XMRV was NOT found in prior M.E. outbreaks???

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Oct 26, 2010.

  1. karynwolfe

    karynwolfe New Member

    I don't know if it was a mistype and turned into a rumor, or if it was spoken and then deleted somewhere, but the only thing that made me get behind this XMRV thing is the fact that they used blood and tissue samples from people in the 1980s M.E. outbreaks, and found the virus in those people.

    I -know- people who were part of those outbreaks, and I even remember them being very ecstatic that people in their outbreak were used in the study to "back up" the claims that, this virus has at least been around since the 1980s because it was found in those people......

    But I just learned that, in fact, NONE of the samples from Dr. Peterson's bio bank were used in the WPI's study!!!

    "Dr. Daniel Peterson understood the promise that a historical bio bank could bring to scientific understanding thus he began collecting and storing patient samples in the early 1980's. However, it is important to note that no samples from this historical bio bank were used in the Institute's XMRV studies."

    Please help me understand. Am I the only one misinformed? Was this a serious case of brain fog? Did everyone else think this, too? I am so confused, and heartbroken... Have they EVER used those samples for their work? Why even mention them at all, if they were not goiing to use them??? Why would they NOT use such important samples when they're trying to prove this is the cause! Could they have already tested them, and not found XMRV, and just aren't letting us in on it? Now for all we know, XMRV could be the reason for an entirely different subset of "CFS," that has nothing to do with M.E.!

    I doubt everything, now. XMRV, the WPI, everything.

    I have the classic ME. I have the illness that happened in the outbreaks. If this virus hasn't been found in people who have my type of illness, how am I supposed to have hope that this could be my treatment/cure? And don't get me wrong, I am thrilled that they're discovered it at all... But if this only applies to a particular subset of CFS, and not to the classic illness that I have...

    I feel like I may have spent the past year being hopeful for absolutely nothing.

    - A very disheartened Karyn
  2. karynwolfe

    karynwolfe New Member

    It doesn't help that Dr. Hyde (who helped create the well-known Canadian Consensus Criteria, and is one of the leading experts on M.E. and also CFS-type illness) doesn't think XMRV could possibly be the culprit, because the incubation period of retroviruses are about three weeks, which makes it impossible to cause the quick epidemic outbreaks that has happened with M.E. throughout the 1900s.

    (And in my frazzled mind I forgot to add the URL for the WPI quote, in case anyone wants it)
  3. victoria

    victoria New Member

    I had that impression too---
    eta to add, I originally posted I couldn't look right now... but I did.

    Found this article on medscape (you need to register to read the whole thing), it is dated 6/17/10


    "...Although some construed this to mean the patients were from clusters of CFS, such as occurred in Incline Village, Nevada, in the 1980s, Whittemore said that was not the case."Only 25 of the 101 patients became ill around the same time and location. Seventy-five percent of the other patients did not become ill in an identified cluster," she said on behalf of the institute's researchers, who were unavailable for comment."

    [This Message was Edited on 10/26/2010]
  4. karynwolfe

    karynwolfe New Member

    Thank you for that link, victoria, I was able to read it all.

    So many questions, now.
  5. AllWXRider

    AllWXRider New Member

    I'm part of a double blind study for CFS and HERV-18. Tufts Univ and UofI Chicago. Double blind means that...yes...I'm in the dark too. It's suppose to conclude this November. I know that everyone will see articles on it when it's released.

    A virologist told me that all retro viruses are lipid coated, so anything that attacks lipids makes sense. Lipids are fats and oils. A natural product that act on oils is Lauricidin (lauric acid from coconuts). I'm also using BHT, a synthetic, but powerful anti oxidant that preserves (by preventing spoilage). BHT has a 20+ year safety history in the food industry.

    Even with XMRV, never did 100% of the CFS ppl read positive for the test.

    Spouses rarely get CFS. Logic here says that a strong immune system is anyones best defense. Sex break capilliaries and transfers blood...hence the term STD.

    Mercury, lead and other soft metals greatly weaken the immune system. Why do medical boards yank a doctor's license when they test or treat for metal toxicity? "Only the sick need a doctor" Jesus said. Maybe that's why the NWO is pushing for vaccines so much: thimersol, a preservative is mercury based.

    NWO, New World Order, New Reality, New Deal all the same thinking. They will stop at nothing to push their agenda thru. Absolute power corrupts absolutely.
  6. karynwolfe

    karynwolfe New Member

    HERV-18 is an endogenous retrovirus, though. XMRV is infectious, not endogenous; it did not come from within our humane genome. =\ Maybe HERV-18 is something that activates when our immune system is compromised?

    I started going downhill after a preservative-free vaccine. Now it is known that over 50% of people who get M.E. post-vaccination, tend to get it after the same one I had. Something is definitely up, there, but I'm not sure it's a preservative... Maybe contamination, like with the polio vaccine, and Gulf War Syndrome. Contamination is way more a threat than preservatives, I think, because we can prove that it happens (has happened many times!) and at least in this day and age, preservative-free options are available. Because something in it, something it did to me, it's like it primed me for the next virus that came along to destroy my body's natural functioning... I still don't know what virus it was that did it. And I'm just one of few to which this has happened, sadly.

    The majority of research on M.E. points to an enterovirus being the true initiator of this disease.

    What if the outbreaks are so common amongst school, university, and health work officials, not because of close contact (regular offices have close contact, too?) but because we all have to get these vaccines updated more than the regular population? Or maybe that's just me hoping that somehow virus contamination will ultimately link XMRV to everything and be the answer. =( I don't know.

    Goodness knows nothing stops anyone from getting XMRV with things as they are now... But in my brain, now it's just become another "subset" in which only a certain number will benefit from treatment, just like with chronic HHV-6 infection (with Ampligen), and I have serious doubts as to whether treatment will help people like me.

    Please keep us updated with the study you're participating in, if it doesn't make press (because it might not).

  7. simonedb

    simonedb Member

    it wasnt just Dr Peterson involved in inital research but I do not know if they used any incline village folks for sure....I do know that a couple of women who testified at CFSAC like mary schweitzer and a few others sick since the 80s with the classic incline village stuff are also xmrv positive, so I wouldnt worry about it too much. you could go to PR and ask and I can try to find out and get back to you, i know someone working with Dr peterson right now.
  8. karynwolfe

    karynwolfe New Member

    Maybe you can ask what the point was of mentioning the biobank from the 80s and yet NOT testing the samples for XMRV, when they're trying to prove XMRV is involved? I do not understand this at all. It seems misleading and highly counterproductive...

    I'm still convinced this virus could play a role in our illness, like other viruses can and do, but if it's not found in people like me then I probably won't even have it at all so I'm still looking at no cure, or even treatment... Or if it's there, then a lifelong treatment for something that won't actually stop the disease; like a temporary fix until I get another infection... :(

    It's weird to want a retrovirus but I just want to know that there's a chance for REAL help... I thought we had that chance? Maybe it's my fault for actually getting my hopes up in this.

    I really should join Phoenix Rising but.. well, honestly, I'm unsure of the people there. I've read the boards a few times and there seems to be too much bickering?

    I think I'm having some mood problems today so replying further might not be in anyone's best interest, I'm sorry
  9. simonedb

    simonedb Member

    I checked with person seeing peterson and she reminded me that wpi has done a number of studies on xmrv and on cfs and they have looked at some of the 80s people and you knw there is study right now on dr bells samples from 80s
    sorry i can't find the links to stuff been too busy to spend as much time on internet lately.
    but if you go to dr jamie deckhoff jones blog or the patient advocate or mindy kitei, just google those names and cfs and you will find links, always good science updates there too