Chronic fatigue syndrome virus doubt

Behind the Headlines

Tuesday December 21 2010

The link to XMRV may have been based on contaminated samples

“A new study has cast further doubt on the idea that a virus called XMRV causes chronic fatigue syndrome,” BBC News has reported.

In 2009 the condition, also known as myalgic encephalomyelitis (ME), was linked to a virus similar to one found in mice after a study discovered it was present in blood samples from people with the condition.

This well-conducted laboratory research examined the debated link by assessing the purity and ancestry of viral samples isolated from human cells. Based on their findings, the researchers conclude it is very likely that the human cells in the previous study had been contaminated with DNA from mice cells or by cells that contained a virus very similar to XMRV. On this basis they call for more rigorous detection methods during testing.

The authors did not directly analyse the samples from the original study that suggested a causal link. As a result, they cannot prove that the samples were contaminated, but their conclusion that contamination is highly likely casts doubt on the theory that XMRV causes ME. The cause of the condition is still unknown, and this research does not completely rule out XMRV or exclude another as yet unidentified virus from having some role.

 

Where did the story come from?

The study was carried out by researchers from University College London, the Wellcome Trust Sanger Institute in Cambridge and the University of Oxford. The study was funded by the European Community’s Seventh Framework Programme, the UK National Institute for Health Research, the Wellcome Trust, the Medical Research Council and The Royal Society.

The study was published in the peer-reviewed medical journal Retrovirology.

The newspapers have reported the findings of this study accurately, placing emphasis on the researchers’ conclusion that ME is not likely to be caused by this virus.

 

What kind of research was this?

The cause of myalgic encephalomyelitis (ME), now more commonly termed chronic fatigue syndrome (CFS), is largely unknown, but one theory has suggested that a virus called XMRV (xenotropic murine leukaemia virus-related virus) may be involved.

This virus has been linked with other diseases, but not all studies on its potential role in ME have found an association. The 2009 study that first linked XMRV to ME involved examination of blood cells from ME patients, finding that most samples contained DNA from the virus.

The XMRV virus circulates among mice, although in the laboratory it has been found to infect cells from a variety of animal species. The researchers say that the link between the virus and human disease is controversial, and that studies in this area have not produced consistent results. The virus is also found in up to 6% of healthy humans. In this study the researchers undertook a laboratory study to demonstrate that viruses from mice can contaminate human samples.

 

What did the research involve?

Researchers examined the DNA from different types of mice to see whether they could detect the presence of the virus. All of them were positive. They also investigated how frequently several lines of human cells (samples of extracted human cells cultured for experimentation) were contaminated with the XMRV virus. They tested contamination among nine different human cell lines, including tumour cells. They then investigated the presence of the XMRV virus using complex methods of detection, and also set out to see whether the human cells included viruses that could be mistaken for XMRV.

The researchers then undertook an evolutionary analysis of how the viral DNA comes to be in certain human cells lines. It is reported that XMRV is regularly found in prostate cancer cells, so the researchers cloned these cells and purified the viral DNA from them. They then used complex statistical methods to examine the evolutionary relationships between the sequences they had isolated from these cells.

 

What were the basic results?

DNA in human cells was frequently contaminated with DNA from different viruses, some of which originated from XMRV but some of which could be mistaken for having an XMRV origin. When cloning pure XMRV from the prostate cancer cells for testing purposes the researchers found that the viral DNA thought to be from XMRV was actually a mix of DNA from two different viruses. They say that this strongly suggests that contamination is the source.

Further analysis showed that viral sequences reported to be coming from unlinked patients actually seemed to be derived from the same original cell line, also suggesting that contamination was a likely reason for detection of this virus in human samples. Finally, the researchers found that the type of XMRV that is derived from human samples is less diverse than that from mouse cells. This is unexpected for a virus thought to cause an infectious disease.

 

How did the researchers interpret the results?

The researchers have concluded that the XMRV found in patient samples is likely to be derived from contamination either by mouse DNA or by other cells infected with viruses that originate in mouse DNA. They conclude that XMRV is unlikely to be a human pathogen.

They acknowledge that without testing original samples it is difficult to establish whether human samples in previous studies have definitely been contaminated.

 

Conclusion

This well-described laboratory study has used complex methods to analyse DNA and to determine the evolutionary history of retroviruses found in the DNA of mouse and human samples. The researchers conclude that it is possible, and likely, that samples in previous studies which found that XMRV has a causal link with ME, were contaminated with material including DNA from mice cells or from other cells containing a closely related virus.

