XMRV Bloggerama Day

I have been ill since April 2009. Prior to this time I was an extremely active and busy person with a life I absolutely loved. I caught a flu like virus following a walking holiday and have never felt well since. I have been from doctor to doctor and not one has been able to give me a definitive answer to what is wrong with me. I have been told that I have “Chronic Fatigue Syndrome” which in my opinion is a highly unhelpful diagnosis which doesn’t really mean anything. I have done research into my condition and it seems that the illness that seems to match the symptoms I have (flu-like feeling, constant head pressure, sore throats, swollen glands, weakness, dizzyness and pain in my spine) is ME.

When I first started researching the illness it seemed that there had been a fair amount of research done but either 1. it had been ignored or 2. not come to any solid conclusion. On 9th October 2009, I received a text from my father who had just heard on the BBC Radio 4 morning news that “XMRV virus has been linked with M. Ever since then, it still continues to be the most talked about piece of ME research, despite controversy in the press.

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.

This research DESERVES more time and money spent on it. It is important to find out why such a high percentage of ME patients are testing positive for XMRV. I do not yet know my XMRV status as I am waiting for my result that was part of a study.

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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14 Responses to XMRV Bloggerama Day

  1. Jan Laverick says:

    Great blog post Emily and on a very important topic.

  2. Andrea Pring says:

    Thank for sharing your story, Emily, and for pointing out the strong link to the retrovirus, XMRV. We desperately need funding to enable the research to continue. Without the funding 17 million people will remain desperately ill and possibly contagious. Let the research continue! Fund the WPI.

  3. Tina says:

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

  4. Lori says:

    Great Article Emily. Thank-you for helping spread the word about XMRV and ME.

  5. While I hate to welcome anyone to this “club,” thank you for letting your voice be heard. The Whittemore Peterson Institute has brought so much hope to all of us and the XMRV discovery also brings great validation.
    Go, WPI!

    Jenni Saake
    XMRV positive, sick with M.E. / CFS 20+ years

  6. m middleton says:

    Brilliant blog Emily – XMRV research is so important

  7. Paul says:

    Brilliant Blog Emily.

    We need funding into bio medical research in to M.E. and in particular the link between M.E. and the XMRV virus.

    Your story is all too common. Thank you again Paul.

  8. Lynn says:

    Thank you for the blog, Emily. It’s time for people to know the truth about XMRV and ME/CFS.

  9. lhseth says:

    Your experience is similar to so many patients. It is clear to me that there is an agent quite possibly viral. The findings of Lombardi et al in Oct 2009 confirms what many doctors have suspected in following patients. I would call upon medical professionals to join me in supporting funding for further research.

  10. Michele Krisko says:

    Thank you for shedding light on this little understood subject of a human retrovirus and it’s connection to the disease you and so many others suffer from. It is imperative that governments make sufficient funding available and provide them to competent research facilities such as The Whittemore Peterson Institute who pioneered the work in finding this XMRV retrovirus in ME/CFS.

  11. Chris Evans says:

    Great blog, thank you for all the great information, lets hope that the WPI get more funding to carry on with there fantastic work in ME…

  12. Kari says:

    Thank you for this wonderful post. Getting the word out is so important!

  13. Tina says:

    Story is often the same, flu, mono or other infection triggers it.

  14. zzirf says:

    me/cfs has always felt like a horrific virus to me so this makes big sense.

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