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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. SeaShel

    geneticgenie progress for interpretation fo 23andMe results

    Thank you for enabling the Detox program, kday. I had no red cells (plenty of yellow though) on that analysis, versus all the red ones on the methylation. I will go check out Promethease on your recommendation. Thanks again for all your work and assistance!
  2. SeaShel

    XMRV Link Gives False Hope for CFS

    I am struck by the hubris of this: Followed by this: Will you substantiate that? Shelley
  3. SeaShel

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

    I was thinking H-grad (like college 'grad'), but Hagrid would be much more fun to say. But then we go from the despised f word to a warm fuzzy kooky character, so I don't know about that Otis. But you did make me smile on a bad day, so thanks! Exciting news, thanks for sharing Rich! Shelley
  4. SeaShel

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

    I took "highly connected" to mean that we are connected in a meaningful way, that there is lots of interaction among us. As in, he might have perused this forum and other blogs besides Hillary's and has seen the sheer numbers of members and threads. Even a cursory glance here on PR would show...
  5. SeaShel

    big new post from Hillary Johnson

    It's gone again, and I stupidly didn't copy it earlier. But Hillary does state on the website that she does not give permission to repost. Shelley
  6. SeaShel

    big new post from Hillary Johnson

    The post we're talking about on this thread is back up. Shelley
  7. SeaShel

    The WPI Story

    Muffin - a few of us have shared some measles experiences on the huge FDA/NIH thread. Start at #653 and you can get the jist of it, if interested. Before I saw this post of yours, was thinking maybe we should start a measles thread and not hijack the other. It's yet another possible piece...
  8. SeaShel

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

    Hi again Alex - I didn't clarify, but that's what I meant by being given an unnecessary measles vaccine. I had the measles as a child. My mom wrote all my childhood illnesses on my birth certificate. I remember having them. When I was pregnant with my only child, I was told I did not have...
  9. SeaShel

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

    Alex, the rushing a vaccine thing is one of my bigger fears. I feel that an unnecessary measles vaccine triggered me from something resembling remission to full blown never-return-to-work-or-semblance-of-former-life state of being. If it bears out that some (im)perfect storm of...
  10. SeaShel

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

    I just started a thread in the Action! Alerts and Advocacy section about tee shirt fundraising ideas for anyone that's interested. And now, back to our regularly scheduled programming..... Shelley
  11. SeaShel

    T Shirt Ideas for Fundraising

    On the now quite lengthy thread of the "FDA and NIH confirm WPI findings.." some tee shirt ideas started to be bandied about, and I thought it might make sense to start a separate thread for those ideas. We have so many talented and creative folks here, I imagine we can come up with some great...
  12. SeaShel

    Plea from Dr Bell to donate to the WPI

    I've sent $75 since Dr Bell asked, and set up a recurring monthly donation. Hope I didn't double post, first one not showing. Thanks so much, Andrew. Shelley
  13. SeaShel

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

    Adam, you never fail to make me smile, if not outright laugh out loud. I thank you for that! Shelley
  14. SeaShel

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

    What CFS since 1998 said. I knew someone's brain would be working better than mine.
  15. SeaShel

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

    If you follow that page at all, it doesn't strain credulity. Andrea posts 90% or more of the posts. Oftentimes you can tell how poorly she's feeling by the typos and content of the post, so you know it's Andrea. I'm not making my case well at all, maybe someone else will chime in, but really...
  16. SeaShel

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

    It's not a WPI leak in any way, shape or form. They simply posted the link to the press release from the Netherlands. Shelley
  17. SeaShel

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

    Yeah, but wasn't Watergate a leak, too? ;-) Shelley
  18. SeaShel

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

    I find a perverse sense of satisfaction/revenge/neener-neener-ness that the Netherlands scooped this news. How much longer was the NIH and FDA going to sit on it?! Shelley
  19. SeaShel

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

    OMG - FINALLY!!! Just saw it on FB and popped over here to do the happy dance. Shelley
  20. SeaShel

    doctor in Tucson or Albuquerque

    I've been in Tucson the last 7 years and AZ all my life, and a good doctor for me/cfs is about as common as a unicorn in these parts. The one good one I knew of retired and no one took over his practice. I hear good things about Dr Puca, but the sporadic times I've called, he's not accepting...
  21. SeaShel

    Dr. Komaroff say's CFIDS/ME is neurological.

    Too many years ago now, I remember posting on whichever support board I was on at the time something to the effect of 'oh boy, aren't all those God complex neurologists gonna have a fit when all of us PWC's start filling their waiting rooms'. (whew, run on sentence, sorry). I think that's when...
  22. SeaShel

    Comment by 'SeaShel' in 'Letter to a Friend'

    Hi Lisa, I'm glad you were brave enough and willing to put yourself "out there" to your friend, and that she is a friend that can handle it. I too wish there was something I could do for you. Somewhere I wish there was a high school or college class that would build you even one of those...
  23. SeaShel

    5th Invest in ME/CFS Conference - Programme May 24 2010

    I was feeling a wee bit embarrassed to be in Dr Huber's HERV K18 study after reading through this thread. Thanks Kurt, Adam and Cort for giving me another perspective to consider. That is in no way to take away from all of the very helpful and illuminating discussion here, and I am *very*...
  24. SeaShel

    Dr Klimas Recent Lecture ME Awareness Day (+ve XMRV paper coming)

    Thanks so much Parvo and dsdmom. Just received an order from iherb this week, looks like I jumped the gun ;-) On their website, there isn't a 60mg dosage. I wonder if she misspoke and meant 50? Shelley
  25. SeaShel

    Dr Klimas Recent Lecture ME Awareness Day (+ve XMRV paper coming)

    Can someone tell me what dosage of ubiquinol Dr. Klimas recommends? Thanks! Shelley
  26. SeaShel

    Watch CFSAC meeting online Monday 9-4 EST May 10

    Ack! Justin didn't get his turn to speak!
  27. SeaShel

    Watch CFSAC meeting online Monday 9-4 EST May 10

    Sasha - I think that's a great plan, to leave your feed going even if you're not viewing consistently. If it's about numbers, that's one thing we can do - give them numbers. Just don't expect us to have the money or energy to get to DC! I would doubt they look at YouTube views. Shelley
  28. SeaShel

    Is it time to take the pledge to NOT donate blood?

    I totally get where you're coming from srmny. We need to figure out a way to REALLY get some attention. Something that we can actually physically do, and therein lies the problem. Is there a National Donate Blood Day? The thought that popped into my head (so I have not fleshed this out...
  29. SeaShel

    The 'Optimize Dr. Bateman's Research' Fundraiser

    Great to hear! Thanks so much, Shane. With everything else going on right now (I live in AZ, 'nuff said! and my only child left for Army Basic Training a couple of weeks ago), it is SO nice to have something positive and exciting to be following. That living vicariously thing...... No...
  30. SeaShel

    The 'Optimize Dr. Bateman's Research' Fundraiser

    Would it be asking too much (and I'm asking with sincerity, not snark - don't want to be misunderstood!) to have some periodic updates on this project? Don't want to over burden CBS, but it would be fun and interesting to know how things are progressing. Something along the lines of...