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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. Jody

    Jody Senior Member

    Good point, Jen.

    Wonder if Mark is around, if he would feel like telling us what he had in mind with that post?

    In any case, I hope he continues to feel free to post here, if there was a misunderstanding of some kind, that he not feel hesitant to post again.

    Added later by Jody: As it turns out there was a misunderstanding concerning Mark's post. It was indeed in response to jen's speculation. He was posting this in response to her.
  2. Rrrr

    Rrrr Senior Member

    good article: Chronic fatigue syndrome linked with virus similar to HIV

    Chronic fatigue syndrome linked with virus similar to HIV

    October 8, 2009**

    Joseph Hall*

    http://www.healthzo newsfeatures/ research/ article/707537- -chronic- fatigue-syndrome -linked-with- virus-similar- to-hiv#

    Often derided as lazy or crazy, for decades people suffering from
    chronic fatigue syndrome have faced a stigma of doubt, ridicule and
    legal hassles over their condition.

    But a new study, to be published Friday in the journal Science, shows
    the ailment is almost certainly caused by a virus, a close relative
    of HIV, and might be treatable with current AIDS medications.

    Judy Mikovits, the senior study author, says that virtually all of
    the 101 chronic fatigue sufferers she tested for the study were
    infected with a retrovirus known as XMRV.

    And the chance that the virus was there by accident in chronic
    fatigue sufferers was "infinitesimally small," especially since it
    was not found in the vast majority of healthy people also tested by

    "It undoubtedly causes some of the symptoms that are associated with
    it (chronic fatigue)," says Mikovits, research director of Nevada's
    Whittemore Peterson Institute for Neuro-immune Diseases.
    "It's a true human infection," she says.

    She also says these findings will help bust the stigma that imposes a
    duel burden on those with the disease, which is also known as Myalgic

    "We're delighted because the stigma that's gone on with this, the
    idea that it's somehow psychiatric or you are unable to handle
    stress...would be gone."

    Toronto lawyer Richard Bogoroch agrees, saying chronic fatigue
    patients also face legal discrimination, with employers and insurance
    companies often doubting their disease.

    "I can tell you in my experience these are real complaints and this
    is wonderful that they've found an objective marker," says Bogoroch,
    who has fought many chronic fatigue compensation cases.

    "Many people in my experience with chronic fatigue...have had their
    creditability doubted - they're either malingerers or they're not as
    injured as they say they are. Their whole credibility and legitimacy
    has been called into question."

    Mikovits says that, like HIV, the virus probably attacks some
    elements of the immune system, and is passed on through bodily fluids.

    "It looks to us just like an HIV in that it sets up an immune
    deficiency (that causes) a spectrum of disorders," Mikovits says.

    "And it plays out for different people in different ways just like HIV."

    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.

    "You can be infected and be well," she says.

    Mikovits says the virus may also attack key mechanisms that form red
    blood cells, the oxygen bearing workhorses that fuel all the tissues
    in our bodies.

    "The whole fatigue thing could well be an inability to appropriately
    then develop red blood cells," she says.
    "So you'd (alter) oxygen carrying capacity which we've seen in a lot
    of the patients...just plain out oxygen depletion."

    Just as there were vocal detractors of the HIV-AIDS connection when
    that virus was discovered two decades ago, people will question the
    retroviral foundation of chronic fatigue, Mikovits says.

    But, she says, all of the various symptoms associated with the
    syndrome could be caused by immune and blood damage commonly
    associated with retroviral infections.

    "As I go through the clinical symptoms...there isn't one that I have
    found so far that couldn't be explained by infection with this virus."

    Canadian Institutes of Health Research scientist Marc-Andre Langlois
    agrees, saying many of the symptoms associated with chronic fatigue
    could be explained by retroviral infections.

    Indeed, Langlois, a University of Ottawa retroviral expert, says more
    and more diseases, such as prostate cancer, have suspected
    connections with these pathogens.

    "And what's good about that is that because of the efforts in the HIV
    field, retroviruses are treatable," he says.

