knackers323
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with all this talk over the last six months or so does anyone know when we should get an answer as to if this virus is part of our problem or not?
XMRV, when should we get an answer one way or another
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Sing
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Today, I was wondering exactly the same thing. It seems to me that we ought to be learning something new soon about XMRV. 
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Since the Science article we've had three negative and no positive studies.
But we've also heard from a few sources that XMRV is harder to detect than many expected.
There were rumours that the CDC were due to report in January, but there's been nothing yet. If the CDC fail to find a link between CFS and XMRV, then I guess we'd need to see if the WPI results held up under blinded conditions. If not, then we'd know.
A positive study could come at any time. Or if the WPI's work was to hold up under blinded conditions, that would indicate they'd found something that allowed them to distinguish between blood from CFS patients and healthy controls. I don't know if the WPI or one of their collaborators is working on getting a blinded follow-up study published, but that would be a great way of showing people why they're so confident about their work.
The lack of good news so far makes me think that we're either in for a lengthy wait, or the link won't hold up. I was day-dreaming about being on some exciting treatment by the summer. Come on people - I've got plans!
But we've also heard from a few sources that XMRV is harder to detect than many expected.
There were rumours that the CDC were due to report in January, but there's been nothing yet. If the CDC fail to find a link between CFS and XMRV, then I guess we'd need to see if the WPI results held up under blinded conditions. If not, then we'd know.
A positive study could come at any time. Or if the WPI's work was to hold up under blinded conditions, that would indicate they'd found something that allowed them to distinguish between blood from CFS patients and healthy controls. I don't know if the WPI or one of their collaborators is working on getting a blinded follow-up study published, but that would be a great way of showing people why they're so confident about their work.
The lack of good news so far makes me think that we're either in for a lengthy wait, or the link won't hold up. I was day-dreaming about being on some exciting treatment by the summer. Come on people - I've got plans!
Sing
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Thanks Esther 12! I too was hoping for a standard, accepted test and a possible new treatment this year. I don't have any plans, but was hoping that my body would be rescued from its descent at 60 with CFS, which is picking up what to me is an alarming momentum....
pollycbr125
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must admit im getting a bit impatient too im normally pretty laid back about stuff but i think its because this xmrv virus sounded so convincing and wpi seemed so confident and on the ball none of us really envisaged the problems weve had with replication . though tbh no body has really tried to replicate it.
unfortunately for us i think its going to be dragged out as long as possible . too many folk have too much to loose whereas were pretty much seen as indespensible even though its us that this affects .
im hoping theres some serious attempts to replicate asap but unless the psychobabblers are moved out of the eqaution its gonna take time . wessley et al aint gonna pass up his pension fund without a fight .hes made a lot of money out of us due to our so called 'false illness beliefs' and hes saved the government and insurance companies millions .
unfortunately for us i think its going to be dragged out as long as possible . too many folk have too much to loose whereas were pretty much seen as indespensible even though its us that this affects .
im hoping theres some serious attempts to replicate asap but unless the psychobabblers are moved out of the eqaution its gonna take time . wessley et al aint gonna pass up his pension fund without a fight .hes made a lot of money out of us due to our so called 'false illness beliefs' and hes saved the government and insurance companies millions .
We really need some results soon, the waiting is pretty bad , for me its like living in limbo.
He'll get a pension alright , but hopefully not anything else,(I really couldn't bear a knighthood
) , yes he has saved the insurance cos and the government a lot money, but he may not be as popular with the powers that be whan they realise what his non/treatment is going to cost them in the long term
What standard of proof are people waiting for? It might help people if they got clear in their minds what event they are waiting for.
If it is a proper replication study that will take time. The argument (especially in the UK or if the CDC take their time) is not going to go away even when there is a replication. I feel that even with this, the argument will go on, that somehow it was not done "properly" or nitpicking over patients or contamination will continue.
I've gone ahead, had the test and am following the Internet to see what other xmrv+ patients are doing, so no change there for me. Have been doing this since the Internet is invented. I'm prepared to take the risk and do this now, because for me, there is simply not very much else available, and I'm not getting any better.
Been disappointed before (lived through the Elaine Defreitas time) so I know exactly how gut-wrenching this can be.
I'm come to terms that with this disease it is all that I can do, as I don't have the money to travel for treatment. It's a calculated risk and yes, I am desperate.
If it is a proper replication study that will take time. The argument (especially in the UK or if the CDC take their time) is not going to go away even when there is a replication. I feel that even with this, the argument will go on, that somehow it was not done "properly" or nitpicking over patients or contamination will continue.
