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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. Kati

    Kati Patient in training

    Just back from my family dr's visit- only caregiver so far as I am stll waiting for a specialist appointment- I showed her the WP article, gave her a copy- first she has strong reservations about it- doubts the credentialities- She spoke wieth the infectious disease specialist in otwn, who doesn't know CFIDS- and doesn't have any idea who in a large urban center could do the proper viral testing for me- so disappointing- here I am having chest pains and shortness of breath- amongs other symptoms, and that even won't give me a faster rheumatology appointment.

    As exciting as the news may be today- there is still a lot of work to be done out there. I wish there were more Dr Petersen, Cheney, Lerner and Hyde (etc) out there-
  2. leelaplay

    leelaplay member

    mixed reactions too

    My first reaction was sheer excitement + joy. We may get better!!!! Would have skipped if I could have.

    Later came a concern about transmission - should I be concerned about spreading it? Am I facing a life without kissing? Could any partners I've had now be at risk for ME/CFS, prostate cancer and perhaps other diseases?

    No body fluids were involved at the onset of my illness 8 years ago. Does this indicate a possibility that I'd been infected in with XMRV years before 2001?

    Thrilled that such big guns are behind the study. To me, indicates huge jumps in med cred, funding and media coverage to come. Think it's even more important to get rid of Reeves now though - one of the more dangerous things is a cornered rat.
  3. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US

    Three cheers for Dr. Robert Suhadolnik, who did the original work in the '90s finding the RNase L defect in CFS. It was largely because of this research that Dr. Mikovits was able to see the ties among RNase L, prostate cancer, CFS and XMRV.

    Thanks, Dr. Suhadolnik!

    And who knows...even if XMRV doesn't turn out to be as important as we think today, it could be a stepping stone to further research, as the RNase L work was.

  4. Dreambirdie

    Dreambirdie work in progress

    N. California
    I'm wondering if anyone has seen any reports about it on the mainstream media news shows? Maybe it is too soon for that yet.
  5. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US
    This must be unsettling...

    ...for Reeves. He's used to controlling the flow of information about ME/CFS. Now Mikovits has established herself as the go-to scientist on ME/CFS, reducing Reeves to defensive irrelevance, and the brilliant press office at the WPI has gotten the new study into scores of media outlets, sometimes on the front page. He's been completely bypassed!

    Actually, its probably less the WPI's public relations efforts and more the study's own merits that are attracting attention to it.

    Anyway, I picture Reeves gritting his teeth and saying, "D'oh!"
  6. Anika

    Anika Senior Member

    London Blood Samples; Recent NIH Grant related?

    I noticed at the WPI site that they and Dr. Kerr of London were awarded a grant in late September - no details at the site. This was from NIAID not National Cancer Institute. I wonder if this could be a source of the blood samples from London currently being investigated.

    If so, I wonder if a grant was fast-tracked after some of the internal discussions at NIH in July and August about the implications of the research.

    From the WPI Site:

    September 24, 2009: WPI Awarded Prestigious NIH R01 Grant

    New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome

    WPI Research Director Dr. Judy Mikovits and collaborator Dr. Jonathan Kerr of St. Georges College in London were awarded this $1.6 million grant by the National Institute of Allergy And Infectious Diseases. This 5 year grant will provide critical support for the ongoing research into the causes and diagnosis of neuro-immune diseases.
  7. dannybex

    dannybex Senior Member

    This quote is interesting...

    "Dr. Mikovits said that using additional tests, the scientists
    determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control."

    Maybe I'm in defensive overdrive, but that to me suggests that there probably are several other factors involved in this illness.

    Re the contagious question: I'm assuming the retrovirus was found in the Whittmore's daughter? They certainly must've had very close contact with her during all of her life...yet she is the only member of the family w/severe CFS...


    Very interesting too that it is slow to replicate...perhaps if one does have it, then it will be easier to treat.

    Also, I wonder if oxygen or ozone therapies might be beneficial, since that other famous retrovirus (HIV) does not survive when exposed to oxygen.

    So many questions...

