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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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XMRV - Hope and Caution

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

  1. Cort

    Cort Phoenix Rising Founder

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    Not to put too much of a damper on things but after looking closer I'm a bit worried - not about whether XMRV is in ME/CFS - but in how many ME/CFS patients its in. I'm not popping the bubbly - at least for myself - quite yet.

    This is from my blog - it sounds a note of caution:eek:

    http://aboutmecfs.org/blog/?p=969

  2. Summer

    Summer Senior Member

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    Not dampening me. They are getting same rations in non-clusters of 500 ill in the U.K. which was not in this study. But I have become 99% convinced this is it because of what this virus targets and effects and how it behaves. As Mikovits said, this explains every symptom of CFIDS. I hope Dr. Peterson and Dr. Judy will expound on the connections of XMRV to symptoms in upcoming conferences. I can read about them, but I am too brain damaged to write about it.

    I feel very hopeful! :)
  3. Cort

    Cort Phoenix Rising Founder

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    So you have some good inside information - good! That makes me happy!:D
  4. Advocate

    Advocate Senior Member

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    Hi Summer,

    The people I worry about now are the ones who will be XMRV negative.

    Will they still be classified as having a psychiatric disease, CFS? Will they still be verbally abused by their doctors, family, friends? For the XMRV-negatives whose disease is not psychogenic, this will be a terrible thing.
  5. Finch

    Finch Down With the Sickness

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    I agree with hope and caution.

    My first thought on October 8 was to be thrilled with this report. The second was to wonder what happens if it's not the answer for me. It's very exciting that this discovery seems to validate the suffering that ME/CFS patients have had for so long, but what happens to those who do not test positive (and surely there will be some, if not many)? Will the validation for their/our suffering go to an even lower level, or will there be a more intense search for the answer for those who are left behind?

    There are too many questions, and the answers can't come quickly enough. I, too, am looking forward more than ever to the upcoming CFSAC conference and what additional news may come out of it.

    After being ill for more than 18 years, it's now difficult to be patient. Has anyone heard yet about getting the testing through WPI and how much they will be charging for the test? I'm almost afraid to find out the answer for myself, but I'm anxious to find out as well.

    I don't even know where I fit in the type of patients who were in the study. I very much believe I had a viral onset, but I haven't had any of the other tests to my knowledge that would show low natural killer cell functioning, increased pro-inflammatory cytokine levels (primarily IL-6, IL-8), ‘extremely low’ VO2 max during exercise testing and RNase L dysfunction. I do know I have extreme difficulty with exercise, but it hasn't been measured.

    Truly, I'm starting to get burnt out by all this.

    Thank you for a very thoughtful post, Cort.
  6. gracenote

    gracenote All shall be well . . .

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    XMRV and prostate latest study

    This has been an exciting week, but I think now the real work begins. I agree with Cort we need both hope and caution . . . and patience.

    I came across this article in Science Daily. I hope it doesn't mean that future testing of XMRV and ME/CFS is in for a rocky ride. I hope confirmation of WPI's first study will happen quickly and unequivocally.

    "The xenotropic murine leukemia virus-related virus (XMRV) which has previously been linked to prostate cancer has been found to have a dramatically lower prevalence among German prostate cancer patients, if any. Contrary to some reports, which have found XMRV in 40% of cases in patients in the US with familial prostate cancer, research published today in BioMed Central's open access journal, Retrovirology, has found no link between the two conditions in a large study of German prostate cancer patients."

    http://www.sciencedaily.com/releases/2009/10/091015191701.htm
  7. Cort

    Cort Phoenix Rising Founder

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    That was a big study in Germany (which brings in geographic issues) and shows just how difficult this stuff can be. Science takes so many loops and turns. Another recent article on XMRV appeared to validate its existence in malignant prostate cancer in the US.

    Geography? Is XMRV in Europe? It appears to be in Japan!