    "So it immediately gives the clinicians working in this field new
    possibilities of treatment. Instead of treating these patients for
    depression.. .you could try giving them anti-retrovirals. "

    There are some 340,000 people in this country diagnosed with chronic
    fatigue, according to Statistics Canada.

    Though they vary widely, symptoms can include fatigue, loss of memory
    or concentration, unexplained muscle and joint pain, headaches, poor
    sleep and extreme exhaustion after physical or mental exercise.

    And as typical with viral infections, the symptoms of chronic fatigue
    often come on suddenly and with full force," Mikovits says.

    "There really are outbreaks, where they remember the day they got
    sick," she says.

    Like the HIV, the fatigue retrovirus would be spread through bodily
    fluids like blood or semen, and is likely to lurk in the country's
    transfusion blood supply, Mikovits says.

    "We actually have a couple of patients who likely acquired the
    disease and the virus...through a transfusion process," she says.

    Mikovits says officials in charge of blood safety will likely have to
    address the possibility that treatments meant to kill HIV in
    transfusion products do not get rid of the XMRV virus.

    As a retrovirus some of the drugs that work to tamp HIV levels down
    in the body would likely help chronic fatigue patients.

    And because these anti-retroviral drugs have already been approved
    for human usage, they won't be subject to the onerous regulatory
    testing that could keep them out of human chronic fatigue trials for
    years, Mikovits says.

    "I think there are likely going to be drugs out there from our
    experience with HIV that are (government) approved and that we can
    just start clinical trials with," she says.

    "Treatment is not going to be five to 10 years away, but can be
    rapid. Within the next year or two."
  3. Advocate

    Advocate Senior Member

    "The NYT article on XMRV and CFS is the third most emailed right now! Yay!"

    If you have multiple e-mail addresses perhaps you could send that NYT story to each address. If enough people do that, it might raise the ranking to #1.
  4. Summer

    Summer Senior Member

    ""I think this finding will open up a whole new world of treatment options for patients with Chronic Fatigue Syndrome, and we also believe it will impact millions of others with neuro-immune diseases like fibromyalgia, Atypical Multiple Sclerosis, Epstein Barr and even autism," she said."

    "It's a huge breakthrough," Whittemore said. "We've never been able to identify one pathogen that could explain all the variations of symptoms that patients exhibit with these diseases. 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."
  5. Summer

    Summer Senior Member

    I like the name "XAND". I am assuming it rhymes with sand. I have been asking my friends, and they all like it. I think maybe any name without fatigue or syndrome in it is a great improvement. :D
  6. _Kim_

    _Kim_ Guest

    Summer, that is the piece of the puzzle that I've been wondering about - the cycles. There have been years between relapses when I have felt well. This latest one, however, is the worst yet. I've been sick for six months and just last week was forced to take a leave of absence from school. I just couldn't push any longer. Also, with each relapse, old symptoms reappear as new ones show up to make each episode worse than the last. In the past, rest, dietary changes and supplements have brought me back. This time, none of my old tricks are working. I have hopes of being back in school by January, so I'm going to order the test from VIP on Monday.

    Thanks for bringing such good information to this thread.
  7. _Kim_

    _Kim_ Guest

    Does that mean that some people can be carriers of the virus and never get sick? Or do they not get the virus in the first place?
  8. Tony

    Tony Still working on it all..

    Melbourne, Australia
    I think it means that people can have the virus but not be sick.

    "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. "
  9. Kati

    Kati Patient in training

    Testing positive or not-

    In the same trend, could possibly one test negative because there is no detectable virus but still positive? Well I will leave that to the researchers to figure it out- sounds like they are doing a very good job at it. :cool:
  10. Min

    Min Guest

    Thank you for your wonderful comment on the UK Guardian's website koan, I have replied too that I wonder if a tick bite is spreading this from mice, as so many of us also have Lyme and co-infections.

    The most abusive comments seem to have been removed there.
  11. hvs

    hvs Senior Member

    Cheney reaction available for free now

    --"XAND" works: anything but CFS!

    --Sorry about your news re: school, Kim.

