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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. Kinesis

    Are you able to drive?

    I can if I'm feeling well enough, for short distances. But last time I tried to drive into town for a dr appt. I crashed so hard I couldn't write well enough to circle questions on the paperwork. They didn't have a wheelchair in the clinic, and I was unable to remain standing so i kinda flopped...
  2. Kinesis

    A New Data Point?

    That totally counts! Thanks for taking the time to ask for clarification!
  3. Kinesis

    A New Data Point?

    Good questions! Let me clarify: The mother could have been sick with anything at all. Infection, bad reaction to medication, virus, whatever. If it happened at any point during the pregnancy, or very close to the time of conception, it counts. The question behind this poll is: is it possible...
  4. Kinesis

    Comment by 'Kinesis' in 'Talk is cheap'

    I'm not sure what kind of advice would be right, because the kind of people your friends are and the kind of relationship you have with them makes a really big difference. In my case, it was my friends that finally convinced me to slow down and take this thing seriously, but not until after I...
    • Kinesis
    • Blog entry comment
  5. Kinesis

    A New Data Point?

    Hi everyone! I sent a video link to a friend of mine anout the Rituximab trials and a friend of hers saw it and became fascinated my CFS. He works as a programmer for medical software, and a few days ago he asks her out of the blue if my mother was sick while pregnant with me. It was a fairly...
  6. Kinesis

    Adderall for Energy Boost in ME/CFS: January 15, 2010

    I was on Adderall for ADD before developing CFS/ME. I realized something was wrong when the morning dose didn't give me that get up and go feeling, so I quit using it for more than a year. During that time my symptoms just slowly and gradually became worse, despite trying pretty much everything...
  7. Kinesis

    Is there a healing process in ME/CFS?

    As a reiki master I've done some pretty crazy things. But the best person I know at it managed to mostly fix me for about ten minutes before everything came creeping back. Might be an issue with knowing what to target. With an obvious injury it's easy to feel a sense of urgency and know which...
  8. Kinesis

    Tarot Cards

    I read tarot pretty frequently, though almost never for myself. I also have family that was into it. My grandmother had an experience where she said she woke up one night and had this intensely menacing black figure standing over her bed. She ditched the cards and ouiji board the next day...
  9. Kinesis

    Comment by 'Kinesis' in 'The Art of Being Chronically Ill'

    Hey, i really like the work. It really has that sense of frustration down pat. I look at it and a part of me knows it. Keep doing it, and keep blogging about it.
    • Kinesis
    • Blog entry comment
  10. Kinesis

    What biology etc. book(s) should I read to understand ME research & theories?

    Can I just say, thanks for this! If I hadn't found this thread I'd have started one myself. It just seems really important! Actually, would this be an appropriate topic to pin?
  11. Kinesis

    Links to media coverage of the Naviaux study (Aug 30, 2016)

    This is amazing news! And it's the first thing that I've seen that relates to the sensation of some kind of internal switch being thrown a day or two before relapse.
  12. Kinesis

    Yantras

    Wow, here's a question I didn't expect to find here! It just so happens that I'm an advanced tantra practictioner (non-sexual variety) and having extensive experience with yantras. So I can answer this more or less definitively. As Sushi said, they are an advanced technique and should only be...
  13. Kinesis

    Cycles

    I'm only two years in, I think, and this makes me feel a bit less alone. Twenty minutes of hard labor will knock me into staring at the wall mode for hours. But then sometimes it won't. Mostly though, being too social for too long will always crash me, sometimes for days and sometimes delayed...
  14. Kinesis

    Should Physical exertion and Mental exertion be separated for PEM?

