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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Sunday

    My Understanding of CFS/ME and How To Heal

    Call it what you like - and I understand if you are disenchanted by misleading versions of this - but exactly by using my own ever-evolving version of this method (combined with some other things) I have dropped literally hundreds of neuro symptoms and a bunch of other symptoms, too - to the...
  2. Sunday

    Humic & Fulvic Acids

    I hadn't heard that about arginine, good to know, and I'm also happy to have a recommend for a form of magnesium (from someone who isn't selling it). I've been trying different forms. About vitamin D3 - when Cheney's "oxygen toxicity" theory came out, I was doing tons of antioxidants...
  3. Sunday

    Check out the CFS Treatments Infographic at CureTogether.com

    I went and put in my stats. Thanks for bringing this to our attention, Rich. You're right about informal surveys of course, but given the way statistics on PWCs seem to be tampered with in many studies, perhaps the empiric method may prove better in our case. Anyway, it's interesting to do, and...
  4. Sunday

    This may sound hokey..Rife Machine for CFS

    I agree with you, Wayne. We simply don't know what's going to work for us until we try it. Obviously, we want to do some research, but we know we can't count on science for everything we need to know: science hasn't even found a test that will show whether we've got something! But I think we...
  5. Sunday

    Hormones

    I think what Dr. Mikovitz meant by hormone-related might have been that hormonal changes (either puberty or menopause, and possibly this is true for men as well, though their changes are less obvious) - those changes often spark this retrovirus into action. There are herbs you can take which...
  6. Sunday

    How to address OXYGEN TOXICITY WITHOUT Cheney's CSF?

    I've recently been talking to a young woman who did go to see Cheney. He also has a research site and a public site (www.cheney.com) where you can garner some ideas. But since these are more public forums, he's more generalized and less opinionated than the stuff I've been getting from the woman...
  7. Sunday

    Comment by 'Sunday' in ':( useless doctors .. anyone interested in a drug trade'

    I so sympathize with your frustration. About sleep: I live in a state that allows medical marijuana, thank god for that as it is the only way I get any sleep. I know this from many many nights of trying to sleep without it and getting a white night. I use an oil preparation, ingested. It is...
  8. Sunday

    Arm/Shoulder Pain

    I've had similar pain, though not exactly as described. Best thing for it was to go to a local Tuei Na practitioner (a form of acupressure). I would also try acupuncture if she wasn't so good; I use acupuncture for other things. Also, Myoflex (topical aspirin cream) and going under a heat lamp...
  9. Sunday

    Need for Quietness and Solitude - are these typical CFS/ME symptoms?

    Well Klutzo, I am reading this thread...after a long absence from the forum. I'm not online much these days due to the rest of my life (or in some cases due to a lack of life). So I have heard recently from a friend who went to Dr. Cheney. He is convinced that it is a retrovirus, not XMRV but...
  10. Sunday

    B-12 - The Hidden Story

    Lena, good to hear from you. I have not been well lately, partly due to moving, so I haven't been online much. But I have just had a very exciting discussion with a patient of Dr. Cheney's. I'm going to be posting more about this: it's very exciting and hopeful for us. What you may want to...
  11. Sunday

    ARSENIC in Rice, rice milk, rice cakes...

    Not good news, but useful news. Thanks.
  12. Sunday

    Speak to me, my Gastroparesis friends!!!

    You might try Swedish Bitters. In this country, mostly the brand is NatureWorks. It's an old recipe, popularized by Maria Treben, and it's specifically geared to digestion, liver, and microcirculation. (It's also great applied topically, including as a compress for painful internal organs.) I...
  13. Sunday

    Spiritual Pragmatism and CFS

    Thanks for sharing this, Wayne, as well as all the other thoughtful info you put out there. And as far as being sane, well, don't take this the wrong way, but you also strike me as eminently sane. :winking: I had the same experience with the Christianity I was raised in - I liked the things...
  14. Sunday

    Salt Caves

    Victoria, about the Celtic sea salt: my understanding is that they don't refine it so much, so it is "dirty" because it is more in its natural state, instead of being bleached (which they claim removes minerals, and they may well be right).
  15. Sunday

    My Prof De Meirleir patient experience...

