Friday, 21 January 2011


I have always been looking for that White Steed, I hoped that a handsome knight might be aboard, however it was not to be. Like Snow White I was stricken down, to be alive but not to live.  I am still waiting for a Prince to cure me, to bring me out, out of my unlife. Years have passed 18yrs to be precise but no Prince arrived to kiss me awake, & bring me back to life yet there came hope, in another Shere murmurs grew out of a foreign castle, murmurs that I may not need to wait for that elusive Prince.

  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.

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.

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:

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:


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

Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

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

Blood Donor Bans:

Pertinent News & Blog Reports:

A Big Splash From an Upstart Medical Center New York Times

New Hope in Fatigue Fight Wall Street Journal

Viruses Found in Chronic Fatigue Syndrome Patients – National Institute of Health NIH Research Matters

The Lingering Mystery of Chronic Fatigue Syndrome

Exhausted by Illness, and Doubts

XMRV and CFS – It’s not the end

Gearing Up for the Big Search for XMRV

Other XMRV Links:

Cleveland Clinic - 40% of patients with aggressive prostate cancer have XMRV

XMRV: Virological, immunological and clinical correlations in patients with chronic lymphocytic leukemia and mantle cell lymphoma

Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract


Of mice and men: on the origin of XMRV

XMRV retrovirus found in 62% of ME patients tested in Lillestrøm, Norway


1st International Workshop on XMRV: Abstracts in Reviews in Antiviral Therapy & Infectious Diseases 2010_8. Abstracts

Distribution of xenotropic murine leukemia virus-related virus (XMRV) infection in chronic fatigue syndrome and prostate cancer Pubmed.gov

A Third Pathogenic and Lymphotropic Human Retrovirus AIDS Review


  1. Great blog, so much information, may take me some time, but thank you for this, the WPI has given so much hope for all us sufferers, thanks chris x

  2. Great blog.....thank you. Hopefully, this will help truly educate others.

  3. Hopefull sharing this information will make a difference. I'm encouraged by how wholeheartedly bloggers have taken up the challenge to post about XMRV.

  4. 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.

  5. Love the word pictures! Beautiful writing. :)
    Thank you for sharing the reality of the need for funding for XMRV research to help the millions of us who are so sick!

  6. Great metaphor. Bedridden or housebound ME patients are indeed like Snow White, practically dead to the friends and family and coworkers who used to know and interact with us. We need thousands of knights in shining armor: if they each contributed just a little to the WPI, if they each contacted their elected representatives and demanded funding for XMRV research, and if they each helped educate others by sharing links to our blogs, we might get revived at last! Smooch!

  7. Beautifully written...thank you so much for sharing!

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

  9. Now that's a nice opening line.
    I also instinctively wait for the proverbial white knight (better be a female one though). A miracle. Getting better suddenly and unexpectedly just like I got suddenly and unexpectedly sick.
    Thanks for the comprehensive summary on XMRV. I am amazed at the potential for new discoveries in this area.

  10. We need to get all this out there....ane we are having a great day today....hope your knight in shining armour comes one day in the not to distant future Max...Jack.

  11. Eighteen years is 18 years too heart goes out to you. And thank you for your kind comment on my own blog!

  12. Thank you for doing your bit to spread awareness. We desperately need funding for research; without it, 17 million people will remain sick and quite possible infectious. We need to know - the world needs to know.

  13. I sometimes feel like the princess in "The Princess and the Pea." Literally, bruises show up on my legs without any seeming cause. The person I am on the inside is strong, determined, fearless. The body I am trapped in is sensitive, "It's too cold."
    "I have to have my sunglasses."
    "Will there be someplace I can lay down if I need to?"