Imperial College XMRV Study - Media Response

Cort

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CFIDS Association Asserts Imperial College Not a Valid Replication Attempt
http://www.facebook.com/notes/the-cfids-association-of-america/xmrv-negative-results-emphasize-need-for-robust-replication-study/270023985538

XMRV Negative Results Emphasize Need for Robust Replication StudyShare
Today at 3:51pm
Suzanne D. Vernon, PhD
Scientific Director

A study testing for evidence of XMRV infection in CFS patients in the United Kingdom has reported negative results. This is the first publication following the article in the top-ranked journal Science from researchers at the Whittemore Peterson Institute, the National Cancer Institute and Cleveland Clinic that garnered worldwide attention from the media and scientific community. The new report, published Jan. 6, 2010, in the open access online journal PLoS ONE, failed to detect XMRV in CFS, but should not be considered a valid attempt to replicate the findings described by Lombardi et al., in the Oct. 8, 2009 Science article.


The PLoS ONE paper by Otto Erlwein, Steve Kaye, Myra O. McClure, Jonathan Weber, Gillian Wills, David Collier, Simon Wessely and Anthony Cleare is titled, Failure to detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. The investigators tested peripheral blood DNA from 186 routine clinic attendees who met 1994 (Fukuda) CFS case definition criteria and were well-characterized from participation in prior neuroendocrine and cognitive behavioral therapy studies. These 186 CFS patients were reported to be unwell for a median of four years with high levels of fatigue and disability.

This team of researchers used a special type of DNA xeroxing called nested polymerase chain reaction (PCR) reaction to amplify specific segments of the XMRV proviral DNA from the genomic DNA obtained from these 186 CFS subjects. In essence, they were looking to see if XMRV genetic material had integrated into human genetic material, which is a key characteristic of retroviral infection. The experiment included positive, negative and contamination controls, but did not test any samples taken from healthy subjects. The samples were coded so that the origin of the DNA was not known to the person conducting the PCR assays. XMRV was not detected in any of the 186 samples.

Can this study be considered comparable to the results published by Lombardi et al., in Science? In short, no. Both studies included CFS patients defined by the 1994 case definition criteria, but this is where the comparability ends. Here are some of the ways the PLoS ONE and Science methods differ:
The blood was collected from CFS patients in different types of blood collection tubes.

The genomic DNA was extracted and purified using different techniques.
The amount of genomic DNA included in the amplification assay was different.
Different primer sequences were used that amplified different regions of the XMRV proviral DNA.
The conditions of the PCR amplification assay were different from the numbers of cycles, to the type of polymerase used.

Should these differences affect an investigators ability to detect XMRV? To a microbiologist with experience handling samples and studying various infectious agents (as I am), these variances in procedure could make the difference between detecting XMRV or not.

It very well could be true that XMRV is not present in the U.K. as Erlwein, et al. suggest in their discussion, but it is also possible that the technique used in the PLoS ONE paper was suboptimal due to the different methods employed, when compared to the original experiments conducted by Lombardi, et al.

The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur.

Perhaps the most important statement in the PLoS ONE paper is the acknowledgement by this group of investigators that CFS is an incapacitating organic disease affecting millions of people worldwide. Once XMRV detection methods are optimized and made widely available, we encourage this group of researchers to take another look at XMRV as a possible explanation for the organic basis of CFS in the U.K.

For a link to the studies referenced and more resources on XMRV, please visit http://www.cfids.org/XMRV/default.asp#info

Citations:
Erlwein O, Kaye S, McClure MO, Weber J, Willis G, Collier D, Wessley S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS ONE 5(1):e8519. doi:10.1371/journal.pone.0008519

Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 8 October 2009. 1179052.
 

Cort

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New Scientist Response

New Scientist XMRV Imperial College

New Scientist is I think pretty respected (?). We got the first reaction from Dr. Mikovits; maybe it's not in Europe.

The XMRV polls here are actually referenced in this article:
none of 10 patients who used one company's test said they turned up positive for the virus, while six out of 12 people who took another set of tests offered by another lab said they were positive for XMRV.
The theory that chronic fatigue syndrome could be caused by a virus that jumped from mice to people has been dealt a blow by a British study that has found no evidence of the virus in people diagnosed with CFS.

Scientists are also warning people with the condition of the dangers of dosing themselves with antiretroviral drugs.

CFS affects more than a million people in the US and a quarter of a million in the UK. Its symptoms include persistent, severe tiredness, but its cause remains mysterious and contentious.

The debate on its origins took a new twist in October, when DNA from xenotropic murine leukaemia virus-related virus (XMRV) was found in the blood of about two-thirds of 101 people with CFS, compared with just 4 per cent of healthy people (Science, DOI: 10.1126/science.1179052). The researchers, led by Judy Mikovits of the Whittemore Peterson Institute in Reno, Nevada, suggested that XMRV might be causing CFS.