I've gone ahead, had the test and am following the Internet to see what other xmrv+ patients are doing, so no change there for me. Have been doing this since the Internet is invented. I'm prepared to take the risk and do this now, because for me, there is simply not very much else available, and I'm not getting any better.
Been disappointed before (lived through the Elaine Defreitas time) so I know exactly how gut-wrenching this can be.
I'm come to terms that with this disease it is all that I can do, as I don't have the money to travel for treatment. It's a calculated risk and yes, I am desperate.
pollycbr125
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quote maryb I really couldn't bear a knighthood
sir simon wessely ...... no no no that would give me nightmares
sir simon wessely ...... no no no that would give me nightmares
lostinthedesert
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To me the proof comes when treatments that target xmrv start to make a significant number of people well. To me anything short of this is meaningless. Peace, S
jimbob
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I'm 60 like sing and 26 yrs with this! My patience is running thin!
Most labs running replication or validation studies probably did not get started until November-December 2009, some are probably just starting now. A good study takes several months to plan, collect, test, evaluate and write-up. Then they have to go through the peer review process and then wait for publication, which takes several more months, for a fast journal anyway. If there are problems with the article, the peer review process will take longer (six months to a year), if there are no major problems, the article can be peer reviewed and approved in a month perhaps.
So my guess would be at least six months from start of study to publication in the best case scenario. Therefore based on the starting time, we could get a nice group of studies some time early in the summer. One or two studies here and there are not enough, 8-10 studies that generally agree start becoming significant in a statistical meta-analytical sense. So IF we get that many studies that agree, and IF the best case timeline works, there might be a preliminary answer early to middle summer. But if there is more debate, it could drag on for months, years, even decades.
However, the studies will appear singly, and probably be analyzed individually by everyone, so we may have some reports before summer.
So my guess would be at least six months from start of study to publication in the best case scenario. Therefore based on the starting time, we could get a nice group of studies some time early in the summer. One or two studies here and there are not enough, 8-10 studies that generally agree start becoming significant in a statistical meta-analytical sense. So IF we get that many studies that agree, and IF the best case timeline works, there might be a preliminary answer early to middle summer. But if there is more debate, it could drag on for months, years, even decades.
However, the studies will appear singly, and probably be analyzed individually by everyone, so we may have some reports before summer.
G
Gerwyn
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Funny how wesselly arranged a peer review in a matter of days isnt it when ,as you correctly say it normally takes about six months
.You are also quite correct in saying that it takes months to plan a good study
The europeans tried to cobble together studies in weeks no wonder they produced unfalsyfiable totally ambiguous results.more time spent on design would have probably avoided this scenario.
They tried validation without replication and predictably failed to find the virus that they were presumably looking for
.You are also quite correct in saying that it takes months to plan a good study
The europeans tried to cobble together studies in weeks no wonder they produced unfalsyfiable totally ambiguous results.more time spent on design would have probably avoided this scenario.
They tried validation without replication and predictably failed to find the virus that they were presumably looking for
VillageLife
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the things which worry me are;
if the CDC And USA blood bank were showing good signs of finding xmrv in cfs patients, I'm sure doctor Mikovits wouldn't feel the need to do the up coming UK study!
I think someone should follow the uk study blood, to make sure it makes it to the UK airport. Otherwise it might get swapped over lol.
if the CDC And USA blood bank were showing good signs of finding xmrv in cfs patients, I'm sure doctor Mikovits wouldn't feel the need to do the up coming UK study!
I think someone should follow the uk study blood, to make sure it makes it to the UK airport. Otherwise it might get swapped over lol.
I want a cure right away too. I need one! I hoped for one this year, but it does seem unrealistic. We're lucky Mikovits keeps leaking us information, cortisol, anti-inflammatories, what they are up to, peptide T. Time goes slowly when you are checking the news every day. I agree with lostinthedesert. I wrote a post on XMrv, check, check, check, about why I don't think we should be pushing for blinded study. Just let them work and roll your pennies and send them the money.
usedtobeperkytina
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Not necessarily, village. It could be that she is sure of it in US (soon to be published) and she now wants to address the claim that it isn't in UK. Or check to see if it is a different XMRV strain.
I would think, honestly, that she wouldn't be doing a UK study unless everything up to this point for her has shown similar to what was published in Science article.
Tina
I would think, honestly, that she wouldn't be doing a UK study unless everything up to this point for her has shown similar to what was published in Science article.
Tina
The UK studies have all but buried XMRV in CFS,
I think Judy Mikovits so sure of it, she is going to prove them wrong.