Retrovirology Publishes Five Papers on XMRV and Contamination

[Bob]

Its amazing how fast the UK media has jumped on this - they ignored the Alter study and they are going to town on this one......I don't see much from the US, though....quite a few Science blogs....but other than the WSJ - no major papers yet.

Yes, I'm stunned at how the "XMRV is dead" articles have been pumped out so quickly and eagerly, in a very unbalanced way. Someone's had their PR machine working overtime!

The BBC article is totally unbalanced, which goes against their code of practise. But the BBC article will probably change over the next couple of days, as I expect lots of people will complain about it. (I have already)

 

[free at last]

Two points im taking to bed with me ( call me hopefull )
Seems obviouse the release all at once was designed to create as much damage as possible, to win a argument, as if the argument is more important than the truth, or the science. does someone not want this to be real ?

The second point strangly seems in the same vein ( no pun intended )

If the conclusions of xmrv being linked to ME/CFS are really all just contamination issues, seems odd how so soon not everybody is agreeing with that viewpoint, one of them a very cautiouse ( from a contamination veiwpoint ) researcher
Again someones stretching here, is it Coffin perhaps ? or a group that has ties with the IT MUST NOT BE SEEN TO BE REAL under any circumstances brigade.

I know what seems likely. There Science, of its all contamination, had better hold up in the next year, because if it does not, who will be asking questions about the day 4 studies are released, one of them point blank saying sorry where right the WPIs wrong.

They had better be right, because if not, the way they handled this, should really call for there jobs by many of us, and in society and goverment complaints.

If they are right fair enough, i can see why such strong conclusions.

But if they are not, then clearly it is just another case of, if we can kill this research we will, the truth is less important than winning a argument. its not the science that bothers me, infact thats a good thing, its just that in circumstances where nothing is certain, or there science is not 100% definitive as they seem to want the world to belive. Then clearly a game of sorts is being played on us here, over to the Americans for the game of truth. if it is contamination then i have nothing to forgive, if it is not, then man ill have to try real hard to forgive those that played there hand in such a manner. Stoye was at the BWG for a reason, to get the input about what you guys knew or were discovering, prior to this release today. a insider if you will. Clever very clever mr britain

 

[Sean]

"The strongest lesson is that we must fully use robust guidelines and discriminatory methods to ascribe a cause to a disease."

Fine, and in fact I support that statement. If only those from another and very dominant school of thought about ME/CFS would practice such an approach.

 

[Esther12]

Fine, and in fact I support that statement. If only those from another and very dominant school of thought about ME/CFS would practice such an approach.

Genuine lol.

I'm half-hoping for a quick statement/twitter/facebook posting from the WPI or associates before I go to bed. I should really be winding down from all this by now though. It's so easy to endlessly think "I'll just check for updates one more time."

 

[Marty]

advocacy...to much focused on validating XMRV, instead of focusing to validate the disease itself. ...this alone is a risky move when there is so much at stake. And association [of] a disease [with] a virus includes a lot more than just finding a possible pathogen...has to be proven, and this is a whole other chapter... I was arguing this topic for a long time now with people involved in campaigns and hoped just for the best. Obviously hoping is not enough, all this publication in the news of contamination shows how wrong things can go. There is so much politics involved here, so much at stake ......

Finally a level-headed comment to today's news, aruschima; thank you. You are spot on; our job is not to try to judge an extremely complicated science that very bright people have spent their lives immersed in. Those who have no scientific background, do not feel bad at all. Our job continues to be to advocate for the validity of our disease, with or without XMRV. Even if this were the discovery that we have waited for, and probably many things will change before that ever happens years from now, then there is yet another fight to be fought: getting the physicians and the public to believe, after all these years of calling us lazy and crazy. It is hugely complicated science and even more difficult, it is hard-to-understand politics and human nature. OK, be excited when the news goes our way, but don't be distracted from your job, and don't be discouraged if the news doesn't go your way. I too am glad to see today's papers published; they provide a concrete target for rebuttal. That's the scientific way; state your case and defend it, back and forth, back and forth.