Missing virus

Now a second study, led by Myra McClure of Imperial College London, has failed to find XMRV in blood samples from 186 people in the UK with CFS. "We do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the UK," McClure's team says.

XMRV is a retrovirus, and viruses of this type have a history of claims linking them to diseases, which have later been questioned about 25 at the last count.

Mikovits stands by the conclusions in her paper. She suggests that XMRV may be less common in Europe and so might not be causing cases of CFS there.

At least one US lab is offering to test people with CFS for XMRV, while websites are abuzz with reports from patients who say they have been tested and queries about how to obtain zidovudine (AZT), the antiretroviral drug used to combat HIV.

Health warnings

"These are folks who've just gone and had the test done in a private lab," says Charles Shepherd, medical adviser to the ME Association in the UK, which provides support to people with CFS.

In lab experiments reported last month, AZT was found to block replication of XMRV (Virology, DOI: 10.1016/j.virol.2009.11.013). But Richard Baker, head of the group that wrote the official UK guidelines on CFS, warns patients against taking AZT, which can have side effects. "Anyone who uses it on themselves is taking a real risk with their health," he says. Mikovits says it is unlikely to be effective against CFS.

Negative hints

Other researchers are trying to further establish whether there is a link between XMRV and CFS, but have not yet published the results. There are hints that these results may also be negative.

The Robert Koch Institute (RKI) in Berlin, Germany, is also examining the link between XMRV and CFS. In November, its collaborators posted a short statement on the web saying that CFS patients had so far "rarely" tested positive for the virus. They later removed the statement.

According to Norbert Bannert, one of the virologists at the RKI, the statement was correct, but he adds: "It's not fair to give numbers when you're at the beginning of the investigation, and the first results have not yet been confirmed by an alternative test." He declines to give further details

McClure has also hinted that several studies due to be published soon have also found no link.

People with CFS who say they have been tested are less restrained. On one online message board, a handful of people have reported mixed results: none of 10 patients who used one company's test said they turned up positive for the virus, while six out of 12 people who took another set of tests offered by another lab said they were positive for XMRV.

If the virus link is not borne out, people with CFS are going to feel seriously disappointed, Shepherd warns. "I think people are going to feel very, very let down to put it mildly," he says.
 

Cort

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Eureka Alert XMRV

No Dissenting Opinions here either



Eureka Alert

New virus is not linked to chronic fatigue syndrome, suggests UK research

New UK research, published today in PLoS ONE, has not reproduced previous findings that suggested Chronic Fatigue Syndrome may be linked to a recently discovered virus. The authors of the study, from Imperial College London and King's College London, say this means that anti-retroviral drugs may not be an effective treatment for people with the illness.

An estimated three in 1000 people have Chronic Fatigue Syndrome (CFS), or myalgic encephalomyelitis (ME), experiencing severe physical and mental fatigue that is not alleviated by rest, together with other symptoms such as muscle pain, headache, joint pain and depression. Diagnosing CFS is difficult, as symptoms vary and there is no standard test. The fundamental cause of CFS is unknown and it is usually treated using rehabilitation techniques such as cognitive behavioural therapy or graded exercise therapy.

In October 2009, a group of US scientists published research in the journal Science that suggested that a recently discovered virus called XMRV could be linked to CFS. In their study, 68 out of 101 patients with the illness and 8 out of 218 healthy controls appeared to be infected with the virus.

However, in today's study, researchers found no evidence that patients with CFS had the XMRV virus, after analysing tissue samples from 186 patients with CFS using sensitive molecular testing techniques.

This more recent analysis showed no molecular evidence for XMRV in any of the samples from CFS patients. The researchers say this means that anti-retrovirals should not be used to treat CFS, as they would be unlikely to have an effect on the symptoms. However, several labs in the US now offer CFS patients treatments based on the earlier findings that linked the condition with XMRV.

Professor Myra McClure, one of the authors of the study from the Division of Medicine at Imperial College London, said: "Our research was carried out under rigorous conditions - we looked at samples from well-studied patients, and we used very sensitive testing methods to look for the virus. If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any of the murine leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination.

"We are confident that our results show there is no link between XMRV and Chronic Fatigue Syndrome, at least in the UK. The US study had some dramatic results that implied people with the illness could be treated with anti-retrovirals. Our recommendation to people with Chronic Fatigue Syndrome would be not to change their treatment regime, because our results suggest that anti-retrovirals would not be an effective treatment for the condition," added Professor McClure.

After reading the US study, clinical researchers from King's College London sent blood samples from 186 CFS patients to the Imperial Retrovirology Laboratory team. King's has been running an NHS service for CFS patients for nearly twenty years, and the previously stored samples came from patients had been fully investigated and examined, meaning that CFS was the correct diagnosis.