They note that while it is not possible to prove that previous samples have been contaminated they are confident of their conclusions. One of the lead researchers has been quoted as saying;: "Our conclusion is quite simple: XMRV is not the cause of chronic fatigue syndrome. Our evidence shows that the sequences from the virus genome in cell culture have contaminated human chronic fatigue syndrome samples”. They say that rigorous methods should be used when screening for the virus in future.

The causes of ME are unknown, and while this research provides evidence that XMRV may not be the cause, this does not completely rule out XMRV or exclude another as yet unidentified virus from having some role. Other possible contributing factors include genetic, environmental, lifestyle and psychosocial factors.

Article amended: January 6 2011

Links to the headlines

ME 'virus' was actually a lab mistake, study says. The Independent, December 21 2010

Scientists conclude mouse virus does not cause ME. The Guardian, December 21 2010

ME 'not caused by the XMRV virus'. BBC News, December 21 2010

Links to the science

Hue S, Gray ER, Gall A et al. Disease-associated XMRV sequences are consistent with laboratory contamination. Retrovirology, 2010, 7:111

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The 54 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Dionysus said on 13 January 2011

NHS Choices Team,

You have had ample opportunity to weigh the evidence put before you and yet your minimally revised version of this article is an utterly disgraceful misrepresentation of the known facts and a betrayal of patients.

In the light of the confirmed evidence, I really don't understand your prejudice against the idea that XMRV is real and could be associated with disease.

If this poor example of medical reporting is the best that you can do, then please don't bother in future, because you are clearly incompetent.

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KateME said on 13 January 2011

We need good science in the UK.

Kate.

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The Truth Will Out said on 12 January 2011

I would add that (in case your sensors have their red pens at the ready) the WPI statement is in public domain, and has been circulated widely by the WPI and others to publicly refute the misleading release from the Wellcome Trust Sanger Institute which has achieved infamy in our community as: 'the contamination papers':

http://www.wpinstitute.org/news/docs/WPIResponseToRetrovirology122010.pdf

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The Truth Will Out said on 12 January 2011

This re-write is even more inaccurate than the original. The statement of the Whittemore Peterson Institute itself makes clear: The Lombardi et al. and Lo et al. studies [used] four different methods of detection. They were not simply PCR experiments, as were the studies by McClure and others who recently reported 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 [PCR], 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. Recent publications regarding PCR contamination do not change the conclusions of the Lombardi and Lo 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.Nothing that has been published to date refutes our data." Judy A. Mikovits

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Caspar said on 10 January 2011

Thank you for your comments.

In response to reader requests this article has been re-examined by the Behind the Headlines team and some minor amendments have been made for clarity.

Caspar @ NHS Choices

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Jan Masleid Chicago IL said on 05 January 2011

Hello again.

I am going to attempt to submit a different link this time.
This is the formal RETRACTION of comments regarding the above 4 retroviral studies as it relates to ME/CFS by Columbia University virologist, Professor Racaniello.

This was Dr. Racaniello's 'letter to the editor' of the Chicago Tribune and, unfortunately, does not contain much of the scientific explanation as was included in his related blog article.

As I see no obvious material 'promoting personal gain,' such as a featured virology book co-authored by him(?) or possibly the hyperlinks to further reference included in the text ~ I am hopeful this entry will not be censored.

(I do appreciate being notified earlier by e-mail, however.)

Thankyou again,
J. Masleid R.N.
Chicago, IL

http://www.chicagotribune.com/news/opinion/letters/chi-101223racaniello_briefs,0,1990620.story

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JCR21 said on 04 January 2011

IanHinNZ
I've checked with our moderators and it appears the names were edited out of your original comment because the individual moderator believed they were doctors. The moderator then applied our moderation guidelines for comments on NHS services, which state that people leaving NHS feedback cannot name individuals. However, this guideline clearly does not apply to your comment and to remove the names was a mistake. Please accept my apologies. I'm pleased to see that your subsequent comment which includes your original words was published unchanged.
Regards
John, NHS Choices

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The Truth Will Out said on 31 December 2010

With regard to the counter, 73,000 one-star ratings, allowing 3 seconds for each button press to register, is 219,000 seconds, which is 3650 minutes, or more than sixty hours of button pressing. You really think someone doesn't have something better to do over their Christmas break than sit there making the counter go up?! lol

People are disturbed by this piece of rubbish published by an organisation which is desperately trying to make an illness disappear. People feel strongly about it. Get over it.

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The Truth Will Out said on 31 December 2010

cfsadvocate, why don't you be honest about your real identity? You wouldn't happen to be called 'Simon Wessely' would you?

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romyboots said on 31 December 2010

This article simply proves that the NHS Choices website is unreliable and that it cannot determine what is robust science and what is clearly not.

