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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. creekfeet

    Sock It To ME

    I'm sorry, the project is all packed up and shipped off. I think the socks are in Spain or Italy. Maybe we can revive it some day, if we get some well peoples' help. Thanks!
  2. creekfeet

    Sock It To ME

    Update! Efforts are underway to send the socks to the WHO meeting in Geneva in March, and then on to the MECFSAC spring meeting. So please make your sock and send it in as soon as you can, so your sock can make the trip.
  3. creekfeet

    NeuroField?

    It sure sounds like it does do something. Anyone noticed long-term benefits or side-effects yet?
  4. creekfeet

    Article: Corinnes FOLLOW-UP APPOINTMENT WITH DR. PETERSON

    I'm so grateful for this entire series of articles. I can't really read through very well these days but still scanning it really helps me understand not only names of tests and symptoms but what the experience would entail, of going to a thorough specialty clinic. It sounds like you've been...
  5. creekfeet

    All the different test's, can we list them?

    My kid's doctor is willing to see how many more tests (than the standard ones eliminating suspicion of thyroid trouble or mono spot etc) she can get approved for him. So I thought for a few minutes that what I would do was compile a list of tests, with next to each test a list of the specialist...
  6. creekfeet

    From the 1st annual XMRV conference

    No way I can catch up with or follow discussion, still having major cognitive interference, but just want to say I caught all I could, thanks George for the notes you took, and I personally feel very hopeful about the potential for antiretrovirals no matter how some people try to obfuscate and...
  7. creekfeet

    Let's Celebrate WPI's New Home at the University of Nevada!

    I sent a short note to be included in the book. I'm not up to a lot of writing lately (and even less reading so forgive my not getting current with the posts on this or any other thread) but I did manage to express briefly my thrill over the upcoming opening and gratitude to all who made it...
  8. creekfeet

    News from WPI symposium: Name change to be proposed for XMRV

    That certainly seems more than an implication but a direct statement that Lyme is related somehow to HGRV. Else, why would he say it should be of concern to patients with chronic Lyme?
  9. creekfeet

    News from WPI symposium: Name change to be proposed for XMRV

    I'd agree with those who suggest we pronounce it "haggard." But what I'd really prefer is that it be called Mikovits' Disease.
  10. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    Sorry, I don't know where exactly he said it. I tried to listen for it but didn't catch it myself when I listened to the podcast. Anyhow I know he mentioned it because someone else heard it too, and she shortly thereafter from WPI people that the symposium will happen soon but that it is...
  11. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    Just added link to podcast on original post. Mike Hillerby does a fabulous job.
  12. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    WPI Grand Opening Aug 21 Also though we can't go to symposium we can (any able to get there) go to the public grand opening on Aug 21.
  13. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    "Erwine" is correct. Thanks all for joining in. Also we should watch WPI site for news of an international symposium there in Reno, in a couple weeks. Worldwide top scientists by invitation only attending. Hope some good news might come out of that!
  14. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    They also talked about the blood supply, and about the importance of learning how XMRV is transmitted. I wrote to ask that a podcast be made available. More people want to write with that request? Radio stations take such letters seriously and keep them on file especially if they are thanked...
  15. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    It's a wonderful thing, streaming radio online, worldwide. Yeah! I missed the beginning of the show but caught nearly the entire last half-hour. Dan Erwine of Nevada Newsline interviewed the WPI's VP, Mike Hillerby. He covered the basics we all know about association of XMRV with CFS, failure...
  16. creekfeet

    WPI Vice Pres Interview on Radio KUNR

    http://www.kunr.org/ Sorry I can't seem to edit the title. The show is over now but it was on on 6 August. Podcast now up: http://www.publicbroadcasting.net/kunr/news.newsmain/article/1/0/1685395/Nevada.Newsline/Chronic.Fatigue
  17. creekfeet

    Military activist testifies to VA on ME/CFS, XMRV, FM and the need for research.

    In her 25 Action Items presented to the VA committee day before yesterday, Major Denise Nichols cites ME/CFS, Fibromyalgia, Gulf War Illness and the need for XMRV research. http://www.veteranstoday.com/2010/07/28/twenty-five-action-items-to-assist-gulf-war-veterans/
  18. creekfeet

    Nevada politics

    Guinn was a Republican but such a centrist, he was sometimes called "RINO" (Republican In Name Only.) So he's an ideal bipartisan. I forget what, but early in his first term he named a building after a Democrat. Wikipedia says "Prior to leaving office, he enjoyed an approval rating of 66%...
  19. creekfeet

    Deadline 19 July: email FDA Blood Committee!

    Ask friends to shoot off an email, too!
  20. creekfeet

    Comment by 'creekfeet' in 'XMRV at the Fed: Conspiracy or Confusion?'

    One scenario: three govt agencies with two different findings, the CDC has botched it again clearly but wants to save face, so the higher-ups in govt health decide, let the CDC paper be published first, allow a little cooling off time, then release the NIH/FDA paper and the CDC can say, "Oh my...
  21. creekfeet

    Post-mental-exertion malaise

    I'm becoming more and more aware that I have to conserve not only my physical resources but my mental and emotional resources. ALL types of exertion wipe me out.
  22. creekfeet

    Sock It To ME

    The socks are still coming in! We have I think over 25 now. If that seems few don't worry: we know it'll take time for us sickies to make sockies. I'm still in the planning stages on mine and my kids'!
  23. creekfeet

    Deadline 19 July: email FDA Blood Committee!

    Thanks all who are writing. We've got a whole 'nother day to submit public comment, be it ever so brief!
  24. creekfeet

    Deadline 19 July: email FDA Blood Committee!

    Also I sent copies to my senators, a list of press contacts, and posted on my FB notes.
  25. creekfeet

    Deadline 19 July: email FDA Blood Committee!

    BEen too sick to get this out quicker, sorry, I've known a few days. Shoot them an email even if it's one sentence: "Keep XMRV out of the blood supply!" Also sorry if this duplicates something someone else already posted. Too sick to read but managed to write today. emails can be sent to BOTH...
  26. creekfeet

    Flying and vacation

    I think there might be a longer thread on the topic of flying with ME somewhere but I can't find it. Anyone have anything to add to the suggestions above? I have to fly sometime this month because of a family emergency and want to prepare myself as well as possible. I'll be on my own. One...
  27. creekfeet

    Sock It To ME

    Hoping we'll get enough socks this summer to line up some displays in the autumn! Oh yeah, for those of you in the southern hemisphere, I hope we'll get enough socks this winter to line up displays in the spring! Or maybe I should stick to the calendar (same one for us all I hope?) and say I...
  28. creekfeet

    Anyone recovered after discovering residential toxic mold exposure?

    When my kids and I became ill the mold in our then-home was one suspect but blood tests showed it was not the cause of our illness and living for two years in mold-free homes has not cured us so here's one negative answer. Who knows, maybe mold is making you sick, or sickER. But if ya got a...
  29. creekfeet

    Sock It To ME

    Congratulations, frenchtulip! I still haven't made my own socks but no worries, it is an Ongoing Project. I want everyone to know my heart is still in our socks. I'm just not very well since that dratted cyst ruptured: it seems to have taken a lot of wind out of my sails. So I'm taking it...