The Imperial scientists extracted the DNA from the samples and analysed it using a sensitive technique, called Polymerase Chain Reaction (PCR), which can locate tiny fragments of virus DNA. The scientists analysed control samples of water at the same time to ensure there was no contamination. They also looked for a specific marker fragment of human DNA in the sample to make sure the technique was working.

The water controls contained no DNA, showing that the samples were not contaminated. All the test samples, from patients and healthy controls, contained the human DNA they looked for, suggesting the technique was working well.

Dr Anthony Cleare, Reader in Psychiatric Neuroendocrinology, one of the authors of the study from the Chronic Fatigue Syndrome Clinic at King's College London, said: "Chronic Fatigue Syndrome is a serious and debilitating condition. It can also be extremely frustrating for people with the illness, as we have yet to identify its fundamental cause, or come up with any definitive treatments. The recent US study generated real excitement among doctors and patients alike as it seemed to open up a new line of research. Unfortunately, we have not been able to replicate those findings."

"It is important to emphasise that today's findings do not invalidate all previous research, some of which has shown that CFS can be triggered by other infective agents, such as Epstein Barr Virus or Giardia parasites. As ever in science, no single study is conclusive and there are lots of other research groups working on this at the moment. We await their results with interest," added Professor Simon Wessely, another author of the study from the Chronic Fatigue Syndrome Clinic at King's College London
.
 

Cort

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Independent UK

http://www.independent.co.uk/news/science/scientists-claim-to-have-found-the-cause-of-me-is-premature-1859003.htm

This one from London swallows the whole study - hook, line and sinker

and they take Science and the WPI to task for publishing the study at all.

January 6, 2010
Scientists' claim to have found the cause of ME is 'premature'
By Steve Connor, Science Editor
British researchers say US team should have waited for more evidence of viral link before publishing findings

British scientists have failed to find a link between a new kind of retrovirus and chronic fatigue syndrome in a study that contradicts previous findings by American researchers claiming to have found a possible viral cause of the debilitating condition.

The UK scientists could not detect a recently discovered virus called XMRV in any of the blood samples collected from 186 patients with chronic fatigue syndrome, which is also known as myalgic encephalomyelitis (ME). The researchers believe this demonstrates that XMRV is not implicated in the illness, at least not in Britain.

One scientist involved in the latest research also criticised the previous study, which was published in the peer-reviewed journal Science, saying it was premature and that the journal should have waited until there was stronger, corroborating evidence of such a link.

"When you've got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little," said Professor Myra McClure, a virologist at Imperial College London and a leading member of the British research team.

Chronic fatigue syndrome affects about three in every 1,000 people and results in severe physical and mental exhaustion. After the release of the apparent link with XMRV, many patients have asked their doctors about being tested for the virus and whether they should be taking antiretroviral drugs.

The earlier study, published last October, was carried out by a team led by Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada. They found the murine leukaemia virus-related virus (XMRV) in blood samples of 68 of 101 patients diagnosed with chronic fatigue syndrome. Just eight out of 101 healthy "controls" drawn at random from the same parts of the US also tested positive, suggesting that XMRV played a key role in triggering the condition. Dr Mikovits told The Independent at the time that further blood testing had found the virus in as many as 95 per cent of patients with chronic fatigue syndrome. She also said that preliminary testing on a batch of blood samples sent from Britain showed that the "same percentages are holding up".

However, Professor McClure's study, published in the online journal Plos One, failed to find any evidence of the XMRV's DNA in blood samples taken from 186 patients who had been diagnosed with chronic fatigue syndrome for at least four years. She also failed to find any virus related to XMRV.

"We are confident that our results show there is no link between XMRV and chronic fatigue syndrome, at least in the UK. The US study had some dramatic results that implied people with the illness could be treated with antiretrovirals. Our recommendation to people with chronic fatigue syndrome would be not to change their treatment regime, because our results suggest that antiretroviral would not be an effective treatment for the condition," Professor McClure said.

The British study was carried out under the most rigorous testing conditions that minimised the risk of cross contamination, Professor McClure said. The testing was also conducted "blind" meaning the scientists involved did not know which samples came from patients and which came from the healthy controls until the end of the experiment.

The DNA test used to detect the presence of XMRV in the blood samples is so sensitive that it would have shown up positive if just one molecule of the virus's genetic material had been present in the blood samples. However, the tests were only carried out on blood. It is possible the XMRV virus integrates its genetic material into other tissues of the body, although this is not supported by the American findings.

Anthony Cleare, reader in psychiatric neuroendocrinology at King's College London, which collected the blood samples, said the apparent link between chronic fatigue syndrome and XMRV generated a lot of excitement among doctors and patients but the latest study had failed to replicate those results.
 

