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Top scientists to meet at Cleveland Clinic on trial of XMRV

Discussion in 'XMRV Research and Replication Studies' started by Katie, Nov 10, 2009.

  1. Katie

    Katie Guest

    Has anyone seen this yet, a friend just sent me the link. This is brilliant news. If the big hitters in various fields are going to be publishing XMRV studies in their own areas, it'll be able to counter any codswollop that the CDC come out with if they don't realise that they should probably do this one properly. I've picked up three names from this article so far that will possibly be there:

    - John Coffin
    - Robert Silverman (discovered XMRV in prostate cancer patients)
    - Ila Singh (an author of the prostate article)

    Here's the article:

    The virus XMRV has become a favorite topic in the scientific community -- three years after its initial discovery in prostate cancer tumors by researchers from the Cleveland Clinic and the University of California, San Francisco.

    In October, a team of researchers from the Clinic, the University of Nevada at Reno and the National Cancer Institute reported finding the virus in the majority of patients they studied who had chronic fatigue syndrome. CFS is a debilitating disorder marked by profound fatigue, muscle pain, impaired memory and other symptoms. Its causes are unknown.

    That news came on the heels of another study, published in September, that revealed the virus could be an important marker for aggressive prostate cancer tumors.

    Capitalizing on the excitement and heightened spirit of collaboration, 75 of the top scientists nationwide studying XMRV are flying in to convene Wednesday at the Clinic.

    "This is the first meeting of the major players in the area of XMRV," said John Coffin of the department of microbiology at Tufts University in Boston. "I think there's going to be a lot of excitement and a lot of new information presented."

    XMRV is one of three known human retroviruses. The other two are HIV and HTLV (a type of virus that infects white blood cells and can cause leukemia and lymphoma). All three are transmitted through bodily fluids.

    One of the most striking things about XMRV is that there are indications that up to 4 percent of people in the United States carry the virus, said Coffin, who wrote an editorial accompanying a journal article on the link to chronic fatigue syndrome. "There might be other consequences of this infection," he said.

    The invitation-only gathering will be the first large meeting of scientists on XMRV since the National Institutes of Health's closed-door session last summer on the topic.

    The National Cancer Institute helped pull together key people involved in various research projects, said Robert Silverman, a cancer biologist at the Clinic's Lerner Research Institute. "It's been about two months in the making."

    It will be a chance for researchers not only to swap information but to form new collaborations.

    "We're learning things at such a rapid pace that we need a venue to exchange ideas and information," said Dr. Ila Singh, a professor in the University of Utah's department of pathology and senior author of the research involving prostate cancer patients.

    "I'm hoping for a deeper understanding. We know so little at the moment. I'm hoping to learn more about the virus," she said. "That's what's sorely lacking. There's a lot of speculative information . . . I want to know what's real."

    In advance of Wednesday's meeting, Silverman, one of the researchers credited with the initial discovery of XMRV, spoke with The Plain Dealer:

    How did XMRV get its name?

    It's a descriptive name. Xenotropic, which means the virus came from mice but mice are immune to its effects. It does affect other animals. Murine leukemia, which is the parent virus. Related Virus.

    How does XMRV affect animals?

    XMRV is closely related to a virus that causes leukemia, lymphoma and neurological diseases in animals. [Research] suggests that the human version could cause similar disease.

    How did humans acquire XMRV?

    We probably acquired it from mice because that's where the prototype exists. At what point it crossed over to humans we don't know. It's probably something that's been out there for a long time. Maybe many years.

    How is XMRV spread?

    That research is in the planning stage. What we're doing is trying to develop diagnostic assays to assess who has it and who doesn't. We're trying to determine how the virus is transmitted.

    With the new possible link to chronic fatigue syndrome, does this make getting funding for XMRV research easier?

    The funding part remains to be seen. There's been a tremendous interest in chronic fatigue syndrome. I've been getting almost nonstop calls from doctors and patients. They're obviously looking for hope in this study, although the virus is not proven to cause CFS. That's still unknown. But until it's ruled out, it's going to obviously be a subject of great interest.

    Have the research gains since your findings three years ago been significant enough that investigators are hopeful about what may be around the corner?