    That study also cast doubt on the RNase L connection to prostate cancer- something that a recent study also found.

    Hopefully things will go smoother for us (for once!).
  8. Advocate

    Advocate Senior Member

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    Here's a blog by a graduate student who is studying the molecular and biochemical evolution of HIV within patients and within populations. He/she also studies epigenetic control of ERVs. [endogenous retroviruses]

    http://scienceblogs.com/erv/2009/10/xmrv_and_chronic_fatigue_syndr.php

    The blogger's conclusion: "Nice study design. These folks arent amateurs."

    Do you remember The Trap Mary Schweitzer warned about? This blogger fell into The Trap, when he/she wrote:

    "BUT, this story doesnt make sense...Not all the CFS patients have XMLV. [sic] I assure you that all AIDS patients have HIV-1."

    Yes, the story DOES make sense, because it's not necessary for all CFS patients to have XMRV--especially with the multiple, ever-changing, sloppy, psychogenic definitions of CFS.

    BUT, it might be necessary for all XAND patients to have XMRV.
  9. gracenote

    gracenote All shall be well . . .

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    XMRV and RNase L

    I received this post from my doctor's office regarding XMRV and testing for RNase L.

    I was a part of this original study. Last month those of us in the study were invited (without being told why or what for) to have blood drawn. Since WPI's announcement, I've been told that it was to test for XMRV. The results are not back yet.

    The full post can be found at:

    http://campaign.constantcontact.com...SOVI9SpMgKeuW6cBxs8sWRwWMq_Z2T5nxZr3280lx1UhX
  10. Snowcat

    Snowcat

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    Thanks

    Thank you for the excellent post, Cort. I'm very grateful for all your work on this subject.
  11. Jody

    Jody Senior Member

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    Beautiful piece of writing, Cort.

    Again. :)
  12. Summer

    Summer Senior Member

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    Judy Mikovits said that eventually every CFIDS patient will be positive. They have 98% positivity now (more since the study as the antibiody test is being refined). Yes, 2/3 had active virus in the blood, but the others had a strong antibody to it, so also have XMRV.

    As to other opportunistic things. You may be negative, under some tests. I was negative to a bunch, but I was told that some need to be taken right from the sample to PCR. HHV6 and variants are extremely lytic, meaning destructive, and can actually destroy itself in the test tube. Positive tests are more meaningful than negative tests, many times.

    The only virus that showed up in me, at the time I was positive to DeFreitas retroviral sequences was a slight elevation to varicella zoster, but no CMV, EBV, HHv5, Chlamydia, etc, but I am extremely ill and debliatated.

    Also, the WPI research team, from a source, has state of the art testing equipment which I do not think most average doctors have, and they have found 40-50 active viruses in CFIDS patients. So obviously, even those of us seeing some of very good docs are not having our active viruses picked up. My RnaseL showed very high because that test is very reliable.

    I think instead of CFIDS patients finding out they do not have XMRV, other labels are going to find themselves to have XAND. Dr. Judy has been talking about this.

    If you read through the Media Links threads, I have pulled out different quotes from Judy, as each article cited different things she said. I really do not have that much inside info, and most of what I am finding is in what Judy has said, reading DeFreitas Patent, which is loaded with info, and a study on hearts infected with XMRV that is producing the type of cardiomyapthy we have and some info I have gotten from some Peterson patients.

    And also, there are degrees of illness with any disease. I wonder if some of us who are more debilitated from cytokines jumping on every little thing will end up being safer. Perhaps those whose immune system is more down regulated will allow cancer cells to go undectected and end up in a much more dangerous place. I have had that postulated to me by a CFS expert. I think I may be watching that play out, though it was said to me over a decade ago.

    Keep in mind that Dan Peterson has been studying this disease for 25 years, and not just his Tahoe patients. They come from all over the U.S. and many foreign countries. He's not just basing even observations on his Tahoe patients.

