XMRV, when should we get an answer one way or another

[Countrygirl]

villagelife;58443]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!

Not necessarily, village. Dr Judy said in an e-mail to me that her aim in this study was to prove to the UK researchers and our government that XMRV has a British passport despite the negative reporting that it is a foreign alien. She wants to make the UK government sit up and take notice after all the news of failed validation attempts that were splashed in the media and medical journals.

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.

Good idea! Any volunteers? I'm sure we could rustle an ME army together to escort the precious cargo onboard.

 

[Gerwyn]

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.

I think that they doing the study to counter wessellys claims that there is no XMRV in the uk cfs population

 

[VillageLife]

Yes but if the CDC say xmrv is a problem surely the rest of the world will just bow to them!! Unless of course the USA prove xmrv but the UK go it alone and outrageously continue to say xmrv isn't in our country. Then America should be ready for millions of UK cfs sufferers moving accross the pond!

 

[maryb]

Then America should be ready for millions of UK cfs sufferers moving accross the pond!

Blinking heck how many? thought there were only a few of us, I'm already packed

 

[ukxmrv]

It's been assumed that when the money Invest in ME had put aside for Dr Kerr's project became "available" again, then they either approached the WPI to do this UK split study or the WPI had already spoken to them about something similar. We could have Invest in ME to thank for this.

 

[VillageLife]

Blinking heck how many? thought there were only a few of us, I'm already packed

Well lol! i'm sure we're be bringing all our family, friends and pets, cats and dogs lol!!! this will add up.

 

[knackers323]

so how do these things go? it will take another say 2 or 3 months to get the results from the current round of testing back? with hopefully the same positive result. then do other people have to run the same tests and get the same results to verify it, which will take another 2 or 3 months to become excepted? then do they start looking at possible treatments and trials that would probably last at the very least another year? does anyone have any idea of the time frame?

 

[Knackered]

so how do these things go? it will take another say 2 or 3 months to get the results from the current round of testing back? with hopefully the same positive result. then do other people have to run the same tests and get the same results to verify it, which will take another 2 or 3 months to become excepted? then do they start looking at possible treatments and trials that would probably last at the very least another year? does anyone have any idea of the time frame?

From one knacker to another:

Everyone will get their results back from the study 3 weeks after their samples were taken, I'm in the study so I'll be posting my results on here, maybe a few others will too. A thread will probably be created about it.
As for when the results will be published, I haven't got a clue, probably a couple of months later.

 

[knackers323]

so do we know anything yet? or are we still waiting, like usual.

 

[serenity]

still waiting i think but thanks for bumping this thread, i was wondering the same thing... when will we know!....

 

[Knackered]

still waiting i think but thanks for bumping this thread, I was wondering the same thing... when will we know!....

From what I've been told, there needs to be proof of immune response this could come soon, a replication study, and a clinical trial.

All three are in the works so some time this year. Most probably sooner rather than later.

 

[knackers323]

does anyone know when we should expect the next substantial news on xmrv?

 

[George]

Hey Knackers
The Phase II portion of the Blood working Group should be finished and available to the science community now. That protocol will tell us who is right and who is wrong in how to find XMRV in patients. (we're trying to get the info released)

Phase III which test the blood supply is suppose to be done by the end of the year

Phase IV which test general population for prevalence no later than January end of.

Dr. Singh has two studies one is a cadaver study that looks at tissue reseviours and the other is in collaboration with Dr. Bateman and the Dr.(s) Light which looks at unique bio markers for ME/CFS along with XMRV and that was is done but I think is still being typed up and will then be submitted for publication which can take up to 6 months (April/May)

The Ruscetti's are working on Pathogenisis of the illness but I don't have any more info on that, except to say the PVC-211 mouse model is evidently looking good. According to Dr. Miller it doesn't look like XMRV actually does anything to cell directly (neither dose HIV) but there is one protein for sure that causes neurological problems and there may be a problem with the virus itself keeping inflammation up constantly.

The Hanson study is being done in stages and isn't slated for publication anytime in the coming year so don't know on that one.

Finally the NIH has taken down their CFS web site and will put up a new ME/CFS website but not sure of the date on that either. Right now it's just a more or less blank page with a "check back later" on it. The NIH has also said that they will be holding an XMRV conference in April/May to give a state of play and that it will be broadcast. Since all the Phase trials will be done by then and pathogenisis should be established at that point I would say that will be the "biggy". I'd bet a bone on it. (grins)

That's all I know right now looking forward to what others have to say.