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    Protocol Effects of Pycnogenol® in people with post-COVID-19 condition (PYCNOVID): study protocol for a single-center, placebo controlled, quadruple-blind, RCT

    It definitely can be with minor results. Was it working, was it not? Expectation can lead us to think it was working when it was not. However the placebo effect is limited in at least two ways. First, it applies mostly to pain perception, not a range of other things. Other effects are less...
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    Protocol Effects of Pycnogenol® in people with post-COVID-19 condition (PYCNOVID): study protocol for a single-center, placebo controlled, quadruple-blind, RCT

    I tried pycnogenol. At low dose it does nothing. At high dose ... wham, amazing, but only happened once. It was not repeatable.
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    : TV casting call for people living with ME/CFS

    Totally. If I had been taught pacing at an early stage I would probably still be working and worth millions. Instead of poor. I might have also lived a "normal" life, though not a typical life.
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    : TV casting call for people living with ME/CFS

    I did this for a while in the 80s. There is still an issue with getting to the range and back again.
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    : TV casting call for people living with ME/CFS

    That was me in 1993. I started walking and then running again, in a national park behind where I lived. It went OK for a while. Then it didn't. My crash pushed me out of my PhD program, and I have never got back to the mild ME I had then.
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    : TV casting call for people living with ME/CFS

    At one point there was a stat often quoted that half of all CFS (don't think it was ME) patients who recovered relapse at some point, sometimes years later. Usually they are much worse the second time around. Its a story I hear quite often, but I am unsure about the claimed relapse rate, it does...
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    : TV casting call for people living with ME/CFS

    Or ice skating for the over 100s in Costa Rica.
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    Opinion Vocational rehabilitation for Long Covid: a roadmap for recovery, 2024, Parkin et al.

    I had occupational health assistance. It failed. Such help is critical after many health issues, but while we still do not have definitive and effective treatments for post pathogen syndromes its going to remain problematic. In particular they are stumped when it comes to PEM and pacing.
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    Effects of calibrated blue–yellow changes in light on the human circadian clock, 2024, Blume et al

    No. I don't think so if I am interpreting you right. Blue light is more intense, so you can tolerate brighter yellow light for the same effect, again if I am interpreting this right. At the specific brightnesses (lux) used in the study, dim blue light and bright yellow light have the same...
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    Effects of calibrated blue–yellow changes in light on the human circadian clock, 2024, Blume et al

    This might mean we need more information to interpret this. By calibrating to equal melanopsin excitation they introduce a specific bias. The yellow light is much more intense than the blue for equal response. So care needs to be taken in interpreting this study. In doing this they showed the...
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    Trial Report The most severely ill patients with ME/CFS in Denmark, 2024, la cour

    Their conclusion would not be a surprise to many of us here, particularly those who have been sick for a long time.
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    Plasma taurine level is linked to symptom burden and clinical outcomes in post-COVID condition, 2024, Khoramjoo et al.

    But also to make nutrients. We need our biome for all sorts of things, and I am not sure we understand the full range or importance.
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    ME, cataracts and sleep

    This was my baseline, I think, until the cataracts probably developed. Then it got much worse. After some years it stabilized as I no longer had any circadian rhythm, sleeping at random times and for random amounts, but never more than a few hours (often 3, sometimes 2 or 5) awake or asleep. In...
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    ME, cataracts and sleep

    ME patients often have sleep disturbances not seen in the healthy population. This includes non-24, where the sleep hours advance each day, and circadian reversal, which is more recognized with African Sleeping Sickness. I have a history of this worsening, until my non-24 was advancing by many...
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    Do you believe ME/CFS is an immune mediated disease?

    My reply then would be "no idea", though really its "evidence pending". Something is wrong with our immune systems, but is it causal, a consequence, or part of a vicious loop with other things?
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    Review Systematic review of fatigue severity in ME/CFS patients: insights from randomized controlled trials 2024 Park et al

    I think activity measuring should be mandatory in ME treatment RCTs, and desirable in other kinds of ME studies. Perceived fatigue is an interim till we have something objective.
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    Review Systematic review of fatigue severity in ME/CFS patients: insights from randomized controlled trials 2024 Park et al

    Yes, and further fatigue is variable in ME. On the extreme end I have experienced fatigue so bad I could not move, that is extreme functional impairment. But is this even fatigue? Fatigue is the sensation that goes with that, but it is probably not the same thing. On the flip side I can have...
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    Do you believe ME/CFS is an immune mediated disease?

    I didn't answer the poll. I think all the answers are wrong to some extent. I strongly suspect ME is an immune initiated disease. However its unclear to what extent it has ongoing immune issues as a driving force. I think its likely the immune system is perturbed, but that may be secondary. Or...
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    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    A prospective study would start with healthy people and test them every time they get sick, or at least a blood sample. No waiting. At even six months the key biochemical processes may be much less apparent. This should probably be a much larger study looking at a much larger range of diseases...
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    What are the necessary conditions and criteria for a theoretical model of ME/CFS?

    I just want to clarify two points. First, a large study of healthy people to be followed, at least initially healthy. Second, the point is to capture the onset of ME, LC etc. at the very start. Not years later.
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