Retrovirology Publishes Five Papers on XMRV and Contamination

[alex3619]

Hi all.
I just want to point out that the release of these three papers the week before Christmas has been cleverly calculated to give them maximim publicity impact as no work can be done to refute their ideas until after the holiday - this means a good three weeks of impact.

HI currer, this is about the general public, it doesn't mean we can't respond only that nobody is listening. We don't tend to have the normal lives, and I will be working on stuff related to this every day except half of Christmas day and New Years Eve when I will be watching a bunch of other people get drunk. Bye, Alex

 

[alex3619]

Snake oil, snake oil, get your fresh snake oil here!

Hi, I tried to post this 14 hours ago but my phone exchange crashed and I lost internet. So here is my reply to Hue:

Disease-associated XMRV sequences are consistent with laboratory contamination
Stphane Hu1*, Eleanor R. Gray1*, Astrid Gall2*, Aris Katzourakis3, Choon Ping Tan1,

CharlotteJ. Houldcroft2, Stuart McLaren2, Deenan Pillay1, Andrew Futreal2, Jeremy A. Garson1, Oliver G.Pybus3, Paul Kellam1,2 , Greg J. Towers1
1MRC Centre for Medical Molecular Virology, Division of Infection and Immunity, UniversityCollege London, 46 Cleveland St, London W1T 4JF, United Kingdom
2Wellcome Trust Sanger Institute, Hinxton, Cambridge, CB10 1SA, United Kingdom
3Department of Zoology, University of Oxford, South Parks Road, Oxford, OX1 3PS, United Kingdom

This paper is a much more serious attempt at showing contamination than we have so far seen. In a nutshell, XMRV is (according to them) derived from contaminated human cell lines, which have then reinfected other cell lines and vectors, becoming close to ubiquitous in labs.

They still do not explain why controls don't keep testing positive, but they do have plausible explanations for the source of the contamination. Basically, XMRV is a real virus but it is loose in labs all over the place. It could be in many lab cultures, not just prostate cancer. Because of this even a sample that tests negative for mouse DNA or mouse mitochondrial DNA could still be contaminated. No amount of testing for mouse contamination can rule this out.

Comments have already been made on this thread about issues with primers. We need to know more about the primers used (although it could be in the original papers of Lombardi or Lo/Alter, I need to go back and check) before much more can be said.

I do not know enough about statistical phylogenetic analysis to comment much on this part of the science. It would take a lot of research to get a handle on this: I know enough to know it is a very deep topic.

Of particular interest in this paper is the observation that hypermutation by APOBEC3G is much more prevalent in the cell line versus patients (81 times versus 5). The cell line version of the virus is much more evolved and damaged than prostate cancer XMRV isolates.

This of course does not allow for the probable variation in CFS patients with MLVs. This was not discussed in this paper. They confined their analysis to prostate derived XMRV, although they do note that virus isolated from prostate cancers appear to be XMRV and Moloney MLV recombinations.

They did not discuss the possibility that such ubiquitious XMRV contamination might be itself a source of infection, originally from the cell line 22Rv1, but since this was derived from still earlier cell lines it is hard to say when this all started. Since most mammals are potential hosts, this virus could be spreading in labs. They had better hope its not pathogenic! If this virus is such a loose cannon, and causes any disease, we could have a real problem!

A number of hospitals have been loci for ME outbreaks since 1934 - does anyone have an idea as to how many? I am sure of two, but there could be many more. I vaguely recall several more, I but am very unsure about this.

In a quick search I was unable to find a reference for 22Rv1 prior to 1999: the title and abstract directly imply that this cell line was developed just prior to 1999:

In Vitro Cell Dev Biol Anim. 1999 Jul-Aug;35(7):403-9.
A new human prostate carcinoma cell line, 22Rv1.
Sramkoski RM, Pretlow TG 2nd, Giaconia JM, Pretlow TP, Schwartz S, Sy MS, Marengo SR, Rhim JS, Zhang D, Jacobberger JW.
Cancer Research Center, Case Western Reserve University, Cleveland, Ohio 44106, USA.
PMID: 10462204

This abstract refers to a culture line: CWR22R which was used to develop the 22Rv1 cell line. Does anyone know when prostate cancer cell lines were first developed? The earliest reference I found with a quick search was:

Morphological and biochemical studies of virus (SV40) transformed prostatic tissue.
Fraley EE, Paulson DF.
J Urol. 1969 May;101(5):735-40. No abstract available.
PMID: 4305419

However, Pubmed is a limited resource when looking back, it may be that this is just the limit of digital indexing. Cell line cultures date back to the early 1900s - I think I recall reading they date back to prior to 1910.

