After a pretty horrid couple of weeks, which exaggerated all of my symptoms, I have had a change of heart. My initial thought was to freeze a blood sample at the ‘Breakspear’ and wait for the XMRV test to be developed in the UK. Instead, as it has now become available to me, I have decided to get tested immediately with results due before Christmas. Not only will it give me some sort of piece of mind, I can then correctly focus, depending on the outcome, directions to take in regards for avenues to follow and explore. Through a forum, I found a women who has been organising this XMRV test opportunity for the UK. The blood samples are to be taken at a London clinic, shipped to the US laboratory (linked to WPI) and the results sent back. Nowhere as of yet in the UK offers this test, so many thanks has to be given to the clinic for coordinating this with the US laboratory and the women who has made all of this possible, for which I am very grateful. I thought I would be very scared if it is found that I do have this retrovirus, but strangely I am not. In fact, as my condition should not decline any further past my current worst (I have many symptom fluctuations), having XMRV confirmed would only aid possible improvements in health once treatments are researched and created.
Today I have been to the funeral of my best friends fiancées brother. It was a lovely service and has put for the mean time my personal negative feelings about my illness into some perspective. My thoughts go out to the family and friends.
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I want to congratulate you on your blog. I learned some stuff reading through it. I lived in Kent before I was diagnosed and couldn't even get a mental health referral as all lists were 'closed'. It was much better in Dorset where I got a diagnosis and a referral to an ME clinic.
ReplyDeleteI'm watching your progress with the blood test with interest.
All the best.