    --Yes, the virus can go into remission. Dr. Peterson has long experience helping the body put CFS into remission using antivirals and gamma globulin, and so on. He just didn't know exactly _what_ he was putting into remission! ;)

    --By the way, Dr. Cheney's reaction to the XMRV discovery is available (not-ppv) on his website here:

    --He and Dr. P (and then DeFreitas) appear to have been close to finding a retrovirus in CFS long ago. If in the months and years to come we learn that they were not really on a track that would have proven it, so be it. But if we learn that they and DeFreitas were actually on the path to solving this thing but were road-blocked by the CDC then we should be very angry, indeed.
  12. jenbooks

    jenbooks Guest

    Some thoughts from others' posts:

    I really do wonder about ticks, or else laboratory mice, especially since we know that in at least one field (gene therapy) we were using modified murine leukemia viruses to carry genes into cells. If we aren't in contact with the species, why would the virus jump species--how does it get a chance? Maybe someone can explain that. Swine flu was created at the pig farms down in Mexico, and a new book is coming out about that shortly. It was the perfect lack of regulation, and pigs and humans together. Ticks seems a bit more likely to me--blood to blood. Field mice are a preferred host of the larval ticks. Humans a common host of the nymph ticks. Eventually the virus--a mutation or variation--manages to enter human cells.

    Of course I still wonder about vaccines as well. As Peggy Munson's blog points out, two retroviral epidemics crop up at the same time (AIDS and now we call it XAND) and both are from animal virii that jumped species. Hmmm...

    Re: Mikovits' comment about oxygen and the blood cells. Maybe *that's* why hyperbaric oxygen is so important to me. Six months into my lyme infection I felt it rescued me from disability. Now I do my chamber about once every 2 weeks. OTOH not everybody responds as well to hyperbaric.

    Re: the virus being immunosuppressive. I always thought it was the lyme doing that. No doubt that I've collected various low grade infections in the last 9 1/2 years. I've added on symptoms and problems in my bladder, lungs, sinuses etc. I've got significant asthma now and did not before. I'm very reactive to my environment. My sinuses are easily inflamed and stuffed. My bladder is hypersensitive and I've had cystitis twice in the last few years--as opposed to not at all before that except in my 20's. Last winter I got this terrible cough/cold going around my doc's office but it really felled me. I was coughing like crazy and unable to sleep for several nights. My bf didn't catch it from me at all.

    Re: the anti retrovirals. Kinda scary. This would be something like vistide? (I don't know). That you get kidney and liver function tests every week? Or some of the protease inhibitors?

    Finally. How can my brain hold Mike's doc's treatment, and Joey's docs' particularly Bigelsen, and photon light plus nosodes with antivirals?

    I guess I just have to hold multiple paradigms. But that is hard. I kind of want to go with *one* paradigm and feel coherent about it.

    Re: the press release seeming unscientific don't worry yo' pretty little head about that ;). Science published this. She is using the opportunity to set the framework for the next ten years. I love her quotes there and in interviews. She's doing a great job.
  13. hvs

    hvs Senior Member

    Right. Academics on this forum will know that when you submit a paper to an academic journal for publication
    -first, the editor decides whether it's worthy of seriously considering;
    -then, he or she sends it out to three scholars in the appropriate field to poke holes into and suggest accepting, denying, or encouraging changes and new drafts; these folks are not known to those submitting the paper; they LOVE to tear apart the authors' evidence and argument; they have no stake whatsoever in whether or not it's published and, in fact, enjoy the exercise of ripping the submission apart; their only interest is maintaining the quality of the journal and field;
    -then, the editor decides based on the peer reviews whether he or she is willing to stake his or her OWN name on the quality of the paper and whether it is worthy of the journal; he or she KNOWS that others in the field will try to find fault with the paper; and _Science_ must have a big bullseye on its back as a very top-tier journal.

    Those assembling the WPI's press releases are not submitting something for peer review. And if Judy Mikovits makes bold statements to a reporter it is not the same thing as making a claim in a paper. But she was promising big things in spring (in that TV interview many of us saw) and d@mn if she didn't deliver... :)
  14. Finch

    Finch Down With the Sickness

    If you think you saw a mouse ...