This paper also raises the contamination issue in a bad way. If the XMRV virus is a common contaminant, it may well be that there are issues with lab contamination in many or most cell lines, including those used for vaccine manufacturing. It might also be that many patients have similar XMRV sequences because we keep being infected from a common source such as vaccines. Rather than closing the door on XMRV, this paper is a pandora's box. I still think they are wrong, but I wonder if I am just hoping they are wrong because the implications are very disturbing. Against this we have the problem that if cell lines were a common source, then their would be far greater diversity in patients; wait, isn't that the case? They are finding reduced diversity in prostate cancer not CFS.

So while it is possible that XMRV is a contaminant (but I still want the experimental controls issue explained), it is also possible that many of the problems raised in this paper are due to the virus spreading from labs: the common source may be the labs involved in virus and cancer experimentation, and vaccine manufacture. Medical personel are among the most common ME patients, as are airline personel, teachers and long distance cyclists (who compete internationally). All of these groups (with the possible exception of teachers) will have had lots of vaccinations.

So, if we consider this paper might be correct, we now we need to (if it hasn't already been done):

1. Test all stored XMRV positive samples for mouse contamination, but with the understanding that a negative does not mean they are not contaminated. A positive shows contamination, a negative for mouse DNA is always inconclusive.

2. Check common lab cell lines including those used in the vaccine industry for contamination. Just checking for mouse contamination is not enough - we need to search very diligently for XMRV.

3. Check vaccines themselves for XMRV contamination.

4. Check the specific cell lines used in culturing for XMRV to ensure they are not contaminated (I don't think they are, this should have been tested and controlled for, but there is no substitute for hard evidence). If large numbers of controls have been cultured and found to be negative, then this is very strong evidence that the contamination theory is wrong. I am about to go back and reread Lombardi et. al. 1999 and all the associated stuff, plus the WPI sources. This might take a while ...

(PS Some hours later: it still seems clear that WPI, Lo and Alter have all checked this multiple times.)

5. There is speculation that the kinds of viral mixes necessary for XMRV genesis begin back in 1932 or prior in California - there was a thread on this a few weeks back We need to find if any samples from that time exist anywhere, and if so have them tested. I would be very doubtful that there was any evidence, but I wonder if children or grandchildren of people who were in the 1934 epidemic could not be tested. This date was selected because the first highly probable cases of ME date back to 1932, and the first highly probable epidemic was 1934 in a hospital in California. Note there was a paper on phylogenetic analysis of XMRV that puts its origin in California at just prior to this time:

The mouse "xenotropic" gammaretroviruses and their XPR1 receptor
Retrovirology 2010, 7:101 doi:10.1186/1742-4690-7-101
Christine A Kozak (ckozak@niaid.nih.gov)

I am not a fan of consipiracy theories in any form, and vaccine contamination theories qualify for that I think because it ties in with many CFS conspiracy theories I have read. I would like all this to be proven wrong. In all probability it is wrong, the contamination issue is a non-issue, but we need evidence one way or another. Hard evidence trumps speculation, whether it be speculation from patients like me or from XMRV researchers. Proof should be undeniable. It if is contraversial it is not proof.

Bye
Alex

PPS I have deliberately ignored issues here about antibodies, staining, viral replication etc because that would make a long post longer...
PPPS It is also not clear if XMRV is an integrated virus or an infective virus. I took that they were talking about infective virus, not just integrated endogenous virus.

 

[usedtobeperkytina]

Sad to see

Sad to see the conclusions being drawn, in headlines and quotes in the articles, that go beyond the data of these studies.

Careers will be squashed by this saga and the Nobel is at stake. Not to mention the most important possession, one's reputation as a scientist.

For all of you who are worried, here are some things to think of.

As we say in the South, "Them's fighten words."

