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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. fresh_eyes

    Help Turn Phoenix Rising into a Non-Profit Organization

    Great idea, Cort. One easy way to get nonprofit status is to apply for a fiscal sponsorship: http://nonprofit.about.com/od/glossary/g/fiscalsponsor.htm It's a good intermediate step if you're not ready to assemble a board of directors, etc. I had one for a while for some community art...
  2. fresh_eyes

    Design a Brochure

    Hey y'all, sorry I haven't been around much. Hi Teej, especially! :smiley-hug::smiley-hug::smiley-hug: And thanks to Tammie for bumping this thread. :smiley-hug: I *don't* have any special way to get stuff printed, though printing is fairly affordable (say, $150 for 2000, ish) - it's getting...
  3. fresh_eyes

    XMRV CFS UK study #II

    Science Now commentary on this research: http://news.sciencemag.org/sciencenow/2010/02/new-challenge-to-chronic-fatigue-virus.html
  4. fresh_eyes

    XMRV CFS UK study #II

    ERV weighs in: http://scienceblogs.com/erv/2010/02/xmrv_and_chronic_fatigue_syndr_9.php#more (FYI, not too offensive, by ERV standards.)
  5. fresh_eyes

    XMRV CFS UK study #II

    *Cue western music, blows smoke from gun barrel.* :winking:
  6. fresh_eyes

    XMRV CFS UK study #II

    Thanks for posting the link to Dr Vernon's response, Jennie. It concludes:
  7. fresh_eyes

    XMRV CFS UK study #II

    I guess you're right, lisag - it would be an improvement. Just not as much of an improvement as I'm hoping for (clear diagnosis, clear treatment, covered by insurance, etc.). Well, I can dream!
  8. fresh_eyes

    XMRV CFS UK study #II

    Hi Julius. But if the labs involved got different results on the exact same samples, then they could get to work (collaboratively) on figuring out why. So I think it would represent an important step toward resolution. I'd hate to see XMRV go the way of Lyme, where only certain (possibly...
  9. fresh_eyes

    XMRV CFS UK study #II

    Stanford & Columbia, though I don't think they've started yet. The main one I'm waiting for is the HHS XMRV task force. (Hi George! Good doggie!)
  10. fresh_eyes

    XMRV CFS UK study #II

    Yes. Or an even easier solution, as suggested by Dr R at the Virology blog: the authors of the conflicting studies could simply exchange samples they've already tested. I see no reason for the WPI and the Kerr group not to go ahead and do this, considering that both are "on our side," as it...
  11. fresh_eyes

    the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

    Hey all. Sorry for going MIA, y'all know how it is. I so appreciate folks keeping tabs on this topic - wish I had the brainpower to formulate an opinion on the proposed content, but I just don't right now. Thought you guys might like to check out this article, about the controversy over the DSM...
  12. fresh_eyes

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Thanks for the tip, Sing - I will look into him. Also interesting about your various diagnoses. :Retro biggrin: I know, right? Can't win with the names. 'The problem is me, me, ME!'
  13. fresh_eyes

    news: maker of Ampligen gives grant to IACFSME to develop CFS clinical guidelines

    Yes - hopefully this is what it will amount to, making the Canadian guidelines more user-friendly.
  14. fresh_eyes

    news: maker of Ampligen gives grant to IACFSME to develop CFS clinical guidelines

    Glad to give you some good news, Shane. This totally fits with your mission re the cohorts, doesn't it? Now back to resting, you! :sofa:
  15. fresh_eyes

    news: maker of Ampligen gives grant to IACFSME to develop CFS clinical guidelines

    From the CAA's Facebook wall: This seems like really good news to me, too. If the clinical guidelines are going to get firmed up, these are the folks to do it. (Also it seems this means Ampligen is not DOA as some thought, huh??)
  16. fresh_eyes

    news: maker of Ampligen gives grant to IACFSME to develop CFS clinical guidelines

    http://money.cnn.com/news/newsfeeds/articles/globenewswire/181929.htm
  17. fresh_eyes

    Is getting well about money????

    @ Dr Yes: Your post was a bit of a wake-up call for me. Thanks for reminding me how good I have it. I don't have any insurance or any medical care to speak of, but I'm not bedbound and I have a partner and own a home. My heart goes out to everyone in situations where survival is precarious. It's...
  18. fresh_eyes

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Thanks very much for your input, Dr. Yes. Got that link fixed! It does indeed say that on Medscape, and it's not an Oxford Criteria type workup that I can tell, for example this bit: I wonder where Dr. Burke A Cunha, MD, Professor of Medicine, State University of New York School of Medicine...
  19. fresh_eyes

    Is low white blood count (leukopenia) really exclusionary for CFS?

    That's what I've been thinking as well, Martlet - maybe retest in a couple months. Though it's not a sudden drop, it's been creeping down for years, so I wouldn't be surprised if it remains low. @ liverock: Thanks for posting that, very interesting.
  20. fresh_eyes

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Thanks, Sing. It also fits with the big picture for me, I think - not low temp. etc. but do I get every bug that goes around. Plus I just feel like I have a chronic viral infection, which can cause leukopenia (I'm just learning) not by the body making fewer white cells but rather using them up...
  21. fresh_eyes

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Thanks for your input, Jenny & jackie. So I guess what I'm seeing is that it likely means I have *something else* (eg Lyme, EBV?) in addition to 'CFS'. Hmmmm....
  22. fresh_eyes

    Is low white blood count (leukopenia) really exclusionary for CFS?

    Hi folks. I wanted to bounce this off y'all. Over the years my white count has been declining, and now it's officially gone over from low-normal to low, aka leukopenia (3.9). In the medscape workup for cfs http://emedicine.medscape.com/article/235980-diagnosis, they specifically mention that...
  23. fresh_eyes

    more XMRV positives from Dr Cheney

    I wonder if it's because Cheney's patients more closely match the original Science cohort? What a rollercoaster this all is!
  24. fresh_eyes

    more XMRV positives from Dr Cheney

    From one of the slides in Dr. Bell's presentation the other day (#14): http://www.chronicfatiguetreatments.com/wordpress/treatments/xmrv-dr-david-bell/ Wow.
  25. fresh_eyes

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

    Hi Kelly, welcome. Much of what you say makes sense, but you lost me here: I'd venture to say that everyone with a decent education is aware that competing interests - in any arena - include ideology. The notion that this is not the case for journalists just doesn't make any sense.
  26. fresh_eyes

    XMRV Replication Studies

    "aplazado hasta nuevo aviso por dificultades de reproduccin de la tcnica utilizada en el estudio original" = Postponed until further notice due to difficulties in reproducing the technique used in the original study.
  27. fresh_eyes

    XMRV Replication Studies

    I agree, Esther. :Retro frown: More info: http://www.institutferran.org/investigacion.htm
  28. fresh_eyes

    Newly refined test from the Whittemore Peterson Institute

    @ parvo and the other optimists on here: Thank you so much for staying positive. :balloons: CJB, that is the best expression I've heard in a while. :Retro biggrin: Kwietsol, thanks for bringing this up. I've see pregnant women with CFS on other fora. Even if XMRV hasn't yet been *proven*...
  29. fresh_eyes

    The Fight is on...Imperial College XMRV Study

    I agree with you on this, flex. Looking into the whole DSM-V thing, I got a glimpse of an Orwellian future where everyone is on mandatory psych meds. It's bigger than just CFS. That said, I also agree with those who think it wise to tone down the rhetoric on here. Unfortunately, the burden is...