    Sarahg, I work at a state vocational rehabilitation agency. I'm very curious as to whether I start hearing talk about this there. I was at work on Friday, but it was a very quiet day with few people around. This is a long weekend, so we won't be back until Tuesday. I'm guessing the Steelers (yawn) will get more talk on that day, but I'm hoping at least a few people have picked up on this. We'll see. It's great to hear that you mom's coworkers are reacting.

    For some of you who may remember this from another, more lighthearted thread, doesn't this give whole new meaning to "If you think you saw a mouse, you saw a mouse!"
  15. jenbooks

    jenbooks Guest

    Exactly. What I see her doing, in bold and heroic fashion, is establishing HOW the dialogue will unfold. She's setting the terms and knocking all potential naysayers from Reeves to Wessley (all people I've ignored) out of the ballpark.

    Now I personally want to know how this is linked to tickbites so...Eva Sapi or someone has to talk to her and get whatever assays are required to test ticks. Sapi did not ever test for virii--she tested and found borrelia, babesia, bartonella, mycoplasma, and filarial worms.
  16. Advocate

    Advocate Senior Member

    Hi Cort,

    Is there some way you can make XMRV discussion on your website easier to find? For example, could it have its own heading in your menu bar? A whole section devoted to XMRV?

    I've been discouraged by the ho-hum attitude on existing Yahoo discussion lists, and I wish I had the time and energy to start a new Yahoo list for xmrv-positive people--one that would include not only discussion of the disease but political action related to XMRV.

    You once said that you hoped that science would begin to "peel off" groups of people from the CFS diagnosis. I'd like to help move it along a little faster. I think people need to understand that if they are XMRV positive, they can no longer have a CFS diagnosis. They can be fatigued or have a host of other symptoms, but they can't have CFS. (It's going to be exciting to learn which symptoms predominate in XMRV-positive.)

    I wonder what relationship the CFIDS Association of America will want to have with XMRV-positive people, with people who are "peeling off."

    Also, where do I find the previously posted information about how I can nominate you for something?--can't remember if it's the CAA board or the CFSAC.

    Sue B.
  17. hvs

    hvs Senior Member

    Wouldn't you say, Sue, that XAND people will peel off and unfortunate folks who still have a mystery condition would keep the lowsy moniker "CFS"?
  18. Cort

    Cort Phoenix Rising Founder

    Hi Sue,

    Yes there will be a section website specifically devoted to XMRV. I'm working on it right now. Thanks!

    I'm beginning to wonder how many people XMRV is going to peel off. Dr. Cheney noted that the ratio of patients tested at his clinic was similar to that Dr. Mikovits reported. She later said that 95% of the 330 people tested demonstrated antibodies to XMRV but only 4% healthy controls. It doesn't so many right now like they're focusing on Dr. Peterson's subset.

    It'll also be interesting to see where fibromyalgia, IBS, multiple sclerosis etc. end up. One researcher speculated that this virus could be linked to many 'old' diseases.
  19. jenbooks

    jenbooks Guest

    Thanks Cort. Your site came around at just the right time and is growing nicely. To think you did all this and your blog without complaint while sleeping outside or in a truck! Unbelievable.
  20. Cort

    Cort Phoenix Rising Founder


    Hi David,

    I think the Press Release was simply designed to inform and generate publicity. The WPI is currently engaged in quite a bit of innovative research with some pretty heavy hitters in the research world. Check out the research section of the website for a nice list of projects:

    Dr. Mikovits is very optimistic about the results of this admittedly preliminary research but she's been in the game a long time and I Assume she has reason to be. She worked at the NCI for several decades. I interviewed her in Reno and she admitted that she was uncomfortable at talking to a member of the 'press' because that was a big no-no at the NCI. But now she's at a private institution that relies on donations and grants for its funding - I think she probably has to speak out.

    I'm not really worried about the next round of studies from the WPI. There will be plenty of outside laboratories ( including the CDC) that will try and replicate this.

    I believe one of the things the WPI is doing is testing contacts and family members of patients to see if they are carrying the virus. I'm sure they're involved in several other studies as well and hopefully we'll hear about them shortly.

    In short I think it was a great donation! and over time I think you'll be happy you gave them such a generous donation. :D

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