Friday, January 21, 2011

XMRV and Hope

Sometimes I think of my life as having two parts. The full and active life I had before being diagnosed and the shadow life after the onset of ME/CFS.

Things have changed. Today, I am hopeful that there will be a third part to my life. The life where XMRV and related viruses are diagnosed and researched. The life where drug trials begin and remedies are found for this debilitating disease. A life that doesn't require that I rest up after every small activity. A life where I am strong and once again self sufficient.

Make no mistake about it, the time to put an end to this misunderstood, life-stealing disease is near. This blog is about the research that is already changing the way we view ME/CFS. We are just at the beginning. Much more research is needed. Here is the story of XMRV and hope.

 In 2009, Whittemore Peterson Institute scientists discovered a significant link between a newly-found retrovirus, xenotropic murine leukemia virus-related virus (XMRV), and the neuroimmune disease, ME/CFS. Their ground-breaking discovery was published in the world-renowned journal Science, on 8th October, 2010.

http://www.wpinstitute.org/xmrv/docs/wpi_pressrel_100809.pdf

http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

This discovery brought renewed interest to the much-maligned disease and a flurry of research was conducted in order to confirm the link.

On August 23rd 2010, US government scientists validated the link, announcing they had found an association between a family of infectious murine leukaemia viruses and ME/CFS. They reported that 87% of those sampled carried at least one of the retroviruses, along with 7% (1 in 14) of the healthy controls.

http://www.rescindinc.org/fdanihpressconf.mp3

http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html

http://www.pnas.org/content/early/2010/08/16/1007944107.full.pdf+html

XMRV is similar to HIV, the retrovirus that causes AIDS.

Following the validation study several countries banned ME/CFS patients from giving blood. In many cases these bans are for life.

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/

If you would like to donate a regular, small amount to help push this research on, then please consider participating in the COUNT ME IN campaign. For more details visit: http://www.facebook.com/note.php?note_id=160913563956987

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Here are some links you might want to use:-

Key Scientific Papers & Related:

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome Science http://www.sciencemag.org/content/326/5952/585.abstract?keytype=ref&siteid=sci&ijkey=m3wzKT4yJqEyk

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donorshttp://www.pnas.org/content/early/2010/08/16/1006901107.abstract

Aug. 23, 2010 – Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors PNAS FDA Press Briefing http://www.wpinstitute.org/news/docs/FDAbriefing_082310.pdf


Blood Donor Bans:

http://mcwpa.org/in-the-news/blood-donor-bans/


Pertinent News & Blog Reports:

A Big Splash From an Upstart Medical Center New York Times http://www.nytimes.com/2009/11/12/giving/12SICK.html

New Hope in Fatigue Fight Wall Street Journal http://online.wsj.com/article_email/SB10001424052748703846604575447744076968322-lMyQjAxMTAwMDIwMzEyNDMyWj.html

Viruses Found in Chronic Fatigue Syndrome Patients – National Institute of Health NIH Research Matters http://www.nih.gov/researchmatters/august2010/08302010chronicfatigue.htm

The Lingering Mystery of Chronic Fatigue Syndrome http://well.blogs.nytimes.com/2011/01/03/the-lingering-mystery-of-chronic-fatigue-syndrome/?ref=health

Exhausted by Illness, and Doubts http://www.nytimes.com/2011/01/04/health/04fatigue.html

XMRV and CFS – It’s not the end http://www.virology.ws/2010/12/22/xmrv-and-cfs-its-not-the-end/

Gearing Up for the Big Search for XMRV http://blogs.wsj.com/health/2010/11/17/gearing-up-for-the-big-search-for-xmrv/


Other XMRV Links:

Cleveland Clinic - 40% of patients with aggressive prostate cancer have XMRV http://www.plospathogens.org/article/info%3Adoi%2F10.1371%2Fjournal.ppat.0020025

XMRV: Virological, immunological and clinical correlations in patients with chronic lymphocytic leukemia and mantle cell lymphoma http://www.wpinstitute.org/news/docs/Snyderman_XMRV.pdf

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract http://www.cdc.gov/eid/content/16/6/1000.htm

COMPOSITIONS AND METHODS RELATING TO XMRV-RELATED DISEASES AND CONDITIONS http://www.wipo.int/pctdb/en/wo.jsp?WO=2010132886&IA=US2010035144&DISPLAY=DESC

Of mice and men: on the origin of XMRV http://www.frontiersin.org/virology/10.3389/fmicb.2010.00147/abstract

XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway
http://esme-eu.com/news/xmrv-retrovirus-found-in-62-of-me-patients-tested-in-lillestroem-norway-article440-7.html

THE PREVALENCE OF XMRV IN HEALTHY BLOOD DONORS IN JAPAN http://www.diagnosesupport.com/health/index.php?option=com_content&view=article&id=305%3Athe-prevalence-of-xenotropic-murine-leukemia-virus-related-virus-in&catid=132%3Axmrv-research&Itemid=8

1st International Workshop on XMRV: Abstracts in Reviews in Antiviral Therapy & Infectious Diseases 2010_8. Abstracts http://regist2.virology-education.com/abstractbook/2010_8.pdf

Distribution of xenotropic murine leukemia virus-related virus (XMRV) infection in chronic fatigue syndrome and prostate cancer Pubmed.gov http://www.ncbi.nlm.nih.gov/pubmed/20842203?dopt=Abstract

A Third Pathogenic and Lymphotropic Human Retrovirus AIDS Review
http://www.aidsreviews.com/files/2010_12_2_121-123.pdf