In time, it will also be ridiculed - along with many other 'serious' organisations like the Guardian newspaper and the Wellcome Trust - as hopelessly inept and backward as far as understanding M.E. is concerned.

History and hindsight will take care of many of these, and the people who led them, regarding them with the contempt that powerful but lazy (and therefore hugely damaging) organisations deserve. It's a shame so many will have suffered before then.

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xLissy001 said on 30 December 2010

I'm not a medical person , but I suffered from chronic fatigue syndrome .... chronic fatigue syndrome and M.E ARE NOT THE SAME , excuse the spelling as like I say I'm not a dr or a nurse but what I have been told all along is that chronic fatigue syndrome and M.E are different because it becomes M.E only when the epsom/eptine baar ? something like that virus is present . So actually no chronic fatigue syndrome isnt also known asmyalgic encephalomyelitis . I was 15 when I fell ill and at the age of 19 now am back on my feet after 4 years of what I can only describe as hell. There needs to be more research I felt neglected by the NHS half the Dr's I saw tried to pass me off as a lier and a hypercondriact. The teachers at shcool were just as bad. Without the backing of a team of Dr's who strongly believed in the condition it was hard to get backing to have a home school tutor , all along I was reffered to physciatrists , "perhaps talking it through with someone would help" I am honestly one of the most strong willed people ever (probably the only reason I left school with just as many gcses , and good grades , not a minuite behind everyone else in my year although I attended school for probably a total of a week over 2 years !) I was given nothing , no treatment , no advice , and my parents resorted to trawling the internet ....and holland and barretts to find anything that might give me a little bit of a boost , I had spiraleena , L- carnatine , I stopped eating beef , Please can someone just do some more research , I dread the day I have a relapse

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IanHinNZ said on 30 December 2010

Everyone is very keen, some desperate to see a viral cause for ME/CFS. I doubt XMRV is THE cause but it is probably one of the causes. The actual causes will be a complex set of factors. Ever since a book revealed immunological evidence for viral activation and fragmentation of RNase-L and more recently some evidence for CD8+ dysfunction on Tcells, Dendritic cells and Natural Killer cells we know that the prime cause is in the immune system, probably triggered by many factors which activate the immune system of which viruses, enteric bacteria, some toxins (eg valinomycin) and even stress have been implicated.

As a Psychologist I am frequently embarrassed by articles and weak science which try to causally associate ME/CFS with pychological factors. The answers lie in hard science and at least we have a better direction than before XMRV was associated with ME/CFS. The research on XMRV and other pathogens has only just begun and whats more we haven't even begun looking at the toxins which are liberated into our environment and their effects on our immune system. Also the effects of psycho-neurological stress on our immune system are just beginning to be understood.

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Varlik said on 29 December 2010

The longer you stand in the way of progress and truth the more weight that will build up until it inevitably falls upon you. This appears to be more slinging of rubbish science in an effort to burry real science and truth.

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Dionysus said on 29 December 2010

The WPI & others have just had their latest patent application published : http://www.wipo.int/pctdb/en/wo.jsp?IA=US2010039208

It demonstrates that far from being a laboratory contaminant, XMRV is potentially causative in many mystery illnesses and proves just how wrong the above article actually is.

The WPI patent techniques are a clear model for UK researchers to replicate - there is no excuse for them not to do so.

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svetlanarees said on 28 December 2010

Another rubish information frrom NHS.There is a virus,there is a treatment in USA,in Europe,in Japan,in Canada.Poor British patients,no information,no funding,no treatments for them.Shame on NHS!!!!

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10199 said on 28 December 2010

so where does this leave people and a cure for M.E?

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Jan Masleid Chicago IL said on 28 December 2010

Hi there,
(and many thanks to the NHS mods for helping me out with the unintended multiple postings I made yesterday-lol)

I am not an ME/CFS patient-just a commonplace nurse from the States.
~And, yes, your counter button is fairly ineffective, isn't it?

I wanted to post the link to the virologist blog of Dr. Racaniello. It is the formal Retraction* of his hasty comment(s) concerning the 4 studies that just came out prior to Christmas, 2010.

This virologist re-examined the above reports and changed his mind about the situation as it may relate to ME/CFS.

I would hope that the scientific authors of those studies would do the same if/when the science so dictates.

I would also very much hope that this area of science continues to be -this high- on the UK's list of priorities.

Regards from America

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cfsadvocate said on 28 December 2010

I made my statement vague as you can attribute some of the statements to a lot of institutions. It was an example of how "conspiracy" theories can be applied to a lot of things if you are looking for them when a simpler explanation may be more accurate.

