New, HIV-like retroviruses linked to CFS, prostate cancer detected in healthy blood donors

--Possible New HIV-like Retrovirus in Blood Supply--

In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life.  CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.  

ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.

"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."

A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.  

"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."

MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million).  Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.




  1. Kim LeMoon Kim LeMoon United States says:

    Thank you The Medical News for reporting the news about the Washington Post Ad.

    The CDC has been aware of the potential infectious nature of ME/CFS since it investigated an outbreak of the disease 25 years ago.  Yet it took a private lab to discover this debilitating disease is linked to a retrovirus.

    A small grassroots patient group teamed up to ensure our federal health agencies are using their resources to fund and thoroughly investigate the infectious agents found in ME/CFS patients like me.

  2. kathryn stephens kathryn stephens United States says:

    Have had CFS for 22 years; I'd sure like to profit off of it in some way; what stock should I buy? Hemispherx? CERUS?

    BTW, with my neurological deficits, I had a hard time understanding what 2 + 7 meant!

    Thanks for the mention, and thank you, MCWPA for the ball of wax!

  3. Ernest Cronan Ernest Cronan United States says:

       I see no research results related to aggressive prostate cancer link to XMRV in the article, only the M.E./CFS link.

       What are the research results about the XMRV-aggressive prostate cancer link?

       I was treated for aggressive prostate cancer ( dispersed Gleason 7)in 2007 ( both external beam radiation and brachytherapy ), and I have been pronounced "cured." Could I have XMRV, unrecognized because of other symptom-compatible causes?  

  4. F R Niedhammer F R Niedhammer United States says:

    Go MCWPA!  Sometimes you have to turn the spotlight on the groups who can be making a difference in millions of people's lives, if only they would.

      The year after I got CFS and fibro, the NIH changed leadership. The new leader was in the psychiatric field and promptly declared both conditions were "all in your head", and cut off research and funding.

    I hope the anti-virals being used in HIV treatments can be quickly tweaked so we can get better.

    Has anyone had the experience of having their symptoms almost erased after being sedated during medical procedures?  I have talked to others who have had this happen and wonder if induced "deep sleep" treatments could give long periods of relief to CFS/Fibro suffers.  I had relief for 6 months. I am now back where I was in March.  

  5. DB DB United Kingdom says:

    Here are some studies on prostate cancer and XMRV:

    'Identification of a Novel Gammaretrovirus in Prostate Tumors of Patients Homozygous for R462Q RNASEL Variant' Urisman A et al. (31 March 2006
    'Prevalence of human gammaretrovirus XMRV in sporadic prostate cancer' Fischer F (29 September 2008)
    'No evidence of XMRV in Irish prostate cancer patients with the R462Q mutation' D'Arcy F et al. (March 2008)
    'Lack of evidence for xenotropic murine leukemia virus-related virus(XMRV) in German prostate cancer patients' Hohn O et al. (16 October 2009)
    'XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors' Schlaberg R et al. (8 September 2009)
    'Prevalence of human xenotropic murine leukemia virus-related gammaretrovirus (XMRV) in dutch prostate cancer patients.' Verhaegh GW et al. (28 September 2010)
    'Detection of Xenotropic Murine Leukemia Virus–Related Virus in Normal and Tumor Tissue of Patients from the Southern United States with Prostate Cancer Is Dependent on Specific Polymerase Chain Reaction Conditions' Danielson et al. (J Infect Dis., 11 October 2010)
    'XMRV: A New Virus in Prostate Cancer?' Aloia er al. (American Association for Cancer Research, 21 October 2010)

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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