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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. wabi-sabi

    Iv saline treatments

    Hey, that's good news that you caught it on the recording!
  2. wabi-sabi

    Iv saline treatments

    Do you know how many mg of sodium it is? Then you could compare to how much you were getting in the IV bag.
  3. wabi-sabi

    Iv saline treatments

    I would guess it's the amount of IV bags in a short time as much as the infusion speed. How much salt do you normally take?
  4. wabi-sabi

    Initiating a disability claim, unable to afford expensive doctor; can this be done remotely?

    Do you mean SSDI?
  5. wabi-sabi

    [Substack] Ruth Ann Crystal MD from Dr. Ruth’s Newsletter April 2024

    Here's how adenosine works: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7290927/
  6. wabi-sabi

    What do you sit on? My butt is so painful!

    Me too. The glute squeezes don't make me look any better, but I do feel a bit better.
  7. wabi-sabi

    What do you sit on? My butt is so painful!

    I do this too. I have 7 different bed pillows of various thicknesses and I keep shifting them around. Some days I am well enough to do glute squeezes and I pretend to keep some muscle mass that way.
  8. wabi-sabi

    What do you sit on? My butt is so painful!

    What is your wheelchair seat made out of? Mine is just a piece of fabric that sags in the middle like a hammock. That was painful until my Dad built a wooden seat. Then I put a pillow on top of the wood. More support made the seat hurt less.
  9. wabi-sabi

    What do you sit on? My butt is so painful!

    I haven't found anything that really works. I just stack up the pillows and keep shifting around so the pressure doesn't build up too much in one spot.
  10. wabi-sabi

    Channel four have our backs again!

    Can you post a link?
  11. wabi-sabi

    Dangers of Meditation

    Or for the heavy duty academic version, Brown University has a Meditation Safety Tookbox. https://sites.brown.edu/britton/
  12. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Or another way of looking at it is that we've built neural nets based on how we think the brain works. We can't then turn to the neural net to prove how the brain works, because it's not independent evidence. That castle is still built on air. Here's MIT's explanation...
  13. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Here you've clearly demonstrated the problem with reasoning from analogy. You're starting to argue about how a neural net works and get distracted by that, when what we are trying to discover is how the mind works. When we make an explanation about A is like B, when we are trying to...
  14. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    I was hoping this explanation made sense. It's something you learn in basic philosophy class. Do not reason from an analogy. You can use them as teaching tools. But you'd better understand the difference between ship, a model of the ship, and a blueprint of the ship.
  15. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    No, I think we should scrap that analogy altogether for brains. It comes with too many assumptions about computers that just don't fit brains. The biggest problem is that all mental stuff is at the nitty gritty bottom, a brain effect. Our minds arise from our brains. Our brains create our...
  16. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    For sure! I have no idea how my computer works, let alone a neural net or an AI. But I do know that if your don't know how your model works, you aren't going to be able to use it to understand what you are modeling.
  17. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Yup, you have to be having a good brain day to understand philosophy, and I'm not today. She's really writing about mental health stigma, not FNDs, but I think what she's saying still applies.
  18. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Here's the link again: https://imperfectcognitions.blogspot.com/2022/04/whats-wrong-with-computer-analogy.html
  19. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Here's a more coherent explanation than mine: mperfectcognitions.blogspot.com/2022/04/whats-wrong-with-computer-analogy.html
  20. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    That's the way the functional people look at it, which makes me skeptical of this analogy. They say, your hardware is fine (there's nothing wrong with you, normal test results, etc), but your software is malfunctioning (you're thinking the wrong thoughts, i.e. believing you are sick and if you...
  21. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    And this is yet another topic I am trying to read up on. I've certainly come across more stuff on psychosomatic illness, than I have on somatopsychic illness. I don't know if that reflects the available literature or my focus. I think part for the problem is that when diseases get moved from...
  22. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    I suspect yes, since mind and body are connected. But sorting out how much of each and how exactly they affect each other is the tricky part. Then too, stress and emotional upset makes everything worse, but some things it makes worse than others. I've been reading up on asthma and placebos...
  23. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Ooh, yes. I also think that this connection is something that we need to learn. Think of a little child at school who is being bullied. He comes home everyday with a stomach ache. Parents worried, take him to doctor, nothing is wrong. Child doesn't mention being bullied because he's afraid...
  24. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    One very simple explanation is that in psych illnesses therapy is very useful. A skillful and compassionate therapist, can, just by talking and listening, alleviate much suffering and manage chronic illnesses like anxiety or depression. That means the patient's illness is changed by a human...
  25. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Yes, it's wild how our symptoms can be so misinterpreted. For someone who is stuck in the ME/CFS is a psych disease mindset all that objective evidence that we can see doesn't register on them. That's why they keep saying "I know the symptom is real for you" without any understanding that...
  26. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    I think this is a very good way of conceptualizing it. I think a lot about how to sort out these things out I'm trying to read up enough on neuro and psych stuff right now to explain it. That should only take about 300 years...
  27. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    Yep. It a variation on the theme of "I understand the symptoms are real..." even though the disease isn't.
  28. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    I so miss that feeling- the pleasurable satisfaction of a good workout when you know you are getting stronger and fitter.
  29. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    I often wonder what would get through to them.
  30. wabi-sabi

    Landmark Study Confirms Chronic Fatigue Syndrome Is 'Unambiguously Biological'

    In healthcare perception has a particular meaning that's slightly different from how lay people use it. Perception is contrasted to reality, meaning it is the opposite of reality. In other words, it's the patient's misunderstanding or misreading or a situation or symptom, rather than the...