FDA and NIH confirm WPI XMRV findings (report of leaked presentation)

[jeffrez]

Since XMRV appears to be associated with prostate cancer, my guess is that what HHS/CDC are trying to do is *disassociate* it with CFS. That way they can go about taking seriously and treating XMRV prostate cancer, while continuing to ignore CFS for as long as necessary, in case it's not easily treated with anti-retrovirals (or for however long is politically expedient or necessary - i.e., probably forever).

If they didn't do that, the public would still worry about a CFS link with XMRV. But if they squash that association, they can say, "oh don't worry - it doesn't cause CFS so 1) you don't have anything to worry about (if you're a woman), or else 2) you don't have prostate cancer yet, so don't worry - we will give you antiretrovirals." Then they're off the hook and don't have to worry if the anti-RV fails - at which point they just go ahead with their big money-making anti-cancer regimens anyway.

 

[dannybex]

That journal is getting pressure from *someone* not to publish. Maybe not the CDC directly, but probably from higher ups at HHS. This is just too bogus by far.

It might have something to do with the blood donation issue. If so, then I would think they'd want to have some sort of screening test available, since so many 'healthy' folks also have XMRV.

???

 

[John Leslie]

Thanks for the info. These CDC guys must know that the WPI will not let them off the hook. They should both publish and see which study passes scientific muster.

 

[Megan]

I don't see how these two studies will be published soon if they are looking for consensus. I thought consensus was generally reached in science by publication of conflicting information so that the evidence can be seen, judged and subsequently investigated up by all. Are there any scientific types that can comment on this, or on what they think is going on?

I can see that government may wish to get 'all their ducks in a row' on this, but isn't this for everyone elses benefit, not ours? If they are worried about publication of a positive study I think they are getting their 'knickers in a knot' too much about it. As far as I can see, apart from our small community, no one else cares too much about this at all. We are still well and truly invisible. Eg. no media reaction at all to the Alter report. Even from a blood bank perspective if you looked at the slides from the Alter presentation it's clear that there are many blood bourne viruses that are of concern with blood transfusions, XMRV is but one.

 

[taniaaust1]

antibiotics are for bacteria, HPV is a virus so no connection

Thanks for correcting me Ash. It must of been something else then which I read about could of been given during labour in a drip to make sure there is no transmission.

http://en.wikipedia.org/wiki/Laryngeal_papillomatosis the HPV only is transmitted in this way and does this in 2 per 100,000 adults and 4.5 per 100,000 children. Apparently most babes who catch it from their mothers during birth kill it off so problems dont manifest. My child appeared healthy but her system couldnt kill it off hence then her having the rare lifethreatening issue. It's just one of the rare medical conditions which has happened in my family (my other daughter was born with a different very rare problem). I dont know if the issue was cause my HPV was such a severe case (i'd been recommended to have an abortion due to it and they were worried I was going to get cancer as it was going crazy).
.................
could something as common as HPV make ones more susceptable to getting something like XMRV...... so many things they need to find out

 

[taniaaust1]

i hope the CDC dont take another 6mths to get its act together so it doesnt appear completely useless by doing it's testing wrong. i hate the thought of all the tests being done again before it will allow publication.
We may all be in for a much longer wait then we thought.

 

[George]

I don't know for a fact but based on recent information, I believe the CDC study which was done early on looked at the ENV capsid area of the XMRV virus. Turns out that's not good cause that's where all the mutagenesis takes place in our lovely virus. Also, I think it might be a PCR only paper and Dr.s who know, know that PCR only won't net you XMRV. Can't wait to see if the CDC releases it. I've needed something to sink my teeth into. (grins)

 

[usedtobeperkytina]

I don't see how these two studies will be published soon if they are looking for consensus. I thought consensus was generally reached in science by publication of conflicting information so that the evidence can be seen, judged and subsequently investigated up by all. Are there any scientific types that can comment on this, or on what they think is going on?

I can see that government may wish to get 'all their ducks in a row' on this, but isn't this for everyone elses benefit, not ours? If they are worried about publication of a positive study I think they are getting their 'knickers in a knot' too much about it. As far as I can see, apart from our small community, no one else cares too much about this at all. We are still well and truly invisible. Eg. no media reaction at all to the Alter report. Even from a blood bank perspective if you looked at the slides from the Alter presentation it's clear that there are many blood bourne viruses that are of concern with blood transfusions, XMRV is but one.

