We would also like to report that WPI researchers have previously detected XMRV in patient samples from both Dr. Kerrs and Dr. van Kuppevelds 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.
I was treated so badly by doctors in The uk, in hospital, they made me go for runs - being pulled along, held my hand tight and made me go for long, long walks - Up hills, through the countryside and sometimes with no shoes..... wouldnt let me lay down and made me go to school, (result I nearly died) then in the end they said, oh well...you do actually have CFS.
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 patients 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.
The failure by Kerr and Kuppeveld to in SOME way report the WPI's (positive) findings on some of their patients is very odd indeed. Especially given the sweeping conclusions (especially in press statements) by Kuppeveld's team. Kuppeveld HAD the materials from WPI and didn't use them??? That would seem to expose the Dutch study and conclusions as purely politically motivated.
And Kerr pulling out of XMRV research is even weirder in light of this disclosure.
On the other hand, it is also really odd that the WPI did not go public with these facts much earlier! They could have avoided so much of the negative press, and defused the criticism from Dr. Vernon (and by others.. the common frustration expressed by others like Goff that "no one is sharing samples", for instance).
So I am confused by many things now.
But glad to see a concrete effort to collaborate by someone, anyway. I assume they have not reached out to Kerr because he is "out" of XMRV research, but is the rest of that study's team out as well?
Robin, some of the people were originally from elsewhere (this is particularly relevant if people get the infection via parents). I don't know if it is known whether these people were living in the US at the time, or whether some had travelled to the US, or both.
...Maybe the UK have been told they weren't aloud to say XMRV was here...but thats unlikely, how would they ever get away with it. You cant get away with stuff like that in 2010, can you?
I think the UK Government/doctors have a lot to be worried about, people have been treated like dirt that have CFS/ME....they know we are going to want pay back. You couldn't think of a bigger scandal, doctors/nhs treat people with CFS/ME like there insane....then it might turn out they actually had one of the most serious illnesses - a retrovirus.
I was treated so badly by doctors in hospital, they made me go for runs - being pulled along, held my hand tight and made me go for long, long walks - Up hills, through the countryside and sometimes with no shoes..... wouldnt let me lay down and made me go to school, (result I nearly died) then in the end they said, oh well...you do actually have CFS.
perhaps WPI have been checking through all the legalities of making such a statement as this letter and that is why it has taken so long to compile making sure that everything they have stated can be backed up , that there is no loophole for anyone to jump through .
methinks pandoras box is well and truly open .
cant wait for the reactions to this ............... ding ding round 2
The subjects of this study were confirmed CFS patients from St George’s University of London, Barts and the London Hospital Trust, and Glasgow Caledonian University.
A total of 170 serum samples from CFS patients and 395 controls were used. A polymerase chain reaction assay was devised that could detect as little as 16 copies of proviral XMRV DNA (viral DNA integrated into human chromosomal DNA).No XMRV sequences were detected in 142 CFS samples and 157 controls.
A second method was then used to search for evidence of XMRV: the patient serum samples were examined for the presence of antibodies that could block infection of cells with the virus. Cells were infected with XMRV in the presence of serum from CFS patients or control patients. Included were sera known to block XMRV infection to ensure that the assay functioned normally. None of 142 CFS samples contained antibodies that could block XMRV infection of cells. In contrast, 22 samples out of 157 controls (14%) were identified that contained neutralizing activity. One of 28 CFS serum samples from a separate cohort was found to contain XMRV neutralizing activity; none of the 12 control sera could block XMRV infection.
THE WPI LETTER QUOTES..............
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