TWiV 76: XMRV with Professor Stephen Goff

4 April 2010

Hosts: Vincent Racaniello and Stephen Goff

Vincent speaks with Stephen Goff about the origin of the retrovirus XMRV and its association with prostate cancer and chronic fatigue syndrome.

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  • Tina

    Thank you so much for interviewing this researcher. I am a CFS patient since 2003, becoming severely ill in July 2006. Since then I have recovered some, only to relapse after catching H1N1 in October of 2009.

    One thing I will suggest is that you use the complete name for CFS. The name is controversial, and using “chronic fatigue” is even worse. Calling it chronic fatigue syndrome is like calling diabetes “chronic thirst syndrome.” Calling it “chronic fatigue” is like calling diabetes “chronic thirst.” At least adding “syndrome” shows it is an illness and not just one symptom that everyone gets from time to time. (Although, the word “syndrome” is now often used for non-illness conditions.) Many people experience chronic fatigue without having the severity to cause disability. Many have chronic fatigue have other illnesses. It is the second most common complaint people have when they see the GP.

    But chronic fatigue syndrome is a specific illness, name given by the CDC, different from the others that have fatigue as one of its symptoms. So please, if we have to live with chronic fatigue syndrome moniker, don't take away our “syndrome.” It is easier to say “chronic fatigue.” But it is not just that, it is a syndrome, a distinctive illness from other causes of fatigue. So if for no other reason than clarity, the whole name should be used or the acronym, CFS, not CF.

    That brings me to a second point. While fatigue is commonly the most noticeable, constant symptom of the illness, I heard no mention of the question of whether XMRV could explain the other very prominent and very common symptom seen in CFS patients, cognitive dysfunction. This symptom can be so severe as to be the reason some are not able to work. These include dysnomia, dyscalculia and difficulty in learning new tasks that involve multiple steps.

    This also is supported by multiple studies that show small, multiple punctate lesions in the frontal lobe of CFS patients. As one might imagine, such a symptom also causes some to lose their ability to perform on the job, leading some to files for disability based on this symptom, also.

    While I know your show was not about CFS symptoms, the questions that were solely about fatigue might give the impression that fatigue is the only symptom that requires a causal explanation. This is a common misconception I hope you and Gow don't suffer from.

    The better question should have been: “Is there any explanation of how XMRV may cause the symptoms of chronic fatigue syndrome, such as fatigue, cognitive problems, sleep dysfunction, muscle and joint pain, headaches and the many others?”

    My point is that fatigue, although the basis for the name, does not in any way describe our symptoms. So a discussion of what might cause the syndrome, should include whether XMRV could cause the other symptoms too.

    But thanks again for giving this important research some air time.

    Tina

  • Jack

    It is disappointing that retrovirologists have no knowledge of the scientific and historical evidence of the human disease linked to XMRV, and the incomparability of the cohorts selected for the flawed UK studies. WPI (in association with the NCI and Cleveland Clinic) is right to claim superiority here and to dismiss these UK studies for their political expediency. They are well acquainted with the politics that have kept the scientific community ignorant of an epidemic disease that is as destructive as HIV or M.S.

    What the CDC dismissively calls CFS has been studied since the 1930s, epidemics of a disease resembling poliomyelitis occurring in many parts of the globe. The British named this CNS disease Myalgic Encephalomyelitis (M.E.) and the WHO has maintained its neurological classification since 1969. Viral etiology and comorbidity has been associated with this disease throughout its long history and the pathology of the disease is testable and definable, it is not a diagnosis of exclusion.

    The CDC invented the trivial term CFS and a policy of denial to cover up the fact that not only AIDS but another disease of acquired immune dysfunction was ravaging people's lives. Myalgic Encephalomyelitis, the CNS disease causing multiple system dysfunction and severe disability, was written out of American scientific understanding under the cover of CFS and fraudulent claims of no pathology, a convenient ‘diagnosis of exclusion’ in which any test that demonstrates underlying pathology is ‘excluded’.

