International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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XMRV - Hope and Caution

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Oct 17, 2009.

  1. Dreambirdie

    Dreambirdie work in progress

    N. California
    Yes, we still have FAR TO GO before they figure out all the details, and especially the testing.

    In the mean time, in my fantasies... I will be completely well before that happens. No retrovirus for me. I will be miraculously cured by eating Meyer lemons and injecting myself with purified sea water. And, I will be able to buy a small island paradise, with all the money I save by not having to take any more supplements. My energy will gush forth like molten magma from my inner core as I run, jump, even fly, and have sex for three days straight, without ever being tired again. I will live to be a very ripe, but firm, 105 year young tropical yogini, painting my dreams on large canvases made of mashed palm fronds baked in sunshine. Upon my death, I will return to THE oneness as a very content speck of light.

    Now isn't that more fun than stressing over reality? ;):):)
  2. Chris

    Chris Senior Member

    Victoria, BC
    keep going!

    Hi, all--you are an amazing bunch of people--a lot of informed, concerned folks acting like one great supercomputer processing information at warp speed--I am overwhelmed and very, very grateful to everyone posting info and views on this website--thanks to all, and of course especially Cort!

    Dreambirdie-thanks for your dream--hope you live to fulfill it, but even if that does not quite happen, dreams help keep us all going.

    And Summer--many thanks for digging out that reference--but one has to recognize that it was a mouse study, not a human study, and seems to have used a known mouse retrovirus, close to but not actually identical to XMRV. So very interesting--to me and the many others who have significant heart involvement in our versions of CFS (or XAND--but I have had no tests so far).

    Thanks again--and keep the news flowing! Best, Chris
  3. greybeh

    greybeh Guest

    Heart Study

    Summer, is that the same virus?

    The name in the paper confuses me. I have a friend with fibromyalgia who has had a heart attack. I'd like to be able to share this with her if she's interested.
  4. Summer

    Summer Senior Member

    Chris and Greybeh,

    I found this link to the heart study on another forum by a smarter person than me. Here is what I can say about it based on what this person said. XMRV is able to infect prostate cells by way of the XPR1 receptor.

    XPR1 receptor is also in the following sites: heart, spleen, lymph node, thymus, leukocytes, bone marrow, kidney, pancreas and skeletal muscle.

    There are not a lot of studies showing the connection between retroviruses and XPR1, but this heart study is one that does.

    I am fairly familiar with the specific heart issues that we have, and the study does mirror our heart issues, so I concluded that it is highly possible XMRV could affect the XPR1 in the heart and cause a lot of the heart issues seen in CFIDS.
  5. fairlight


  6. greybeh

    greybeh Guest

    Summer, thanks for your detailed response. I've pointed some folks to this page who had made inquiry of me when I posted your study.

    I really want to keep information going. I'm on the PatientsLikeMe fibromyalgia board. I am watching intently, wondering exactly how fibromyalgia fits into all of this.

    I've seen a discussion of the cognitive symptoms and retroviruses. Still wondering how non-restorative sleep and pain fit into the mix. My head is just spinning. I'm glad to be able to join you folks here. I am learning about ME. The fibromyalgia literature isn't as in-depth about ME and all the terminology is new to me. I had previously thought that ME was "just like fibro, only with less pain and more fatigue."

    I feel badly about my misconceptions. Still learning. I truly never dreamed that fibro might be linked to a virus. I thought it would turn out to be purely a genetic defect. I realize that this news may only apply to a subset of fibro patients. Eager and curious just aren't strong enough words for what I feel.

    You folks seem friendly. I am grateful.

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