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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. Tree

    Co EnzymeQ-10 for the Repair of Cell Mitochondria

    I've taken ubiquinol and the original form, and not noticed any difference between the two. Lately, I've been taking ubiquinol because I fell for the "more easily absorbed" line. I take it at the same time as my fish oil at night, and E and A&D, and I take it with either a little olive oil or...
  2. Tree

    My recovery story

    Ian, what was the surgery like? I've been wondering what the surgery itself is like -- length of time, whether or not local anesthetic is all that is needed, how long the surgery lasts, recovery time afterward, etc. How does it compare, in trauma, to an extraction? It's so great to hear about...
  3. Tree

    Should I take antidepressants? Please give your opinion

    I just want to second and third the idea that's been given here about the antibiotics causing the lethargy, fatigue, depressed feeling. After years of scrupulously avoiding pharmaceuticals, this year I had to take antibiotics on two occasions. Both were potentially life-threatening...
  4. Tree

    My recovery story

    Cavitation surgery near NYC Hi Recovery Soon, I feel for your ordeal...I understand not being thrilled about the possibility of more expense, surgery, etc. When you mentioned not being able to find anyone in NYC, I remembered that when I was researching cavitation surgery a few weeks ago...
  5. Tree

    My recovery story

    Wayne, that's quite a story with your root canaled tooth! So glad that you got that sucker taken out and have experienced some improvement since then. I've had a couple of root canals, and I definetly lean toward the "they're toxic" side on this. My first root canal failed about a year...
  6. Tree

    Exercising with an oxygen mask... fabulous!

    Hi, happy Christmas, everyone! I've been reading this thread with interest. So glad that people have been finding improvements and relief with oxygen, and just wanted to put in my two cents. I've been using an oxygen concentrator by prescription for about four months, and it has really...
  7. Tree

    Biotoxin/Mold Illness

    Thanks, soulfeast and Wayne -- Soulfeast, glad I didn't hijack things too much...these discussions sometimes meander into interesting and unplanned territory. I know I learned a lot from this particular thread, and I thank you and everyone else who contributed. Wayne, I'll be reading...
  8. Tree

    Biotoxin/Mold Illness

    Agreed! Well said, Jen. And with that, I am now going to bow out and get back to some serious non-computer/resting time. It's been great reading everyone's posts and joining in a bit. Hope my posts didn't hijack the thread too much from its original intent, or add too much mud to the mud...
  9. Tree

    Biotoxin/Mold Illness

    JenBooks, thank you for your thoughts. I agree that we are all individual and what is good for one of us is not necessarily so for the others. And true, there are many illnesses with similar symptoms and different primary causes. When I refer to "this illness" it is just in reference to...
  10. Tree

    Biotoxin/Mold Illness

    Wayne, I wanted to thank you for such a thoughtful and helpful post. I could well relate to a lot of what you wrote about the things that set us up for falling prey to ME/CFS - the cigarette smoke exposure in childhood (how many thousands of toxins in each one? Yikes!) And the vaccinations - I...
  11. Tree

    Biotoxin/Mold Illness

    Complete misunderstanding Lisa, I'm sorry that your reading of my post apparently gave you the wrong impression about my level of functioning being normal or moderate or thereabouts. It wasn't my intention with my post to give an account of my medical ups and downs in the 25 years I've had this...
  12. Tree

    Biotoxin/Mold Illness

    Mold didn't make me sick Dreambirdie, mold isn't what set off my illness, either. It certainly exacerbates things now that I am sick, but I had no mold in my environment in Albuquerque in 1985, and didn't even show any sensitivity to it when tested back then. I don't doubt the extreme and...
  13. Tree

    Biotoxin/Mold Illness

    it's the indoors AND the outdoors I've read this thread with a great deal of interest, because like so many of us here, I have struggled to find the right geographic location AND a dwelling that won't kill me. And I've lived in many of the places mentioned in the thread. My two cents worth...
  14. Tree

    Telling the Truth: Who Does?

