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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. R

    Suspense. Any news on WHEN the NIH/FDA study might come out?

    Yes but with possibly 7 percent of normal controls testing positive with no symptoms. It's anyone's guess who could be carrying this retovirus. I dont' think everyone can be shunned?
  2. R

    Suspense. Any news on WHEN the NIH/FDA study might come out?

    Well let's see if you still need to ask these questions after tomorrow.
  3. R

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

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  4. R

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

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  5. R

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

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  6. R

    Mikovits interview states the FDA will confirm WPI findings in a Sept publication

    Regardless of what anyone wants to say Annette Whittemore, Dr. Judy Mikovits and all involved with WPI are hero's to the ME/CFS community.
  7. R

    Katz webinar on XMRV Coming up on Thursday

    He could have been talking about the Science paper on the 90 percent. Sorry I wished I written down word for word. I don't recall anything about false positives coming up. The 3.7 in healthy controls was from the Science paper I believe. Nothing on recent healthy controls.
  8. R

    Katz webinar on XMRV Coming up on Thursday

    Yes and there's the possibility that getting infected doesn't mean you get sick right away. Look at Hep C people could carry it for 20 years then get sick. And who really knows how long each of us have had the virus if it does turn out to be XMRV. I know my illness was triggered by a virus...
  9. R

    Katz webinar on XMRV Coming up on Thursday

    I bet the answer is already known in some agencies other than the NIH. But that's my guess.
  10. R

    Katz webinar on XMRV Coming up on Thursday

    I think maybe too that west nile has an incubation period and people could donate before showing symptoms. That and most ME/CFS patients are too ill to donate so not a big risk.
  11. R

    Katz webinar on XMRV Coming up on Thursday

    He said WPI is now finding it in 90 percent and has been using multiple tests. I think that's a high number of ME/CFS patients. And yes there is also the broad definition of CFS. Thanks to the CDC. He also said the level of concern is very high. He said what caught the blood groups attention...
  12. R

    Katz webinar on XMRV Coming up on Thursday

    He said because a large number of CFS patients had shown to be positive for XMRV as per the Science paper. That with that high of numbers causality would definately need to be looked at. He also felt that other pathenogens could be involved in other cases.
  13. R

    Katz webinar on XMRV Coming up on Thursday

    He also made reference of it being of a "positive" on the side of WPI. He said the blood group is anxiously awaiting this paper. He thought that an assay test would be available within the next 12 months. When asked about it.
  14. R

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

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  15. R

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    All diseases at one point had no accepted test in the beginning. That's what is called research. That's exactly what happened with MS, Parkinson's, and epilepsy just to name a few. There was no test in the beginning so what did they do? Blame it as being a mental condition and lock people up...
  16. R

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    Yeah well I guess it's not above science blogs either.
  17. R

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    Alan: •You’re entitled to your beliefs. Just try not to step off any balconies. •The comments so far are pretty much what I expected to hear: I’m an idiot, people are suffering, the science is already settled, and a CDC-based conspiracy is suppressing the truth. •Kim, regular TWiV listeners...
  18. R

    Alan Dove responds to his XMRV/CFS/ME critics... from TWIV podcast..

    Unfortunately it's the narrowminded way of thinking that has continued to keep us from getting the medical treatment and correct diagnosis that we all deserve. If doctor's or scientists knew what it was to lay in bed for 20, 10, or even 5 years, they would understand why we get upset. I'm...
  19. R

    Project ENOUGH!!!

    It's not all about the money. My boss worked for major hospitals before this and they compensate very well. Some people actually work to serve the most vulnerable people and don't expect to get rich off it. I believe non-profits are currently being looked at do to the inflated wages they've...
  20. R

    Project ENOUGH!!!

    Are you kidding me? My boss who runs a major US public health program makes half of Kim McCleary's annual salary.
  21. R

    Project ENOUGH!!!

    We are not here to win over the CAA. They are supposedly advocates for us. That's why they receive funding and donations in the name of CFS patients, I would assume.
  22. R

    Project ENOUGH!!!

    http://www.co-cure.org/Iverson.htm
  23. R

    WHERE ARE THE FDA AND NIH XMRV STUDIES? 5 August 2010 - It is TIME

    Center for Disease Control, Well they sure have controlled this disease huh? Exactly how they wanted for 25 or so years. Let's hope their run at controlling it has come to an end.
  24. R

    You may wonder why the CAA treats XMRV the way they do... So:

    I agree with V99. I also agree that no one should be left behind regardless of XMRV status. The name CFS needs to go away for all. They also need to stop calling what they don't yet understand a mental disorder.
  25. R

    FDA/NIH PAPER in PRESS, by Mindy Kitei

    If they at least say they found positives of a relevant degree. I would be happy with that. I think it could be highly possible they might change some wording in regards to the blood supply to avoid panic.
  26. R

    You may wonder why the CAA treats XMRV the way they do... So:

    Here's more on viruses affecting the heart from Dr. Lerner. This is a 3 part series on cardiac infections and CFS. http://www.youtube.com/watch?v=JGd1frMB9X0&feature=related http://www.youtube.com/watch?v=IRC86TXzDpk&feature=related...
  27. R

    You may wonder why the CAA treats XMRV the way they do... So:

    So I found this on another thread and it looks like it's possible that a retrovirus could cause cardiac problems. Couldn't that also explain the blood flow issue? Infection of Cardiomyocytes and Induction of Left Ventricle Dysfunction by Neurovirulent Polytropic Murine Retrovirus...