This is a challenge also for those who found it in prostate cancer patients. And, it is against some major institutions: NCI, Cleveland Clinic, FDA and NIH, no less. Going up some with big guns there. "I'll match your PCR and raise you something in your tubes."

The wonderful thing about all of this is that CFS is in the news. You know what they say, doesn't matter what you say about me, just get my name right. While we hate to see these reports of what is "premature", at least even these guys are admitting it could be caused by a virus. And, news media has not minimized the level of disability in the stories but has shown how debilitating it can be. Even if they bring up psychological theory, they have at least shown it can be severe.

Additionally, and this is the best of all folks, we have so many researchers that know more about CFS and are interested in research. And most are virologists. So, whereas CFS was something other researchers looked at and for which only a few understood, now it is hip, it is interesting, it is ripe for discovery. All of this news does not stop the research, but it just points out that there are questions that need to be answered.

Remember, the XMRV conference had so many interested they had to turn people away. Think of all those scientists who got an education on CFS. As has been reported, some FDA committee members couldn't get the illness letters right, but they know more than they did before. Even Collins, the head of the NIH, sat in for most of the speeches in that conference.

Patients were able to meet with NIH officials, some of whom were ignorant of this illness. But they got an education.

Also, Hanson's study is coming out sometime.

An NIH study was just published that showed the way these viruses have evolved into six different strains. How did she see such variation if they were all contamination?

Just to let you guys know, the MCWPA Team is not discouraged by this. The ad is still accurate and the chapter is not over. But, MCWPA and, as far as I know, no other patient organization, has claimed that XMRV is the cause.

As long as we are accurate in what we put forth based on what is known at that point, then we can use this as an opportunity to bring attention to our illness and call for change, including more research funding. We need to responsibly and accurately take advantage of the opportunity presented to us now.

Take courage folks. We are prime time now!

Tina

 

[free at last]

British bastards can't accept the truth~!

I feel the same and im british
Judy doesnt seem phased at all, this mght well backfire on them yet. I hope it does

 

[oceanblue]

For all of you who are worried, here are some things to think of. ...

... The wonderful thing about all of this is that CFS is in the news. And, news media has not minimized the level of disability in the stories but has shown how debilitating it can be. Even if they bring up psychological theory, they have at least shown it can be severe.

...Additionally, and this is the best of all folks, we have so many researchers that know more about CFS and are interested in research. Remember, the XMRV conference had so many interested they had to turn people away. Think of all those scientists who got an education on CFS.

...As long as we are accurate in what we put forth based on what is known at that point, then we can use this as an opportunity to bring attention to our illness and call for change, including more research funding. We need to responsibly and accurately take advantage of the opportunity presented to us now.

Take courage folks. We are prime time now!

Stirring stuff, thank you Tina.

 

[oceanblue]

Its good to have the statements from the WPI quickly and good to hear from Dr. Lipkin....

I thought this statement was interesting:
"We have never claimed that CFS was caused by XMRV, only that CFS patients possess antibodies to XMRV related proteins and harbor infectious XMRV, which integrates into human chromosomes"

Isn't that integration finding one of the biggies? A retrovirus can only integrate into human chromosomes if it infects a cell; ie is an infectious retrovirus - not a contaminant. . One of the researchers said he couldn't explain how XMRV integrated itself into prostate cells if it was a contaminant...Now Dr. Mikovits is stating XMRV is integrated into the human chromosomes of people with CFS....I wasn't clear if they had shown this or not.

I don't think they have shown this yet, at least not published it. It's the evidence that John Coffin wanted (but didn't get) from the Lo/Alter paper. It's supposed to be the clinching evidence - but, as you and alex3619 say, what if infective XMRV is a contaminant that could itself integrate?

 

[oceanblue]

Dr. Mikovits Responds
by Andrea Whittemore on Monday, December 20, 2010 at 8:38pm

We have never claimed that CFS was caused by XMRV, only that CFS patients possess antibodies to XMRV related proteins and harbor infectious XMRV, which integrates into human chromosomes and thus is a human infection of as yet unknown pathogenic potential

But didn't they initially somewhat boldy claim that CFS should actually be renamed XAND, XMRV-associated Neuroimmune Disease? A claim that disappeared from the WPI website after a while. The 'associated' means they didn't actually say XMRV causes CFS but that was the implication. Perhaps this interpretation will eventually turn out to be right, but I sometimes wish the WPI wasn't quite so gung-ho in it's approach. I prefer John Coffin's more measured coments on the XMRV story given that it is clearly an immensley complex area.