It is fair game as an advocate to criticize poor reporting, though. Not because they don't support our hoped-for view, but because they have presented a carelessly researched report.

If we are really lucky, this will go on for a long, long time, years. Don't sit around waiting; continue your advocacy for validation, not for XMRV.

 

[Cort]

Finally a level-headed comment to today's news, aruschima; thank you. You are spot on; our job is not to try to judge an extremely complicated science that very bright people have spent their lives immersed in. Those who have no scientific background, do not feel bad at all. Our job continues to be to advocate for the validity of our disease, with or without XMRV. Even if this were the discovery that we have waited for, and probably many things will change before that ever happens years from now, then there is yet another fight to be fought: getting the physicians and the public to believe, after all these years of calling us lazy and crazy. It is hugely complicated science and even more difficult, it is hard-to-understand politics and human nature. OK, be excited when the news goes our way, but don't be distracted from your job, and don't be discouraged if the news doesn't go your way. I too am glad to see today's papers published; they provide a concrete target for rebuttal. That's the scientific way; state your case and defend it, back and forth, back and forth.

It is fair game as an advocate to criticize poor reporting, though. Not because they don't support our hoped-for view, but because they have presented a carelessly researched report.

If we are really lucky, this will go on for a long, long time, years. Don't sit around waiting; continue your advocacy for validation, not for XMRV.

Love to agree with you Marty

 

[Cloud]

Most everything from the UK over the last year concerning xmrv research has seemed more like defensiveness than a quest for truth. Why are they so quick and calculated with the smear campaigns and yet do nothing to research for a real cause? Yes, good science will examine every angle pro and con, and when the UK starts actually doing that and being fully honest and transparent....I might then begin to listen.

It's not in my best personal interest that xmrv would be the cause, yet I do hope it proves to be at least a major player when it comes to the good of our community as a whole. Still, I feel unbiased in my views on the negative studies and chatter from the UK.

 

[free at last]

Finally a level-headed comment to today's news, aruschima; thank you. You are spot on; our job is not to try to judge an extremely complicated science that very bright people have spent their lives immersed in. Those who have no scientific background, do not feel bad at all. Our job continues to be to advocate for the validity of our disease, with or without XMRV. Even if this were the discovery that we have waited for, and probably many things will change before that ever happens years from now, then there is yet another fight to be fought: getting the physicians and the public to believe, after all these years of calling us lazy and crazy. It is hugely complicated science and even more difficult, it is hard-to-understand politics and human nature. OK, be excited when the news goes our way, but don't be distracted from your job, and don't be discouraged if the news doesn't go your way. I too am glad to see today's papers published; they provide a concrete target for rebuttal. That's the scientific way; state your case and defend it, back and forth, back and forth.

It is fair game as an advocate to criticize poor reporting, though. Not because they don't support our hoped-for view, but because they have presented a carelessly researched report.

If we are really lucky, this will go on for a long, long time, years. Don't sit around waiting; continue your advocacy for validation, not for XMRV.

With the Hope of xmrv just inches away, i had a chance to go to my doctors with real pride for a change, pride i can prove im not nuts, like he thought i was, like they all do. A chance for regognition, that it wasnt my fault, and that damm it i did suffer badly. If xmrv falls then you had better not hold your breath for validation. because half the world will be laughing at us, including most likely my doctor.Thats the price we paid with the science study, finally trying to prove, and prove well. that yes it is a disease and we are not malingeres, depressives.
If xmrv falls the damage will take literally years ( if ever to undo ) and we did nothing wrong, we clung to the strongest piece of hope we have probably ever had. I agree that other research is important. But once this xmrv started, it was always going to be make or break time for us, there was nothing we could ever have done to have stopped that,

it really is out of our hands.And in many ways always has been.
Make or break time. And we didnt make it that way. the world is doing it for us, we are all pretty much bystanders watching it all just rolling along. We could never have done anything different. What will be, will always have been

If xmrv falls, then god help all of us. well see how the british doctors respond to us in the morning after its proven xmrv was contamination, and i say i have a different study here showing something new and exciting, that might validate me doctor, and the doctor says, you know for a minuete or two there, you really got me thinking this might be a real disease. But ahh well you cant win them all, heres your anti depressents, now hurry along i have some real sick patients to attend to.