    I wonder if it could be a matter of how for some of us, the illness itself has led to less-than-transparent communication. I was an open-book and very verbal person all of my life before falling ill in 1985. The misperceptions and judgments surrounding the illness led me, over time, to become...
  15. Tree

    Easy Solution to Treat CFS - Dr. Oz

    Thanks, femmgrrl! I'm glad you sent a letter, too!
  16. Tree

    Easy Solution to Treat CFS - Dr. Oz

    My remarks to Oz Thanks to Wayne for bringing the GMA show to our attention, and to Cort for his continued hosting of this forum where we can all find information and support. And to Dreambirdie -- huge thanks for your continual activism on our behalf, and most of all, for urging everyone to...
  17. Tree

    My New CFS Video--CFS Patients Address the CDC

    What a compelling video, dreambirdie! Thank you for creating such a powerful statement, with so much clear information. I'm going to send the link to your video to my senators and congresswoman. Just will start sending it around. We should get this OUT THERE! It deserves to be seen far and wide...
  18. Tree

    Buddhism & CFS

    I've never taken formal vows, but began reading in Buddhism when I first got hit by the CFS truck in 1985. This thread is so interesting! What I found in the teachings were a way to handle things better, sometimes. And gradually I learned to not worry about the times I didn't handle things...
  19. Tree

    What do you do when you crash?

    Your art is such pure expression, db! The rage of the last one just moves off the page and can be felt. I found myself captured by Not Just Exhaustion, and the way in which you show the melted-down state we've all experienced - that face has so much going on in there! The very first painting...
  20. Tree

    FLASH: CDC/NIH using Wichita, Georgia samples

    link to CFSAC page Neilk, we are watching this live. Go to this page of the CFSAC site, and on the right, click on the link to watch. You will have to download realplayer. Let me know if that doesn't take you to it, I will find you another link. http://www.hhs.gov/advcomcfs/index.html oh...
  21. Tree

    FLASH: CDC/NIH using Wichita, Georgia samples

    What Annette Whittemore said was so moving. It was a beautiful statement, and very powerful at the end when she honored those who have died, including by suicide, before they could be helped by this important work. Bravo to the chair who used his authority to make sure she got a chance to...
  22. Tree

    how to pronounce 'xand'

    pardon my brain blip I wasn't thinking straight (a common occurrence for me!) when I posted earlier about calling it XIV. That wouldn't make sense. XMRV is the retrovirus, as is HIV. What we're looking for, and what XAND would be, is a name that would describe the illness that results from the...
  23. Tree

    Those who do not feel this love...

    Trungpa I can just see those men in suits doing Trungpa's bidding. Gurus often have an entourage, don't they? Wow, sounds like very strange and wild times around Naropa in those years. The Merwin incident was the death knell, if you ask me. I think Merwin, or maybe it was someone else, later...
  24. Tree

    Those who do not feel this love...

    Bly and Trungpa Wow, dreambirdie, you were there on that legendary night? Word of those events traveled far and wide. Very interesting to have witnessed it, I'm sure! I can only imagine the intensity of the energy in that room. Amazing that Bly was able to stay so centered, but then again, he...
  25. Tree

    how to pronounce 'xand'

    I've gone back and forth between "ex-and" and "zand." Personally leaning toward "ex-and" at the moment. Spelling out the letters, as in HIV, would be good, except that spelling out X-A-N-D seems cumbersome to me and doesn't exactly roll off the tongue. I kind of wish the new name was X-I-V...
  26. Tree

    Bruised feeling along spinal cord

    thanks Hi ChronicallyFatigued. Thanks for your answer. You know, that's a thought, maybe they are tender points. They seemed different from the tender points I have elsewhere, which are more like the classic FM tender points. But maybe the location accounts for the different feeling. Wayne...
  27. Tree

    Bruised feeling along spinal cord

    The first few years I was sick, beginning in 1985, I often felt like my spine was bruised. If I pushed on the area right next to either side of my spine, it felt the way a bruise feels...painful, tender, and kind of mushy, if you know what I mean. This feeling went the entire length of my spine...
  28. Tree

    Those who do not feel this love...

    ahhhhhh Koan, that video is balm for my given-up-on brain. Yes, who would ever think of putting fan dancers with Rumi? I'm swaying with fans in another world... Dreambirdie, what an amazing experience it must have been to meet and read with Bly. His book "Leaping Poetry" changed my life in...