But I did have a very specific private institution in mind. :>)

I will reiterate.

Let science sort this out.

There are many outrageous statements in the comments here where patients think they are advocating but are basically shooting themselves in the foot. Not just this article but the methods used by these "extremist" who are letting their rage direct advocacy and not the facts.

I take offense at this. I'm one of you, too.

I think I have made my point clear and further comment is not needed.

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User511595 said on 27 December 2010

No institution has helped people with unscientific treatments, or made radical generalisations about the meaning of their research. No idea what you are talking about. Many groups have refined testing methodologies, including the NCI, the FDA, WPI, Cleveland clinic, and the NIH.

Money is not the only reason for why certain groups are trying to say XMRV does not cause ME, when no research study supports such a conclusion.

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cfsadvocate said on 27 December 2010

@User511595

If the papers had a different outcome some of these fringe commenters would be jumping up and down, shouting that this science is good. Reactions are not based on the science but what the outcome is.

If I were a conspiracy theorist, I would think that an institution that finds something, jumps the gun creating tests, helps people with unscientific treatments is less than professional. When that same institution makes radical generalizations about the meaning of their research and continue to argue that their science is "right" because that is what the "powers that be" who have the money and a vested interest, you are not talking about a "scientific" institution. If you follow the money with that scenario what conclusions can be drawn?

This may be the institution that created false hopes and unrealistic expectations. about CFS. They may be the ones who have let us down.

I am not saying the above is true but you see how facts can be twisted to fit our beliefs. This is called cognitive dissonance.

My suggestion to many of the commentators here is to get out a science book and read what the scientific process is about.. Science often finds different results and is part of the process.

Let science look at this and don't jump the gun thinking any study that does not agree with our perceptions is not valid then taking this perception farther so that anyone who reports the studies is doing a disservice. Use what little energy we have in a different direction.

Don't shoot the messenger.

That's not how true advocacy helps our cause.

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User511595 said on 27 December 2010

Blood XMRV Scientific Working Group statement from today:

“The Blood XMRV Scientific Research Working Group has discussed the findings from the four studies published in Retrovirology on December 20, 2010. These studies confirmed the importance of carefully checking XMRV/MLV related-positive results for any evidence of contamination with mouse genetic materials. The Working Group is proceeding with phase III which will evaluate the clinical sensitivity and specificity of multiple laboratory assays that test for the RNA and/or DNA of XMRV/MLVs or antibodies to these viruses. All laboratories have and will continue to apply best practices and check to the best of their ability that no contamination with mouse DNA is present before reporting any positive results. These reports also substantiate the importance of employing tests that not only detect viral DNA and/or RNA but can also detect the virus itself (culture) and/or an immunological reaction to the virus. These tests are reflected in the Working Group planned phase III study."

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User511595 said on 27 December 2010

cfsadvocate

Science is science and not validated on press releases. This is not about those studies, it's about the propaganda. Those papers were full of if's and maybe's, not certainties. They should allow scientists to work this out.

And not everyone commenting here is a patient, or a lay person, so when you say, "Don't be the stereotype the psychiatrist want us to be. You are walking right into their perceptions." It's not relevant. If a psychiatrist wants to see a psychiatric problem, they will do, it's a catch 22 problem.

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User511595 said on 27 December 2010

cfsadvocate

Science is science and not validated on press releases. This is not about those studies, it's about the propaganda. Those papers were full of if's and maybe's, not certainties. They should allow scientists to work this out.

And not everyone commenting here is a patient, or a lay person, so when you say, "Don't be the stereotype the psychiatrist want us to be. You are walking right into their perceptions." It's not relevant. If a psychiatrist wants to see a psychiatric problem, they will do, it's a catch 22 problem.

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Helle said on 27 December 2010

I naturally assumed that the NIH would have a proper rating system on their home page, only counting the vote from an IP address once. If it counts more than once, then it is not suitable.

As for "science is science" - science is definately also politics and money interests. Thinking otherwise would be naïve.

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Jan Masleid Chicago IL said on 27 December 2010

LOL
That's what happens when you don't activate your account first and then hit the send button more than once.
(sorry!)

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cfsadvocate said on 27 December 2010

I am embarrassed to call these people part of the CFS community. They are a small percentage who can not wrap their heads around the fact that there are no conspiracy plots, that science is science and not validated on our personal preference.

Give this a chance to be worked out by other scientist. Hitting the rating button as many times as possible is immature and not productive!!

This is not the way to advocate. Don't be the stereotype the psychiatrist want us to be. You are walking right into their perceptions.

