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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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WPI Finds High Levels of Retrovirus in ME/CFS Patients

Discussion in 'XMRV Research and Replication Studies' started by Cort, Oct 8, 2009.

  1. Koan

    Koan Be the change.

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    Hey Jen,

    Isn't that the truth! He's quite the guy, our Cort.

    :)
  2. Martlet

    Martlet Senior Member

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    I think this is a great forum of remarkably upbeat people, given what everyone has been through ... so thanks for all your work.

    Now that the news has had time to sink in, I am starting to get worried about this mode of transmission business. I personally know three other people with this in England ... we all went down with it within a three year period, all in the same geographical area. Of the four...

    One had been married for 25 years. Both she and her husband were virgins when they met and remained faithful. Neither ever went into hospital for any cause.

    One had been married for 20 years. Both she and her husband were virgins, as above. She had surgery about ten years before.

    One (me) was divorced and remarried. One surgery ten years prior to getting sick.

    One was gay, in a stable relationship.

    No spouses/partners got sick ... not then or in the almost twenty years since.

    How can this be?
  3. Koan

    Koan Be the change.

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    I think I mentioned to you before that I practice Buddhism. Something that I have found very helpful in all things, but especially now, is the Korean Zen concept of "don't know mind", a clearing away of all intellectual baggage, which is, of course, antithetical to modern western ways of being.

    This suits me because my intellectual baggage is not worth much and contains a lot of very tattered backpacks and moldy old cases. You may have some Louis Vuitton you want to hang onto and I can understand that :)

    But, in a situation like this, Don't Know Mind is really helpful. Clearing away all of our preconceived ideas and appreciating this with a fresh perspective may be the best way to go.

    We may find some of the old stuff is still relevant and some is not is this new paradigm.

    Of course, it could be that I just love something that encourages me to revel in how much I don't know!

    :D
  4. Koan

    Koan Be the change.

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    Hey Martlet,

    Do you suppose we could actually be picking it up from mice?

    People catch Hantavirus directly from mice. Mice are everywhere in close proximity to humans. I know it's in field mice and may not be in city mice but do we know that for sure. Who's done work on the mouse cohort :confused:

    Mice live among us, pee on our counters (I can hear the chorus of: EWWWW!) and in our food ( :p ) so why could we not pick it up directly from mice, I wonder.

    I think there is a good chance that I picked it up through sexual contact. I can't be sure but I've long suspected that I may have although I have far fewer sexual partners than many of my contemporaries.

    Another change in my life just before I became ill was that I began to live with a cat. :confused:

    I don't know.j

    Peace to all today!
    Koan
  5. dannybex

    dannybex Senior Member

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    Interesting updates!

    Rrrr: "But unlike the AIDS virus, which will eventually attack anyone who
    contracts it, XMRV likely damages only those people with a genetic or
    physiological susceptibility
    to the ailment.”

    That tells me again, that there are other factors involved. And what exactly are these physiological susceptibilities or what does she mean by this?

    Summer posted: “What also is known about this virus allows us to say it cycles on and off, which is why patients can feel good temporarily and then relapse."

    VERY INTERESTING. That again begs the question, what factor or factors cause it to cycle on and off?

    (From the same article):

    MONTAGNE: You now know what is associated with Chronic Fatigue Syndrome. Does it tell you how someone gets it?

    Dr. PETERSON: It's an excellent question, because I think it's required probably to be a genetic predisposition like there are for most diseases. And then there has to be the infectious agent and then a combination of host factors, probably immune factors, et cetera, that propagate the disease."

    So is he saying that XMRV may be an underlying factor, but it takes other components to contribute to CFS/ME/CFIDS/XAND?

    Those other factors (which could be many) could explain why some get sick and others don't...

    Each time I come back here all I have is more questions! :)
  6. Dreambirdie

    Dreambirdie work in progress

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    Hi Koan--

    Practicing "not knowing" has been a big blessing for me, when I can pull it off. My meditation teacher/therapist (who is a Jungian and a mystic) calls it "suspending beliefs." I really like that image. He will ask me questions like: "what is the belief that is driving you now?" and "how useful is that belief?" and "are you willing to suspend it temporarily and investigate if it's true?" The amazing thing is that so MUCH of the beliefs that I carry around (in my moldy luggage) are not even true! :eek: And definitely not useful because of that.

    In dealing with these new research findings, I've had to remember that I don't need to know the WHOLE THING immediately. Sooner is not that much better than later. The same information will be still there after my nap. :)
  7. dannybex

    dannybex Senior Member

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    LOL. Excellent points. I too found that despite my intense curiosity at times, it was so helpful to stay away for a day or so, and yes...meditate, get distracted in other ways...

    As you say...the same info will be there. And worrying or stressing about it certainly won't help anyone.

    Now if I could only pin that to my forehead.
  8. greybeh

    greybeh Guest

    I'm a new member. I have fibromyalgia. My mother has fibro/CFS.

    I see that "murine" refers specifically to rats/mice. I had been pondering the possibility that other rodents could carry the virus. Don't know enough to speculate.

    Very curious to follow the news and not too familiar with CFS resources so I'm glad to be able to see them in this thread.
  9. Koan

    Koan Be the change.

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    Dream, Danny, et al

    It's so difficult, isn't it! I keep reminding myself of "Don't Know Mind" over and over again as, when I neglect to do so, steam can be seen emitting from my ears.

    I have often thought, over the past few days, about what it would be like if we were all in the same room because I have felt, in a way, as though we were. I could practically see people gesticulating and scratching their heads and turning to each other with questions and ahha moments!