 

[Cort]

Ian Lipkin Speaks

I got this in an email that somebody passed on - from him.

These papers emphasize the pitfalls of molecular assays and raise concerns. Nonetheless, it is premature to rule out XMRV or related viruses as factors in prostate cancer or CFS. Links have also been made based on serology and the presence of viral proteins as well as of viral sequences. Thus, we still need appropriately powered, rigorous blinded studies of well characterized patients and controls. One such study is underway under the auspices of the National Institutes Health.
Ian

W. Ian Lipkin, MD
John Snow Professor of Epidemiology and Director
Center for Infection and Immunity
Mailman School of Public Health

Professor of Pathology and Neurology
College of Physicians & Surgeons
Columbia University
722 West 168th Street, 17th Floor

 

[lancelot]

It's all british crap. don't believe anything the brits say!

 

[free at last]

Seems like the london plan is backfiring on them for a change Cort. Do a good job Mr lipkin. If we have to accept that our truth is not here yet, than so be it, But please just give us the damm truth, and the best science these talented scientists can do, thats all. the truth please

 

[shannah]

KDM Statement On Recent Publications Prof. Kenny De Meirleirs uttalelse om de 5 publiserte kontaminerings-studiene:

“The contamination by mouse material was excluded in our study, that of Lo and that of Lombardi et al. We are not using PCR as a basis of the test but human prostate cancer cells that do not express RNase L so the virus from patient’s blood can grow in it. We also sequence the virus and I can assure you it is not mouse material.
Governments and insurance companies are horrified by the idea that there is a new retrovirus out there that has infected 10 times more people than HIV up to date. My preliminary data show that the virus does not grow in culture anymore after Nexavir + GcMAF although the procedure was identical to the pretreatment culture.
In the next months more will come from our side. A study with healthy blood donors, ME patients who got ill immediately after blood transfusion and ME patients who gave blood after they got ill will be published in the first half of 2011.

What these 5 are doing to the patients is a crime against humanity.

Kenny De Meirleir”

————————————————–
http://merutt.wordpress.com/

 

[SOC]

This is disturbing, but not as scary as it first seems. Let us not forget that Retrovirology is by no means a comparable journal to Science or PNAS and serious scientists know that. We've also seen from Retrovirology's past XMRV articles that its reviewers of choice for XMRV have a definite bias and don't require the kind of rigorous science that more higly respected journal reviewer/editors expect.

Secondly, it appears that these papers point out potential pitfalls in detecting human MLVs which are already known. Yes, they've investigated specific situations, but the general idea is not new. This is not cutting edge science; that's why it's in Retrovirology not Science or PNAS.

Frankly, I'm just as glad these papers came out all at once in a single journal. Better than dribbling it out a little at a time and keeping the story alive. This way they can all be refuted/clarified at once and waste less of our valuable researchers' time.

These papers are probably not truly bad for us -- it's always good to know where the pitfalls are. What really upsets me is the BBC article that seems to extrapolate WAY beyond the data in the papers. What kind of journalism is that?

What is it with the UK and ME/CFS? This is getting far beyond ridiculous. Did we ever figure out what's the deal with all those "secret" ME documents? I'm not generally prone to conspiracy theories, but the determination to crush the idea that ME/CFS is a physical illness borders on the absurd.