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JustinReilly said on 26 December 2010

Dear NHS:

Reprinting press releases by insurance lobbyists ("Wellcome Trust") posing as virologists is not in service of science. Prof. de Merlier, MD, PhD, one of the world's foremost ME researchers has written that these articles in Retrovirology are a "crime against humanity." Does this not give you pause?

-Justin Reilly, esq.

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The Truth Will Out said on 26 December 2010

Just in case the counter on this article changes or is removed, I've taken a screen print. As at 26/12/10 at 1.20am, 71047 ratings out of a total of 71336 recorded rated this article with one star - the lowest possible score.


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miley said on 24 December 2010

I find this article totally biased.You never reported the study done by the very famous scientist Harvey Alter/Lo.He found 87% of the ME/CFS samples tested possitive for MLV virsus.This only proves that these studies samples were contaminated.How planned was it to publish the studies on the same day when Huber's study was completed in May.Also how quick the Independant & the Guardian were to publish these negative studies put again no on is publishing the positive studies in Spain,Belgium & Norway.Also The Wellcome Trust are involved in the PACE waste of £5million study.Conflict of Interest i feel.Viruses & becterias etc are involved in this illness due to Immune system dysfunction.Also the WPI found antibodies which can't grow in contamination.Also they have used different ways of finding the virus.ME patients suffer horrific symptoms,in agony and bedbound 23 hours a day.If these studies are so convinced of there finding then do a useful study to find the pathogens involved in this neuro immune illness so people can get their lives back but nothing has been done in this country for this illness in 25 years.So start treating the Gut infections,the immune system autonomics POTS,respiratory,kidneys,adrenal glands,herpes viruses Training your doctors nurses consultants etc some patients in America are being treated with herpes antivirals & are improving & a few are taking Antiretrovirals & from being bedbound in 6mths doing part time college.

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Merry1 said on 24 December 2010

You are over-reaching in your interpretation of the significance of the contamination papers. What do you know of the methods of the eminent scientists involved in XMRV research, the great care they have gone to to prevent contamination? With your interpretation you call into question their intellligence, knowledge, and professionalism.

If this weren't bad enough, your interpretation of these particular papers insults British ME/CFS patients, who have been waiting, some of them, decades for real research to be done in Britain. Where has been your sympathy, compassion, or williness to believe what the patients were telling you? What British patients have received from their goverment health services is abuse.

Your close-mindedness continues, the abuse continues.

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2little2late said on 24 December 2010

"The newspapers have all reported this story well, emphasising the strength of the researchers’ conclusion that ME is not caused by this virus."

No doubt because they were spoon fed incorrect conclusions to the studies by the Science Media Committee UK which takes advice from individuals who have vested interests in ensuring that current xmrv research is called into doubt.

http://www.sciencemediacentre.org/pages/about/
http://en.wikipedia.org/wiki/Science_Media_Centre

Until the NHS re-evaluates its commitment to providing excellence, unlike NICE, nothing will change and people will not be well enough to return to work and be valued members of society.

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SickAdam said on 24 December 2010

Will the powers that be in the NHS take a reality check and try reporting this issue in balanced manner?

Will they stop burying their head in the sand and accept that leading researchers are all on record as saying that their is absolutley no suggestion of contamination being an issue with regards the research of the WPI, the FDA, the NIH and the NCI, and stop publishing nonsense?

Will they realise that the new human pathogen XMRV will not just go away - neither will the efforts of the WPI cease as even without public funding patients all over the world will continue to support them in their research?

For the love of humanity understand ME/CFS is a viral condition. My ordinary life became an existence in 1996. I want some life back before I die. I want answers. The genie first popped his head out the bottle back in 2006 when it was discovered XMRV in prostate cancer cells. Now XMRV is strongly associated with ME/CFS. All that we want is the necessary drug trials to prove or disprove that XMRV causes disease. Not much to ask is it?

I too am ashamed of my country.

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Canuk said on 24 December 2010

I wanted to find out what the NHS position was on this complicated and contentious issue but it seems you take your position from the BBC. As a Canadian, I'm confused by your system. Is health care practice informed by media coverage in the UK? As credible conflicting studies are reported on do you simply switch positions - it is; it isn't; it is; it isn't?

In this exciting situation, full of scientific thrust and parry, one wonders if the NHS is aware that this is how medical science progresses. That's very sobering!

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JBME said on 23 December 2010

cont. from previous statement by WPI where the research in the original Science Journal paper was based:

"The coauthors stand by the conclusions of Lombardi et al. Nothing that has been published to date refutes our data." Judy A. Mikovits

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pinklil said on 23 December 2010

The one star 'unhelpful' rating is in itself unhelpful. A 'completely biased and fundamentally wrong' rating might be more applicable.

