XMRV Replication Studies

[joyscobby]

I don't think we should dismiss the IC report as completely as some here want to. Unless it was deliberatly fraudulent (which would be an incredibly stupid thing to do, with so many other replication attempts going on) there was some genuine problem with their ability to find XMRV or the CFS XMRV link is not as strong as the WPI research might have indicated. There were differences between the WPI and IC tests, but from what I've read, virologists would be surprised if these differences in techniques explained the differing results - scientists can end up with an unwarrented confidence in their techniques and current understandings, but I'll still give their oppinions some weight at this early stage. We'll have to wait and see, but the IC work would seem to indicate that replication attempts might be more difficult than we'd hoped. The IC group also reported that they'd heard others were having difficulty replicating the WPI results, and I've seen a couple of people here post similar things. We now have this Spanish group who have put their replication attempt on hold, apparently because they were having trouble too.

The evidence to support my statements is already in this thread. I understand that a lot of people are hoping for the best with this, I am too, but to me it seems that some people are being unduly XMRV-positive in dismissing some of the worrying early reports rather than I am being negative by being worried by them. I'm really hungry for some solid news about blinded replication attempts, but so far the hints and rumours have been less good than I'd hoped.

Unless someone knows better we cannot assume why the spanish study was delayed. It could easily be funding issues. if someone knows otherwise please correct me. As to the ICl so called study, the problems with it have been well discussed on this forum. Sience is not Apolitical and has and is used a polical tool. To deny this is either niave or part of a political agenda itself.
There are so numerous instances of this and but escape me at the moment. As I am still recovering from finding out I am XMRV+ve and being the first in th UK to go public. I am sure of many better quiped could do so though. Please note, I am now not alone as Dys has now stated his status as XMRV=ve, publically. So who is correct. We will soon know but my money is on the WPI team.

 

[fresh_eyes]

Unless someone knows better we cannot assume why the spanish study was delayed. It could easily be funding issues. if someone knows otherwise please correct me.

"aplazado hasta nuevo aviso por dificultades de reproduccin de la tcnica utilizada en el estudio original" =

Postponed until further notice due to difficulties in reproducing the technique used in the original study.

 

[Esther12]

We don't have any proof that the XMRV link will not hold up. There were differences between the IC and WPI studies. I don't feel capable to judge what should be needed to replicate the WPI's studies, but from the assesments of the IC study I've read by those not previously involved with CFS campaigning, there seems to be a consensus that they should have found some XMRV if the WPI's results were going to hold up, and that either XMRV is only regional or somthing strange is going on with the IC or WPI's results. From what I've read, no-one seems to really know what's going on, but it seems that replicating the WPI's results is not going to be as simple as many had expected following the initial paper in Science.

The Spanish one hasn't been shown to be a true replication study - maybe they realised it wasn't a true replication study and pulled out (?) - but their pulling out is another worrying sign. Hopefully this week will bring news of a completed, blinded replication attempt which fully supports the WPI's reseach, and we'll be on our way to solid science and effective treatment. I still think that's quite possible, but the early indications have been disappointing.

I'm confused as to what part of my post you think is not based on fact, it seems to me I've asserted little more than my own concerns. Could you quote it?

 

[usedtobeperkytina]

What the IC study showed is that XMRV can not be found at all when techniques used are different. That is helpful in that we know how not to test for it.

And, seems the Spanish study shows they could not replicate techniques. (Notice it didn't say they failed to find the same results.)

Evidently, it isn't easy to use the WPI techniques, meaning it isn't easy to find the virus. That is the news we take from this. NCI, WPI and CC can't all be wrong. Something is going on there.

Maybe the assumption that different techniques don't make that much difference is the paradigm that needs to be thrown out. Remember, DeFreitas was sure she saw her virus in the samples, Houston saw the same thing. CDC saw it, but on second look, using different technique, they didn't see it.

