• Welcome to Phoenix Rising!

    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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Search results

  1. S

    Suffering and spirituality

    I'm currently reading "The Problem of Pain" by C. S. Lewis. He has an interesting point of view on this subject. I also find him just plain pleasant and entertaining to read. It's a great book to listen to in audio format; lends itself exceedingly well to audio particularly if you like a...
  2. S

    Differential diagnosis: Amyloidosis

    Funny you should mention amyloidosis. The neurologist suspects that it could be contributing to my mysterious pain syndrome. I've had ME/CFS since 1995. Both siblings have it (ME/CFS) and so does my daughter. But over the past couple of years I've developed terrible unrelenting pain in the...
  3. S

    CFIDS: THE ITERATION OF X (A breakdown of the Dr. Singh's Study)

    Thank you, eric-s, for articulating my questions so well. I couldn't have said it better. If those patients with positive XMRV serology tests aren't cranking out an antibody response to XMRV but rather something else, then what would that be? Would/could this mystery agent also cause one to...
  4. S

    does anyone feel better when they dont eat?

    I definitely feel much better when I don't eat. This was brought home to me very clearly after undergoing "RnY" gastric bypass surgery in 2004. Beginning about two days after the surgery, while still in the hospital, I was amazed that my symptoms seemed to spontaneously disappear (virtually)...
  5. S

    A crisis center for cfs in NYC

    What a wonderful and noble idea. I hope you have great success with it. I think it would be fantastic if patients and physicians could call a toll-free number and ask for a packet of CURRENT and ACCURATE and RELEVANT information to be sent to them. That same packet that I find myself putting...
  6. S

    Newborn baby in need of prayers

    Sure, will pray immediately. I'll be joining a collective day of fasting tomorrow too, and I'll add little Liberty to the agenda. Psalm 46 God is our refuge and strength, an ever-present help in trouble. 2 Therefore we will not fear, though the earth give way and the mountains fall into...
  7. S

    Infection After Hysterectomy with Cysts Everywhere

    Hi Mya, It sure sounds like you've had one heck of a time. I'm so sorry you've been suffering so badly. Both of my sisters, my daughter and myself have ME/CFS. My eldest sister and my daughter have both had terrible troubles with their reproductive organs involving cysts and things along the...
  8. S

    I do better in the cold!

    Maybe it's because the cold temperature causes our bodies to tend to keep more blood in our 'core' and less in the extremities. Since people with our disease generally have a lower blood volume than 'normies', maybe our brains are enjoying a little more blood and oxygen in them. Just an...
  9. S

    Dr. Mikovits explains why it just cannot be a contamination

    I can't help wondering if any of the researchers who say this whole XMRV thing is a contamination issue would agree to accept blood products from an ME/CFS patient. I would love to see an ME/CFS patient at one of these XMRV conferences offer their blood to the likes of McClure or Stoye. I'm...
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    Dr. Mikovits explains why it just cannot be a contamination

    I agree, Omerbasket, especially since now, in light of the opinions of these 'scientists', some people with ME/CFS (and presumably a retrovirus) might just feel perfectly free to donate blood now that the 'retrovirus scare' is over. Not every person with our disease follows the developments in...
  11. S

    So What are We Doing??? (boing, boing, bounce)

    I'm in, but like Sickofcfs, I'm in a similar slump with my ability to put thoughts on paper in a meaningful way at the moment, but I can certainly use a template or some such device and make it my own for sure. This sounds like a good plan, but I wish we could think of something new as well...
  12. S

    Small Fiber Sensory Neuropathy - Empire/Blue Cross Clinical Recommendations

    Oh Wow, this is going to help me very much. Thank you so much for posting this! Film at eleven.
  13. S

    XMRV and MLVs -- Clarifcation

    I'm no expert by any means but what you have there sounds right to my ears for what it's worth. Thanks for your good work and the extraordinary effort and precious energy you must have to expend to get it done. You're amazing!
  14. S

    Loud Heartbeat in Ear

    I've had tinnitus sense my acute onset in 1995, but lately since I've started on Neurontin (gebapentin), I've had a good deal of trouble with hearing my heartbeat wooshing in my ears. Not particularly enjoyable, if I may say so. I do hope yours subsides very soon. Best, Stone
  15. S

    VIPDx Serology (Antibody) Test Results Yet?