 

[free at last]

I know that is what many people want to hear but to state that these researchers including Dr. Coffin and the guy who wrote the editorial - who both have said these papers raise concerns but do not definitively state anything about the WPI study - are creating crimes against humanity...

Now he's indirectly suggesting that the researchers are the pawns of insurance companies.....

As someone who was the victim of a smear campaign by a patient support group he should know better.

Maybe Cort but you have to remember hes likely thinking of the goverment neglect, and psychiatrist connections to insurance companys really being immoral here in the uk, and lets not forget the neglect of Lyyn Gilderdale, and Sophia Mirza sectioned by the courts most likely from advice by a prominent ME psychiatrist. Sophia later died from such abuse, and the medical coroner stated the cause of death as ME, with her spinal fluid showing signs of disease, i know this group cant be held responsible directly, but some of the psychiatrists likely can, and the uk goverment allowing neglect and wrong diagnosis, in favour of a cheap way out of the problems ME/CFS puts on the health system here.

All in all, Im sorry its about time people stood up and said enough is enough, the whole system in the uk is neglectful and often biased,and ignorant.

With people killing themselves, or dieing in the hands of mental health professionals, i would say that verges on crimes against humanity. I dont disagree with much you say Cort, but if DR Meirleirs thoughts where on some of those responsible for these things i mention, ( and i think it was as he talked about goverment and insurance companys prior to that satement ) then Bravo for a man of hes scientific standing risking hes career, by saying what a lot of scientists ( probably including Judy ) secretly feel, but are not allowed to say, for fear of risking there standing in the scientific community.
Kennys only mistake is he should have been a little more specific, as he made it sound like he was blaming the researchers directly, which as i mentioned earlier wouldnt explain mentioning the goverment and insurance company connections to cfs psychiatrists, so clearly i think he was talking about all of it.

Thank you for making a stand Mr Meirlier. Enough is enough Cort, this crap cant keep going On for years on end. Sorry but its how i feel.

 

[Bob]

Looking at the actual situation with these papers; 3 of the 4 papers were actually very mild in their conclusions... The conclusions seem quite reasonable and just point out where researchers should look out for contamination when testing for XMRV...

It is only the conclusion of the Hue paper that actually tries to refute the existence of XMRV, but even their conclusion was mild, compared to the press reports, and it actually says that they cannot prove that XMRV doesn't exist.

So it seems to be the press who are distorting the implications of the papers and declaring that XMRV is just a contaminant and not the cause of ME. It's appalling, biased reporting. There are some extremely strongly worded quotes from some of scientists (?) in the press articles, but again, it is bad journalism to just report opinions, without looking at the research papers and reporting the facts and the findings in a balanced way.

So, I think what I'm saying is that the scientists just seem to be doing their work here, however frustrating we find it. We should scrutinise the quality and integrity of their work and whether the scientists have a predetermined bias, but that is the normal course of science. Many scientists have a predetermined bias, and that is often what motivates them, rightly or wrongly. These biases get challenged or destroyed as the truth is exposed. But these papers do not appear anywhere near as biased or as significant as the press is reporting, and definitely not as definitive or conclusive.

I do think that the news agencies are violating our right to fair, unbiased, balanced and full information.
The media seems to be more of a problem here than the scientists.

I'm still optimistic after reading what Mikovits and Lipkin had to say. Lipkin must already know about the pitfalls of contamination, and seems to be approaching the subject with an open mind, according to his email.

 

[Bob]

The basis for the Hue paper seems to be that the Taqman XMRV primers are not specific to XMRV.
As far as I can tell, they did not detect XMRV in mice, but only detected XMRV-like segments, using these Taqman primers.
The primers are not specific, so they can't say that they detected any XMRV in mice, even though they say the primers gave a positive result for XMRV in mouse samples.
Then they say that when these primers are used to test human samples, they might actually be detecting mouse DNA, rather than XMRV, because the primers are not specific for XMRV but detect mouse DNA aswell.