Ditto, what I was thinkiing. CAA just linked to a blog saying some of the news reporting on XMRV studies did not take into consideration that conflicting results or differences are part of the progress that leads to conclusions, that one study does not prove anything.

So, then why are these guys holding back. If their subtle differences help move science forward, then it is shameful they are holding back, pulling studies, etc.

Tina

 

[V99]

Well said Tina. I cannot believe they think they can hide this study right now. It's a cover up, but I doubt whether other retrovirologist's will let this happen. It's bigotry pure and simple. I am outraged right now. If any official is reading any if this right now, pull you finger out and let the papers be published.

Cort I suggest a blog, front page with a clear headline. Let's create a web storm.

 

[V99]

The question is how long do they think they can stop the papers being published? Are we still going to be waiting in 6 months time?

 

[Tembo]

This is soo frustrating!! argh. I hope they dont draw this out too long.

 

[George]

I think the longest they can probably hope for is August.

 

[usedtobeperkytina]

Welcome to the world of CFS, where what is right is taught to be wrong and what is true is hidden.

Where politics governs the process, and not standard scientific process or scientific evidence.

Where always is heard a discouraging word.

The twilight zone of medicine. Our own labyrinth. Where rules don't apply. Where opposite day is every day. Where things remain the same, like the movie, "Groundhog Day."

Tina

 

[usedtobeperkytina]

Now, there is a silver lining. They (and you know who they are) know this will be big news. This isn't being handled by low level folks. This is big so higher ups have gotten involved. They know it will cause a stir, either way.

Either way, we have a high health department official's attention. Being "handled" shows it is powerful info.

Tina

 

[Megan]

Meaning of zero findings in negative studies?

I have heard from a reliable source that a large CDC study was entirely negative, from which I can only conclude that they have had a completely zero finding as did the other negative studies. According to my calculations this means the negative CFS studies will have tested well over a thousand people (patients and controls) without finding one infected person.

This is aside from the prostate cancer arena where a similar thing was happening eg. the German study of approx 600 people that was entirely negative.

If the virus is really out there infecting the population then even if it is not associated with CFS it is difficult to believe these studies would not have randomly picked up a few infected people. If say 4% of the population has it, then they should have picked up approximately 40 people (probably more if the CDC study is large). That's not counting the negative prostate cancer studies, which would lift this figure even higher.

Logically, the negative studies can only be right then if XMRV doesn't exist out there at all. But given the number of studies that have now found it this seems unlikely - they can't all be contaminated! And the retrovirologists like Coffin and Goff are saying XMRV is real and is out there, though they are more cautious about accepting specific disease associations. Wouldn't this leave the naysayers in a tight spot? How do they explain completely negative findings without conceding there might be a testing problem?

 

[Gert]

This will be an attempt to shut down research I think. After all Cfs doesnt threaten a large part of the male population. They will confirm a prostate cancer link if there is one. Lets say our prayers cause we are going to need a miracle here.

These people are completely money/politico. Pshycopaths without conscience.

This video is Dr Maurice Hillerman, the worlds leading vacine expert, chief of Mercs vacine program. He explains the origin of Aids which was cut from public disclosure.

Yep vacines made from African Green monekys. There's info here about the SV40 vacine and cancer etc. And it all seems to be a bit of a laugh to these nutters. This is an audio of Dr Hillerman with his picuture and its possibly fake but I think its worth watching.

[video=youtube;rSc8mJtem0k]http://www.youtube.com/watch?v=rSc8mJtem0k[/video]

Is this just too crazy to believe. Sorry there's an ever crazier drug on the market for reflux and as reflux can be symptom of cfs as it is with me i'll post this video also. Reglan if used for more than 12 weeks will give 20% of patients a very nasty parkinsons like illness called Tardive Dyskinesia. No kidding here. There is a big warning now on the pack but while you are still on Reglan, Tardive Dyskinesia is masked so you dont know your getting it. Its also incurable and completely disabling. I.e Patients can be completely bedridden. All to treat acid reflux.

