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  1. poetinsf

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    Thank you! It's part of my therapy. Moving to a new place boosts my threshold, so I'm shuttling between the pads on left/right coasts.
  2. poetinsf

    Could nerve damage or retrograde microtubule based transport in axons explain the delay associated with PEM?

    Are you proposing this theory to explain PEM? Or ME/CFS? How would it explain PEM lasting 3-4 days and then returning to the baseline? Nerve damages take longer to recover, I would think. If you mean the damage triggers ME/CFS, how would it explain ME/CFS lasting decades? And how would...
  3. poetinsf

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    Sorry for the late reply, I've been tied up with moving. Just being mindful does not require a lot of effort or practice in my experience. You just need some awareness to recognize the situation and detach yourself from it. And it can prevent harm. Take a road rage for example. You could get...
  4. poetinsf

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    "They explain that fatigue after activity doesn’t necessarily mean that this is dangerous or indicate “a lack of energy in the body.” A gradual, controlled approach to increasing activity is an important part of rehabilitation.6" These people have no idea what PEM is. If you have no idea what...
  5. poetinsf

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    I meant react judgmentally/emotionally. Not doing anything is one response. Overriding instinctual/learned reaction is another. Mindfulness is rather a simple concept that only requires observing without judging, and it can stand on its own. Both the medicalize version and the article make it...
  6. poetinsf

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    You simply decide. That's only requirement. Does it take some practice? maybe. Training? No. The post makes issue of conflating mindfulness with meditation. Seems like you are conflating too. That is not what I'm discussing. I'm talking about mindfulness, not medicalized whatever that...
  7. poetinsf

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    A simple criterion I use is whether I have control over the situation. We are programmed to anticipate, obsess and panic, but there is no point if there is nothing you can do to change the situation. Mind can override the evolutionary programming to some extent if the programming only makes the...
  8. poetinsf

    Three part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

    I don't enough about MBSR or MBCT, but meditation is indeed an intense activity that I wouldn't recommend to ME/CFS patients. That said, deriding "decontextualized" mindfulness as McMindfulness seems unwarranted. Theravadan writing compares mindfulness to calm bowl of clear water that reflects...
  9. poetinsf

    ME/CFS as a biological information processing problem

    Welcome to the club. A few of us have found something that works for our ME/CFS for whatever reason. I have found pseudoephedrine relieves my head/ear pressure (literally in my case), and some of the symptoms, at least partially. Anything dopaminergic/adrenergic that wakes up my brain seems to...
  10. poetinsf

    ME/CFS as a biological information processing problem

    One thing I'm wary of is the search for some hereto known signaling mechanisms. I don't think ME/FS is that novel or complicated. I instead think it's a maladaptive manifestation of existing fatigue/sickness mechanism. Novelty may be exciting for academics and a ground of sensationalism, but...
  11. poetinsf

    ME/CFS as a biological information processing problem

    If correlated, it should be worth looking into the possibility of cause/effect. It's "as close to smoking gun as any" since there is nothing at the moment.
  12. poetinsf

    ME/CFS as a biological information processing problem

    Sure, we eventually need a real science to back up the speculative theory. But I thought we are speculating at the moment for plausibility. And cytokine/PEM linkage is as plausible as any. We shouldn't shut down theories as a meme long as they make sense without contradicting observed...
  13. poetinsf

    ME/CFS as a biological information processing problem

    I'm inclined to believe the latter: the cytokine level change is normal, but microglia or brain network is responding abnormally to the slight raise that healthy people don't even notice. If the brain response is super hypersensitive, there may not be an instrument sensitive enough to measure...
  14. poetinsf

    ME/CFS as a biological information processing problem

    The idea is that the peripheral/local inflammation gets communicated to the brain and the brain reacts abnormally. There was a paper describing how inflammation in liver triggers neuroinflammation. And, more recently, about how peripheral/local inflammation and brain communicates...
  15. poetinsf

    ME/CFS as a biological information processing problem

    Well, you've gotta start from somewhere. With practically nothing known, metaphors and speculations are as good a place to start as any. In fact, I'd rather start there than some random anomaly that "scientific studies" have been spewing out. As long as the speculation does not contradict the...
  16. poetinsf

    ME/CFS as a biological information processing problem

    The question that I always ask is: how would this explain PEM? Signaling could be functioning fine. It could be the (brain's) response to the signal that went astray instead. Inflammation is inevitable and often-delayed consequence of all activities. And the inflammation delay and duration...
  17. poetinsf

    Muscle Power Versus Strength as a Predictor of Mortality in Middle-Aged and Older Men and Women, 2025, Araújo et al

    To add, the number derived from cal/min has been the best predictor for PEM for me at consistent 10-40% correlation range. All other measures such as heart rate had random correlation.
  18. poetinsf

    Muscle Power Versus Strength as a Predictor of Mortality in Middle-Aged and Older Men and Women, 2025, Araújo et al

    Speed has been the real killer for me and the best way to prevent PEM has been to limit my walking speed. Speed is still the killer even now in the recovery stage. When I'm on the road, I can scramble craggy mountains on all four for hours. But hurrying up a hill for 30 minutes puts me in the...
  19. poetinsf

    PEM discussion thread - post-exertional malaise

    Yep, PEM sticks out like a sore thumb when you are in the mild/recovered end of the spectrum. It takes away your whole day(s). When you are in the severe/moderate end, on the other hand, you are sick 24x7 with 90% of functioning already lost. PEM days are then only worse than usual. You just...
  20. poetinsf

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    If there was such a fingerprint, or fingerprints, that uniquely identifies ME/CFS, it would serve as a biomarker. As is, sleep disturbance is not even a requirement for the diagnosis. Will the studies that you quoted change that? Maybe. Sleep disturbance is a common feature of psychiatric...
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