It has already been made clear that the Lombardi and Alter studies did not rely on Taqman primers, and that they were well aware of the contamination issues.
But it seems to me, anyway, that if you were to use these non-specific primers for human samples and they showed positive for MLV's/XMRV, but then you eliminated the possibility that you had detected mouse viruses or mouse DNA, as Alter did, then you would only be left with XMRV.
So as long as the human samples have been checked for mouse DNA, then the non-specific primer argument seems to be a non-starter.

Can I conclude this or have I missed some vital information from the paper?

 

[eric_s]

I think you have missed that another paper says that testing for mouse mitochondrial DNA might not be enough, that testing for IAP is better. I don't know if any of the positive papers have done that. But then that's just one paper. I trust people like Lo or Alter to know how they have to test for contamination.

Good to hear responses from Lipkin and Judy Mikovits, also Coffin. There seem to be enough objectively minded people out there, just not in that part of the UK research community that talks the loudest.

 

[eric_s]

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.

My only problem with this is that it seems to be very hard to convince the public and some physicians if there is nothing tangible that can explain the illness.

There have been advocacy efforts for years, not without any success, but we are not where we want to be, by a long way.
I agree that more can be done, though, and probably better. But a physical finding like a virus would change everything at once. Plus provide ways to find a cure. So i think this is the way to go. Work towards getting more research. Why don't we have a WPI in Europe? An institution that is dedicated to doing research into ME/CFS. We need one.
Of course there has to be advocacy too, i'm not saying this should not be done.

 

[currer]

I also want to say that I trust the WPI because they do clinical work on real patients and they see the effects of their work where it counts - in real people's lives. Looking in a test tube is not enough. Everyone admits that PCR is at the limits of its detection - the contamination argument could run back and forth endlessly and get no-where. We need studies that also look at the larger effect of this illness and at treatment interventions working on reasonable hypothesies which can be tested in real people. The contamination argument can be worked to go round and round for another year or two and stall any spending on ME.- and that is probably the appeal of it.
The studies the WPI is doing on immunological signatures will push the research forward. I shall be giving to the WPI this Christmas. Remember how little real research has been done on ME/CFS and how much progress could be made if the research funds were there.

 

[alex3619]

The wonderful thing about all of this is that CFS is in the news. You know what they say, doesn't matter what you say about me, just get my name right. While we hate to see these reports of what is "premature", at least even these guys are admitting it could be caused by a virus. And, news media has not minimized the level of disability in the stories but has shown how debilitating it can be. Even if they bring up psychological theory, they have at least shown it can be severe.

Additionally, and this is the best of all folks, we have so many researchers that know more about CFS and are interested in research. And most are virologists. So, whereas CFS was something other researchers looked at and for which only a few understood, now it is hip, it is interesting, it is ripe for discovery. All of this news does not stop the research, but it just points out that there are questions that need to be answered.

Take courage folks. We are prime time now!

Tina

Hi usedtobeperkytina, spot on the money! Good scientists will not over-interpret these studies. They already know that contamination is always a concern.

The good news, to my way of thinking, is that the more the media focuses attention on why XMRV is a false path, the more impact there is going to be when people (officials, scientists, patients, the general public) wake up and realize where the science is at.

Of course I am making the presumption that the contamination issues are wrong. Mind you, I have thought that for some time now as there is too much evidence that contamination is not an issue. Let me think, yes, I was fairly convinced on October 9, 2009. The Lombardi et. al. paper was just sooooooooo solid.

Bye
Alex

 

[pictureofhealth]

QUOTE (#149)

CORT said:

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 "

Is this a comment that could be forwarded to the Science Editors of the UK papers, do you know, please?

 

[RivkaRivka]

I just sent this to the Wash Post reporter who covered xmrv a few times before. Feel free to use it to contact other reporters.

To: steinr@washpost.com
From: xxxx
Subject: correcting "XMRV is dead" headlines
Cc:
Bcc:
X-Attachments:

Hi Rob,

As you likely saw, there were lots of headlines yesterday saying scientists have found XMRV is not related to CFS. Below are 4 quotes from key scientists and/or news articles (Wall St Journal) stating that XMRV's link to CFS is not dead.