    Personally, if I did not at least turn it down from time to time, my head would explode.

    Don't know, don't know, don't know...

    ahhhhhhhhhhhh
  10. Dainty

    Dainty Senior Member

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    I've thought the same thing as well. I think that room would be a noisy buzz until we got it out of our systems, then it would slowly begin to get quieter and quieter as we begin crashing and run out of things to say, until we're all just silent, pondering, resting, and waiting.

    At least, that's what I'm doing by myself over here...in various cycles...
  11. Martlet

    Martlet Senior Member

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    At the time I got "the flu", we were traveling around New Mexico and Colorado. Some places we stayed were nice, but some were pretty ropey as that was all that was available, and it would not surprise me at all if some were mouse-infested. Also, where we lived in England there were a lot of field mice. But would this not mean that there had to have been a near-global mouse population of mice carrying the same virus?

    I have also wondered about ticks ... endemic where were were traveling AND in that part of the UK.

    For three out of four of us who knew each other, sexual transmission would be unlikely. It also seems somewhat unlikely if spouses rarely go down with it, as appears to be the case.

    So much yet to be discovered!
  12. Dreambirdie

    Dreambirdie work in progress

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    Actually Dan, there is a point right between the eyes (called yin tong), which is one of the best acupuncture points to calm the nervous system. So if you're going to pin anything to your forehead, that's the best place to pin. :D
  13. dannybex

    dannybex Senior Member

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    transmission...

    Someone in this thread posted that it could possibly be transmitted from the oral cavity...bleeding gums after brushing one's teeth...but don't quote me on that.

    I wonder if, like HIV, it's destroyed by oxygen?
  14. Jody

    Jody Senior Member

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    And I would be in the lounge , just down the hall, baking pies and setting fans in strategic locations to waft the enticing aroma down to the bloody arena where you warriors are ... suggesting once in awhile it's good to take a break ...:)
  15. Martlet

    Martlet Senior Member

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    Fleas anybody?

    Just read about murine typhus ... transmitted from mice to humans via fleas.

    Hmmmm? Another possible mode of transmission?
  16. dannybex

    dannybex Senior Member

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    Thanks Dreambirdie!

    THANKS FOR REMINDING ME!!! They stick that needle in that point almost every time I'm able to get acupuncture. That's also one of the key EFT tapping points... :)

    Bye for now...

    d.
  17. Summer

    Summer Senior Member

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    I had a remission from happening on a "magic" combination of some antioxidants (for me as we are all different in what helps), and I was greatly improved for four years, than in many many years (15+), but I over extended drastically for four days in a row and had a complete relapse, with all the viral symptoms and severe weakness back in full form, and I have not climbed out of the hole yet (that was 4 months ago).

    A body in a good non-oxidative stress state will suppress replication of the virus, but under oxidative stress, with the body pumping out free radicals, the virus can flourish.

    I do not think Judy in any way thinks this illness is psychological. I think that any illness is variable due to our genetic makeup, how we eat and a myriad of different variables, which is true of any disease state.

    From something I heard Dan say on NPR radio, I think that to be susceptible, there has to be a genetic predisposition.

    Only about 10% of the public has the genetic ability to contract xmrv, and of those, some will clear the virus and have antibodies to it.

    As to being in contact with mice, I do not know how far along they are on figuring out how this virus jumped species or if that can ever be known. HIV came from primates, but no one is still certain, after billions on research, how HIV jumped species, but just like the HIV victims did not own pet apes or have an occasion to even be around one, they somehow contracted a monkey virus that had jumped species.
  18. jenbooks

    jenbooks Guest

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    To various & sundry:

    Koan & DB: good advice--I find it hardddddddd to follow!!!! DB I was very teary yesterday and I tried to figure out why and I realized that my "belief" about an HIV-like retrovirus is very negative and fixed. It's integrated into every cell? It requires AIDS drugs? I have to step back and say as meaningful as the findings are, remember the info I know about homeopathy (including Montaigner's recent research) and remember there are other pathways to knowing and healing.

    Re: transmission. Interesting about hanta virus. Remember also I'm pretty sure monkey kidneys were used as a medium to grow polio vaccine and transmitted SV-40 (a virus). I still think it's modern vaccination programs, laboratory research, and/or bioweapons programs that are likely responsible for the epidemics of HIV, XAND and lyme.
  19. Summer

    Summer Senior Member

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    I guess it is safe to admit I agree with you 100%. And let's not forget about Feline Leukemia, which is a retroviral illness that cropped up suddenly in cats all over the world 25 years ago.

    Just things that have made me go hmm.

    I have dug deep into all this for years, but I have kept it mostly to myself. ;)
  20. shrewsbury

    shrewsbury member

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    I'm new here and to posting. Hope it's okay to do 2 different replies in one post.

    Hi Summer

    I've been trying to keep up with what's known about xmrv but haven't seen this. Could you tell me (or, if, as I would ask myself, do you remember) where you found this info? I find it very interesting.

    Hi Koan

    Love your ability to express this so clearly. Thank you for that. This news is a great reminder. Still amazes me how quickly I cling to something "known" and how often I fail to see old automatic loops of thought/behaviour/belief despite my intentions to stay aware! At lest I've learned (mostly) not to, what I call "self'flagellate", castigate myself for having gotten stuck.

    In some wonky way I see a corollary of this, in a positive way, of how freddd and richk are interacting - not holding onto any idea because they want to be right, but genuinely open to sharing info/ideas - I find it inspiring.

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