    While I know glutamine works a treat for some of us, I also know that others of us get sent down the chute by taking it, because it can mess up our already messed-up methylation even more. Just something to be aware of. Glutamine precursors, too, like NAC.
  16. Sunday

    Dr Teitelbaum & LDN

    From what I have seen on this thread, I would not advise going to Teitelbaum. I do think he says some useful stuff, but it's all mixed up as those above have said: he conflates CFS with adrenal and other kinds of fatigue, and, more importantly, he promises a cure he can't offer to people who...
  17. Sunday

    Anyone need a supplement?

    Great idea, Spitfire, I hope you have started a supplements-trading trend! Heaven knows we never know if a supplement is going to be The Answer or if it's going to knock us to the floor - until we try.
  18. Sunday

    Article: Post-Exertional Malaise: Perception and Reality By Jennifer M. Spotila, J.D

    Thanks for the slide - it's really nice to have something to show friends who wonder why I don't exercise my troubles away. And I agree about the different courses of disease onset - it is interesting. Also difficult, looking back, to know exactly which signs were the actual onset. I count PEM...
  19. Sunday

    Easy Solution to Treat CFS - Dr. Oz

    I've been off this forum a lot lately due to feeling like crap, so I was really glad Dreambirdie PMed me and brought my attention to this. I've enjoyed reading the other letters; you're right, this IS like a civil rights movement, I think. Here's mine: Dear Dr. Oz, I've been impressed by your...
  20. Sunday

    CFS turned my spiritual life, and my church world, upside down

    Boy, I so understand that feeling of really really not being happy about having to suffer in order to grow. I think I have enough character, thank you. All I will say is that my understanding is that the divine force, whatever you want to call it, doesn't want us to push: not ourselves, not...
  21. Sunday

    My New CFS Video--CFS Patients Address the CDC

    DB, I've been down for the count, but just wanted to add my thanks and congrats. Writing is good, but it seems as if video is much more approachable to many people. Thanks for doing a great job with this - as others have said, succinct and atmospheric.
  22. Sunday

    B-12 - The Hidden Story

    Lena, I'm holding you in my thoughts and I want to hear about how things are going for you.
  23. Sunday

    B-12 - The Hidden Story

    Tal, All I've got to say is that the whole deal is yes, very very complicated, but so is this disease. It would not take much reading on this thread to know that for those of us who added things one at a time and a bit by bit, well, we get to know what the effects of a thing are. And it would...
  24. Sunday

    Pacific Fatigue Lab results

    Thanks for this useful piece of info, patsdancin.
  25. Sunday

    B-12 - The Hidden Story

    Lena, I know how discouraging it is to dip just when you think you've gotten somewhere. And as a Lymie friend of mine says, when I'm detoxing, all the bad emotions come up; I think that applies to our flareups, too. But be of good cheer, there could be a lot of reasons this is happening, and...
  26. Sunday

    Accountant for Disability income taxes?

    It used to be that if you were a contract worker and got paid in lump sums, you could spread the income out over a number of years, I think it was five. I know about this because it applies to writers who work for years on a book, then sell it and get an advance. I'm not sure if this is still...
  27. Sunday

    Bemer 3000

    dotidoityuma, I hope you will come back on and tell more. I'm getting educated by everyone's experience on the Bemer.
  28. Sunday

    TCM (Traditional Chinese Medicine)

    Good luck, Jody!:Retro cool::Retro biggrin::Retro eek::tear::sofa::cheeky grin::victory: (this is an emoticon depiction of your writing process)
  29. Sunday

    TCM (Traditional Chinese Medicine)

    DB, thanks for the tips. I will say for myself that moxa is too strong for me, at least at this point, but there are other ways to stimulate the points you mentioned, and the other tips sound good too. Glenp, I've read about congee in books but never knew what it was. Useful recipe for those...
  30. Sunday

    B-12 - The Hidden Story

    If it's the B12s that are giving you the trouble, just taking the lozenge out of your mouth will stop the reactions. And Joseph, I think your list is an excellent idea. You're right, when I'm crashing my emotions blot out a lot, including hope.