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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. G

    Sucking Sensation in Forehead

    Always. A constant companion, this fist that starts in the front of my forehead and pushes back on my brain. It's become an old pal, unwanted as it is.
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    Dr. Alter Paper embargo ends today at 3:00pm, press conference today

    Replay I believe the release references a "replay" two hours after the initial interview; I interpret that to mean in wouldn't interfer with press access so all of us can listen. Hopefully?
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    Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Well, yes, easy to get pissed about Lyme. But there is a test for basic Lyme, and treatment.A one shot deal for most PM's. But when that treatment comes up short, the treatment metric for Lyme is to be metaphorically left to swim in the deep Atlantic till no one hears your plees, and you...
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    News from WPI symposium: Name change to be proposed for XMRV

    LJS, I contracted Lyme twice in less than a year, and was treated with antibiotics for 30 days. I improved for a time, but have deteriorated ever since. Don't know if I am XMRV+, but my guess is that Chronic Lyme is just Lyme amplified by activated XMRV.
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    FDA Just Announced New Plan To Handle New Pandemics

    Saw it in a Reuters report on Yahoo news. Can't figure how to post the link; maybe someone can. Just thought it was very odd timing...http://news.yahoo.com/s/nm/us_flu_usa
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    Do we need a separate thread to discuss the CAA?

    CBS. No. See, in part you are right: The word "ramifications" carries a negative connotation. You were right to have bolded it. To have a fair balance, you should have bolded "- and their respective merit or lack thereof -" for that provides, or at least it was my aim, a disinterested stance...
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    Do we need a separate thread to discuss the CAA?

    Mark, Sickofcfs misinterpreting what I wrote - inferring something I never implied - then posting that error with my name attached is pretty personal too. But that's just being human, and she has the right to speak out in disagreement, even if that position is based on a false belief. Which is...
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    Do we need a separate thread to discuss the CAA?

    See, I'm not sure it really is about wandering off target. If it were, then why not draft a separate thread for all things CDC-related? The answer is the CDC is so integral to so many topics. So too is the CAA. Moreover, it is not merely whether it's convenient for CAA personnel to have a...
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    Do we need a separate thread to discuss the CAA?

    IMO, it won't work, at least not for us. It will become a wastebasket thread, and most likely, the one thread the CAA will shun. Isn't it more important to tie issues to the CAA when and where those issues emerge? Won't isolating an observation about the CAA to a distinct thread take that...
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    Project ENOUGH!!!

    Ok, just gotta figure out how to do that. I'm tech-inept. :)
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    Project ENOUGH!!!

    IMO, it won't work, at least not for us. It will become a wastebasket thread, and most likely, the one thread the CAA will shun. Isn't it more important to tie issues to the CAA when and when those issues emerge? Won't isolating an observation about the CAA to a distinct thread take that...
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    Project ENOUGH!!!

    Cort. They dont check our forum? Is that your position? Jenny aside? If they don't, FIRE THEM!!
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    Project ENOUGH!!!

    Jenny has always acted in a classy manner. As have you.
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    Project ENOUGH!!!

    Well, no. I will not specify as it has already been done in the thread banned and I cannot , well, I cannot. Way too late and tomorrow...That tide is long out to sea. Nor are you a call center from the Philliipines where you refer to a script; rote does have its place, but here, not so much. I...
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    Project ENOUGH!!!

    Cort,, we've never spoken. Your points are always well spoken, well thought-out. The enmity directed at the CAA is neither arbitrary or without merit. Still, you may be right. So. On those points where the CAA can correct its image without jeapordising relationships -as you have I believe...
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    Lack of Detection of XMRV in Seminal Plasma from HIV-1 Infected Men in The Netherland

    "An entire research group..." Ummm, I count less than ten. That "entire" qualifier smacks of hyperbole. Take one strong-willed misguided leader, and you have a research group whose findings could be suspect. In theory. :)
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    Who has got worse as the years roll on?

    I started developing sporadic symptoms, all mild at first, following a bout of Lyme in 2005. The Lyme was treated with antibiotics and cleared up, but I had subtle difficulties driving starting thereafter, and found myself unable to endure lengthy meetings. Each subsequent year I worsened, both...
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    Collected information on James Jones (now the real head of the CDC's CFS program?)

    Jim Jones? Seriously? How appropriate...How many is this one hoping to poison with his BS?
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    Easy Solution to Treat CFS - Dr. Oz

    Oz is all about pandoring to his demographics. I have no energy to spend on how irrelevant the man is to us.
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    I am sorry, but I am at a loss here. Maybe I missed something, and if I did, my bad. But the CAA has funded several studies which demonstrate physical abnormalities in CFS patients. For instance, the study in California this year showcasing the severe effects of PEM. By definition, the CAA's...
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    Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Populat

    Sorry if I missed this earlier, but has the CAA decried this "study"yet? I agree with muffin that we must each speak out with emails, but if our own advocacy organization does not strike back in our name and for our cause and against this sinister nonsense, then I fear our credibility is diminished.
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    Ummm, where is the CAA? Someone must pull them into this...
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    It's not the study, it's the aired results. They have just marginilized us even more. Worse, we know what they are doing. Cant someone call cnn? This is a criminally obvious manipulation of reality. They are playing with us as if we are kids. We need to be pissed!
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    CDC's Updated CDC/CFS Website: 21 July 2010 - CYA Plan for their desperate cover-up!

    No, Sean, they have a superb pr team. They are playing with words, but their sport injurs us. This is a very bad thing. An insulting thing. We are being redefined, and they benefit. But the true ruse lies in their attempt to eschew blame for 25 years of neglect. I can see the collective smirk...
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    Dr. T on the recent controversy

    His blog is a not even thinly veiled sales pitch. He is pandering, and doing so sloppily.
  26. G

    CDC XMRV Retrovirology Study on CFS Published

    bullybeef, why? I mean I understand the need, the urgency. But would there be a govt body that would mandate that? Give the FDA no recourse but to embrace that course? I appreciate the ethics. My concern is the requisite impartial infrastructure that would make it happen.
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    CDC XMRV Retrovirology Study on CFS Published

    George and Otis, thanks to you both. Plot just seems to get nefariouser and nefariouser. Anyone still remember those Greek morality tales? Let's hope there's something to them; but let's not trust too much in that hope.