    The effect of this political skullduggery is evident in your discussion of how XMRV relates to “fatigue” when you should be comparing HIV and AIDS encephalopathy to the finding of a new infectious retrovirus in a similar disease model of brain and immune dysfunction in the Myalgic Encephalomyelitis patients. Prof Malcolm Hooper in the UK should be wisely consulted, it is essential that retrovirologists understand the pathology of M.E. and how this disease could be so strongly associated with XMRV.

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  • GHL

    Great interview! Fascinating and understandable. Thank you. I look forward to the follow-up as more data comes in.

  • dancer

    Could XMRV be transmitted to humans by ticks that feed on mice?

  • brightraven

    Thank you for this insightful and informative discussion on XMRV. As an XMRV positive CFS patient, I have great interest in the subject.

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  • ironsides

    I have often wondered this myself, especially after getting sick in 2004 and my son getting sick in 2006 with virtually the same symptoms. I have been diagnosed with aseptice meningitis, hereditary hemochromatosis, CFS, Fibromyalgia/arthralgias, arrhythmia, and possible MS and my son with Celiac Disease. Nothing will convince me this is a sexually transmitted disease. We had both been bit by ticks and tested for lyme initially when all this began. I am not a scientist but when more than one person gets bit by a tick and both contract lyme like illness afterward maybe someone should look at ticks and what other diseases besides lyme they may be carrying.

  • John

    I'm confused about this. With all the talk of MLV's rescuing ERV's from mouse/human cell exchanges/interchanges, is it possible that XMRV rescues HERV's?

    Thanks for any help.

  • John

    I'm confused about this. With all the talk of MLV's rescuing ERV's from mouse/human cell exchanges/interchanges, is it possible that XMRV rescues HERV's?

    Thanks for any help.

  • David

    Hi……thank you so much for the attention you gave and the frequency with which you refocused on…..Chronic Fatigue Syndrome. In return, as a gesture of appreciation I'll not post the thousand word comment here that would amplify what other commenters have expressed about the severity of symptoms and depth of neglect to the underlying / primary cause that…..even on our most cognitively challenged days…..quite consciously frustrates, disappoints, and most importantly devastates our quality of life.

    Regarding this TWiV episode's discussion…..would surveying Chronic Fatigue Syndrome / XMRV research study participants' fathers / grandfathers to determine prevalence of paternal prostate cancer markers potentially provide additional evidence that XMRV is present in the paternal side….and if so, would that inspire further investigation as to whether a scenario whereby an XMRV infected dad with high prostate cancer markers passes the XMRV (either genetically or simply by inevitably frequent close physical contact) to a child, whereby the virus manifests as Chronic Fatigue Syndrome?

    Thank you again for all that you are doing to advance the research efforts related to Chronic Fatigue Syndrome.

    CHEERS!

    David

  • http://www.virology.ws profvrr

    I asked Steve Goff to answer your questions:
    Well, the only potentially inherited aspect we know of is the RNase L polymorphism, which may confer susceptibility to viruses in general. This marker has been shown to exhibit linkage with prostate cancer prevalence in just such studies. The linkage is rather weak, but essentially this is already known.
    A difficulty with this sort of analysis is that the infection with the exogenous virus will tend to obscure the linkage, since the virus DNA is not inherited. There are no proviruses in the germ line (yet), and the virus per se is not inherited.

    The passing of XMRV within a family by infection is certainly a possibility, but that would be best explored by direct tests for the virus in family members. The disease aspect can thus be eliminated as a confounding variable. These sort of epidemiological studies are being done (though at the moment even the existence of the virus in the human population at all is questioned by some investigators).

  • David

    Hey Professor(s)…..your reply shows convincing evidence of both a remarkable commitment to follow-up with your readers (and listeners) and an attention to detail via the comprehensive response. While to the best of my knowledge there is not (yet!) a widely available, standardized, reliable, non-invasive test for XMRV…..my fingers are crossed that such a test will complement ongoing research into the possible link between XMRV and Chronic Fatigue Syndrome…….and my heart holds hope that you will continue to sustain interest (your own….and that of your colleagues, the broader medical community, and the media) in the effort.

    Thank you again, guys!

    CHEERS!

    David

  • krishna Gupta

    Well sir what  ever you said about Chronic Fatigue Syndrome is very informative but your link does not provide all the information about this kind of disease

    Cause of Chronic fatigue syndrome