It would be good to have the link to Racaniellos blog posted here too. I have tried to do that but it has clearly been moderated out. in the same way other posts have been moderated by removing the names of relevant players within the given text.

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JBME said on 23 December 2010

Statement by Whittemore Peterson Institute:

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.

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JBME said on 23 December 2010

National Health Service? National Disgrace more like if this article is anything to go by. I was proud to be British once upon a time. Now I am ashamed. This attempt to discredit excellent research by high calibre researchers is so transparent as to be risible.

Funny how the UK media were so quick to report on this and did it so well, according to whoever is responsible for this piece here, and yet FAILED to report on the findings of the world renowned discoverer of Hepatitis C, Dr. Harvey Alter and his fellow researchers of the US National Instiutes of Health, Federal Drugs Agency and Harvard, which confirmed the findings of the research published in Science a year ago by the Whittemore Peterson Insitute, National Cancer Institute and Cleveland Clinic. Do you honestly expect us to believe that these teams of high-calibre scientists did not allow for the possibility of contamination in their research? Bearing in mind their research was published in respected journals; Science, after MONTHS of thorough peer-review, and PNAS, after the paper being withheld by the US gov to ensure its accuracy even after it had already been thoroughly peer-reviewed? Compared to these papers published on the same day in a pay-to-publish journal?

It is nonsense to suggest that because these researchers contaminated their own samples in studies designed to prove contamination is possible, that the serious researchers at the WPI and NIH in USA were also working with contaminated samples. The contamination accusation has already been soundly refuted.

This is not just bad science, this is very bad science. I suggest you remove this scandalously propagandist and mis-informative piece from this website before you are shown to be either fools or liars. As Dr. Alter said recently, "The truth will out over the next year".

In the meantime, as a tax-payer I demand that you do NOT mislead the British public in this way. This is a disgrace.

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User511595 said on 23 December 2010

The NHS should be ashamed of themselves for allowing this propaganda to infect their website. This deliberate attempt to halt further research into a public heath crisis that is starting to look like it will dwarf HIV, has not worked. Others are now withdrawing their incorrect faulty statements regarding what this study shows or its inflated importance.

When is the NHS going to correct this article, and removed statements about the press reporting the story well? or does the Wellcome Trust run the NHS?

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pinklil said on 22 December 2010

Professor Racaniello has made this statement which may actually point the finger more at the ineptitude of the negative studies than it does to cast doubt on the postive Mikovits / Lombardi and Lo/Alter papers. Here;

http://www.virology.ws/2010/12/22/xmrv-and-cfs-its-not-the-end/

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Creighton said on 22 December 2010

Professor Racaniello, after a more careful analysis of the 'contamination' papers published in Retrovirology this week has retracted his statement on his Virology blog upon which some of the media based their claim that the association between ME and XMRV was dead.

The link between the new retrovirus and ME is back on track. Will NHS Choices please take a new look at the available evidence and write a more accurate report, please ?

The researchers now urgently need further funding to continue this vital research into the possible association beteen XMRV, cancer and neuro immune disease.

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User511595 said on 22 December 2010

Now that you have altered the title of the article to a slightly less inaccurate one. Isn't it about time you remove the line "The newspapers have all reported this story well, emphasising the strength of the researchers’ conclusion that ME is not caused by this virus." That is not any kind of good journalism. The 4 studies do not, and could not, ever have such an influence over this research. The NHS is choosing to 'pick a side' with this article, instead of funding further research to discover what is happening. It's an obvious attempt at propaganda in order to keep the cost down.

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JBME said on 22 December 2010

National Health Service? National Disgrace more like if this article is anything to go by. I was proud to be British once upon a time. Now I am ashamed. This attempt to discredit excellent research by high calibre researchers is so transparent as to be risible.

Funny how the UK media were so quick to report on this and did it so well, according to whoever is responsible for this piece here, and yet FAILED to report on the findings of the world renowned discoverer of Hepatitis C, Dr. Harvey Alter and his fellow researchers of the US National Instiutes of Health, Federal Drugs Agency and Harvard, which confirmed the findings of the research published in Science a year ago by the Whittemore Peterson Insitute, National Cancer Institute and Cleveland Clinic. Do you honestly expect us to believe that these teams of high-calibre scientists did not allow for the possibility of contamination in their research? Bearing in mind their research was published in respected journals; Science, after MONTHS of thorough peer-review, and PNAS, after the paper being withheld by the US gov to ensure its accuracy even after it had already been thoroughly peer-reviewed? Compared to these papaers published on the same day in a pay-to-publish journal?

