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    Determinants of persistent symptoms after treatment for Lyme borreliosis: a prospective observational cohort study 2023 Vrijmoeth, Knoop et al

    "No evidence was found for microbiological or LB-specific clinical determinants of persistent symptoms, but an association of host immune responses with persistent symptoms was observed." No evidence at all? None? With close to 300 Lyme patients? I'd have thought there might be some somewhere...
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    Trial Report The economic burden of myalgic encephalomyelitis/chronic fatigue syndrome in Australia, 2023, Zhao

    Whatever happened to "Opportunity cost is the highest valued opportunity lost"? I'd hope to see a stab at that in any meaningful estimate. The lost potential never realized.
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    US: Announcement of Intent To Establish Federal Advisory Committee on Long COVID

    They may be able to learn from CFSAC's story.
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    Preprint IgG Antibody Responses to Epstein-Barr Virus in ME/CFS:Their Effective Potential for Disease Diagnosis & Pathological Antigenic Mimicry, 2023, Fonseca

    I confess I am a bit bemused by the broad indifference to IgG values that characterizes the greater medical community. It is my simple and arguably simplistic understanding that when infected, the body's first defensive response is IgMs. This lasts roughly 30 days. It can involve fever and...
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    Quantitative susceptibility mapping at 7 Tesla in COVID-19: mechanistic and outcome associations, 2023, Rua et al.

    I'd be lucky to get a 3T. When I tested normal with an MRI, it was with 1.5T. The times my MRI came out funky was with a 3T. If I had access to a 7T, I'd do whatever I could to see its results.
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    Preprint Post-Vaccination Syndrome: A Descriptive Analysis of Reported Symptoms & Patient Experiences After Covid-19 Immunization, 2023, Krumholz, Iwasaki +

    Depending on where one lives, there may have been many who were not really surprised. North central US, northeast US, west coast US...There, at least, there'd been precedent of sorts. Too often, this is what medicine is these days.
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    Opinions on payments to participants in research

    I've participated in several research studies. Back then, being paid helped with my decision to participate, but it wasn't necessary. I'm sicker today. Arguably a bit more cynical as well; at the very least, more practical. If I knew the researcher and liked them, I'd do it without pay, but of...
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    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Bloodwork and CSF, correct? Pretty good for acute infections. Even then, though, the metrics or diagnostics may be problematic depending on the infection. As for persistent infections, those lasting months or years, I'm not sure how strong we are at identifying them; that hasn't been our medical...
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    USA: Mount Sinai PACS clinic and Dr David Putrino

    Not sure why Lyme is in the mix then. Well, chronic Lyme as they are referring to it. A good portion of whomever they see with a history of Lyme will still clinically present as Lyme, e.g, CDC-positive Bb IgG's. But, eh, it's nice to be included.
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    Guardian: Private UK health data donated for medical research shared with insurance companies (UK Biobank)

    Whoa! If true in the US as well, the implications to people like me could be bad. That has to be illegal if they said it would be shared with no one. Tiered pricing, with some folks not allowed coverage? Folks like us?
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    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Gee, with only 17 patients, and all those years, I'd have thought they could look for pretty much any pathogen. Detecting them, that's different. But saying "we don't know what antigen to look for, so we never detected one" suggests to me that somehow not detecting pathogens was in part tied...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I misunderstand some things that are written these days, but I still appreciate the meaning of being flipped the bird.
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    Review Fatigue as the Chief Complaint: Epidemiology, Causes, Diagnosis, and Treatment 2021 Maisel et al

    So much for the concept of differential diagnosis. What happened to doctoring in the investigatory sense? What am I paying them to do, or not to do, because they get my money regardless?
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    Open The Long COVID-19 Wearable Device Study, Scripps Translational Science Institute, California

    Sorry if I'm detouring the device thing, but I NEVER EVER talk brain PEM with my doctors or familly. So this is a treat. Physical exertion can cause PEM, we all know that and most of us endure it. Brain exertion - yes, that's physical, but it's different - can cause pretty much the same set of...
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    Open The Long COVID-19 Wearable Device Study, Scripps Translational Science Institute, California

    So, good question. And as far as I can see, maybe. Brain PEM is tricky, at least for me. Clearly, sometimes HR and HRV play a role in predicting or even correlating with brain PEM. Emotions would dove tail there. Maybe forced concentrating on a study or writing like I'm doing now, but I don't...
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    Open The Long COVID-19 Wearable Device Study, Scripps Translational Science Institute, California

    I cannot see how these devices can help with brain PEM. They do seem to offer ways to avoid overdoing it physically. And as @Kitty pointed out, for newbies what a potential godsend. But the longer Ive been sick, the more the onset of brain PEM destroys who I am and what I can tackle...
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    Review Post Viral Pain, Fatigue, and Sleep Disturbance Syndromes: Current knowledge and Future Directions, 2023, Tackey

    First sentence of the abstract slips into assumption with the unequivocal "has recovered".
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