I'm just back from seeing my GP. When I last saw him nearly 3 months ago, he had promised to refer me back to where I got my original diagnosis to see what they were offering now, hoping that they could help me. Today he told me that he had received a reply from the Infectious Diseases team (for lo! that was where I was diagnosed back in 2003) that a) the doctor who saw me has now retired and b) they are no longer seeing ME patients because (wait for it - you're going to love this)"it is not an infectious disease". So why, I asked my doc, won't I be allowed to give blood one week from now?
They have suggested that I now be referred to the Homeoepathic Hospital as they are apparently offering a multi-disciplinary service there. Has anyone else been told this? I'm not holding my breath as I know they have long waiting lists.
So I am home with another load of Amitriptyline 50g. Don't get me wrong, my doctor is very supportive and he is just as frustrated with the lack of services here. And he had never heard of XMRV til I told him!
My brain is feeling very militant (but not in a Tommy Sheridan way so rest easy - I'm too knackered to swing) and if the flesh is willing, I've half a mind to go and try to give blood on Saturday and before they take it (if they do) ask why in 48 hours under law they can't.
Sorry for ranting but ....well, you all know.
How frustrating. I have a good few friends with CFS and ME (not sure of the differences) who have all been ranting (your word) about the odd decision to make sure you don't give blood. I *suppose* that, given they don't know what causes it, they have to err on the side of caution. Hmmm. Possibly another instance of our litigeous (sp) society, and someone might sue.
ReplyDeleteHugs to you - as always. Hoping for the best for you and the rest of my buds who have it.
LOL - it's Elaine, by the way :-)
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