Wednesday, May 12, 2010

What is CFS?

May 12th is Florence Nightingale's Birthday, a day that has been claimed by Chronic Fatigue Syndrome (CFS) patients (along with Fibromyalgia and others) to increase awareness for this disorder. I had wanted to write an informative blog post, but honestly I just don't have the energy right now. So instead I'll clip and paste some information I posted to Facebook this morning, along with the answers I've replied to the questions people have asked me since that post.

Before taking on CFS, I wanted to flag a post I just made on my book blog, pointing you to some beautiful give-aways for moms of HeavenBorn (miscarried, stillborn, infant death, etc.) children. Most entry deadlines expire today or tomorrow, so please be sure to visit and pass the link on to a grieving mom you might know:
I've posted several give-aways for moms of HeavenBorn babies at

And now, to 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. Updated information has been posted July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.


Bunny said...

I had always had problems with my cycle (severe pain, anemia, nausea, vomiting etc.) and had gone to different doctors for 13 years before being diagnosed with Endometreosis. The doctor at the time (no longer allowed to practice)did a laparoscopy to remove my endo. He decided to leave my 2 small uterine fibroids as they "weren't going to grow".This was 2004. I felt somewhat better after, but issues started returning. He was only concerned about me getting pregnant, so he never looked into it again, despite my many attempts. I finally went to see my Family Doctor in February of 2009. I was extremely anemic and almost hospitalized for a blood transfusion. I was sent to another specialist that informed me that my uterus (due to the fibroids) had grown to a 16-18 week pregnancy size and the anemia was due to the hemorrhaging that I experienced every 3 weeks. I decided that it would be in my best interest to have a hysterectomy (even though I was only 32 at the time) as treatment wouldn't have been an option due to the amount and location of ALL of my fibroids. It was the best decision I could have made for myself. We had been struggling with IF for 6 years before we adopted our 2 boys (siblings). I still struggle with never getting pregnant, but I know that God's hand was in our adoption and infertility. Without going through all of that, I would never have my two wonderful boys and be able to support my IF sisters the same way. I am truly blessed.

Sue Jackson said...

Oh, my gosh, Jenni, I had no idea you'd been sick since childhood. Wow. I became very suddenly ill with CFS at age 37, 8 years ago. Before that I was very healthy.

My doctor was just telling me at my last visit about another CFS patient with recurring chicken pox - she said various ID doctors keep telling her that's impossible, but my doctor tells them she knows a pox when she sees one!!

Thanks for sharing your story.


Jeanne said...


I found this post when you left the link on my Facebook wall for the XMRV petition. I'm very sorry you've been through so much!

In regard to the endometriosis, I think it is worth noting that it is not at all unusual for endometriosis patients to have continued pain post-hysterectomy. I attended monthly endometriosis support groups in the 3 cities I lived in from 1992-2008 (including being a support group leader on the last one from 2001-8).

Sadly, in that time I met many women who have endo and had had a hysterectomy only to continue to have serious endometriosis-related problems afterwards. I'm glad that it has worked out so well for you. I just think it's crucial for people to know that this is not always the case.

Endometriosis is, by definition, misplaced endometrial tissue (i.e. located outside of the endometrial lining of the uterus where it belongs). So, removing the uterus doesn't have any effect on the endometrial implants outside of the uterus. While removal of the uterus stops periods and that in and of itself can help some people with certain endo symptoms, I think it's important to note that there is no cure for endometriosis.

I understand that you have other conditions that may have made it difficult to pinpoint what the cause of pain was. I know from personal experience how difficult it can be to pinpoint the cause(s) of pain when there are many overlapping conditions.

Thank you for sharing information about XMRV. The Whittemore Peterson Institute sure is doing exciting work and I'm sure you are happy to be a part of their ground-breaking research.

Take care,


Jenni / Jennifer Saake a.k.a. InfertilityMom said...

Jeanne, I agree, there is no "cure" for Endo and I've counseled people for years that hysterectomy will not always stop endo pain. My surgery was primarily for uncontrolable bleeding (10 weeks of mega flow and meds weren't making an impact) but it has helped my endo pain significantly. I continue learning my body and now realize that while I used to contribute all abdominal pain to endo, there was even more going on than I realized. Now that I have had my hysterectomy I am better able to figure out what kinds of pains are being caused by what things as I'm learning more contributing factors. I know for a fact that my doctor didn't do a great job cleaning up existing endo during my hysterectomy surgery as he said he really didn't even look for it (though I had asked him to). :(