It is nonsense to suggest that because these researchers contaminated their own samples in studies designed to prove contamination is possible, that the serious researchers at the WPI and NIH in USA were also working with contaminated samples. The contamination accusation has already been soundly refuted.

This is not just bad science, this is very bad science. I suggest you remove this scandalously propagandist and mis-informative piece from this website before you are shown to be either fools or liars. As Dr. Alter said recently, "The truth will out over the next year".

In the meantime, as a tax-payer I demand that you do NOT mislead the British public in this way. This is a disgrace.

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wingfingers said on 22 December 2010

Anyone who has read the obligatory tome "Osler's Web" will know the facts. A Doctor, around 1985, took some of their ME patients' MR scans to an MRI expert, who showed them a set of identical scans - from AIDS patients. (see the videos on YouTube). Maybe they hadn't sorted out the retroviral origin of AIDS at that time, but the penny will have dropped later. So we then knew a retrovirus was involved.

Then in 1991 the researcher actually found a retrovirus in the ME patients, even showed electron-micrographs of the virus inside mitochondria where they disrupt the mitochondrial function of producing energy in the cell - hence the weakness or fatigue felt by patients. The doctor couldn't continue with the research as the funding was promptly withdrawn. Then they caught RSD, apparently a related neuro-endocrine-immune disease.

With all the government institutions turning their back on the biomedical cause of M.E., it was left to the "private sector" to fill the deficit. A family, with their daughter an M.E. patient, engaged retrovirology experts and established a private research centre, the Whittemore-Peterson Institute (WPI). Judy already suspected a retrovirus was involved and set out to prove it to the high standards of Science magazine.

The rest is history. Several ME patients have started on ART's (anti-retroviral therapies) and are blogging about their experiences - most are improving but it takes time. The ART drugs are based on those developed for treating AIDS patients - successfully. However XMRV is not the same as HIV and it may be possible to develop special drugs for XMRV which will be more effective - if the drugs companies remove their collective skulls from their colons and get on with the job. With perhaps seventeen million people worldwide affected, this could be very profitable.

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wingfingers said on 22 December 2010

Anyone who has read the obligatory tome "Osler's Web" will know the facts. A Doctor, around 1985, took some of the ME patients' MR scans to an MRI expert, who showed them a set of identical scans - from AIDS patients. (see the videos on YouTube). Maybe they hadn't sorted out the retroviral origin of AIDS at that time, but the penny will have dropped later. So we then knew a retrovirus was involved.

Then in 1991 the researcher actually found a retrovirus in the ME patients, even showed electron-micrographs of the virus inside mitochondria where they disrupt the mitochondrial function of producing energy in the cell - hence the weakness or fatigue felt by patients. The doctor couldn't continue with the research as the funding was promptly withdrawn. Then they caught RSD, apparently a related neuro-endocrine-immune disease.

With all the government institutions turning their back on the biomedical cause of M.E., it was left to the "private sector" to fill the deficit. A family, with their daughter an M.E. patient, engaged retrovirology experts and established a private research centre, the Whittemore-Peterson Institute (WPI). The doctor already suspected a retrovirus was involved and set out to prove it to the high standards of Science magazine.

The rest is history. Several ME patients have started on ART's (anti-retroviral therapies) and are blogging about their experiences - most are improving but it takes time. The ART drugs are based on those developed for treating AIDS patients - successfully. However XMRV is not the same as HIV and it may be possible to develop special drugs for XMRV which will be more effective - if the drugs companies remove their collective skulls from their colons and get on with the job. With perhaps seventeen million people worldwide affected, this could be very profitable.

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MrWessbag said on 22 December 2010

Amost 500 people have rated this article as unhelpful....probably because this is the lowest possible rating. It is far worse than unhelpful.

Is this not a case for removing this content from the site?

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mclueless said on 22 December 2010

and please do not remove my post just because the opinion does not concur with yours, The contest of my above post is very relevant

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mclueless said on 22 December 2010

taken from prof Rancanielooo's own blog

Dear Prof, I am a follower of your podcasts and blogging, I noted
that in the Chicago Tribune you are quoted as saying "These four papers are
probably the beginning of the end of XMRV and CFS," although this does seem at
odds with the comments in this comment section and the tone of your blog, would
you be able to clarify your statement? were you mis quoted in the Chicago
Tribune?


nswer- My statement to the Tribune yesterday
was based on my initial reading of the Retrovirology papers. However
upon further consideration it is clear that the results of all four
papers do not challenge the existence of XMRV in patients; rather they
point out potential pitfalls in doing research on this virus.

