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    UK rare disease research landscape mapped for first time

    It's seldom good to be part of a minority. :(
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    Developing a blood cell-based diagnostic test for ME/CFS using peripheral blood mononuclear cells, 2023, Xu, Morten et al

    I can think of a half dozen or more diseases - off the top of my head - where I could not care less about learning more about the disease process, politically. All I would want is a reliable yes/no diagnostic, at least in the near term. It might not move science forward, but it immediately...
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    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    The plural use of syndrome is weird. Seems like an anemic attempt to disappear CFS as a discreet entity. Or maybe just a silly gesture to provoke people like us? It strikes me as a peculiar brand of juvenile.
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    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    Chronic Fatigue SyndromeS? By adding that extra "s" they really devalue ME/CFS, don't they?
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    Review Epstein-Barr virus-acquired immunodeficiency in myalgic encephalomyelitis-Is it present in long COVID?, 2023, Ruiz-Pablos et al

    There are other scenarios, I fear, not the least of which is the infection - whatever it may be - persists by virtue of its own voracity and immune evasion capacity.
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    Thesis Distress and coping in ME/CFS: Understanding the role of perfectionism and self-compassion, 2022, Houston

    Sometimes I feel sorry for these kids. They seem to be trying so hard. I think she used the word "self-compassion" somehow 17 times in just the title and 4 paragraphs above. That should count for something.
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    Review Posttreatment Lyme disease syndrome and myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review & comparison of pathogenesis 2023 Bai

    " Due to these factors, patients who satisfy the criteria for PTLDS may have had negative experiences in the healthcare field and experienced discrepancies between symptom onset and diagnosis. This may affect data in patients who may exaggerate symptoms to obtain care " Exaggerate symptoms...
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    Review Posttreatment Lyme disease syndrome and myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review & comparison of pathogenesis 2023 Bai

    This appears to have been authored by two individuals from a psychiatry department at a university in New Jersey. Writing about disease pathogenesis. Good grief.
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    UK Covid data

    To one degree or another, whether you're pro-vaccine or against, most feel swindled and lied to. Seems every other person is pissed. Science was supposed to be society's Great Arbiter, stoic and disinterested and fair, with medicine its compassionate side. Who with any long term illness...
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    Two coronaviruses isolated from central nervous system tissue of two multiple sclerosis patients

    I have a low regard for what they can infer from serum and CSF to begin with. Out of context, this can mean a few different things. I suppose it hinges - in part - on what they mean by "neutralized".
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    Two coronaviruses isolated from central nervous system tissue of two multiple sclerosis patients

    Add Covid to the growing list of pathogenic candidates behind MS. It's such a rare thing to see someone actually testing tissue, and brain tissue at that(!), for any neurological disease.
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    Professor Akiko Iwasaki and the Yale School of Medicine research on Long Covid and post infection syndromes

    And profitable. Wouldn't want to ignore the Bayh-Doyle Act. Remember when academic research had the feel of being above smear, above the mercenary? Some people feel that may have changed a little back in 1980 with Bayh-Doyle.
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    Professor Akiko Iwasaki and the Yale School of Medicine research on Long Covid and post infection syndromes

    Part of me is appreciative of the implication in "post-acute", although it's effectively muted by "syndrome". I'm curious, too, what sort of internal political dynamics might appear considering Yale's history in at least one area they'd be looking at. I hope they give Iwasaki free rein.
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    Professor Akiko Iwasaki and the Yale School of Medicine research on Long Covid and post infection syndromes

    It buggers this bogged brain as to when and why medicine stopped assuming that when symptoms persist after acute stage, the pathogen was still mucking about somewhere in the patient. Isn't the way of infections typically acute and treat (if treatable)? Then either the patient's infection...
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    Whole genome sequencing of human Borrelia burgdorferi ... reveals linked blocks of accessory genome elements ... on plasmids, 2023, Lemieux et al

    Hmm...Strle was an author. He was also an author of a similar study more than a decade ago, one with Steere. I am conflicted now. Is this another deflection? Focus on acute infections, maybe even a little disseminated, but decidedly no late stage? Do these more "dangerous" strains hold up as...
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    Whole genome sequencing of human Borrelia burgdorferi ... reveals linked blocks of accessory genome elements ... on plasmids, 2023, Lemieux et al

    "To our knowledge, no large whole genome sequence (WGS) studies of human isolates have been conducted. Fewer than 50 human isolates analyzed by WGS have been publicly reported, either sporadically or included in cohorts consisting primarily of tick-derived isolates and in the majority of studies...
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    Whole genome sequencing of human Borrelia burgdorferi ... reveals linked blocks of accessory genome elements ... on plasmids, 2023, Lemieux et al

    The study: https://journals.plos.org/plospathogens/article?id=10.1371/journal.ppat.1011243 Findings as summarized in Time: https://time.com/6310027/lyme-disease-genes-severe-disease/? My summary: How sick you get depends on the strain (vs species) of Lyme you're infected with. It's not a...
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