Just read that Mary, are you saying this information does appear wrong then ? whats going on with this discussion im confused
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Hard to tell whats going on with these statements, any news would be so welcome but i understand it has to be done right, Dont know where these statements are coming from that JK was drawing blood, he certainly didnt at ashford, it was a NHS nurse, all i saw was NHS nurses doing it, Would be interested to know where all this extra information is coming from, doesnt sound right to me. Especially the JK bit ? Anyone ?
The study is being done only to confirm the presence of XMRV in the UK.
This was planned following the farce that was Wessley and Mclure's study in which she stated it didn't exist in the UK..
No controls were needed.
... The worrying thing for me is, as im not as ill as i was in my first 5 years of illness, if the viral load becomes harder to detect as health improves. indeed can the viral load alter ( no pun ) as the symptoms alter. i would have been happier to have been tested during a crash period. who knows how significant or not that could turn out to be for testing purposes. Worrying, who wants a false negative due to increased better health after living with this for 16 years, and have had so many bad periods in all that time, that in some ways im mentally destroyed by it. I almost fear a false negative, more than a true positive at this stage in my life. Need the truth so bad it hurts. Im sure you can all understand that, and feel as i do
Free at last,
You are sounding very brave here. I was emotionally very fragile whilst waiting for my results but it was only 5 weeks or so. Some people in the sample are sure to test negative and as they all went through the exertion/stress of getting to the test site, they obviously want to know the truth. For those negative we need to support them extra hard and to let people know that we will not give up until everyone has a clear result (may take years to get tissue tests for example) and/or what the reason for their illness is. No one should be left behind.
Not brave at all ukxmrv, im probably the least brave person around who has dealt with this. But your comments are spot on, there could be many reasons why some may get a negative result ( discussed only one here but we know of others ) so of course negative at this stage might not really be negative at all. and i for one ( as im sure all will on here ) will not allow ourselves to veiw the negative patients any differently to the positive ones. I certainly know how it will feel ( well actually im guessing but you get the point ) to get a negative result, and after the things ive experianced no one on this earth will ever tell me my immune system was not under attack in some way, leading to chronic illness. even if that negative result happens. so of course knowing all this means, I also know the other persons perspective if found ( for the present ) negative. even if im found positive.
To cut a long story short, we can relate. But i would be lying if i said i didnt ach for the truth. But the truth has to be a reason, ( has to be a clinical reason ) to many years of not knowing going round and round with this, trying to figure why this has happened and what is causing it. Theres also dignity ( our own ) to the huge dis belief aimed at us all, isnt there.
I know you and others know what i mean. I wonder if MLVs ( ALTER ) Will show in this study
Important question that i feel, especially if a negative happens to some of us ( which it will )