 

[shannah]

Did we ever figure out what's the deal with all those "secret" ME documents? I'm not generally prone to conspiracy theories, but the determination to crush the idea that ME/CFS is a physical illness borders on the absurd.

There's a petition being circulated on FB

http://apps.facebook.com/petitions/...wnormalwview-wzoom0wzoom-wpunctuationkerning/


To make closed information about M.E and CFS freely available.

target: Worldwide
sponsored by: Dr John H Greensmith, ME Free For All.org
signature goal: 1,000
signatures: 1,060

We the undersigned request that all information relating to M.E. (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome), including correspondence with the medical profession (Ref: BN 141/1), held in the National Archives, Kew, UK, as a closed document and not available for public access, after 78 years, until 2072, is made freely available.

It is believed that such revelation may yield clues that might lead to effective treatments and hopefully a cure for this dreadfully debilitating illness, which affects millions of people worldwide.

This petition is in addition to a freedom of information request, made by its creator and an open letter to a national British newspaper co-signed by a majority of representatives of people with M.E.

It has not been possible to petition number 10.co.uk because the service has been suspended since 6 April 2010 and, pending review, is expected to be re-launched later in the year. Furthermore, since its jurisdiction may be limited to the UK, we encourage petitioners from all over the world, since M.E. knows no geographical boundaries, in order to realise the magnitude of concern that there is worldwide.

 

[free at last]

This is disturbing, but not as scary as it first seems. Let us not forget that Retrovirology is by no means a comparable journal to Science or PNAS and serious scientists know that. We've also seen from Retrovirology's past XMRV articles that its reviewers of choice for XMRV have a definite bias and don't require the kind of rigorous science that more higly respected journal reviewer/editors expect.

Secondly, it appears that these papers point out potential pitfalls in detecting human MLVs which are already known. Yes, they've investigated specific situations, but the general idea is not new. This is not cutting edge science; that's why it's in Retrovirology not Science or PNAS.

Frankly, I'm just as glad these papers came out all at once in a single journal. Better than dribbling it out a little at a time and keeping the story alive. This way they can all be refuted/clarified at once and waste less of our valuable researchers' time.

These papers are probably not truly bad for us -- it's always good to know where the pitfalls are. What really upsets me is the BBC article that seems to extrapolate WAY beyond the data in the papers. What kind of journalism is that?

What is it with the UK and ME/CFS? This is getting far beyond ridiculous. Did we ever figure out what's the deal with all those "secret" ME documents? I'm not generally prone to conspiracy theories, but the determination to crush the idea that ME/CFS is a physical illness borders on the absurd.

Been trying to tell you guys for ages, its nuts over here, the psycoanalysts need analyzing. sharp on white maybe, white on sharp. hell wessleys the daddy wessley on both of them. damm dont reckon there chances good luck boys

 

[SOC]

Thanks, Shannah!

 

[camas]

What is it with the UK and ME/CFS? This is getting far beyond ridiculous. Did we ever figure out what's the deal with all those "secret" ME documents? I'm not generally prone to conspiracy theories, but the determination to crush the idea that ME/CFS is a physical illness borders on the absurd.

Where's Julian Assange when we need him? (Only half joking)

 

[SOC]

There's a petition being circulated on FB

http://apps.facebook.com/petitions/...wnormalwview-wzoom0wzoom-wpunctuationkerning/

I'm not a Face Booker. Does anyone know of one elsewhere?

I'll pass this FB petition on, though.

 

[Cloud]

Wow, most UK media are stating that "xmrv is not the cause of CFS"....Yet here we have Lipkin saying it's too soon to tell. Will the real scientist please stand up!

Ah yes....standing ovation for KDM.

 

[Cloud]

I'm not a Face Booker. Does anyone know of one elsewhere?

I'll pass this FB petition on, though.

http://www.thepetitionsite.com/264/...wnormalwview-wzoom0wzoom-wpunctuationkerning/