Warmly,
Rivka
ph
email
_________

== FOUR QUOTES ==

1. The reporters of those "XMRV is dead" articles did not do their research like Amy Marcus of the Wall St. Journal did. Here is her story from Dec 20, 2010, where you'll read that the detractors of XMRV are fast backpedaling.
<http://blogs.wsj.com/health/2010/12/20/xmrv-how-to-screen-the-blood-supply/>http://blogs.wsj.com/health/2010/12/20/xmrv-how-to-screen-the-blood-supply/*

2. Here is a quote from the bigwig NIH viral-hunter, Ian Lipkin:

"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

3. Here is a quote from the authors of the original Science paper of Oct 2009
http://www.facebook.com/notes/andrea-whittemore/dr-mikovits-responds/495512512528

Whittemore Peterson Institute Statement

"The Lombardi et al. and Lo et al. studies were done using four different methods of detection. They were not simply PCR experiments, as were the studies by McClure et al. and others who have recently reported their difficulties with contamination. Experienced researchers such as Mikovits, Lombardi, Lo and their collaborators understand the limitations of PCR technology, especially the possibility of sample contamination. As a result, we and Lo et al. conducted rigorous studies to prevent and rule out any possibility that the results reported were from contamination. In addition to the use of PCR methodology, the Lombardi team used two other scientific techniques to determine whether, in fact, we had found new retroviruses in human blood samples. We identified a human antibody response to a gamma retroviral infection and we demonstrated that live gamma retrovirus isolated from human blood could infect human cells in culture. These scientific findings cannot be explained by contamination with mouse cells, mouse DNA or XMRV-related virus-contaminated human tumor cells. No mouse cell lines and none of the human cell lines reported today by Hue et al. to contain XMRV were ever cultured in the WPI lab where our PCR experiments were performed. Humans cannot make antibodies to viruses related to murine leukemia viruses unless they have been exposed to virus proteins. Therefore, recent publications regarding PCR contamination do not change the conclusions of the Lombardi et al. and Lo et al. studies that concluded that patients with ME/CFS are infected with human gammaretroviruses. We have never claimed that CFS was caused by XMRV, only that CFS patients possess antibodies to XMRV related proteins and harbor infectious XMRV, which integrates into human chromosomes and thus is a human infection of as yet unknown pathogenic potential "The coauthors stand by the conclusions of Lombardi et al. Nothing that has been published to date refutes our data. -- Judy A. Mikovits"

4. Here is a quote from Europe's most noted CFS doctor, Prof. Kenny De Meirleir

“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"

 

[Cloud]

Perfect template, thank you Rivka!

 

[Cort]

Maybe Cort but you have to remember hes likely thinking of the goverment neglect, and psychiatrist connections to insurance companys really being immoral here in the uk, and lets not forget the neglect of Lyyn Gilderdale, and Sophia Mirza sectioned by the courts most likely from advice by a prominent ME psychiatrist. Sophia later died from such abuse, and the medical coroner stated the cause of death as ME, with her spinal fluid showing signs of disease, i know this group cant be held responsible directly, but some of the psychiatrists likely can, and the uk goverment allowing neglect and wrong diagnosis, in favour of a cheap way out of the problems ME/CFS puts on the health system here.

All in all, Im sorry its about time people stood up and said enough is enough, the whole system in the uk is neglectful and often biased,and ignorant.

With people killing themselves, or dieing in the hands of mental health professionals, i would say that verges on crimes against humanity. I dont disagree with much you say Cort, but if DR Meirleirs thoughts where on some of those responsible for these things i mention, ( and i think it was as he talked about goverment and insurance companys prior to that satement ) then Bravo for a man of hes scientific standing risking hes career, by saying what a lot of scientists ( probably including Judy ) secretly feel, but are not allowed to say, for fear of risking there standing in the scientific community.

Kennys only mistake is he should have been a little more specific, as he made it sound like he was blaming the researchers directly, which as i mentioned earlier wouldnt explain mentioning the goverment and insurance company connections to cfs psychiatrists, so clearly i think he was talking about all of it.

Thank you for making a stand Mr Meirlier. Enough is enough Cort, this crap cant keep going On for years on end. Sorry but its how i feel.