[video=youtube;c4o-T1YSj_k]http://www.youtube.com/watch?v=c4o-T1YSj_k[/video]

 

[George]

Ya Gotta look at the GAG (grins)

I have heard from a reliable source that a large CDC study was entirely negative, from which I can only conclude that they have had a completely zero finding as did the other negative studies. According to my calculations this means the negative CFS studies will have tested well over a thousand people (patients and controls) without finding one infected person.

This is aside from the prostate cancer arena where a similar thing was happening eg. the German study of approx 600 people that was entirely negative.

If the virus is really out there infecting the population then even if it is not associated with CFS it is difficult to believe these studies would not have randomly picked up a few infected people. If say 4% of the population has it, then they should have picked up approximately 40 people (probably more if the CDC study is large). That's not counting the negative prostate cancer studies, which would lift this figure even higher.

Logically, the negative studies can only be right then if XMRV doesn't exist out there at all. But given the number of studies that have now found it this seems unlikely - they can't all be contaminated! And the retrovirologists like Coffin and Goff are saying XMRV is real and is out there, though they are more cautious about accepting specific disease associations. Wouldn't this leave the naysayers in a tight spot? How do they explain completely negative findings without conceding there might be a testing problem?

Hey Megan
The reason for the negative studies has been found. Per a recent video, ehem, it's fairly common for researchers to look at sequences in the Envelope gene of the virus. However, it turns out that XMRV has a high level of mutagenisis in the this portion of the virus. If researchers look at the GAG sequences and use the correct primer pair and culture the virus or use an additional method to plain PCR they will find XMRV every time. This is now known.

So even though we haven't seen the science "PUBLISHED" it is out there. There are currently 12 studies linking XMRV and CFS that are being held. Not just the ones outlined in the WSJ article. But the science is still being done by Major names in retroviral research. There is a lot of forward motion behind the scenes.

This delay is an effort for people in the (D)HHS to try to get a handle on the logistics of this new retroviral problem to the public.

 

[Gert]

Hello George

"There are currently 12 studies linking XMRV and CFS that are being held."

I hope you are right George. If you post a link to that video that would be cool.

Funny, they didn't "hold" the negative though studies did they. Although they are apparantly holding the latest negative CDC study. I think this was deliberately leaked by someone trying to stop the truth being suppressed. Such person is a hero in my eyes. We don't really know what angle CDC/FDA are comming from but I post these quite negative videos as a way of alerting us all to what is possible given the very recent and more distant past.
I wish I could post smaller sized video's and hope they aren't pissing people off to much. If we don't care about the millions who have died from HIV then we are just like those who haven't given a toss about us. I've seen plenty of CFS patients in forums and real life being pretty brutal to each other. There are many really good cfs people also. I hope watching this stuff doesnt make peoples lives worse. But if we blindly trust corrupt authority they might pull the wool over our eyes for another 20 years.

Its our continued questioining of those -ve studies that has kept this alive and we may have to keep the fight up for a while.

 

[Megan]

Thanks George,

I haven't seen those video's but I heard the roumor about the GAG and ENV. Though I find it hard to understand why the CDC would persist in publishing a negative study without investigating this as it will just make them look stupid in the end.

it's fairly common for researchers to look at sequences in the Envelope gene of the virus. However, it turns out that XMRV has a high level of mutagenisis in the this portion of the virus.

If the above is true I wonder if "a high level of mutagenisis" means other strains of XMRV or the other MLV as referred to in the Alter presentation?

Are you sure there are 12 studies connecting CFS and XMRV? I assume you mean positive studies? When I read the stuff about the video I thought people said there were two positive studies waiting to be published and one negative one? It's hard to believe they could be holding back 12?

 

[Cloud]

"This delay is an effort for people in the (D)HHS to try to get a handle on the logistics of this new retroviral problem to the public".

I gotta agree on that one. It would cause lots of panic and mayhem to release the information without a plan of action......"Oh guess what, millions of you are unaware of having a virulent retrovirus strongly associated with debilitating neuroimmune disease....and 4-7% of our blood supply is contaminated with this bug". The word "pandemonium" comes to mind.