Monday, July 26, 2010

More on XMRV

I haven't been keeping friends very well updated on XMRV news. In part I feel discouraged. While the National Institute of Health (NIH) and Food and Drug Administration (FDA) have confirmed the findings of Whittemore Peterson Institute (WPI) as published last October, the Centers for Disease Control (CDC) has come out with a very public statement that they were unable to find XMRV at all. The NIH/FDA paper not only confirms the original findings, but strengthen them, but the Department of Health and Human Services (HHS) made the ultimate decision to hold up the official publication of their study even after it had passed peer review and was accepted for publication, a very unusual move.

Our government has ordered the withholding of the paper by both NIH and FDA but allowed the opposing CDC publication. *sigh* Now, honestly, the CDC has over 20 years of track record of doing everything they can to discredit Chronic Fatigue Syndrome as a real, physical illness, so their newest publication and the suppression of opposing findings shouldn't surprise me, but it does disappoint me deeply. For a great time line clearly explaining all the back story check out CFS Central's A Commotion in the Blood: Timeline & Bloodline where you will find a very simple unfolding of all that's happened over the years, presented in a wonderfully understandable time line that will simply make your heart sick!

This is why it's so very important to me that WPI be able to continue their work. This is why it's my goal to raise $500 before the end of August so that I can attend their "I Hope You Dance" fundraiser gala. If our government is willing to endanger the general population by suppressing valid scientific findings, then private research is imperative! (I would so greatly appreciate it if you would consider making a small contribution through my ChipIn link, or you can paypal directly to jsaake AT yahoo DOT com with WPI in the subject line if you would like to help fulfill my birthday wish to be able to purchase these tickets.)

On a personal front, I'm coping with ongoing medical mysteries within my body. I've had classic symptoms of gal stones off and on for about 3 years, with a lot of problems the past few months. My ultrasound last week was "normal and unremarkable" so we are awaiting an HIDA scan (but the hospital is currently backlogged by an entire week). Was thinking I might end up having surgery before my birthday (this coming weekend) but at this point, unless we get to the point of medical crisis (we were almost there last week but symptoms are currently somewhat improved) I won't even have the scan to determine our next step until at least next Monday. In the midst of it all, my dearly beloved primary care physician is out of town for a solid 3 weeks, so we've been trying to run this all through the support staff in her office.

Next week I also see a dermatologist to evaluate possible skin cancer. I also have a referral to a counselor just to talk about how to cope with all this, but I haven't had the energy to even make that appointment yet. It's something I've been avoiding because I feel like I'm living at doctor's offices these days and I'm just too exhausted to take on the emotional process of getting started with yet another "project," (in this case, my emotional and mental health) though I know it's something I need to make a priority and just do. Would love to get the tummy issues resolved so I have the time and energy to focus on other things.

On the fun side, our 7-year-old has now lost all 4 front teeth and has an adorable hole right in the middle of her smile. The 4th came out last Wednesday.  On Saturday our 10-year-old showed me he had a wiggly tooth too, so I reached out to gently feel it and literally pushed it right out! He can now tell his friends that his mom knocked his (9th) tooth out. :P Our poor little 4-year-old is feeling very left out of the whole tooth-loosing experience at the moment, but his time will come. :) We have all enjoyed our first week of "summer vacation" (tummy pain and nausea aside) but are actually already looking forward to starting Exploration to the 1850s and Kindergarten again by the end of August.

1 comment:

Lori said...

Oh my word, Jenni....your posts always tug at me because I just can't imagine all you are going through and all the medical stuff that I can barely read through and make sense of is YOUR LIFE!!!! I'm so sorry and just continue to pray for doctor's wisdom and your health!!!