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

11 comments:

  1. Thanks for helping spread the word. WPI is giving us real hope in the fight against XMRV and ME/CFS!

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  2. Great Blog Lynn ....giving us all a chance to be noticed!

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  3. thank you for taking your time and precious energy to bring accurate education on the matter of ME and the XMRV retrovirus. The governemnts need to take this very seriously for the sake of those 17 million who are already sick and to protect those who as yet are not.

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  4. Yes! The hope for Part III, so beautifully expressed. If everyone who reads this would contact their elected officials and demand research funding for XMRV, then you and I and 17 million others might make it to part III, and millions more might avoid ever having to experience the devastation of Part II.

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  5. Your post is so much appreciated!!! Thank you!

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  6. If the retrovirus turns out to be the case, then the WPI scientists deserve the Nobel Prize.

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  7. Yes to Hope! It is wonderful to have something to hope for, to look forward to - a better life. Good thoughts!

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  8. People don't realize it but the WPI is one of the most outstanding institutions that has ever been put together is the US. This is a good list of links, thanks.

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  9. thanks Lynn. Great job. I too have hope of a 3rd phase for our lives.

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  10. Things are changing, the ball is rolling. Thanks to the WPI push.

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