    So far I haven't quite nailed it all down. Before a couple of months ago all I knew is that sometimes I'd randomly crash and everything would be worse for a while. Most recently I had a very stressful event happen and it hit me the next afternoon, mostly physically. I had to crawl to the...
  15. Kinesis

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    Oh wow, these are great. And horrible. Mine hasn't been super bad yet, but twice now I've found myself growing really impatient with the stove not heating my food. It took fifteen or twenty minutes to realize I forgot to turn the stove on. Forgetting the topic of conversation completely all...
  16. Kinesis

    CFS vs ME comparison chart

    Here here! Maybe we could change CFS to mean "Completely Fracking Shitty" and just take it from there...
  17. Kinesis

    CFS vs ME comparison chart

    As it turns out, I happen to be friends with a dude who is a PHD in math and is utterly bored with his job. It's entirely possible that if we had enough data he would be willing to sort it out for us. I was thinking rather than a poll, we should create a detailed questionaire and link to it in...
  18. Kinesis

    CFS vs ME comparison chart

    Why not do it ourselves? We have all the tools here. We could begin by creating a series of polls related to symptoms and illnes progression, and then plot those points on a grid or venn diagram and see if we can find any correlations. If the questions are good enough and the poll is complex...
  19. Kinesis

    CFS vs ME comparison chart

    That, along with the tone in some places makes it easy to imagine it being written by a CFS/ME sufferer who was really sick and tired of people saying it wasn't a real disease. If you never brought it to an actual patient group and that's all you'd seen you'd believe it. It looks super...
  20. Kinesis

    CFS vs ME comparison chart

    This whole conversation is very fascinating and fits more with what seems true to reality than that chart. After everything else i've been researching it just seemed to think itself so definitive and certain, so I thought the smartest way of checking it would be to ask people actually going...
  21. Kinesis

    CFS vs ME comparison chart

    @halcyon Thanks! That helps a lot.
  22. Kinesis

    CFS vs ME comparison chart

    http://m.hfme.org/site/mobile?dm_path=%2Fcomparisonchart.htm&fw_sig_locale=en-US&fw_sig_access_token=f82bee0d3199c1da17fe2ecfd4f43f07fd22bb14&fw_sig=cd4872c94fa2bfc685eb1ed7f6c78dbc&fw_sig_site=41924925&fw_sig_potential_abuse=1&fw_sig_url=http://www.hfme.org/&fw_sig_time=1471503670764&fw_sig_sess...
  23. Kinesis

    Very good Huffpost article

    Wow.
  24. Kinesis

    Cycles

    @Snowdrop, now that you mention it, it is pretty broad. For me there have been fairly predictable cycles. I'll be in a rut for six weeks give or take, then one morning symptoms will begin to recede and then i'll wonder what in the heck I was so worked up about. But lately each cycle seems to...
  25. Kinesis

    ME/CFS people working full-time (or close to)? What is life like for you?

    He was really nice about it at least. I kind of knew it had to happen, but in the case of a job where you are directly responsible for the lives of others it's not a risk one should take. Not to mention the equipment. On the bright side maybe this could actually help me try to file for...
  26. Kinesis

    ME/CFS people working full-time (or close to)? What is life like for you?

    Well, ScottTryGuy, your alarm bells were spot on. But I couldn't morally drive a 120,000$ Tesla knowing I can have a brain fog crash. I tried to shift into dispatch but he said that was almost worse because of the pace. Good bye, momentary dreams of self-sufficiency... Thanks for your...
  27. Kinesis

    ME/CFS people working full-time (or close to)? What is life like for you?

    Hey everyone, I'm still a noob here and also with understanding ME/CFS. I was diagnosed about three months ago and confirmed a week ago, and I had no idea at all what this could do to people. I cannot say how much respect I have for all of us still struggling to live even though we are pretty...
  28. Kinesis

    Do you tend to feel worse at a particular time of day?

    Almost every day symptoms shift around 6pm. Most of the time they get better for about two hours and then between 8-10 they slide right back. Sometimes they go too far and I end up sleepless until daylight.
  29. Kinesis

    Cycles

    Edit: I found the answer to my original question half an hour after posting it, so since I can't figure out how to delete it i'll just change the question: If you have them, how long do your relapse/remission cycles last? Are they brought on naturally by time or something else? And thanks for...
  30. Kinesis

    The 25% Disease: Is Chronic Fatigue Syndrome (ME/CFS) Unique in How Many People are Homebound?

    @Research 1st, wow. Thank you. I can't even express how important this is to read. There are no words, but I'm going to try anyway. It's like listening to someone describe distilling water in hell using only willpower. It makes me angry, and it makes me fall in love. It makes me want to fight...