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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. kwietsol

    From the 1st annual XMRV conference

    Excellent and very helpful post, Mark. I was hoping that someone with more understanding of the issues than I would summarize. Thank you!
  2. kwietsol

    From the 1st annual XMRV conference

    Recovery Soon, It was a beautiful letter. If I were the staffer who sorts his mail, I would be sure that yours got through. Mary
  3. kwietsol

    New York Times Published: July 14, 2010 Delay in Release of Study prompts outcry

    Oh guys, I think he gets it. My guess is that he is a reporter who is willing to fight to get our truth out. As a founding member of the National Lesbian and Gay Journalism Association, I’d guess he has some strong opinions about government suppression of retroviral science and some experience...
  4. kwietsol

    Amy Docker Marcus

    Yay for Dr. P! May he soon get the recognition he so deeply deserves.
  5. kwietsol

    The Independent newspaper - Study that 'solves' chronic fatigue blocked

    Welcome to the Forums, Zerothehero. And thanks for your email to the Independent.
  6. kwietsol

    big new post from Hillary Johnson

    Thanks, Cort. I appreciate your thoughtful reply. It is all so very strange. And now Hillary, at least temporarily, has pulled her story. Stranger and stranger.
  7. kwietsol

    big new post from Hillary Johnson

    Cort -- From your always interesting buzz page: "Instead of the broad ranging conspiracy theory to keep CFS patients down a more likely explanation for the events that have taken place is that everybody thinks they are correct. In this scenario the CDC tests the WPI samples, is unable to...
  8. kwietsol

    That panel of positive control specimens

    Oops, Megan, I didn't see your post about the WSJ. What Megan said.
  9. kwietsol

    That panel of positive control specimens

    John, I bet Amy Marcus at the Wall Street Journal would be very interested in that email. Have you thought of sending it to her? Amy Marcus <Amy.Marcus@wsj.com>
  10. kwietsol

    How's the PR this time?

    Tina, I always get a lot from reading your posts and I think it would be a wonderful thing for our community if you started a blog. As far as I know, no one is blogging from a CFS PR perspective and you, given your knowledge, interest, and skills, would be the perfect person to do it. I'm...
  11. kwietsol

    Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

    Thanks, Sean. For the sake of all those people who need transfusions, I hope the first one is right.
  12. kwietsol

    Blood from a Stone: CAA Dr. Suzanne Vernon's Analysis of CDC Paper

    Let's just say that the prevalence of XMRV is about 4% (which I personally believe to be true) but the prevalence in the blood supply is only .1, as Dr. Vernon states. Dear forum scientists, is there a way both of these "facts" could be accurate? When HIV was unchecked, hemophiliacs were...
  13. kwietsol

    FDA/NIH XMRV paper ON HOLD

    Yes, Dr. Yes! And thank you.
  14. kwietsol

    FDA/NIH XMRV paper ON HOLD

    George, I can't get past thinking the government has a moral obligation to prohibit people from CFS from donating blood. Right now. And they have not. So in that respect at least, I don't think they ARE handling things right.
  15. kwietsol

    FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

    This won't be a worry for long. I don't think we are going to have to worry about this for long. Back in October, one of the XMRV giants (I can't remember which one) said that because of the way XMRV replicates, scientists should be able to develop a vaccine for it relatively quickly. If...
  16. kwietsol

    CDC replication study delayed in order to prepare a press release?!

    vipdx.com is back up. Does anyone see any changes?
  17. kwietsol

    German study finds xmrv

    DysautonomiaXMRV, I am delighted you are back!
  18. kwietsol

    Retrovirus Conference in Prague, April 29-May 4, 2010

    Welcome to the forum, NickUmich. We wish we could give them back to you. But maybe, just maybe, help is on the way.
  19. kwietsol

    Fidelity of target site duplication and sequence preference during XMRV integration

    "Alarming" is good. Hello, world! Time to pay attention!
  20. kwietsol

    WPI Letter to Dr McClure ****

    I do think Dr. Peterson has to be played by someone that we can age over time. Remember how the movie starts -- nineteen-eighties, two government employees horrifically out of their depth, traipsing by gorgeous Lake Tahoe, foreboding but catchy music in the background.... It gives me the shivers.
  21. kwietsol

    WPI Letter to Dr McClure ****

    Not to worry. It is going to be a blockbuster. :victory:
  22. kwietsol

    WPI Letter to Dr McClure ****

    For the film version CFS: The Movie will surely have flashbacks to the younger Dan Peterson, so I say Matt Damon; he has both the brains and the gravitas. (My hunch is Dr. P. would like that choice.)
  23. kwietsol

    How to start out with a new GP? Also, suggestions for Eastern High Sierra?

    Creekfeet, I just sent you a private message.
  24. kwietsol

    The CAA Pamphlet to Educate Doctors

    Wow. Jennie. Thank you so much!
  25. kwietsol

    Dr. Reeves Removed from the CDC's CFS Research Program

    Because Unger is a temporary replacement, it sounds to me like Reeve's transfer was a rush job. If that's true, the rush had to be either to get Reeves INTO the job of Senior Advisor or OUT OF CFS research. I can't believe there was a rush to get him declared Senior Advisor for Mental...
  26. kwietsol

    Help, worried that my husband has now got me/cfs

    That does not sound terrible at all. It would be great for everyone if he does have something -- something that is quickly curable. I'm very sorry about you and two of your kids being sick and I've admired the ways you are coping. Best of luck for getting that husband of yours healthy again!
  27. kwietsol

    An Indefatigable Debate Over Chronic Fatigue Syndrome Science Virology 2010 01 15

    Thank you, Martlet. And thank you, all moderators, for keeping this forum a peaceful, enjoyable place to visit.
  28. kwietsol

    XMRV Positive? What are your symptoms/medical history?

    Super, Kim. Sorry I missed it. And thank you.
  29. kwietsol

    XMRV Positive? What are your symptoms/medical history?

    (Sorry for the self-quote. I'm acting like Wessely. :ashamed: ) Let me make another plea for inclusion of close relatives. I know of a mother/son, both XMRV positive, both with CFS. The mother's brother-in-law died recently of aggressive prostate cancer. I also know of a case that is...