Wednesday, July 7, 2010

What's the hullabaloo all about?

Dear Reader:

There is a political war going on in Washington over the research results surrounding recent efforts to find a cause for the illness that has been the bane of my existence for the last 22 years. In 1988, DH and I returned from a conference/personal vacation in Virginia Beach. We both came down with the flu. He got better (he has the immune system of someone from outer space) and I got very sick. Pneumonia, low grade fever, painfully swollen lymph nodes the size of my thumb, brain fog, inability to concentrate, and UNBELIEVABLE fatigue swept over me and lasted for months. I took a sabbatical from my work at the church for 3 months and was finally able to function at a low level, raising my children and going back to part-time work.

The disease has waxed and waned since then. It began to get worse after a series of stressful life events in the years after 2000. I tried partial disability/part-time employment; then returned to work full-time two years later. In 2007, my supervisor, noticing that I was constantly struggling with muscle pain and fatigue offered reduced hours. I went to 70% of normal hours. This allowed me to rest in the afternoons, but things just became worse. Later that year, I began noticing serious errors in the statistical analysis I was doing for my work. I had difficulty remembering research results in front of my customers, and increasing found that I was unable to organize my time and make simple decisions. I began loosing control of my life. I also suffered from headaches, lost my balance easily, and frequently walked into walls. Emotionally, I felt detached and on June 28, 2008 - I lost all hope of ever being able to function.

Those of you who know me know that this is NOT me. I have always been a high achiever. I loved the work I did at ISU. This was not an effort on my part to "get out of having to work!" That day, I admitted myself to the hospital to get some help. Over the next few months, all of the behavioral techniques they attempted to teach me were ones that I had been using for years (and were no longer working). Finally, I got in to see a neurologist and learned after an MRI that I had brain lesions "at such a level as to expect you were looking at the brain scan of a 70 year old woman." I was 58 at the time.

Subsequent testing ruled out multiple sclerosis. I believe I have Myalgic Encephalomyelitis. Researchers at the Whittemore Institute in Nevada have successfully isolated a virus (XMRV) in the blood of a large majority of a cohort of those diagnosed with chronic fatigue/myalgic encephalomylitis (CFS/ME). These results were further duplicated by two other research labs (one of which was Cleveland Clinic). The studies also found XMRV in the blood of nearly 4% of the control group, raising alarms about the potential health of the general population . Since then, 3 countries have issued statements that they will no longer accept donations of blood from patients diagnosed with CFS/ME out of concern for the health of the blood receivers.

There is a researcher at the CDC (William Switzer) who has staked his reputation on CFS being a psychological illness. He has developed a protocol for treatment that is basically a cognitive/behavioral approach. He believes teaching people coping skills and different ways of thinking will return CFS/ME sufferers to good health. Switzer has also probably made quite a bit of money for himself, as well as a highly visible reputation. The study his agency conducted chose to use different procedures to test samples from the Whittemore and (guess what) did not find XMRV in the samples. The paper from his study has recently been published.

Another study using the Whittemore samples was conducted by the National Institute of Health (NIH) and Food & Drug Administration (FDA) DID and find XMRV in a majority of CFS/ME sufferers and in 7% of the control group (non-diagnosed general population) (yes, I said 7%). Their paper was accepted for publication and was in galleys (final stage) when the CDC issued their results. Guess what happened. The CDC paper was allowed to go to publication while the NIH/FDA paper was embargoed (pulled back and not published). Do you sense the politics that are going on here?

So, if you've gotten this far in my blog, and are still interested (and like me, totally angry at the politics of this idiocy), please go to the web address listed below and sign the petition to allow the NIH/FDA paper to be released. There is also a suggested text to send to your federal representatives/any important people in Washington you might want to contact.

I thank you from the bottom of my heart for anything you decide to do. I especially covet your prayers for not only myself, but also anyone facing this illness. There are children who have it who cannot get out of bed, they are so weak. I fight it everyday. Some days I have to give in and spend the day in bed. Other days, I go out and try to act normally. The next day I am so tired I can barely move. But life was not meant to be lived in bed. So, even if I have to pay, sometimes I play, knowing what is coming later.

At any rate, thanks for reading/listening!

Here's the web site:


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