In my first consultation at the ‘Breakspear’ the subject of the XMRV retrovirus was raised. It has been all over the headlines recently linking it to ME/CFS. At present, the single research study in the United States (WPI) found 67% of ME/CFS patients to have a current infection of the retrovirus using a PCR blood test and a staggering 95% if the blood was cultured, compared to under 4% (PCR only) in healthy individuals. If you are unaware of the term retrovirus, an example is HIV. Nowhere presently in Europe tests for XMRV, so I was offered two options. Option one was for a blood sample to be sent immediately to Nevada at a cost of £700, or secondly, a sample could be frozen and sent to a testing facility in the UK once one was confirmed. I was assured though that the ‘Breakspear Medical Group’ were liaising with a facility in Oxford and testing was to commence in approximately three weeks time. After watching some news clips discussing the findings with the head of the research study, I went to my GP for some advice. Unfortunately though, he had not even heard of this retrovirus, the headlines it had created or any NHS testing for it. I was hoping in the light of such press that some guidelines might have been available, but once again I have had to make my own decisions without my GP about such important health matters.
I decided upon the option to freeze my blood sample, as even if I was to receive an immediate positive result, the world at present does not know the next step to take. Many more identical studies will have to be completed all over the world before any conclusions are made, and only then will research begin on treatments. It must also, as an option, be considered as another red herring. ME/CFS is an immune dysfunction and patients could easily have contracted XMRV after their illness began and the retrovirus not to be the actual cause. This whole topic of research has a long journey ahead. Therefore, so that I do not go insane with anxiety, I will attempt to ignore everything related to XMRV and focus on the my current positives. The ‘Breakspear’ have and will continue to perform tests on me over the coming months. Do I wish to be in the current 67% statistic confirmed to have the retrovirus, I am unsure, however I would then have an answer to my illness. They have given me some hope though (at a cost), that whatever my XMRV result, they will investigate and treat my illness with their current techniques and help me like they have many others.