  8. _Kim_

    _Kim_ Guest

    More about XMRV

    The following is a full text link to an article published September 8, 2009 Proceedings from the National Academy of Sciences of the USA

    XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors


    Why am I so interested in pictures of the virus and infected cells? Two weeks ago I was in a Biology lab class and cultured my cheek (epithelial) cells. I found an infected cell of some sort and it sure looked a whole lot like the above pictures of XMRV infected epithelial prostate cells. My teacher said it probably was just an aberrant cell - nothing to worry about, but I've been thinking about it ever since. Damn I wish I had saved that slide!
  9. jenbooks

    jenbooks Guest


    When you get infected with EBV, it's expressing various antigens (invades the cell and puts up little flags on the cell surface ie antigens that your immune system recognizes). The "strong" ones that prime a strong immune response of course elicit killing by the immune system. The "weaker" ones are the ones that survive long term in your body because the immune system grumblingly tolerates them and is not on full frontal attack against them. In 1% of your bcells the EBV virus survives quietly. UNLESS it leads to malignancy and uncontrolled replication in which case unfortunately the immune system is still grumblingly tolerating the EBV-infected wildly replicating bcells...not realizing the danger in its midst because it is all weak-antigen expressing EBV. Cell therapies exist now to train the immune system to attack the weak antigens and they have put cancers in remission this way.

    I wonder if the virulent prostate cancers linked with XMRV are similar--if it infects but the weak-antigen expressing virii are the ones that survive. And maybe so with CFS too. It isn't that your immune system *can't* fight or is disabled. It's that it doesn't realize it *should* fight. I'd love to see them apply cell therapies they are using in EBV to this if the data is confirmed. You could probably use completely nontoxic cell therapy with just a few injections to train your immune system to kill infected cells. (Unless it was so widespread in some cells that you'd damage tissue).

    Just speculating off the top of my head. Could be all wet behind the ears.:eek:
  10. Warbler512


    Great - am I a Man or a Mouse?

    :eek: This is a hell of a way to have your illness validated. Was this what DeFritas was trying to verify years ago? Hmmm?

    I could care less about Reeves - he's going to protect his behind to the end, and those butts he's covering. I'm not sure who they are, but I'm thinking are are quite a few. I'd almost wager CDC will not replicate the findings.

    Blood, semen, breast milk, and not airborne - something's missing here, and not just for this 40-year old virgin, who's never gotten a blood transfusion or suckled since birth. Of course, I don't know if I have XMRV; then I ask what a lot of us are - what of those of us who don't?

    And we're to think the North Carolina orchestra members, a girl's basketball team, teachers sharing one room in Northern California, were all having sex with each other too? Or cut themselves? O.K. How about saliva or food-borne? Even that doesn't sound like enough. I'm not even sure ticks and mosquito vectors are enough. Then again, bird/swine flu or not, would the government allow anyone to admit it could go airborne if that were true?

    If it can't go airborne, it could be just another infectious "stressor" (thanks, Dr. Reeves), or another bystander taking advantage of a system weakened by something else. I've got really mixed feelings about this announcement. Right now, it could be just another of those umteen bugs a lot of us are fighting, or not. And if it's more of a bystander in many people, is it worth hitting with retrovirals, at least in the same manner as AIDS is? Would those just screw up something else for nothing?

    Lots of questions, but I was waiting for the big announcement, and it's here. I'm glad it's out there before the CFSCC. And I'm glad someone like Cleveland Clinic and external parties are involved. Again, Reeves will fight like a cornered Tasmanian, but this will make it much harder on him.
  11. Michael Dessin

    Michael Dessin Senior Member


    I actually researched these AIDS cocktails in hopes of finding a treatment in the past. I had read a few pieces of literature saying that these anti-retrovirus meds had been tried on CFS patients with no success.

    This literature was in my old computer, if anyone has any info in this, it would be really good to hear.

    I'm so excited about these press releases, at the same time I really hate how the authors of these articles describe what CFS is.

    You would think by these findings, they would feel a little more goes wrong than just fatigue and some memory loss.

    This mouse virus is Neuro-Degenerative!!!

