Thursday, December 16, 2010

Dr. Mikovits in Santa Rosa January 17

XMRV Retroviruses and Human MLV-related Viruses - Updates on GMA Research + reminder Dr Mikovits, Santa Rosa, Jan 17

In 2008, Dr. Mikovits presented information on XMRV to a symposium of researchers of chronic illness, hosted by Gordon Medical. In 2009, our office was asked to provide samples for XMRV testing, to see whether the retrovirus might be found in asymptomatic people who have close contact (contact controls) with CFS patients. Though we do not yet have final results on those tests, it does appear there is a higher incidence of XMRV in our contact controls than was found in other studies in the general healthy population. Dr. Paul Cheney, another CFS researcher, found almost 50% of his contact controls are positive for XMRV.

After the Science paper was published<span>, Dr. Mikovits offered to provide testing for more patients through GMA</span>. Just over 200 people provided blood samples for that study, including people with CFS and many other chronic conditions, in an effort to learn whether XMRV might be a cause of other chronic illness than CFS.

Gordon Medical has only preliminary analysis of the data, as we are still waiting for results on many of the samples. So far we have <span>52 people who test positive for XMRV</span> through our office, whether by culture (viral particles) or by serology (antibodies). Those people include patients with CFS, Lyme disease, Hashimoto's Thyroiditis, depression, reactivity to mold, and cancer. Dr. Cheney is finding that nearly all of his Lyme and mold related cases are positive for XMRV, so we expect that we will have more positives in those groups as more results come in.

We know the participants have been anxiously waiting for further results. We have not received any new results from WPI in the last few months, as Dr. Mikovits has been working to get the research moved into WPI's new building, and to establish the consistency of XMRV testing. XMRV has proven to be extremely difficult to find with commonly available tests. There have been studies in which researchers were unable to find the retrovirus in any participants, and there is controversy over whether this is due to testing difficulties, or whether XMRV is not as prevalent as claimed by the researchers who have found it in patients.

"Proving that xenotropic (XMRV) or polytropic (MLV-related viruses) are present in Chronic Fatigue Syndrome would be the first step towards determining if these viruses actually cause disease. This is an important question, because a large fraction of the world population, estimated at 0.4-1%, is affected by CFS.", states Dr. Ila Singh, another XMRV researcher.
October 26, 2010 - Dr. Ila Singh - Viruses

Dr. Mikovits believes that a positive test for either culture or serology indicates an infection, as retroviral infections are considered to be lifelong. If you are positive for one, it is not necessary to test for the other. However, if you are negative for one, that does not rule out the possibility of infection. In that case it is necessary to do both tests to ensure the best chance of finding the infection if it is present. We are still waiting for secondary testing on those study participants who tested negative on one of the tests.

Recently, Dr. Gordon spent a weekend with Dr. Cheney, sharing ideas on how treatment might work for XMRV patients. It is still unknown whether XMRV and the other HGRV viruses are the primary cause of the illnesses they are associated with, or whether infection reflects an inability to maintain effective immune surveillance.

For now, all treatments are experimental. Some patients may choose to do a trial with antiretrovirals (ARV), either natural or conventional. Conventional ARVs are the drugs used to treat HIV and AIDS. While XMRV and HIV are not identical, some of the knowledge gained in treating HIV may be useful in discovering what works for XMRV.

It is important to manage inflammation, one of the primary issues with retroviruses. There are natural and conventional options to treat inflammation, depending on your needs and preferences. Working to balance hormone levels is another aspect of treatment, as these retroviruses seem to be hormone sensitive. Finally, if you have other health issues or infections, it is important to continue treatment to manage those. While XMRV may be proven to cause other diseases, it isn't known yet whether treating the retrovirus directly will be sufficient.

Dr. Mikovits has been actively in touch with physicians who are experimenting with XMRV treatment, and we look forward to hearing any new information she might have to share in January.

If you have a question for Dr. Mikovits, please send the to [email protected] . They will be passed on to Dr. Mikovits, and she will do her best to answer questions during the time allowed for her talk.

Gordon Medical Research Is Proud to Host

Dr. Judy Mikovits, PhD
Co-author of the seminal 2009 paper "Detection of an Infectious Retrovirus, XMRV, in Blood of Patients with Chronic Fatigue Syndrome"

Speaking on Chronic Fatigue Syndrome, the XMRV Retrovirus and Human MLV-related Viruses
How they relate to chronic inflammatory neuroimmune diseases, including CFS, Multiple Sclerosis, Fibromyalgia, chronic Lyme disease, and cancer..

Free of charge to the public

Tax deductible contributions to the Whittemore Peterson Institute gratefully accepted.

This event is fragrance free

Please do not wear scented products to the event

Monday January 17, 2011

2:00-3:30 PM

The Friedman Event Center

4676 Mayette Avenue

Santa Rosa, CA 95405

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Monday, December 13, 2010

What I Offered Was All I Had to Give « My CFS Life

 Am I truly required to give up all enjoyment of life in order to fit another's wishes? 
* * *
This was the big surprise when I lost my job.  After 12 years of  working
full-time with CFS, I'd forgotten what life was like when I didn't need  to
conserve energy to make it through a week at work.  It had become so  second
nature that I was no longer giving it any thought.  Suddenly, I  could think
"gee, I wish I could go there" and realize that there was no reason  I
couldn't.  If spending a few hours on the bus to get to a specialty  store laid
me out for a couple days, so what?  I had nothing else I  had to do that

I came to realize that I'd had very little Quality of Life while working 
because being well enough to work meant constricting life in so many other 
ways.  Now that I was too sick to work, I actually had more Quality of Life 
because I could go to a movie if I wanted to -- I was doing things that were
more enjoyable than merely working and resting up to go back to work.