Tuesday, April 13, 2010

XMRV Global Studies

On the heals of the April 6th news that Canadian Blood Services announced it would prefer to "err on the side caution" and ban "CFS" patients from donating blood, the following letter was posted yesterday at http://www.wpinstitute.org/news/news_current.html in response to the UK "replication studies" that failed to find XMRV in the CFS patients tested. Eye-opening information here!!!

Dear Dr. McClure:
On behalf of the Whittemore Peterson Institute in Reno, Nevada (“WPI”), I am writing you today to ensure that there is direct communication between WPI and your research team. You may share this letter with others that you deem appropriate, and I will do the same by sharing this letter with other interested parties in both the United States and the United Kingdom.

On January 6, 2010, you reported in PloS One that you failed to detect xenotropic murine leukemia virus-related virus (“XMRV”) in ME/CFS patient samples. In that publication you reported the following conclusion, “[b]ased on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of ME/CFS, at least in the U.K.” You subsequently made the following statement in your commentary regarding the Netherlands study in the BMJ, “….van Kuppeveld and colleagues provide the additional information reported at a conference last year that the patients in question came from an outbreak of chronic fatigue syndrome at Incline Village on the northern border of Lake Tahoe in the mid-1980s.”

This statement about the origin of the 101 patient samples is untrue. The patients in the Science study were well defined in the paper as having CFS by the Fukuda and Canadian consensus definitions of ME/CFS. More importantly the patient samples did not come from the “Lake Tahoe outbreak” as you assert, but rather from patients who had become ill while living in various parts of the United States.

We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerr’s and Dr. van Kuppeveld’s cohorts prior to the completion of their own studies, as they requested. We have email communication that confirms both doctors were aware of these findings before publishing their negative papers. In addition, Dr. van Kuppeveld asked for and received reagents and a positive patient sample to determine if his testing procedures could in fact detect XMRV in a positive blood sample before he published his paper. We wonder why these materials were not used in his study which also failed to detect XMRV.

One might begin to suspect that the discrepancy between our findings of XMRV in our patient population and patients outside of the United States, from several separate laboratories, are in part due to technical aspects of the testing procedures. To help identify the possible reasons for the discrepancies in detection of XMRV, WPI would like to send you known positive patient samples with controls, from the United States in an appropriate number, along with WPI reagents, so that we can help you determine whether your testing methodologies will accurately detect XMRV in a clinical sample of blood. In addition, WPI would be willing to test a like number of samples from your patient cohort to see if our researchers can detect XMRV in those samples.

This critical exercise would help resolve the question of whether you are using all of the appropriate techniques necessary to detect XMRV in a patient’s sample. If your tests are able to detect XMRV correctly in the known positives, then the debate can appropriately center on whether we can identify the differences in the patient cohorts which have been the subject of various studies. It is in this systematic manner that we all may help to move the science forward; instead of continuing to debate whether or not ME/CFS patients in Europe are infected with XMRV.

It is also important to note that our initial study was not intended to prove causality of ME/CFS, but to report a significant association between patients who had been diagnosed with ME/CFS and XMRV. We believe that there exists compelling evidence to spur additional scientific review, especially in light of the fact that our team of researchers also discovered XMRV in the blood of 3.7% of our non contact controls.

I look forward to your timely reply.
Annette Whittemore
Founder and CEO
Whittemore Peterson Institute

As a note of personal clarification, as I am one of the original XMRV-positive patients reported in the Oct. Science paper, I've had many questions about when/where I became ill. I am US born, but spent about 9 years of my childhood overseas. The more I learn about retroviruses and think back through my own medical history, the more I suspect I've probably had X at least since I was 8, living in Japan, though some strange medical symptoms can be traced back even earlier and could stem to infancy in Michigan or even my 1972 birth in Oregon (though I lived there just three weeks).

Since I didn't "crash" hard with what was eventually diagnosed as CFS until I was 18 and living in southern CA in 1990, I "acquired CFS" here in the US. There is obviously no way to prove how long I've carried XMRV or even in what country I became exposed, but I would be considered to be "from southern CA" when it comes to CFS onset, though I've lived across the US and in various parts of Asia. Since I never lived anywhere longer than two years, sometimes moving much more frequently, my continent of contamination is utterly unknown.

I have now lived in Reno, about 45 minutes for Incline Village, for the past 12 years. I had never even been in the state of NV (other than driving through southern Vegas and spending about 8 hours overnight in a motel on the way to somewhere else while in high school) until after my CFS diagnosis, so I am certainly not part of the Incline Village outbreak.


Samantha said...
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Samantha said...

Wow! I truly believe that GOD led me to your blog. I was just doing some blog surfing, and came across yours. My husband & I are in the midst of infertility right now. And, I a battle with Chronic Fatigue too.