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    Is tinnitus an ME symptom? - Discussion of evidence

    What do you imagine patients bring to the discussion? What do you imagine clinicians bring? They both bring expertise, albeit it different forms, sure. But neither brings definitive knowledge of cause when it comes to persistent symptoms. Neither. Neither brings adequate diagnostics to help...
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    Is tinnitus an ME symptom? - Discussion of evidence

    Widely believed by a medical community that should be embarrassed and ashamed of itself. One that I suspect History will not reference kindly. What an unfortunate stereotype. But no worries since we seem incapable of convincing the past 50 years of medical profession much of anything. Hubris is...
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    Molecular Mechanisms of Neuroinflammation in ME/CFS and Long COVID to Sustain Disease and Promote Relapses, 2022, Tate et al.

    I want to agree with these guys, but it's a bit theory-heavy, and therefore kind of a house of cards. Besides, they lost me with the relapsing thing. It suggests to me somewhat of a misunderstanding of daily life with ME/CFS. If this is their way of speaking to PEM, no, that won't cut it. To be...
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    A Longitudinal Study of COVID-19 Sequelae and Immunity: Baseline Findings, 2022, Sneller et al

    One of the authors is the Head of NIH Lyme research. A couple authors are from the Lyme team. Moreover, one in five Covid patients walk away with persistent symptoms? Man, that 20% incidence rate keeps coming up in contentious areas. Wish I could think of where else... Curious, though, that...
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    Genetic studies of ME/CFS and other diseases including GWAS - discussion thread

    I am confused. Aren't oligoclonic bands just signs of brain or CNS inflammation, and though unusual, they're not specific to MS anymore than CD-57 is specific to Lyme? In fact, you can sometimes see those bands in spirochetal diseases that can impact the brain such as syphilis and Borrelia...
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    Genetic studies of ME/CFS and other diseases including GWAS - discussion thread

    Explain this to me, please. Then, if you would, explain it to me where it doesn't potentially end in a dystopian fashion for people it identifies with genes that renders them susceptible to many diseases, more than most people who presumably don't have that gene iteration/mutation. Nods. It...
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    Genetic studies of ME/CFS and other diseases including GWAS - discussion thread

    Inflammation is a downstream effect. It does not appear unprovoked; something generates the inflammation. It's not the "cause." With respect, you seem to be assuming something here that perhaps you should not. :) Afterall, this may have no chance at all. Perhaps the best chance is an all out...
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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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