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January 21, 2011 / zzirf

Today I am blogging for XMRV research

A retroviral link with ME/CFS was first discovered by Elaine deFreitas 20 years ago but did not gain funding and was dismissed. The Whittemore Peterson Institute has itself has been turned down 6 times for research grants from public funds. Many patients are now determined that this will be not be allowed to happen again. We have been left to remain far too sick for far too long and, tragically, many have not lived to see the dawn of this new and exciting avenue of biomedical research.

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.

xmrv in the blood supply?

For more information on XMRV and the Whittemore Peterson Institute, please visit the following site: http://www.wpinstitute.org/
On another note, patients have had enough of certain researchers and practitioners appearing intent on either ignoring or disputing all research that does not accord with their false belief that ME/CFS is not an organic disease.
ME sufferer Maxine had the idea of using the 20th of each month to donate to the Whittemore Peterson Institute to show our trust and support for the integrity and quality of their ground-breaking scientific research.

We realise that this research may conclude that our disease is not caused by a retrovirus – but until then it is a very plausible explanation for the chronic, on-going nature of the illness and its numerous and varied symptoms, and is not incompatible with other viral involvement in the disease. ME has always been known to be post-infective, hence its alternative name at the World Health Organisation International Classification of Diseases -10 G.93.3 – of Post-Viral Fatigue Syndrome (for UK, CFS is annexed to this).

If you feel strongly that you want to start donating straight away, then you can donate via the WPI website or the Cure for ME Causes on Facebook: if using PayPal, put COUNT ME IN under “special instructions”.

http://www.wpinstitute.org/help/help_donation.html
(no minimum amount)

http://www.causes.com/causes/399439-cure-4-me?m=97969829 or http://countmeincampaign.blogspot.com/ (causes has a $10 minimum amount)

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18 Comments

Leave a Comment
  1. Kati / Jan 21 2011 3:56 AM

    Great blog post. It is time that ME patients get recognition, socially and from our governments. Patients have suffered long enough. It is time that science funds ME and that clinical trials happen.

    • zzirf / Jan 26 2011 12:05 AM

      I agree Kati

  2. Andrea Pring / Jan 21 2011 1:55 PM

    Thank you for this post. It’s imperative that XMRV research be allowed to continue. We need funding.

    • zzirf / Jan 26 2011 12:04 AM

      thanks for your blogging and advocacy too Andrea.

  3. Jan Laverick / Jan 21 2011 2:04 PM

    Thank you for this important and informative blog post, I agree it is essential that XMRV continues.

    • zzirf / Jan 25 2011 11:58 PM

      Thanks Jan, I agree XMRV research needs to continue and it’s hard to believe that the Whittemore-Peterson Institute has been denied Government funding yet a ban on blood donations is in place.

  4. The Resistance / Jan 21 2011 2:06 PM

    Thanks for publishing this. I urge everyone who is unfamiliar with this topic to read up on the WPI and donate even just a dollar if you can. Tranform our lives today.

    • zzirf / Jan 25 2011 11:59 PM

      Thank you for your advocacy work too 🙂

  5. Lill-Tove Greieralt / Jan 21 2011 3:52 PM

    Hello. Thanx so much for blogging. I was beleiving i would make this today, but since i never blogged before…it was not that easy as i had presumed. That is so totally great that this is possible tho! Will come basck at a later time, with my “input” on this. Its not easy to live with this virus, see clearly that it is also on others in the family. Worsest is when its affecting a child. They should be spared for this. Its NOW up to us to decide this better, -now we know about the XMRV. Earlyer we planned to have children – now longer not… Hopefully others DO take this chance about this, that we dont dare to do…we are so afraid to bring a sick child into life. That is not much of a easy life! Best wishes to all and everyone who are contributing to the research on all of this. ❤ Best wishes to all who work with, or working with it inside of them… Lets hope that the nearest future will bring us some more finally answers to this. Take care ❤

    • zzirf / Jan 25 2011 11:47 PM

      Sorry that this illness has affected your life decisions so much. I have children who do not appear to have ME so maybe we are not contagious beyond a certain time. We need more xmrv research to know for sure.

  6. Tina / Jan 21 2011 4:07 PM

    Interesting. If this retrovirus is the cause, then WPI should get the Nobel prize.

    • zzirf / Jan 25 2011 11:43 PM

      I’d have to agree with that Tina

  7. lhseth / Jan 21 2011 8:02 PM

    It can be difficult for doctors to incorporate new information. I hope medical professionals will be open to the exciting implications of the new research and will join me in doing everything we can to support funding. Thank you for your blog. Dr.Seth

  8. Liz Willow / Jan 21 2011 8:03 PM

    Politics should not prevail over science, but that is what is happening with the XMRV/MLV connection to ME/CFS discovered through the intiative of the Whittemore-Peterson Institute. Despite confirmation of this finding by prestigous researchers from the US National Institutes of Health and Food & Drug Administration, shoddy studies claiming to refute this are receiving unwarranted press. This must stop.

    • zzirf / Jan 26 2011 12:03 AM

      It is a pity that the press jump too quickly to report biased research – but we know that biased research is not really scientific research at all.

  9. Kari / Jan 21 2011 10:12 PM

    Lots of great information here. Thank you for posting!

    • zzirf / Jan 26 2011 12:01 AM

      Thanks Kari, be well.

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