who makes that call? Prejudiced? Against institutions that not just abandoned us, but worsened our lot by deliberately psychologizing us, and rewarding the psych industry and enabling insurance carriers to deny our claims? WE are...
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