I understand what you're saying and I really do agree with it whole heartedly; for me its these researchers that wrote the papers that are so upsetting - even if their outcomes are so upsetting - it's incredible negligence by the govts on both sides that is so upsetting to me. It's just unbelievable to me that the US govt can so ignore 1,000,000 sick people. That is the big crime for me! It's the bureacrats, the administrators and yes, the researchers that are deciding that we're just going to basically ignore all those people because we don't want to deal with these strange disorder..Some people are building up some really bad karma......

 

[Cort]

Looking at the actual situation with these papers; 3 of the 4 papers were actually very mild in their conclusions... The conclusions seem quite reasonable and just point out where researchers should look out for contamination when testing for XMRV...

It is only the conclusion of the Hue paper that actually tries to refute the existence of XMRV, but even their conclusion was mild, compared to the press reports, and it actually says that they cannot prove that XMRV doesn't exist.

So it seems to be the press who are distorting the implications of the papers and declaring that XMRV is just a contaminant and not the cause of ME. It's appalling, biased reporting. There are some extremely strongly worded quotes from some of scientists (?) in the press articles, but again, it is bad journalism to just report opinions, without looking at the research papers and reporting the facts and the findings in a balanced way.

So, I think what I'm saying is that the scientists just seem to be doing their work here, however frustrating we find it. We should scrutinise the quality and integrity of their work and whether the scientists have a predetermined bias, but that is the normal course of science. Many scientists have a predetermined bias, and that is often what motivates them, rightly or wrongly. These biases get challenged or destroyed as the truth is exposed. But these papers do not appear anywhere near as biased or as significant as the press is reporting, and definitely not as definitive or conclusive.

I do think that the news agencies are violating our right to fair, unbiased, balanced and full information.
The media seems to be more of a problem here than the scientists.

I'm still optimistic after reading what Mikovits and Lipkin had to say. Lipkin must already know about the pitfalls of contamination, and seems to be approaching the subject with an open mind, according to his email.

Agreed about the Press; the press is not necessarily interested in presenting the full story - their goal is provide a compelling story that will get people to read their paper and the compelling story this time is XMRV s not the cause of CFS.

The UK seems to exist in a different zone than the US. One of the most astonishing realizations I've had over the past year - which Mark really helped me with - is that the UK does not have a free press with regards to science. I still confess utter astonishment over that fact. It is a government controlled media through the Media Centre. Big brother has taken over. The Freedom of the Press is one of our essential liberties. I assume that the Press could take back its freedom at any time - all they have to do is start forming their own opinions on these subjectsand may very well be that because CFS is not a major story they just don't care - they're happy to get an 'informed opinion' and just go with it. Maybe it's a form of press laziness - but looking at it from the US - its just appalling. It does not fly with my idea of a democracy.

The Media is far from objective here in some cases. I still cringe when I think of how Obama and Hilary Clinton were portrayed during the election; the storyline was that he was the fresh new inspiring voiceand she was the
old traditional stuck in her ways politician. That line undergirded stories for months. It was wild to see how they applied different adjectives to them and it was quite disheartening - because it became pretty clear that what the press was above all after was a compelling story and in their pursuit of that if they screwed up Hilary's chances for the presidency - so what!

The same with XMRV and CFS - who cares whether the studies do not indicate that XMRV is necessarily a contaminant; what's the better headline "XMRV Does not Cause CFS" or "Contamination Issues Dog XMRV"? As soon as they found some expert to say XMRV does not cause CFS - they ran with that.....

In some ways we are at fault because the media is realized that's what sells.....

 

[Esther12]

Maybe it's a form of press laziness - but looking at it from the US - its just appalling. It does not fly with my idea of a democracy.

I think that this is a case of laziness rather than control. Not much is spent on science journalism, and there's more of an instinctive faith in those who present themselves as scienitfic authorities. It means that we don't have much trouble with creationism, but it also means that any of the views of these authorities are reported in a very unquestionaing manner. With the Science Media Centre, there's quite a small number of media savy scientists (or just idealogues in the case of chairman Fiona Fox) who are able to present their beliefs as being Science.

Given the powerful role that science plays within our society, I don't think it's a healthy situation. But also, the media are more interested in trivial and entertaining science stories than anything investigative or in depth. (I'm starting to ramble here...)