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    Suppose you have €5-10 million for ME/CFS research, what would you spend it on?

    That's my belief about ME too: that it's a subtle dysfunction in possibly just a few brain cells, which affects various other brain cells in other parts of the brain, varying with the individual. Given the difficulty of that, I think a better approach might be to test a large number of...
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    Changes in the mitochondrial membrane potential in endothelial cells can be detected by Raman microscopy 2022 Pieczara et al

    Another potentially useful tool for figuring just what's going on in bodies. Even if this sort of testing shows no differences between PWME and PWithoutME, that would at least reduce wastage of research resources and direct them along other paths. It takes many steps to reach Bones' tricorder.
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    What is the quality of life in patients with long COVID compared to a healthy control group? 2022, Liska et al

    Shhhh! That was carefully done to get numbers that looked good. After all, the goal for publication is numbers that look good, regardless of how you got them. :grumpy:
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    Open Internet-based Treatment for Patients Suffering From Severe Functional Somatic Disorders (OneSTEP), Denmark

    Perhaps a good control would be to have another set of patients watching Disney movies, or Action/Adventure movies, or cooking shows or nature shows. Just a wild guess that entertainment shows will be just as (in)effective.
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    Can we get large-scale observational data on PwME's Covid outcomes to get us on priority list for treatments and vaccine boosters?

    Not really. We seem to be developing ME from immune activation events, whether viral or other microbial infections, or physical trauma ... or vaccines. Once ME is switched on, we're stuck in that state, so future immune activation events may make our severity worse, temporarily or long-term...
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    High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial 2022 Hansen et al

    Yay! A published study that doesn't claim to be an effective treatment. There should be awards/rewards for publishing negative findings. Maybe national/international awards for most useful negative findings?
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    The grand challenge of autonomic disorders

    One more possibility: monitor the nerve signals, and process that data to look for abnormalities. Maybe signals are travelling differently on different sides of the vagus nerve, or the signal levels or patterns are different in POTS. Computers are excellent for that sort of data processing, so...
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    Unravelling the nature of postexertional malaise in ME/CFS: the role of elastase, complement C4a and interleukin-1β 2010, Nijs et al

    Some of us, myself included, can do fairly strenuous exertion without triggering PEM. I've had periods where I've done strenuous daily exercise (long hikes, digging soil) for weeks or even months. None of that reduced my ME symptoms. The reduction in ME symptoms was the cause of doing more...
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    The symptoms of chronic fatigue syndrome are related to abnormal ion channel function, 2000, Chaudhuri et al.

    From a quick check, it looks like sodium channel function can be measured with existing technology. There are radioactive sodium isotopes for PET scans, and dyes for microscopy, so his theories should be relatively easy to test. To me it sounds like the researcher looked at some diseases that...
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    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    For some reason, the first thing that popped into my mind was "The Emperor's New Clothes". Someone people are impressed by (or want to impress) 'sees' something, and suddenly everyone else sees it too. Flying saucers? Crop circles? Witches? Are these people only looking for them in PWLC, or...
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    The symptoms of chronic fatigue syndrome are related to abnormal ion channel function, 2000, Chaudhuri et al.

    Depending on the language they were written in. ;) It sounds like the author is claiming that poorly-defined kinda-sorta-similar symptoms are identical. So, all PWME have been exposed to these specific toxins that cause serious health problems but haven't been regulated or have published...
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    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    Oh, then why has there been any fuss about them? I didn't read any of the reports about them (waiting for some confirmed interesting findings), but just assumed that they actually found microclots in the blood, and/or other blood/vascular abnormalities. If they're doing some processing that...
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    IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)

    No, definitely not beliefs. There are various well-known disorders of perceptions. Some people might smell colours or hear textures. Some people are overly or underly sensitive to normal inputs. Phantom pain is the triggering of neural pathways that served a part of the body that no longer...
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    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    I thought of an experiment that might be useful for the microclot theory: take samples from different parts of the body and compare numbers of microclots. For example, are there more microclots coming out of the brain than going in? Maybe they are originating in one organ, or certain muscle...
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    IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)

    I had, and still have depending on various factors, the perception of muscle aches in my front thigh muscles. I'm pretty sure that there's nothing physically or biochemically wrong with those muscle groups; it's just mis-processing of signals from those muscles that I perceive as pain. LDN...
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    Over-reliance on English hinders cognitive science, 2022, Blasi etc al

    Klingon probably doesn't have words for "fatigue"or "I don't feel well". Such weaknesses are just not spoken about.
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    IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)

    As a cause of ME, or just as something that worsens existing ME? I suppose there could be some cases where a persistent infection could keep a patient in the ME state whereas they would otherwise be able to switch their ME off, but I think that would be a fairly tiny percentage of PWME. Aside...
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    Over-reliance on English hinders cognitive science, 2022, Blasi etc al

    Pick the bad psychological research paper of your choice. Translate it to a different language. Does that improve the bad science? Language, and its historical biases, can have an impact. Describing an ME symptom as 'unrestful sleep' directs thought processes towards sleep disorders, rather...
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    Lactate Impairs Vascular Permeability By Inhibiting Hspa12b Expression Via Gpr81-Dependent Signaling In Sepsis 2022 Min et al

    I wonder whether this could allow localized immune activation. For example, maybe it could activate astrocytes directly around a vessel, altering their function and the function of neurons they connect to, without going much further, preventing researchers from seeing any abnormalities.
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    Risk factors for suicidal ideation in a chronic illness 2022 Elliott and Jason

    I have no doubts that my immune system is involved in my ME. I'm also convinced that my glial cells are involved. When I had my temporary remissions, my ME switched off completely over a matter of minutes. Thus I'm also convinced that my ME is an abnormal state being held that way by a...
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