Monday, August 16, 2010

What's a Retrovirus?

I frequently reference the retrovirus XMRV here. (See update on possible upcoming name change from XMRV to HGRV.) Some may wonder (as I did less than a year ago!), "What exactly is a retrovirus? How does it differ from your standard old virus?" In short, a retrovirus is a "super" virus that actually writes itself directly into a person's DNA, for life. The only other two known infectious human retroviruses are HTLV (linked to a form of leukemia) and HIV (linked to AIDS). I have also written a poem describing my life with XMRV.

Not written by me, but I found some very helpful and detailed information outlining XMRV and explaining things like the way XMRV is to XAND as HIV is to AIDS. Here's also a great audio interview explaining in simple language about Chronic Fatigue Syndrome (CFS) and XMRV by Hillary Johnson, author of Osler's Web, recently recorded with "A Conversation of Hope".

Since it's been a while, I'm also going to revisit a previous post and highlight a few specifics of my story...

My story (in limited characters for Facebook posting purposes)...
Had back-to-back mono then chicken pox when I was 8, followed by abdominal pain, eventually diagnosed as Endometriosis. Fibromyalgia began around age 15/16. Hard CFS crash at 18 (20 years ago in Sept), mostly bed- /home-bound for the next 4 years. Had some "moderately" sick years and battle through infertility /miscarriage. CFS relapsed significantly 3 years ago when our youngest was 1. Positive for retrovirus XMRV

In reply to a friend who commented on the 4 year journey to her Endometriosis diagnosis and her thankfulness that I have so much support...
Yes, I have been VERY blessed with supportive family who love me and advocate for me. Most do not have this.

I wasn't diagnosed with Endo until I was 16 (then it was only "probable" because I did not have a laparscopy to confirm until I was about 25), but pain started at 8 and grew increasingly worse from puberty onward. I started BCPs at age 16 to manage pain, crazy cycles and excessive bleeding.

Interestingly enough, a hysterectomy at age 36, while helping with much of the Endometriosis pain, did not resolve all abdominal pain issues. I have since learned that abdominal pain, especially on the right side, is common with Fibromyalgia (irritation to the psoas muscle) and to CFS (gal bladder, liver and other digestive issues). While three different surgeries verified Endo, some of the pain I had always attributed to the condition were probably related to other underlying health issues instead.

My CFS diagnosis took just 7 months - amazingly fast since CDC requires a minimum of 6 months of illness and ruling out of all other potential causes before it can be labeled. But I was SO SICK and when all other tests came back clear, that's the label that was left. Since the CFS onset (accompanied by another round of mono), I've had chicken pox about 6 more times, so I really believe my current health issues probably stem back to what my body dealt with when I was 8, when I personally speculate XMRV likely came on board.

Fibromyalgia wasn't diagnosed until my early/mid 20s, though I had been symptomatic for about 10 years already by that point.

To a friend commenting on just how young I was when health issues arose, wondering about the ages of our living children, and asking about XMRV I replied:
Our sweet miracles are 10, 7, 4. We started TTC (trying to conceive) shortly after my 20th birthday. I will be 38 this summer.

XMRV (click here to see all my previous posts on the topic) is the 3rd infectious retrovirus discovered in the human population. A retrovirus differs from a regular virus in that it actually writes itself directly into my genetic code, becoming part of my own DNA. HIV is the most well-known retrovirus, so that gives you an idea of how serious this could be and why I've been so very sick for so long. More information about XMRV and XMRV- Associated NeuroImmune Disease (XAND) can be found at

Last October a local, privately funded research institute, The Whittemore Peterson Instiitue (WPI) published the first Scientific paper linking XMRV to CFS, a retrovirus that has also been linked to a specific form of prostate cancer. The scary part is that nearly 4% of the healthy control patients used in the study also tested positive for XMRV meaning many "healthy" people in the general population could be carrying and spreading another AIDS-like virus and not even know it yet! Several counties are now banning blood donations from CFS patients as XMRV continues to be studied.

Unfortunately, this discovery is being largely ignored among those who could make a difference in funding for further research.

Instead of "opening the can of worms" of acknowledging this potentially massive public health threat, most would rather sweep it under the carpet (as they have been doing for a good 25 years), classify it is a mental/psychiatric disorder (rather than physical illness), or just ignore it all together.

Thank you for entering into my world with me for a moment and learning more about CFS. If you have any questions for me please post them! I will do my best to share information and experiences from my perspective. I posted additional/updated information on July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.

1 comment:

Patricia said...

Thank you for your informative blog. I also had endometriosis, and had a pan-hysterectomy at age 29. I became ill with ME/CFS in 1986, and discovered I was culture positive for XMRV in January 2010. It has been a long road, but I think hope has arrived in the form of the Whittemore Peterson Institute.

Patricia Carter