  12. Andrew

    Andrew Senior Member

    Los Angeles, USA
    I will try to contact WPI. I don't have much hope, though. My experience (as well as other's experience) is they ignore emails from sufferers. But I will try my best.

    A couple hours ago I spoke with my prostate oncologist. He never heard of XMRV, and didn't seem interested in knowing more. But as he was about to hang up, I asked if I could send him an email about this. He said "okay." I think I'll try to talk to my urologist about this too. He is very interested in cancer research.

    This could cause problems. The Wessely group doesn't differentiate between Chronic Fatigue Syndrome and Chronic Fatigue. And as a result, their research is not reliable. Problem is, nobody seems to care about the fact that they are testing a mixed group. And so they could complicate this.

    As for the CDC, they have been known to only test blood samples from people with only fatigue. And if they do this again, it can complicate things.

    But this time, they are facing off against NCI and other people who will be harder to mess with.

    IMO, all of this is very preliminary. This virus could be a result of weak immunity and not a cause of CFS. So I don't plan to drop my current treatment efforts because of this. But I will look into it.

    Also, I want to applaud WPI for their boldness. By putting this out early they allow other researchers to jump in. And I agree that this is a risk for them.
  13. dannybex

    dannybex Senior Member

    I agree Andrew. Or a 'dysfunctional' immune system. There's just so many questions...why did they first find 67% of the 'sickest of the sick' had this virus, then "further tests" showed that 95% had it? What were these other tests, or how were they done? And what did they mean by 'sickest of the sick'? Did they test anyone else with less severe symptoms, and if so, what were the results?

    How come 10 million in the US are estimated to have this virus, yet they don't get CFS/ME?


    No pressure Cort, no pressure! :)

  14. Aftermath

    Aftermath Guest


    This is truly a bombshell--it's pretty clear by the level of media outlets that are featuring the story: NY Times, Washington Post, Wall Street Journal, LA Times.

    Even if it does not turn out to be causative, if the findings can be replicated, it opens the floodgates to new research and funding.

    No one will be able to call this a psychological illness, and the stigma attached to CFS research will disappear overnight. Instead of making scientists pariahs among their peers for being involved with CFS research, I have a feeling that a lot of the top people will be getting in line for funding.

    At this point, this clown can't turn back. I would react the same way if I were him.

    If the findings are replicated, his career is basically over. He will forever be known as the guy who misdiagnosed and humiliated a lot of very sick people.

    Again, this is the biggest news in the 15 years since I got sick with this illness.

    At this point, I would not get wrapped around the axle with the STD angle or other transmission issues. Annette Whittemore's daughter contracted this illness at ten years old. They did not say that she tests positive for the virus, but the way that Judy Mikovits is talking about permeation rates, I couldn't imagine her not having it.
  15. MEG

    MEG Senior Member

    Asheville, NC
    I hope all this hits the press big time. Maybe NIH will free up some money, along with CDC as this is a HUGE public health concern, especially regarding our nations blood it safe?????
  16. SDD1244

    SDD1244 Guest

    I'm happy that the radio station, NPR, discussed this important finding on the air this afternoon.
  17. Cloud

    Cloud Guest

    I picture him wetting his pants, stuttering, shaking, and whistling in the dark a tune about replicating studies trying to do all he can to save face. No one wants to hear about the CDC replication studies. We have heard that crap before and know full well they will not replicate the studies with integrity. Trusting the CDC with that task would be like trusting the fox back in the henhouse for the second time believing it will behave this time.....Someone tell Reeves that his house of cards is coming down. A lawsuit for criminal negligence would be appropriate. Where's Hillary?

    What perfect timing for this release just weeks before the conference...Thank you WPI!!! Woooooo hooooooooooooo
  18. SDD1244

    SDD1244 Guest

  19. SDD1244

    SDD1244 Guest

    "I picture him wetting his pants, stuttering, shaking, and whistling in the dark a tune about replicating studies trying to do all he can to save face"

    I sure as ___ hope so !!! :D
  20. Sushi

    Sushi Moderation Resource Albuquerque


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