Tina

 

[Alice Band]

Your original post Esther said

I'm increasingly dubious about this XMRV stuff. It looks like it''s either surprisingly difficult to replicate the WPI's work, or there's something wrong with the WPI's work.

Can you please provide any proof that it's "surprisingly difficult" to replicate WPI's work or there is "something wrong" with WPI's work?

You must be reading a different forum. I'm seeing lots of opinion on WPI, IC and the different methods but nothing factual at all to support either of your statements above. Most of the posters I have seen have argued any number of different scenarios and you chose to say "surprisingly difficult to replicate" (no proof) or "something wrong with WPI's work" (no proof).

I am trying to genuine understand why you would choose to say this and present only a small number of posters opinions (and then maybe misunderstand those) and only one part of someone's opinion only musings?

The reason I am highlighting this is to try and save people with cognitive problems who can only browse these threads from thinking that what you stated was either fact or the views of the majority of informed posters here.

 

[Katie]

I don't think we should dismiss the IC report as completely as some here want to. Unless it was deliberatly fraudulent (which would be an incredibly stupid thing to do, with so many other replication attempts going on) there was some genuine problem with their ability to find XMRV or the CFS XMRV link is not as strong as the WPI research might have indicated. There were differences between the WPI and IC tests, but from what I've read, virologists would be surprised if these differences in techniques explained the differing results - scientists can end up with an unwarrented confidence in their techniques and current understandings, but I'll still give their oppinions some weight at this early stage. We'll have to wait and see, but the IC work would seem to indicate that replication attempts might be more difficult than we'd hoped. The IC group also reported that they'd heard others were having difficulty replicating the WPI results, and I've seen a couple of people here post similar things. We now have this Spanish group who have put their replication attempt on hold, apparently because they were having trouble too.

The evidence to support my statements is already in this thread. I understand that a lot of people are hoping for the best with this, I am too, but to me it seems that some people are being unduly XMRV-positive in dismissing some of the worrying early reports rather than I am being negative by being worried by them. I'm really hungry for some solid news about blinded replication attempts, but so far the hints and rumours have been less good than I'd hoped.

Are you referring to hints and rumours about blinded tests being conducted or not being conducted or rumours that XMRV is not panning out?


On the Spanish study. If they are having trouble with their PCR methods it could be that they couldn't find the spiked samples. Retroviruses are hard to find, specific ones especially, it's not like you can pop a blob of blood on a slide and have a look to see XMRV waving back up at you. If medical science were that simple we've have a heck of a lot more answers about everything that we do now. Let's not read too much into things, most of us are new to this process and the medical science field as a whole, the majority of us are speculating and guessing even with a little knowledge under our belts. It's too early to confirm or write anything off completely.

 

[Mithriel]

PCR is only easy when you have spent a long time developing standardized probes and primers.

Think about them finding what caused bacterial diseases as an analogy to what is happening now. Finding a way to get the bacteria to grow was very difficult, it took a lot of experimentation. Now you just order in the right type of agar plate.

Then you had to have the right sort of patient. Two patients could both have a fever but very different bugs could be causing that fever.

XMRV exists. They have infected tissue lines with it and taken pictures of it. Virologists I know are amused by the idea that the ICL study "proved" XMRV doesn't exist in the UK.

Viruses are tricky little beggars. We have known about them for over a hundred years yet they are still not well understood especially compared to bacteria.

Modern technology and biochemical insights have suddenly given us the tools we need but it is a new and emerging science. It is EXCITING, I can't believe how anyone can have a negative outlook. The WPI buildings aren't even finished!

Mithriel

 

[Robin]

Your original post Esther said

I'm increasingly dubious about this XMRV stuff. It looks like it''s either surprisingly difficult to replicate the WPI's work, or there's something wrong with the WPI's work.

Can you please provide any proof that it's "surprisingly difficult" to replicate WPI's work or there is "something wrong" with WPI's work?

I am trying to genuine understand why you would choose to say this and present only a small number of posters opinions (and then maybe misunderstand those) and only one part of someone's opinion only musings?

