Friday, January 21, 2011

XRMV+ and Desperate for a Cure

Fifteen years ago, I was a very happy, healthy preschool teacher. I was the wife of a man I adored and had three growing boys/men who were the light of my life. I was not one of those driven kind of people. I was someone who knew how to stop and smell the roses and there were so many roses to smell. I loved to dance and go to concerts. I dreamed of the days ahead when my husband and I would be able to travel. Our plans were to buy a small motor home, have a small home base, probably an apartment by the beach in South Florida, and spend the rest of our time visiting our three sons...wherever they had chosen to settle. My days were filled with laughing children, close friends and a loving, happy home.
I'm not really sure exactly when it all changed. All I know is that I got sick and never got better. And, I'm not talking about the kind of sick where you can still function, this was something I'd never experienced. This was a combination of being run over by a steamroller and having my finger stuck in a light socket. This was I couldn't get up, I couldn't talk very much, everything, including the air, hurt and I was totally and completely exhausted, but couldn't sleep. Torture. That's what this is. It is living torture.
I was finally diagnosed with Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelits in the rest of the world.
Until recently, there was no known cause for this incredibly debilitating disease. Until recently, there was very little hope. Now, I know that I have a retrovirus called XMRV. Even though a retrovirus is a very scary and dangerous thing, (HIV is another retrovirus), I am thankful every day to have something to be hopeful about. I miss my life. I miss my children. I miss my grandchildren. I miss being able to be a good wife, mother, grandmother, daughter and friend.  Most of all, I miss me. But, now I get to be hopeful about all of this:

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:

Thank you so much for reading my blog. I hope that it will help someone somewhere.
I hope that my family and friends remember who I was, because I fully intend to be back and actively loving them someday soon.