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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. T

    ANS rewiring

    I'd love to hear more about this from anyone using it. I am interested, but also cautious ... looking at the web site for the program, I checked out the page saying it was based on science. The science wasn't stated very convincingly. And at the bottom of the page, only a small handful of...
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    Warnings about taking some meds when ill

    MBSR is mindfulness based stress reduction; a technique pioneered in the US by Jon Kabat-Zinn. It's now used in medical centres.
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    Warnings about taking some meds when ill

    I'm glad to hear that you can sleep ... but it seems that our overall health challenges increase with aging. OTC meds, herbs, supplements etc have never done anything for my sleep. I am going to try some minerals and also MBSR now for my high BP and see if I can get it down naturally. By the...
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    Warnings about taking some meds when ill

    I'd be very interested to know how everyone on this thread is managing their high BP after a few years have now passed by. I am hoping you have all seen improvements. I have had ME for 19 years, and now have high BP. The ACE inhibitor that my GP put me on causes me total insomnia. This is listed...
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    The Real ME: A Stock Photography Resource for the Media

    I love these photos of people in bed ... true, as posters have said, we are not all in bed all the time (or on the couch either) but that's not the point of this. The point surely is that, if we want to educate the public about this being a serious illness, then there's no point showing photos...
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    August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis

    I think that maybe closer to 100% of us have been bedbound at some point; whilst at any given moment in time, maybe 25% of people with ME are in bed, a longitudinal study of individual people would surely show that a majority of them have had periods stuck in bed. I've had this illness for...
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    Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data

    Ron Davies at Stanford University in USA has a son with severe ME/CFS and Ron is leading a team which is developing new technologies. I think this might be a good example of expert (and personal) understanding of the illness coupled with the leverage to get funding based on new technologies...
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    Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data

    I think most of us have already done our "own experiments" to the utmost limits of our abilities, and we are still sick. I'm not sure why anyone would complain about money and medical expertise/ technology being directed towards finding help for us all. Isn't that what we all need?
  9. T

    Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data

    Ron Davies at Stanford University in USA has a son with severe ME/CFS and Ron is leading a team which is developing new technologies. I think this might be a good example of expert (and personal) understanding of the illness coupled with the leverage to get funding based on new technologies...
  10. T

    Sleep Study and other test results...

    I had a sleep study done too -- only slept twice, 40 mins each time, in a 7 hour test. I was so sleep deprived that I twice drove straight through red lights. Scary!! Prior to ME, I had always slept a solid 8 hours with no problem all my life. ME completely disrupted 40-plus years of good sleep...
  11. T

    Muscle Weakness

    I I'd agree that, for me, DOMS and PEMs do not feel like the same thing. Before having ME, I hiked, climbed mountains, kayaked, sailed big boats, etc. I remember the 'good pain' feeling of healthy muscle that has been given a good workout and is recovering nicely. Now, anything too energetic...
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    Muscle Weakness

    Love this idea! I'd like to be going downhill too -- but in the good way and not the bad way!! You really nailed it for me when you said is it nerves, or heart, or muscles. I've been around and around and around that mulberry bush so many times for 14 odd years. The cardiologists' tests all show...
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    Muscle Weakness

    The difference between 'weakness' and 'stamina' is interesting. They're not quite the same thing...but pretty close since lack of stamina leads rapidly to weakness, in my personal experience. Perhaps the test-retest studies were focused on stamina. But I don't think of weakness as merely a...
  14. T

    Muscle Weakness

    I have experienced something similar to this during my worst ME period; my right leg was so weak it would start giving out, and as I walked, my right foot would sort of be dragging. This went on for about a week...a week during which I was really in full crash mode but, since I was also in the...
  15. T

    Muscle Weakness

    My O2 saturation is low on cardiac testing too, and so is my output of blood on each contraction. On exertion, I get angina-like pain in my chest, and get breathless. After a few years of this, I developed an intermittent bundle block...a 'faulty connection' in the nerve signal between upper and...
  16. T

    Muscle Weakness

    Hi! I have read several medical research papers that have run something called test-retest studies on 'normals' and on ME patients. Basically, cardiac function and muscle function are tested...the patient is exercised, then given 24 hours rest. Then the original tests are run for a second time...
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    Muscle Weakness

    Muscle weakness is a defining part of my ME symptom. I was once required to do a stationary bicycle test for a heart test. I was supposed to pedal for a certain length of time and get the bike's speedomoter up to a certain speed. But the longer I pedalled, the slower the bike went! My legs got...
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    Help for Karina Hansen!!

    I am sure you all know already about the scary case involving Karina Hansen in Denmark, forcibly confined and treated in a psychiatric institution when she has no diagnosis of a mental illness -- just a diagnosis of ME. I cannot imagine the sense of trauma and isolation she is experiencing...