Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome
It was the first published article from the UK announcing findings in PLoS ONE regarding a XMRV/CFS research 'study'. It was a very disappointing report and contained errors that even a brain addled PWC as myself could spot. We all knew it, and I was dumbfounded why it was even published? Why would any scientists want to attach their names to something so technically impaired? It just did not make any sense. Their study results were:
Received: December 1, 2009; Accepted: December 4, 2009; Published: January 6, 2010
See anything unusual here? The WPI, the CC and NCI published their XMRV in CFS patients discovery findings in Science on October 9, 2009 after a rigorous peer review of 6 months.
So, we were expected to believe that they (Dr. McClure and UK team) somehow managed to 'not verify' (I will not use the 'replicate' word, as they failed to follow the steps required for an authentic replication study) the discovery of XMRV in CFS patients after less than two months? Then, it was received By PLoS ONE on December 1, and accepted December 4th? So... yeah. A peer review of 3 days? Really? Politics aside, this was just such a technical failure from the start it should have never even been considered for publication.
Yesterday, WPI addressed the 'science' behind the UK's published study. I received authorization to post this correspondence from Annette Whittemore, CEO and Founder of WPI, to Dr. McClure. You can also find it here, on the current news page on WPI's website.
NOTE: If you have already read the letter, jump to the end of this post for a quick conclusion by this blogger.
April 12, 2010
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 ourpatient 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.
Founder and CEO
Whittemore Peterson Institute
Dear Dr. McClure,
I second the motion that you respond to Annette in a timely manner. And please reconcile the technical and conclusive issues you previously had, by working directly with WPI.
I just finished listening to The Health Report's interview with Dr. McClure. She states her reason for rushing to publish was due to the fact that 1) A 'lab in the US' was charging a very high fee for their XMRV test, and 2) that there were reports of some (Doctors? Clinics?) offering anti-viral treatments to CFS patients. So, if I get this right, she wanted to make sure we didn't 'buy into' the WPI's study, because she was concerned for our wallets?, and that unsubstantiated anti-viral treatments being offered (and again, I ask WHO?) might harm us? Well, that's just... so noble. Can I just lol here?
Yes, there was a questionable lab that entered the scene about 1 week after the Science report (Co-Diagnostics, and they are no longer on the internet). But I would really like to know where she gathered the information concerning Anyone who was 'offering' anti-viral treatments for CFS patients? And why did Dr. McClure suddenly become So attentive to the plight of PWC's? Why was she all of a sudden so thoughtful, so concerned as to risk her reputation by publishing something so... wrong? I DON"T GET IT!! Some one Please explain it to me!!
As a PWC since 1993, I can tell you that PWC's are not easily persuaded by snake oil salesmen. We are not your typical patients who want to be spoon fed. We have had to defend ourselves for so many years, and have been received with such disdain and complete dismissal just for being proactive in understanding how we can help ourselves, that we are always wary. We also weigh the costs and risks very carefully before deciding on any lab test, and/or embarking on Any treatments. And we rely on scientific accuracy when we do weigh the risks. What we NEED from You, Dr. McClure, is accurate science, WITHOUT EXCEPTION OR BIAS, so we can make the very Best decisions towards increasing our quality of life, and/or increasing our life span. We do not need you using your 'concerns' as a basis for publishing unsound science. And if Dr. McClure was implying that the XMRV lab test offered by VipDX was out of line monetarily?, she might think about researching where the XMRV lab test proceeds from VipDX go. They go back into WPI for research.
Now, given what I know to be true about WPI and VipDX, they are the ONLY lab I would trust with my XMRV testing. Certainly not a retrovirus lab where instead of doing the level of research required for meaningful accurate results, they instead justify rushing the wrong data to publication that has the power to affect Millions of people, because they are 'concerned' about patients with CFS being taken advantage of. Yeah, That makes sense. Please do not concern yourself with us again Dr. McClure. That kind of concern we can do without.
And a special thanks to Annette Whittemore (and her family) for her generosity, her dedication and her never ending focus on the details that Do matter.
˙·٠•●♥ ƹ̵̡ӝ̵̨̄ʒ ♥●•٠·˙
"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King "A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.
"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.