    It was kind of a sleeper. We published in 2006. There were really only a handful of papers published in the first couple years. It takes time for scientists to mobilize and perform research. Now there's a flurry of publications working on it. The field is exploding. It depends on whether we can nail down if this is a disease-causing virus. The potential of this is enormous. If it is proven to cause prostate cancer or chronic fatigue syndrome, then there would be the potential for new methods of diagnosis, new methods of treatment -- antivirals, even for prevention. That's why we're so excited about the prospect.

    What about the recent study by German researchers in the journal Retrovirology that found no link between XMRV and prostate cancer?

    It is not atypical of science for different groups to get different results. There could be methodological differences. I believe our methods were more sensitive. They may have missed it. Or it could be a different strain. Another interpretation is that the virus is more prevalent in the United States than in Germany.

    Why should the average person care about XMRV?

    We don't know at this point if the virus causes either prostate cancer or chronic fatigue syndrome. Our results suggest that XMRV is a candidate for causing human disease. However, it's still in a relatively early stage of the research. There are potentially major public health implications of this virus, so there's an urgency to figure it out and move forward.

    What is the Clinic working on now in relation to XMRV?

    We're working to help develop a diagnostic test that could be applied to a large number of people. It could be developed pretty quickly, maybe in a year or two.

    We're really studying how the virus could cause disease at a very fundamental level. But a vaccine could be 10 years [away] or maybe longer.

    This is exciting research. We're working as hard as we can to help benefit patients.
  2. mezombie

    mezombie Senior Member

    East Coast city, USA
    Great news!

    NCI is part of NIH; we've got the big guns on our side. Anything CDC comes out to discredit the WPI or future studies will be meaningless.

    Thanks posting this find, Katie!
  3. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Wonderful news! :D Yay! Go scientists!
  4. Sing

    Sing Senior Member

    New England
    Katie's report

    Thank you so much, Katie! This is great news, very clear--promising developments. The leaders in the field are getting oriented to mobilize their troops for an intelligent advance--

    And I feel that we are going to be beneficiaries however exactly it turns out, because finally we have competent, interested scientists moving into the obscurity of our landscape.

    Cecelia with a metaphoric mind
  5. Katie

    Katie Guest

    Just a quick question following on from something Koan said about this article in another thread about the concise explanation of ME/CFS.

    Did have a problem in America/Canada with the term 'yuppie flu' cropping up in every article about ME/CFS?

    We've not had many follow-up articles in the UK, not surprising really when Wessely is the media's go-to-guy, but you can bet on the term 'yuppie flu' appearing in some context. I've noticed a distinct absence of 'yuppie flu' in the US/Canadian based articles I've read so I was wondering if you've seen a sudden decline or whether it's actually a defunct term on your side of the planet.
  6. _Kim_

    _Kim_ Guest

  7. anne

    anne Guest

    We live in Cleveland, and the Clinic is horrible on CFS. Exercise, CBT, mood disorders. With any luck this will start some change....
  8. dannybex

    dannybex Senior Member


    I hate to be a nitpicky Danny-downer, but this sentence isn't correct, is it?:

    "XMRV is one of three known human retroviruses. The other two are HIV and HTLV (a type of virus that infects white blood cells and can cause leukemia and lymphoma)."

    There are thousands of known endogenous human retroviruses, some that may even be beneficial. Perhaps they meant to say 'three known pathogenetic human retroviruses?

    Still, even that may not be true, because according to this study, several endogenous retroviruses have been linked to MS:

    Anyway, didn't mean to hijack the thread. I'm certainly no scientist, but just trying to see the forest for the trees. It IS great news that all these researchers will be meeting, and esp that the NCI is involved big time...thanks for posting it Katie!

  9. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

  10. anne

    anne Guest

    Three known infectious retroviruses
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    other groups

    Some have said they didn't like for CFS researchers to collaborate with research institutions for other diseases. I disagreed. And I think we see the results.

    We can't seem to get serious research funding for CFS, so why not collaborate with research for other illnesses to get beneficial knowledge for our illness, while using their money.

    Not to mention, having powerhouses such as NCI and others with long-standing reputations helps too.

