Prof McClure, emails, legitimate questions and disrespect

By: Chris Douglas:

This email was sent to Prof McClure on 23.12.10. It raises valid concerns and questions about her intention to test the blood of participants in the WPI/NCI's UK XMRV study. The read receipt was received on 9.2.11 (six weeks later) and said "Your message was deleted without being read". . If this is the level of disrespect shown to patients who ask legitimate questions about research that could have such an enormous impact on their lives, then researchers should not be surprised if patients feel insulted and marginalised and behave accordingly. .

Dear Professor McClure,

I am writing on behalf of myself and other participants in the UK research study being run by the Whittemore Peterson Institute at the University of Nevada (WPI) and the US National Cancer Institute (NCI). As you are aware, this study is testing participants for the presence of XMRV.

It has come to our attention that you are willing to accept blood samples from participants of this study in order to run your own tests for the presence of XMRV. In response, we wish to raise the following questions and make the following points. Firstly, which methods will be used to detect XMRV in blood samples and will these methods replicate those used in the original Science paper and/or those published in AIDSReviews in 2010?

If the Science methods will not be used, please can you clarify why they will not be used? Also, if these methods will not be used, please can you clarify how findings from your own research can be deemed robust in terms of potential validation of, or challenge to, those of the WPI and the NCI? Specifically, will you be using an antibody test and, if so, whose test will this be? We understand that Imperial has not developed its own antibody assay and that previous blood samples from the college have been sent to a lab in Switzerland that works exclusively with mice retroviruses and not human MLVs. Please can you confirm if you will be using an antibody assay developed by the WPI/NCI and, if not, why not? Also, will you be using a clinical control from the WPI or the NCI? In addition to questions about the test methodologies, we are concerned about the ethics and professionalism of taking blood from participants of a study that has yet to be published and would appreciate your comments on whether this is acceptable, standard practice in the scientific world. With respect to the aims of your research, we would appreciate clarification of the reasons for your continued pursuit of XMRV in ME patients given your ongoing denial of the retrovirus’ existence as a human pathogen and its links with ME.

Throughout this year, patients have witnessed your apparent unwillingness to work collaboratively with, particularly, the WPI, as well as various public attacks on their work (e.g. on Australian radio, in the BMJ and via the Science Media Centre press release about the Lo et al paper). You are also on record as saying that “Nothing on God's Earth could persuade me to do more research on CFS [i.e. ME]” after receiving “ghastly” emails from some patients.

More recently, we have seen your involvement in the orchestrated, simultaneous publication (in Retrovirology) of four research papers (plus one commentary) that imply XMRV is a lab contaminant. So close to Christmas, the timing of this onslaught was cruel and callous in the extreme and demonstrates little care and compassion for the patients who (one would assume) the research is intended to help. I am sure that you will understand how these actions and comments would make patients highly suspicious of your motives in drawing their blood and we would appreciate hearing your response to these concerns so that we may understand better the rationale behind any further tests.

This insight would be useful not only for those participating in the WPI/NCI study, but also for other ME patients who you may wish to recruit.

Yours sincerely,
By: Chris Douglas