Saturday, April 17, 2010

Pushback from WPI

Since the Whittemore Peterson Institute's discovery of a link between XMRV and ME/CFS in October, subsequent research teams have failed to replicate their findings. Some of the other researchers claim the discrepancy exists because of flaws in WPI's methods. Specifically, they say the WPI's subjects all came from the Incline Village outbreak in the '80s.

Earlier this week, WPI challenged these claims in a letter to Dr. McClure, first author of the first negative study.
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.
Full letter here.

I was gratified to read this, but wondered if it would make a difference to anyone besides ME/CFS patients and the people who know them. Would anyone else listen?

Today I was gratified once again to learn that others are taking this ball and running with it. From Dr. Speedy's site:
Gendringen, 2010/04/16 - Researchers at UMC St. Radboud announced in February no XMRV virus has been found in the blood of Dutch chronic fatigue syndrome (ME/CFS) patients. They concealed, however, that U.S. reseachers did found traces of this retrovirus in blood samples of the same patient. This is shown in a web publication of Ortho magazine, which is put online today.
Here's hoping the new studies in the works will get it right. Whatever role XMRV plays in ME/CFS, we need real answers, not politics.

1 comment:

DeppityBob said...

I think that many doctors would prefer there to be no known cause for ME/CFS so they can continue to blame to patient for the disease. In my experience, I've noticed an amount of punitive attitude from doctors toward their patients. I've seen it in the "recovery industry," too, where they actively oppose any pharmacological approaches to resolving alcohol or drug addictions. They seem to want you to have to earn sobriety rather than find an easier solution. Doctors can be arrogant enough to disregard patients' input or to resist challenges to their prejudices. I was reading a post not long ago from a patient, suffering from chronic pain, whose doctor refused to recommend medical marijuana because it's a "narcotic." Stubbornness is antithetical to science, but it seems to be pretty common to people who think they already have the answers.