Esther qualified her statement ("it looks like") and what follows is merely her opinion based on what she's read. No poster is obligated to support the majority view here, whatever it may be.

She's explained her point of view sufficiently:

I don't feel capable to judge what should be needed to replicate the WPI's studies, but from the assesments of the IC study I've read by those not previously involved with CFS campaigning, there seems to be a consensus that they should have found some XMRV if the WPI's results were going to hold up, and that either XMRV is only regional or somthing strange is going on with the IC or WPI's results. From what I've read, no-one seems to really know what's going on, but it seems that replicating the WPI's results is not going to be as simple as many had expected following the initial paper in Science.

So, let's get off Esther and back on topic, OK?

 

[Robin]

Viruses are tricky little beggars. We have known about them for over a hundred years yet they are still not well understood especially compared to bacteria.

Modern technology and biochemical insights have suddenly given us the tools we need but it is a new and emerging science. It is EXCITING, I can't believe how anyone can have a negative outlook. The WPI buildings aren't even finished!

Mithriel

Well, I have a cautious outlook as the jury is still out (and likely to be sequestered for a loooong time!), but I embrace your sense of excitement. It seems like this is a kind of frontier medicine where the basic science is still unmapped. There are only three other known retroviruses and XMRV seems to be presenting new challenges yet unseen. I LOVE that the retrovirologists are all over this.

One thing is certain: we are in for a roller coaster here in the next few months. Expect more disparate findings, challenges, and editorial drama!

 

[Esther12]

edit: whoops -looks like Robin got in with a clarification before me.

'It looks like' - emphasising the continuing uncertainty here and our reliance on preliminary work, making it clear that my claims are being made tenuously and have not been proven.

'it's surprisingly difficult to replicate the WPI's work' - The failure of the IC to find XMRV and the various analyses of this work. IC reporting that other replication attempts were failing to reporoduce the WPI's work. The Spainish group now pulling out. Other's here have posted that they'd heard rumours of failures to replicate the WPI's findings (I think in this thread and others http://forums.aboutmecfs.org/showthread.php?1213-News-of-replication-of-WPI-XMRV-study ?)

'or there's somthing wrong with the WPI's work' - whenever it looks like there's been a significant breakthrough, it's always worth maintaining a level of scepticism. When people are saying things like "I think this is turning the standard testing in retrovirology on its head" it's always worth remembering that mistakes can happen in extraordinary ways. It's possible that there's somthing wrong with the WPI's work that has not yet been identified. I really don't know what this could be, and the original paper is Science looked very strong, but it's still a possibility.

The sentence you quoted doesn't claim to be representing the majority of posters here, and began by indicating the uncertainty of my claims. What a boring forum this would be if every sentence was meant to be representative of what the majority here thought.

 

[Alice Band]

Thanks for making that clear. Much apprecaited

 

[Esther12]

No problem.

 

[Rita]

On the Spanish study.
Dr Ferran who directs the study, is a private doctor,and explained in his forum that two Italian laboratories that would fund the study abandoned after the results of the study English at King's College.
Going to be a large study with 100 patients and 100 controls CFs.
100 CFSpatients needed two stress tests, Fukuda and Canadian criteria, demonstrated cognitive problems, and immune disorders, to be in the study
He said they requested the test method to WPI and they gave it not because he would be on sale soon. They also needed XMRV plasmid nor the WPI will provide it.
The Spanish patients want to know the source of our illness and have a cure, as we hope all .We want to confirm if a part of the SFCs, a subgroup, have a retrovirus that alters our health. Our health authorities do not recognize the disease and we pass an ordeal. About the retrovirus XMRV, they have said that it is not proven and will not do anything until proven. So it is so important for us to validate the study of WPI ASAP.
Yet we have no XMRV test in Europe, we hope them as soon as possible, but that be the corrects ones.