    Now my brain hurts and I hope I made sense. :D
  13. Koan

    Koan Be the change.

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    You make complete sense.

    We now have research on a tightly defined cohort who definitely have the illness we all suspect we have. They used precisely the type of stringent criteria we have long asked for.

    This kind of research can only bring clarity.

    Koan

    ETA Cort, I don't want to be really negative here but, at a time when WPI is doing so much to further our joint interests and statements are quoted around the internet with impunity and equal weight, I wonder at some of the language you used: "Stacking the Deck".

    I know you say, at the end, that you aren't knocking WPI and some of what you wrote is positive, but I wonder at the wisdom of blogging a piece that is so critical of this research as opposed to a personal piece about what it means for one person if they find they do not carry the virus but have the illness.

    Just thinking aloud here.
  14. dannybex

    dannybex Senior Member

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    I agree Cort...

    "Who Are Those Guys? So we don’t really know who ‘those guys’ are yet. Sure we have some tantalizing hints that the virus is found in more types of patients than the Science paper can show but before most patients should pop the bubbly they should wait to see studies that contain patients that look like them. The good news is that those studies should already be underway."

    As others have stated, I'm worried that those who are found not to have XMRV, or XAND (yes, a better name than CFS, but it sounds soooo trendy) will be stigmatized and possibly even become suicidal, especially if they've been to dozens of doctors over many years, have had the same multitude of tests and results that those with XMRV have. And are just as, if not in some cases, more disabled.

    But yes...who are these patients? How does one explain the fact that Whittemore's daughter became ill at age 10, yet someone like Dan (over at CFSKnowledgeCenter) was perfectly healthy until age 63, and quickly became so severely disabled after catching some sort of stomach flu/intestinal bug? If you haven't seen his video, I highly recommend it. Just heartbreaking, but also courageous.

    At the same time, ever the worry-wort and desperate to get my life back, I'm looking into natural antivirals (and antiretrovirals), and am kicking myself for not trying the d-Lenolate (olive leaf extract) Ken Lassesen gave me probably 3 years ago. I still have the bottle, unopened, with the expiration date...June 2009.

    Thanks Cort -- and everyone,

    d.

    p.s. Koan...I don't see it as critical of the research...just that he's asking questions...looking for more specifics. :)
  15. Koan

    Koan Be the change.

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    I guess I think it's very clearly defined who "those guys" are. What remains to be seen, now that there is uniformity of several factors found in those guys, is who are each one of us.

    Some of us will not have an illness in the XAND category. Some of us will. Some of us may have a yet undiscovered retrovirus. Some may have MS.

    But, I think the one thing we do know is who those guys are. WPI took great pains to ensure that which is why this study has statistical significance.

    Peace out,
    Koan
  16. Sing

    Sing Senior Member

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    Response to Cort and Summer

    Thanks for your thoughtful, informative post, Cort. I was really amused at your analogy of this being just the beachhead, with the jungle yet to come!

    I want to ask Summer for more information or a link to the UK study mentioned and for whatever you know about how a retroviral infection would relate to/cause our symptoms. Links or copied material would be fine if you can't do the writing and thinking it all out now. Summer had written:

    "Not dampening me. They are getting same ratios in non-clusters of 500 ill in the U.K. which was not in this study. But I have become 99% convinced this is it because of what this virus targets and effects and how it behaves. As Mikovits said, this explains every symptom of CFIDS. I hope Dr. Peterson and Dr. Judy will expound on the connections of XMRV to symptoms in upcoming conferences."

