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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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    Dr. Myhills notes on fatigue, the immune systems energy demands, and Rituximab

    It great to see that Dr. Lerner is getting some national attention as well. I've been on his protocol for 4 months now and we are very hopeful. It is very true that Dr. Lerner is very excited in the results he is seeing from his patients. His confidence and knowledge are VERY reassuring...
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    Should Vip Dx have any obligation to refund patients that were tested for XMRV?

    Since the two retractions came out concerning XMRV, do patients that have paid for XMRV testing feel that Vip Dx has some sort of obligation to them to refund the fee on this test?
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    WPI Clinic - anyone been or going?

    I just had an email conversation with Kellen Jones at WPI about it. Per Kellen there is no new info on the clinic and no new appointments are being setup yet and to keep checking the website www.wpinstitute.org.
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    list of blood test to take PLEASE HELP

    Hi Denise, Unfortunately you GP will not be able to test you for most of the things you need to look at. That is one of many fun things about this illness. If you haven't done so, start simple with getting your EBV titers tested. You will have to educate yourself on the different results you...
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    In trying to prove XMRV link to interestitial cystitis I'm finding great info

    Very interesting! I am XMRV+ and suffer with M.E. My wife suffers from I.C. She has not been tested for XMRV.
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    Discussion of the NEW International Consensus Criteria

    It is VERY important that all of us either mail or hand deliver this criteria to our doctors. We have to be the ones that make this stick.
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    Discussion of the NEW International Consensus Criteria

    I was surprised not to see A. Martin Lerner's name on there as well. How absolutely sad and appalling it has taken nearly 30 years to reach this point. Millions of people left to suffer alone.
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    Letter to Dr. Coffin

    I sent a letter to Dr. Coffin and would like to share it in hopes that others will write a similar letter to him. Hello Dr. Coffin, I will spare you my sob story about this horrible illness (ME/CFS), but I will tell you that I would not wish this illness on my worst enemy. There are...
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    Where's Ian Lipkin???

    maybe you have some constructive ideas? or perhaps you can write a brief report letting us know what you're doing about the passivity? thanks. Here's just one idea. We are missing the boat when it comes to educating the general public about this illness. We can never get them to the...
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    Where's Ian Lipkin???

    Why have we heard nothing from the famed virus hunter? It seems that XMRV is at a point of no return now and not a peep from him. Was this just another rouse by Anthony Fauci and Co. to appease us for awhile? And, who appointed John Coffin and Jonathon Stoyle the end all, be all? This is...
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    Deja Vu?

    "I have not seen a single piece of data that has convinced me we are wrong. The virus is there, it's real, it's alive, it's not a lab contaminant, it's not my imagination, and I don't care what Steve Straus tries to do, he can't make it go away.". Elaine DeFreitas 1991 from the book Osler's...
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    BREAKTHROUGH: New Spinal Fluid Analysis Distinguishes Lyme from CFS

    Has anyone asked the CDC how soon they are going to do a replication study? Since they don't believe in XMRV, then they should have plenty of time to devote to this study.
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    XMRV positive vindication!

    Hello everyone, I unfortunately have been visiting this site every day for the past 2 1/2 years. This is my very first post. Finally, after a long wait for my XMRV test results, I now know that I am XMRV positive. Wow, what a mixed bag of emotions that has placed upon me. One emotion that...