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    Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with POTS and cognitive dysfunction, 2025, Marie-Claire Seeley et al

    I don't think we know yet. We know there are metabolic problems in ME, and vascular problems, but where does it start or end. Let me quote Isaac Asimov - a circle has no end. I strongly suspect that in complex systemic issues with mutual feedback and feedforward loops that the dynamics of what...
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    Ketogenic diet

    In case its helpful to someone, this is how I eat now. My main drink is either water or green tea if eating. Snacks are walnuts or macadamia nuts. I start each meal with selecting protein, usually meat of some kind but I also eat tofu, and with ME we need more protein than regular people...
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    Ketogenic diet

    Latest news. First the bad. I suddenly have a swollen right calf and five leg ulcers. I need to get an ultrasound to make sure there is no blood clot. Now the really good news. I went from dangerously diabetic to NON diabetic in 3 months on the keto diet. I was still in the prediabetic range...
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    Pacing up - why it's as harmful and unevidenced as GET

    In my experience, including talking with others, we nearly always want to do more. When doctors encourage us to do more, before we learn to pace our activity, we keep pushing. The more we push, the more we get done, right? If you have ME or CFS, that is nearly always wrong. Pushing to do more...
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    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    This is partly where my current thinking is, but the decreased oxygen demand is due to both poor vasodilation and poor mitochondrial function. ETA should be both demand and supply. The mitochondria has less demand, the blood vessels supply less. It might be these two are connected, one might be...
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    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    I self monitor playing video games a lot, in order to identify when its necessary to rest. I tend to become erratic, lose focus, lose ability to set and achieve goals. In effect, in the games I play, its less about getting things done than running around and not doing anything. I also lose the...
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    Metformin

    The first time I was on metformin (for diabetes) I kept going hypoglycemic, so I stopped taking it. The second time I had a leg go black and four areas of skin fell off, resulting in ulcers. This was the same leg that had been badly damaged by a fall and subsequent surgery. While metformin is...
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    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    On a related note, maybe 25 years ago I proposed on a science forum that mitochondrial oxidative stress, and in particular a lack of glutathione, could result in misfolded proteins. A protein encoded in the nucleus is imported unfolded into the mitochondria, and folded there. If something...
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    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    With the caveat that discussions on this thread are speculation, though often backed by personal experiences, I have some ideas. First, about exertion. Its about energy demand. Cognitive, physical and emotional exertion will increase energy needs, driving increased mitochondrial energy...
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    Pacing up - why it's as harmful and unevidenced as GET

    Going out on a limb, way before there is sufficient evidence or I fully understand the claim, I could argue the Perikles hypothesis is basically PEM derives from both local hypoxia and systemic responses to hypoxia. So I might call it Systemic Hypoxia. Blood oxygen might be normal but that does...
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    Pacing up - why it's as harmful and unevidenced as GET

    https://www.healthrising.org/blog/2024/06/21/anaerobic-exercise-long-covid-chronic-fatigue-oxygen/ There are further links inside the article, and I need to follow up on them.
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    Pacing up - why it's as harmful and unevidenced as GET

    Just clarifying my thoughts on baselines. If an activity program uses a baseline its probably not an adaptive process, but a graded one. If exercise is part of it then it is definitely GET.
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    Pacing up - why it's as harmful and unevidenced as GET

    My biggest problem is not forcing myself to do more, its holding myself back from doing too much. Especially when there is need of more activity to engage with daily living. I really want to do more. I actually like exercise. But ME is like having a genie in a bottle, and it will let you...
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    Pacing up - why it's as harmful and unevidenced as GET

    Decades of experiences teaches me that baselines are nonsense. One year its mostly about one level, another year it can be higher, then much lower, and so on. This also applies day to day, not just year to year. You cannot establish a solid baseline and pace. Pacing is adapting to current...
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    Inactivation of ATG13 stimulates chronic demyelinating pathologies in muscle‑serving nerves and spinal cord, 2025, Drosen et al.

    In discussing mTOR activation, I would like to see how this compares to mTOR activation in type 2 diabetes. If the model is to even try to explain PEM, it must explain how mTOR activation is different in ME compared to type 2 diabetes. It might be, or there might be something wrong with these...
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    Donating and fundraising by people with ME/CFS - discussion thread

    I have donated in the past, but do not any more. I need every cent. However my will donates everything to ME research. I keep vacillating on exactly who I donate to though.
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    Proteomic analysis of post-COVID condition: Insights from plasma and pellet blood fractions, 2024, Seco-González et al

    Tying -omics to severity is a recent hope of mine. I have not read the paper yet so cannot be sure it does so properly, but the goal seems worthy.
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    Postprandial somnolence in people with multiple sclerosis, 2022, Christmas et al

    While I suspect many mechanisms are going on, eating a meal diverts blood to the gut. If we have insufficient blood to the brain, like in POTS, NMH etc., then this would automatically be a problem. I can be fine after a meal, or need a long nap. I am unable to discern a pattern in the food I...
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    Preprint Adverse effects of CoenzymeQ10 in the treatment of patients with chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), 2024, Olsson

    My response to CoQ10 is over a wide range. I have had boosts to energy levels, allowing me to finish my university studies. I have had zero benefit from a wide range of CoQ10 supplements, my response to specific supplements has been highly variable. I have had it induce subtle cognitive changes...
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