 

[Esther12]

On the Spanish study.
Dr Ferran who directs the study, is a private doctor,and explained in his forum that two Italian laboratories that would fund the study abandoned after the results of the study English at King's College.
Going to be a large study with 100 patients and 100 controls CFs.
100 CFSpatients needed two stress tests, Fukuda and Canadian criteria, demonstrated cognitive problems, and immune disorders, to be in the study
He said they requested the test method to WPI and they gave it not because he would be on sale soon. They also needed XMRV plasmid nor the WPI will provide it.
The Spanish patients want to know the source of our illness and have a cure, as we hope all .We want to confirm if a part of the SFCs, a subgroup, have a retrovirus that alters our health. Our health authorities do not recognize the disease and we pass an ordeal. About the retrovirus XMRV, they have said that it is not proven and will not do anything until proven. So it is so important for us to validate the study of WPI ASAP.
Yet we have no XMRV test in Europe, we hope them as soon as possible, but that be the corrects ones.

Thanks for the info. I guess there are only so many replication studies which the WPI can be involved in at one time (I don't know how difficult it would have been to provide the assistance the Spanish researchers wanted). I'm desperate for results from one of them soon, but it's better that they be thorough than pander to my hunger for news. I wonder how many other researchers will have been put off by the London study, and how long it will be before one of the replication attempts that the WPI has been working with will report.

 

[joyscobby]

Am I right that it was

Lack of funding,
lack of cohort (clearly defined) ,
not having a sample of XMRV

that made them do this, postonement not as put out that

they could not find it due to replication problems (ie it was not there to be found or could not find it)

Funding was withdrawn due to ICL study.

Have I got it right

 

[MEKoan]

I'm desperate for results from one of them soon, but it's better that they be thorough than pander to my hunger for news.

Hi Esther,

This is the only thing you can do anything about: your desperation and hunger. Much patience will be required of all of us and we will fare best if we can keep an open mind while being patient.

If we attach ourselves fiercely to any outcome, we risk suffering. No matter which opinion we attach ourselves to, we will rise and fall with its popularity as we work towards uncovering the truth. Why not maintain an attitude of not knowing (since we simply don't) while it all plays out.

 

[Esther12]

Am I right that it was

Lack of funding,
lack of cohort (clearly defined) ,
not having a sample of XMRV

that made them do this, postonement not as put out that

they could not find it due to replication problems (ie it was not there to be found or could not find it)

Funding was withdrawn due to ICL study.

Have I got it right

That was my understanding. It sounds like it never really got off the ground, rather than them really having problems with replicating the WPI's techniques.

Hi Esther,

This is the only thing you can do anything about: your desperation and hunger. Much patience will be required of all of us and we will fare best if we can keep an open mind while being patient.

If we attach ourselves fiercely to any outcome, we risk suffering. No matter which opinion we attach ourselves to, we will rise and fall with its popularity as we work towards uncovering the truth. Why not maintain an attitude of not knowing (since we simply don't) while it all plays out.

That all sounds rather enlightened. I'm trying to stay commited to my uncertainty, but it's hard not to get caught up in our hopes.

 

[Martlet]

Esther qualified her statement ("it looks like") and what follows is merely her opinion based on what she's read. No poster is obligated to support the majority view here, whatever it may be.

She's explained her point of view sufficiently:

So, let's get off Esther and back on topic, OK?

Hi Robin

I'm glad you stepped in here, because I was about to respond in a similar vein. I'm glad to see that we are now back on topic and hope this will continue.

 

[MEKoan]

That all sounds rather enlightened. I'm trying to stay commited to my uncertainty, but it's hard not to get caught up in our hopes.

Hey Esther,

Yeah, that's exactly right! I'm trying to stay committed to my uncertainty, too.

And, yeah, for sure, it's hard. Very hard.

I just find not doing it harder. Way harder.

 

[Martlet]

Koan

Add me to the uncertainty list of commiteds.

I must admit that it was hard while watching the Bateman presentation, but I soon picked up my uncertainty again once it was over.

Next comes the Mikovits talk, then I might waver a little bit, but until there is a reliable test, I remain very cautious.