@ Coxy,
lol...remembering things is not my best attribute either!! I am living in a marginal seat so hopefully this can work in my favour vis a vis MP's. I am just giving myself a little time for my XMRV result to sink in and to process it...+ I have crashed with the news so need to gain a little more fuel in the tank then hopefully i can start doing some lobbying and become effective. There is a offensive going on with the Wessely camp at the min...it is all just starting up, he is filtering his take on this, though unfortunately in practice this means that he is advising every GP in the UK through the BMJ how to treat ME/CFS as he is the 'expert' ...though how a psychiatrist becomes an expert on a biomedical disease is beyond me. I do believe there will come a time for us all to be involved in getting the message out but I do think we have to wait for some replication study results and the UK study for people to seriously listen to us.
@Danib, I am not science based either, far from it. I started looking at this PR site about 3 months ago in the same position as you...but things have changed for me radically on a personal level since then. I am very good at doing emotion but I just need to process it, what it all means and come to terms with it first, I seem a bit stumped with this one which is very unlike me! My XMRV is not a probability any longer...I have it and it is hitching a ride for life. I can understand your thirst and desire to know what is so wrong with you and I shared that, but now I kind of know I am not sure how to cope with it! I am as angry as you that nothing is being done about this...nothing moves quickly enough for me, but with this we are right at the start of science. With HIV we got to know about it in the UK circa 85/86/87, but it was known about in the US in circa 1981/2...in my opinion we are at that level of discovery now. The media just do not have anything concrete to go on at the minute which I know never usually worries them but if you read Prof Malcolm Hooper's report you will note that there is no such thing as a free press! There is a big responsibility issue with this too...this has the potential to scare an awful lot of people, this does have to be handled very carefully and the science has to be water-tight. With CFS/ME there have been so many viruses linked with it in the past, you and I know this one is for real, but the public, the gp's, the specialists etc don't, they remember all the other ones which ended up being wrong or unproven....this has to be right this time as there is far too much at stake for all of us.
So for a survival guide I would suggest; make sure that your core friends and close family are aware of XMRV so they are there for you when the result comes through. Be careful re possible transmission issues, ie, don't share razors, toothbrushes, have unprotected sex, give blood etc. Keep yourself updated with the news on XMRV. Keep talking to people on here where you can discuss your concerns and feelings with people who understand what you are going through. Try not to stress about it as that will only make you unwell, the virus reacts to the stress hormone cortisol. Urge your GP, your specialist etc to go to the IiME conference in London on 24th May to hear about the science behind XMRV (Dr Mikovits, Dr Cheney, Dr Kilmas are all going to be there), if we cannot get XMRV recognised through the top down we have to work hard at grass roots level to get the thinking changed on CFS/ME and undermine the current foundations...science is the only thing which will change their minds.
I hope this helps, I am sorry it is probably not the answer you wanted...please feel free to keep in touch.
