• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. H

    Doctors in MN?

    skip the headaches I'd skip the headaches and go straight to Lerner in Detroit, probably the closest person who really know what they're doing.
  2. H

    UK Study - Pediatric CFS

    Being on BBC Breakfast is a huge breakthrough. Seriously, the professionals who fight to keep ME in the pysch column must be scrambling today. (Btw, there was no mention of a retrovirus because the study actually wasn't seeking any--just signs of infection.)
  3. H

    UK Science Media Centre, RCP, and press silence on XMRV

    Busted through... The news of the new study on adolescents broke through.... http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884
  4. H

    Article: Exercising Discipline (Ampligen Chronicles)

    That's awesome, Kelvin. I am now doing cardiovascular exercise and can hardly believe it.
  5. H

    Valcyte (plus) Update

    I'll cheer for you! Excellent news. And do you have POTS or OI symptoms? Gatorade and salt intake could help keep you up, too.
  6. H

    big new post from Hillary Johnson

    That might be correct, and it's attractive for its simplicity. If that's true, then it's especially pathetic and deluded of them to have used their bogus pool of subjects when the WPI team elaborated on who their subjects were. Self-deluding, too, to have used collection methods that assured...
  7. H

    big new post from Hillary Johnson

    I share both her theories and the snippets of evidence she and others are getting seem to support them: 1. Its pretty straightforward CDC CYA, and, 2. Its a stalling/diminishing game in light of the huge repercussions confirmation will lead to.
  8. H

    The Hammer - Vistide and Dr. Peterson

    I tested negative according to the first version of the VIPdx test, though I was well into my recovery by the time I got the test. My spouse, though, tested positive, alas. Neither of us have been given the antibody test. I don't hold out much hope that I don't have it.
  9. H

    Nature.com report that Alter paper reviewers want "additional studies"

    Remember that by making extraordinary demands of Lombardi and Mikovits, Science made their paper incredibly water-tight. This could be exactly what happens here. The paper only becomes more of definitive home run that moves this discussion into a new phase and halts the silly negative studies...
  10. H

    CDC XMRV Retrovirology Study on CFS Published

    And all carefully hand-picked by Dr. William Reeves, who essentially promised the study would fail way back in October. Stay classy CDC.
  11. H

    CDC XMRV Retrovirology Study on CFS Published

    In my humble opinion, one thing to consider in all of this is that most folks calling the shots about which paper comes out when, calling for delays until ducks are in a row, etc. etc. believe that so-called "cfs" amounts to a state of being kinda tired (like the folks pictured in a ll the...
  12. H

    CDC XMRV Retrovirology Study on CFS Published

    Buying time until they have a good test for people and the blood supply. Of course the strategy sucks, but they can honestly say that they were simply publishing all pertinent info, even if this isn't a stellar or revealing study. (And very very unfortunate that news media will report this as a...
  13. H

    CDC XMRV Retrovirology Study on CFS Published

    Please take that unethical talk off the forums. The rest of us want nothing to do with infecting kids.
  14. H

    CDC XMRV Retrovirology Study on CFS Published

    And these data do not support the absence of XMRV in the population since the SOLE thing they've shown is that they are incapable of finding XMRV or that it does not exist. Why would the editors allow the half-truth "do not support the existence" statement when my statement above is equally true?
  15. H

    Email - Dr Alter

    Well, we always knew this day was coming (I suspect others within the DHHS saw it coming, too--hence the leaks). We always knew the CDC study would exclude diseased people. Doesn't make it any funner. And it was fun to hope, briefly, that the good-faith study from Alter would precede the CDC one.
  16. H

    CDC XMRV Retrovirology Study on CFS Published

    Will media uncritically report this? Gotta guess the media will simply report (at the very least in headlines) that "the CDC dismisses XMRV-cfs connection." Will the best-case scenario occur and NIH/FDA study come out today, too?
  17. H

    FDA/NIH XMRV paper ON HOLD

    Ding ding ding! And George nails it, for $500. Holy moly. We should actually feel a little sorry for HHS. The CDC has been denying any role for an infectious agent for decades and now this? And the day after the news breaks people will be refusing to accept surgery or blood transfusions, etc...
  18. H

    FDA/NIH findings in Belgian newspaper

    And El Mundo http://www.elmundo.es/elmundosalud/2010/06/28/dolor/1277724239.html This El Mundo story takes for granted that the NIH/FDA paper is real. Meanwhile, a Dr. Beloqui prevaricates about whether or not to take measures to protect the blood supply of Spain because the WPI/FDA/NIH...
  19. H

    The Hammer - Vistide and Dr. Peterson

    Hey, everybody. I was looking at the forum because of the recent news-of-impending-news and it occurred to me that I never gave a final report on my vistide experience. Yes, I'm healthy. I have no weariness whatsoever. No cognitive impairment. No infections of which I'm aware. I am not sick. One...
  20. H

    How Much Compensation are we Due?

    Well, crappy doctors can justifiably say they were just following standard practice across the country and world to attribute CFS to somatization. Case closed. On the other hand, it looks like that will NOT be an excuse after a couple more years of science papers and clinical experience. Then it...
  21. H

    Article: XMRV Confirmation Around the Corner? Journalists Report FDA/NIH Confirm XMRV

    It seems that the conference organizers simply made Alter's Powerpoint presentation publicly available over the web. That seems the only thing on which the Dutch press is based. Oops.
  22. H

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

    Again, here's the link to the actual Powerpoint. You gotta laugh: http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/Web%20Body?OpenFrameSet&Frame=Body&Src=%2Fipfa%2FUpcoming_Events.nsf%2F0%2Fcbfb86b6bbdcc818c12570660 0483652!OpenDocument%26AutoFramed Can we start calling it XAND, yet? Or do we...
  23. H

    Anti-XMRV Blog -New post

    Leave that blogger alone. She's a troubled person.
  24. H

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

    This could very well be, but then I suspect it's a lynchpin which, if eliminated (suppressed), will cause the disorder to unravel. You then go attack secondary infections one-by-one and, god willing, you get better and stay better.
  25. H

    does Ins pay for antivirals??

    Valtrex is less toxic and works against EBV, but I'm not sure about HHV-6.
  26. H

    does Ins pay for antivirals??

    I suppose you're considering Valtrex, too?
  27. H

    Characterization of retroviral and lentiviral vectors pseudotyped with XMRV envelope

    Part of the fun of this abstract is they don't mention the findings in the most important medical science journal in the world that linked (causally, no--but linked) xmrv to CFS. Shocker that, coming out of the Mayo Clinic!
  28. H

    Anti-HIV drugs AZT, tenofovir, and raltegravir may be useful for treatment of XMRV

    I've never seen this distinction as significant as I'd be shocked if treating the XMRV regardless of whether the "real" cause is genetic, etc. etc. doesn't fix the patient.
  29. H

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    This is the real take-home message of the day. This test will change the professional-politcal dynamic of the XMRV era.
  30. H

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    Yep, should be an antibody test. Cool.