    I want to say, from a public relations standpoint, WPI has done everything right in handling this discovery. I don't know how Mikovitz kept her mouth shut until it was published. But she did. (although she gave hints earlier). And it was backed up by NCI when the announcement was made.


  12. Summer

    Summer Senior Member

    Just in on WPI's Facebook

    Just in on WPI's Facebook:

    Dr.Mikovits is on her way to Cleveland to discuss XMRV with 74 other scientists:) 14 minutes ago via Facebook for iPhone
  13. leelaplay

    leelaplay member

    NIH on retroviruses

    Danny - you MUST stop seeing yourself that way!!!!;):D

    Your question got me concerned as this statment has been out there from the beginning. I, therefore, thought this is the 3rd human retrovirus to be discovered.

    I did a net search and the 1st answer I got was from the NIH (my spacing and bold)

    Then, the rest of the article only details htlv and hiv. THere are no general clinical manifestations given for exogenous retroviruses and no others listed.

    How odd that they are not more clear! They give htlv and hiv as examples of exogenous, but say nowhere if there are other ones.

    From the fact that no other exogenous retroviruses are described, I can only infer that they are implying that these 2 are (ie were, pre-xmrv - oh, I see they haven't updated the article yet) the only 2 that are known to be human to human transferable, ie exogenous.

    Seems very bad scientific writing to me!

  14. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

    That rocks even harder.

    There are a lot of people, including a whole truckful of awfully smart and tough minded virologists, who wont want to swallow a CDC paper based on some odd CFS definition that hauls in every sad sack in town.

    For example, the amount of money that can be made on this by drug companies is incomprehensible, assuming they can do something thats more than 40% effective or so. And its not unlikely that they can.
  15. hvs

    hvs Senior Member

    Rock on. :)
  16. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    This is making my day, just knowing all those smart, smart people are converging to work on *our illness*. I'm happy. To echo what others have said: (ahem) ROCK ON SCIENTISTS!
  17. Marylib

    Marylib Senior Member

    New Zealand
    They are meeting on XMRV, not ME/CFS

    It's the prostate cancer link that will get us places. On the coat tails of a disease that men get...that involves their private parts! Which are very important to them. Much more important than people with CFS...
  18. margib

    margib Senior Member

    Austin, TX
    good thing we have dr.mikovitz!
  19. Advocate

    Advocate Senior Member

    I was happy to see that the first reader's comment at the end of the article in the Cleveland Plain Dealer was not about CFS. It was about prostate cancer: "I'm hopeful for any scientific development in prostate cancer that takes us away from PSA (prostate specific antigen), which has been the mainstay of diagnosis of prostate cancer."

    When gay men started dying from Acquired Immunodeficency Syndrome, the government and the blood banks and the media (and even gays themselves) were not interested in finding the virus. It wasn't until hemophiliacs and women started getting AIDS that interest perked up.

    As long as the CDC was able to trivialize CFS and confine it to neurotic women no one was interested in looking at the science. So bring on the prostate cancer research.
  20. George

    George Guest

    Correct! The difference is "endogenous" versus non endogenous. In other words it jumped species and has now become as you say above "Potentially Pathogenic". HIV jumped species from apes, HTLV which I think but am not sure it jumped from the bovine or cattle family, and now XMRV which as best know at this time jumped from the mouse family.

    all of these retroviruses (= an RNA virus that is replicated in a host cell via the enzyme reverse transcriptase to produce DNA from its RNA genome.) are normal and cause no problem in their endogenous species. When it jumps species it can cause problems.

    The original MLV = murine leukemia virus; causes no problem in mice however, it has jumped species or mutated and been found in other mammals before this. Several studies have been done showing the problems created by the MLV virus in other mammals.

    Some of these studies indicated both heightened risk for leukemia, lymphoma and neurological problems. No problem as long as humans are not effected. But now the evidence is that the retrovirus has jumped species again and Humans are infected. Because of the sets of people that showing up with the virus, CFS, atypical MS also a study was done in May of this year wich showed XMRV expressed in ALS it's pretty obvious that there are problems that may be associated with the virus.

    That's why this is rolling so fast.

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