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Creighton said on 22 December 2010

The above article on XMRV is not only a prime example of unbalanced, and misleading reporting, but it is insulting to the many millions of patients world-wide who have the seriously debilitating neuro-immune disease Myalgic Encephalomyelitis. The four papers that appeared in Retrovirology this week did not bury the association between XMRV and M.E.. It is the inaccurate and either perfidious or careless reporting by certain channels of the media that are apparently endeavouring to delay the research into a potentially pathogenic retrovirus putatively responsible for cancer and neuro-immune diseases on a global scale. Already strongly associated with the majority of cases of neuro immune ME, it has also been found to be present and potentially implicated in 25% of breast and prostate cancers. It is surely irresponsible for any organisation to obfuscate the truth of this important research.

The NCI, the Clevedon Clinic and the WPI results did not rely merely on PCR to detect active and infectious XMRV in 98% of patients with M.E., but a whole array of testing methods. They were able to display immune responses to the retrovirus and demonstrated the budding of this infectious virus after they transferred it to a prostate cell line. Since when does a lab contaminant generate infectious virus that can be transmitted from infected blood, grown, and photographed?

A researcher for the National Institute said at the Blood Working group last week,

THE CURRENT EVIDENCE FOR DISEASE ASSOCIATION IS VERY STRONG THAT XMRV OR MLV IS STRONGLY ASSOCIATED WITH CFS. IN THOSE LABS WHO DO FIND THE AGENT (XMRV/MLV), IT’S VERY REPRODUCIBLE. YEAR AFTER YEAR………………………

A Doctor will be presenting at a New York Academy of Sciences symposium entitled, “Pathogens in the Blood Supply” with Science co-author in the Spring of 2011. There is much more positive information yet to be presented in the coming year. Your dismissal of this retrovirus is premature.

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MrWessbag said on 22 December 2010

NHS Choices.......

Give the public the opportunity to choose how they interpret this (mis) information, instead of heavily marketing a particular viewpoint which is based on spurious science and (il)logic.

It is always dangerous to make definitive statements based upon incomplete information. Listen to the experts around the globe, and see how they are interpreting this coordinated effort to rubbish other studies.

Oh, and by the way, my congratulations to the spin doctor (sic) who created the title of this article. Public - carefully choose how you interpret that little gem of a phrase too.

Finally, i am ashamed that this is the health service of the country in which I live and in which I have paid taxes all my working life (in spite of having ME for 20 of those years), and for which my ancestors fought for and were killed in the process. Their spirit has not died, and never will.

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User511595 said on 22 December 2010

"The newspapers have all reported this story well, emphasising the strength of the researchers’ conclusion that ME is not caused by a virus. "

That is an outrageous comment from the NHS, and should convince anyone who was in doubt or new to the subject, that this article and those in the papers are a deliberate attempt to silence research into this infectious retrovirus. All because this is going to cost Governments billions to fix, as it is also associated with prostate cancer. They tried the same thing when HIV was discovered.

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User511595 said on 22 December 2010

"The newspapers have all reported this story well, emphasising the strength of the researchers’ conclusion that ME is not caused by a virus. "

That is an outrageous comment from the NHS, and should convince anyone who was in doubt or new to the subject, that this article and those in the papers are a deliberate attempt to silence research into this infectious retrovirus. All because this is going to cost Governments billions to fix, as it is also associated with prostate cancer. They tried the same thing when HIV was discovered.

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User511595 said on 22 December 2010

The study that this article refers to does NOT prove that this retrovirus is not associated with ME.

Here is a quote from a guy who is considered the grandfather of retrovirology:

'"The argument for lab contamination as a source of XMRV is subtle and indirect, and not, in my opinion, conclusive," said John Coffin, PhD, of Tufts University in Boston.' (Med page, 'Contamination May Have Marred XMRV Studies', 21 Dec 2010)

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User511595 said on 22 December 2010

I see the NHS is removing all comments they don't want the public to see.

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notgonnatakeit said on 22 December 2010

The studies in Retrovirology are specifically about the possibility of using mouse contaminated reagents and PCR and obtaining false results. The US studies have used multiple methods for their findings, and have in fact recently advised *against* using PCR. The only conclusion that you can draw from these Retrovirology studies is that researchers need to make certain that their samples are not contaminated, so that they do not get false positives. It is disingenuous to report that XMRV is not correlated with ME/CFS based on the Retrovirology studies, particularly when the NHS partially funded one of them. Your motives are questionable. XMRV does not need a passport to travel internationally, and has already been found in British ME/CFS patients using methods other than PCR. Antibodies cannot grow in response to lab contamination. Discouraging XMRV research only prolongs the inevitable truth while those already infected suffer needlessly and unwitting people continue to contract new infections.

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Analysis by Bazian

Edited by NHS Choices