WPI UK XMRV testing/study

free at last

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Just read that Mary, are you saying this information does appear wrong then ? whats going on with this discussion im confused
 

ukxmrv

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Free at last,

I wasn't in a crash (although I never have remissions) when I had my blood drawn for the XMRV test and my result was a +
 

free at last

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Not having remissions might make a difference ? but i really havent a clue, time will tell i guess. But i dont thnk having improved health rules it out. one because i still get ill, and two the illness since day one has appeared like a viral attack. Scary to think some of us could be back to square one with a negative result. but i support all those that may. who knows i may turn out to be one of them, and what i went through suggests otherwise to me. But its the truth thats important.Having a negative result may mean some of us will never find out, seems unfair but ive learned life isnt always fair. as so many of you have also found out

Cheers ukxmrv for your info. ill share my results when i know. good luck everyone whatever truth you need
 

Bob

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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 info is from the CFS Central blog... It says that Jonathan Kerr drew the blood for the healthy controls, which tested positive at 4%.
http://www.cfscentral.com/2010/09/xmrv-conference.html
 

Bob

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... 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
Hi freeatlast,
I totally understand where you are coming from here... That would be exactly my worry if I was getting tested...
I think I'm in a similar situation to you, as I think that my illness has moved from an acute stage to a more chronic stage (if there is such a thing for ME), as my health is far more stable than it used to be when i first got ill 7 years ago. I can't help feeling that the virus is now hiding deep in my tissues, as I haven't had a major relapse for a while now.

In a way, a negative result would bring me even more worries than a positive result (i.e. Will I be bypassed by the new scientific developments? Will other people with ME get treated while I am left on the CFS scrap-heap? If I haven't got a retrovirus, then why am I ill? etc.)

With a positive result, I would hope that it might bring me some answers and a treatment sometime soon. Whereas I would feel that a negative result might leave me in a situation with even less answers and hope than i have at the moment.

I think that what we need to keep remembering is that the current studies are only for research purposes. The reason for the research is to advance the science and to try to understand the science behind the virus, about which we know almost nothing at the moment. So the studies aren't supposed to give any definitive answers, for those testing either positive or negative.

At some point over the next year, I'm guessing that they might develop a standardised diagnostic test for XMRV's, and that everyone in our community will then have to be tested or retested for a definitive answer to their viral status.

So i think what i'm saying is... try to hang in there... we're not all going to get all of our answers straight away, as hard as that is for us all to deal with.
And remember that we're all in the same boat... none of us have real answers yet, not even those who are testing positive... And Judy Mikovits has said that she won't leave anyone behind... She is dedicated to all of us, whether we test positive or negative.

Well, these are my thoughts that i've been thinking about for some time now... i thought i'd share them, for what they're worth.

Take care,
Bob
 

free at last

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Wise words there Bob, thanks for that, its easier to deal with when i can see im not alone on these fears, worrys, and implications.
 

ukxmrv

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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.
 

free at last

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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 )
 

Bob

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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 )
hi free-at-last and ukmxrv,
it's nice to read both your thoughts here... I totally agree with what both of you have said here... I hope our whole community will all be able to stick together and support each other, whatever the test results of individuals, and whatever direction the medical science takes.