There are some new questions and answers regarding the UK XMRV study on the website that's been set up today.
What are the objectives of the study? The UK study does not have specific selection criteria. How will this be handled when the results are analyzed and reported? Are the UK Study blood samples being tested for any other viruses other than XMRV?
We have a limit to this study.The goal of this study is to show that if an independent investigator whose lab has never done XMRV research uses the validated methods as published in Science for detecting XMRV, then there will be XMRV infected individuals (with disease) in the UK. That is the incidence of XMRV in ME/CFS in the UK is NOT ZERO and the failure to detect in the two UK studies does not mean XMRV is not present in the UK ME/CFS population, it simply means they failed to use appropriate methods and/or patient populations. Once this study finds a significant number of XMRV infected people, then hopefully this will compel proper research to be done on XMRV. Of course people are free to send samples to VIPDx (if they choose to be tested privately - please see links page of this site ).
I was very surprised that I did not need to fill out any sort of questionnaire with regards to my illness history, ie- how long I had been ill for, circumstances of when I became ill, symptoms etc, etc
We cannot collect information from individuals by questionnaires because our IRB directly rejected this as a risk to their privacy. At this time it is not a goal of the study to have any clinical correlations. Of course follow-on studies of this kind can be designed and implemented but we cannot do any of this with our current approval
Which is the second laboratory involved in the testing?
We identified two labs who have never worked on XMRV, who agreed to use our methods on samples directly shipped from UK patients who are sick..
Are there any drugs, minerals, vitamins etc that CFS/ME sufferers may be on that could affect the testing. Are there any drugs such as antivirals etc that should not be taken?
no, they can take anything because we do the four tests including immune response. If there is evidence of infection, we'll find it.
Are the people who applied before March 11th, but who did not receive
e-mails of confirmation, part of the trial?
We will accommodate as many as possible.
Is XMRV a mouse retrovirus that has jumped the specie barrier, or is it a
totally novel human retrovirus of unknown origin?
XMRV is a novel human virus of unknown origin. It's similarity suggest it came from mouse but since it is not at all in mouse it could have jumped to another animal first
Is there any evidence that XMRV could be detected in bone marrow? A lady has a sample of her bone marrow that has recently been biopsied...would that be of you use to you?
Yes ,we found it in the bone marrow of one person . We would like that sample.
Many people on the UK Study have been asking about how they will receive their results, through their GP or directly? Will they be in batches or will all the results for the Study be released together? Will they be released during the study or at the end? Will they be notified individually by email? Will the results be easy to interpret (some GP's here have been struggling with the VIP Dx result sheet). Is it possible for those in the study to have a copy of their consent form?
Each participant will receive a letter directly from me stating whether or not there is "evidence of XMRV infection" in their blood. This letter will be sent after the group data are accepted for publication. Each will also get an emailed signed copy of the consent.