    Yay! I'm glad you finally got your results and the long wait is over. It's interesting to me that many who are reporting results here are positive by culture and negative for antibodies. I myself was just the opposite. I understand that if the virus is at a very low level in your blood that...
  16. S

    Gearing Up for the Big Search for XMRV - WSJ Article

    This quote is a little disturbing: "But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS." I thought we had left "associated with CFS" and were heading for "causes CFS". From what...
  17. S

    Serology Test - Can Someone Please Start a New Poll

    Thanks for asking for a new poll, Lynn. I noticed the same thing and had hoped it would be started over at some point. We won't get a very good picture of who's got what unless we do that, and I think it would be a good idea also if it were clearly explained which poll or polls a person should...
  18. S

    Gearing Up for the Big Search for XMRV - WSJ Article

    What can I say? Doesn't it seem that a year after the Science paper came out that we should be farther along than this? Is it just me? *heavy sigh* I try to stay positive and look at what we have now more than what we still DON'T HAVE but come on already! Will somebody please get me...
  19. S

    The November Factor

    I became ill in mid-September, 1995. I can say for certain that I have come to dread late September through November, as I always feel much worse. The same goes for the springtime, mid March through May are always good for a nasty flare. I attribute it to the big shift in weather patterns, as...
  20. S

    Do you see squiggly bacteria when you look at a blue sky?

    Hi Fejal, I'm wondering how you can distinguish what you're seeing from the normal squiggly floaty things everybody sees when looking at the sky. Are you referring to something that looks entirely different from the normal phenomena? If so, how is what you're seeing different? Also, have...
  21. S

    Wessely awarded research medal from Royal College of Physicians

    It's absolutely incredible that he can be rewarded for garnering the hatred and disdain of virtually every ME/CFS patient in the UK, as well as many of us in the US who stand in solidarity with our friends across the pond in their suffering under the thumb of this diabolical monster. The...
  22. S

    Temazapam?

    Hi, I take Temazepam for sleep, but I'm careful not to take it every night. I alternate it with Tylenol PM which works amazingly well. I also try not to take anything for sleep if I can possibly help it, but if it's say, 1:00 am and I'm still not asleep, I will take something whether I want to...
  23. S

    Known cases of CFS misdiagnosis.

    My eldest sister had CFS for years before I got sick. When I came down with it, she kept telling me it was CFS, but I was in the medical profession and had long since concluded that she was neurotic since all she ever did was complain about how bad she felt, and how no one understood how sick...
  24. S

    Thankfulness!

    I know what you mean Nielk, I do know what you mean. Still, I'm thankful for those who remind us of what beauty there is to be appreciated on days when it's hard to find anything on my own. Thanks, Francelle for sharing your Spring exuberance! I needed a dose. Keep it comin' Stone
  25. S

    VIPDx Serology (Antibody) Test Results Yet?

    Oh boy Francelle! How exciting to be in a study! I've always wanted to participate in one but so far, there hasn't been one in my area yet, and I keep checking in Charlotte and Raleigh at Duke University, but nothing so far. I hope your study does involve XMRV testing. It makes sense that a...
  26. S

    VIPDx Serology (Antibody) Test Results Yet?

    Wow, what a nice thing to say, George. I thought the writing left a lot to be desired, having written it very late at night and my vision was so blurry I couldn't read what I was typing. I'm amazed it makes any sense at all. LOL Anyway, YES!, the timing of the actual running of the serology...
  27. S

    VIPDx Serology (Antibody) Test Results Yet?

    Aww, thanks GG, for your concern. So kind of you to 'watch my back' as well, but I've had a lot of practice with public speaking and I'm quite used to it, and the talk is probably not going to be very long. I think if I'm wheeled in from the parking lot and I sit while speaking I will be fine...
  28. S

    VIPDx Serology (Antibody) Test Results Yet?

    Glad you know now :-) :victory: Wow! What exciting news that you now have reason to hope for treatment, not just for yourself but for your family. This is wonderful. Let me be the first on the forums to congratulate you on your new hope for a bright future. May our hope not be for naught...
  29. S

    Burning on right side of neck and jawline..

    Just a thought, if you can spare the money, you might go ahead and get an XMRV serology test. If it's negative, you can perhaps feel slightly more confident looking for other causes besides CFS, but it won't rule out CFS by any means. If it's positive, you may have an explanation for some of...
  30. S

    VIPDx Serology (Antibody) Test Results Yet?

    Oh heavens! Thank you so much for reminding me to tell him that! Holy cow, what if I had forgotten (as I'm so prone to do)? You saved my cheese, Tina! Now that I think about it, I might actually need my wheelchair since it's probably a considerable distance from the parking lot to where ever...