    Now here are my own first, then second responses to this research. Initially I related to this in the sceptical, uninvolved "entryway" of my mind. My boundaries, in other words, were keeping it out. But last night I suddenly had a feeling shift which upended my denial. I mean more than just denial of the implications of these findings. Even though I have had a constant disabling condition for at least 15 years, and take care of my physical needs, yet somehow I haven't believed that anything is wrong? Because the question of "What is going on?" has never been answered, I too have floated in unreality, I guess--along with the CDC. Maybe this was self protective in a way. But last night how suddenly FELT in my body and whole self the truth of this study'does suggest to me personally either that this is what the problem is, or that something close to this is, which researchers can now hone in upon. I hope we all live to see the day of recognition, even if it is not yet effective treatment. I swear that the recognition alone is a milestone of momentous importance, because now there will be a rationale for funding and pursuing research, which our weak pleas for help and repeated testimonies never seemed to establish.

    Let's help keep each other informed both about the next findings and how we are all doing with it.

    Cecelia
  17. Summer

    Summer Senior Member

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    Be glad to:

    "But the senior author of the study, Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada, said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus - indicating they have been infected with XMRV, which can lie dormant within a patient's DNA.

    "With those numbers, I would say, yes, we've found the cause of chronic fatigue syndrome. We also have data showing that the virus attacks the human immune system," said Dr Mikovits. She is testing a further 500 blood samples gathered from chronic fatigue patients diagnosed in London.

    "The same percentages are holding up," she said."
    LINK


    "Continuing work after the paper was published has found the virus in nearly 98 percent of about 300 patients with the syndrome, said Dr. Judy A. Mikovits, the lead author of the paper.."
    LINK



    "What's more, some characteristics of the virus match up with the syndrome's symptoms, she says. Viruses related to XMRV can cause blood vessels around the body to leak, a common symptom of CFS. Mikovits also notes that in mice, a protein that coats the shell of the virus causes the animals' nerves to degenerate. A class of immune cells called natural killer cells, which are thought to go wrong in CFS, are known to be susceptible to infection by the virus."
    LINK


    "Mikovits says the virus may also attack key mechanisms that form red blood cells, the oxygen-bearing workhorses that fuel body tissues."
    LINK


    "Again, as Dr Judy Mikovits and colleagues point out in their paper, some of the most commonly reported features of ME/CFS include neurological symptoms and immune dysfunction with inflammatory cytokine and chemokine upregulation, and some of these observations could be accounted for by infectious XMRV in lymphocytes."
    LINK


    "Mikovits believes the association may be even stronger than the present work indicates. DNA sequencing only picks up active infections, she says, so she wants to study CFS exposure to the virus more broadly. In an unpublished investigation, she and her colleagues analyzed blood cells in about 330 CFS patients and found that more than 95% expressed antibodies to XMRV, whereas about 4% of healthy controls did. "
    LINK
  18. Dreambirdie

    Dreambirdie work in progress

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    I am not too excited to want to know that I have live XMRV. I would prefer NOT to have a retrovirus, even it does mean further skepticism from those whose opinions I don't (frankly) give a rat's ass about anymore. Jeez! Who wants a retrovirus! :eek: If I have to have something show up in my test, then let it be very very OLD antibodies.
  19. jenbooks

    jenbooks Guest

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    I don't mind Cort questioning and being cautious.

    For me the findings are freeing. At last my restless mind is pleased and the puzzle pieces fit. I no longer have to feel a mysterious pariah with some unidentified immune defect that caused me to be hobbled by a tickbite while for others it was a few weeks illness. It is not me. I'm okay. I am confident this study will bear great riches over time.

    Because I am delicate I'm not sure I can take lots of drugs.

    I think folks should not worry about stigmitization of CFS without XMRV. This finding will translate into a definable illness and easier coverage by insurance. I know HIV patients who get free IVIG. Maybe more treatments will bd available to us without all being put of pocket.
  20. Koan

    Koan Be the change.

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    This development really puts us in a difficult situation. I find it's impossible to figure out what a personal good outcome is.

    It's a good news/bad news joke. The good news is that you may have a retrovirus linked with a high incidence of cancer. The bad news is that you may have a retrovirus linked with a high incidence of cancer.

    :confused:

    Koan

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