Cort

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UK Yahoo

UK.Yahoo - no dissenting opinons

http://uk.news.yahoo.com/21/20100106...html?printer=1

Doubt cast on new fatigue theory
Wednesday, January 6 12:01 am

A new theory about the cause of Chronic Fatigue Syndrome (CFS) has been thrown into doubt by British scientists. Skip related content

Last October a team of US experts published research indicating that the debilitating condition, also known as myalgic encephalomyelitis (ME), can be triggered by a virus similar to HIV.

A study published in the journal Science linked cases of CFS with the recently discovered virus, called XMRV.

It suggested CFS could be treated with anti-retroviral drugs of the type given to patients with the HIV Aids virus. In light of the findings, several laboratories in the US have started offering treatment to CFS patients.

But now British researchers have conducted a new study which shows no evidence of XMRV playing a role in CFS.

The team analysed tissue samples from 186 patients with the condition using sensitive molecular testing techniques. No molecular evidence of XMRV was found in any of the samples tested.

The scientists say anti-retroviral drugs should not be given to people with CFS as they are unlikely to be effective.

Chronic Fatigue Syndrome affects an estimated three in 1,000 members of the population, producing severe physical and mental tiredness that is not alleviated by rest. Other symptoms include muscle pain, headaches, joint pain and depression.

Although the condition is now recognised as a genuine and not imagined disorder, its cause remains a mystery.

Professor Myra McClure, from Imperial College London, one of the authors of the new study, said: "Our research was carried out under rigorous conditions - we looked at samples from well-studied patients, and we used very sensitive testing methods to look for the virus. If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any of the murine (mouse/rat) leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination. We are confident that our results show there is no link between XMRV and Chronic Fatigue Syndrome, at least in the UK."
 

Cort

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ME Associations Response to the Imperial College XMRV Study

ME Association's Response to Imperial College XMRV Study
ME Association suggests that different types of patients, different techniques and different prevalence rates in Europe vs the US could explain the differing results.

http://www.facebook.com/notes/the-cf...e/270038560538

In October 2009, an American research group published a paper in Science which reported that they had found evidence of a new retrovirus called XMRV (xenotropic murine leukaemia virus-related virus) in a very high percentage (68/101) of people with ME/CFS - whose diagnosis met with both 1994 CDC/Fukuda research criteria and the Canadian clinical criteria. This compared to only 8/218 positive tests in the healthy control group.

The ME Association (MEA) has provided regular website updates on these findings and offered to help fund further research studies which would attempt to replicate these findings. The latest XMRV update can be found here: www.meassociation.org.uk

A number of research groups both in the UK and abroad are now carrying out XMRV replication studies using stored blood samples.

The first replication study to be reported in the medical literature comes from a very reputable virology/infectious disease group based at Imperial College in London. The group obtained stored blood samples from patients who have been attending the King's College Hospital (KCH) ME/CFS service.

The virologists examined 186 blood samples from the KCH patients who met Fukuda/CDC criteria for CFS using sensitive molecular testing techniques. DNA (viral genetic material), which was extracted from the blood samples, was screened for XMRV provirus and for the closely related murine leukaemia virus (MLV) by nested PCR (polymerise chain reaction) using specific oligonucleotide primers. PCR is a highly sensitive method that can locate tiny viral fragments. No molecular evidence of XMRV or MLV sequences was found in any of the ME/CFS samples.

These results clearly represent a major difference in scientific opinion on the possible role of XMRV in ME/CFS.

Among the explanations for the differing results that could be relevant are:
The use of different types of ME/CFS patients in the two studies. The American patients had 'severe disability', were diagnosed using both CDC/Fukuda and Canadian clinical criteria, and were obtained from a small group of private physicians who take a very biomedical approach to ME/CFS. The UK sample, who had 'high levels of disability', were diagnosed using only Fukuda/CDC criteria and came from King's College Hospital in London - an NHS tertiary referral centre that specialises in behavioural interventions.
There may be different prevalence rates for XMRV in different countries and it is interesting to note that German researchers were unable to replicate the American results in relation to the presence of XMRV in patients with prostate cancer.
The UK and USA laboratories used slightly different techniques for investigating the presence of XMRV and there may have been differing levels of risk in relation to the possibility of laboratory XMRV contamination.
Comment from Dr Charles Shepherd, Honorary Medical Adviser to the MEA:

"The ME Association has taken a cautious and open-minded view about the initial XMRV findings and offered to help fund further research into what could be a very significant finding. Although these UK results are clearly questioning the validity of the American conclusions, no single study can be regarded as being conclusive. So we believe it is important to wait for the results of further replication studies before drawing any firm conclusions about the possible role or pathogenicity (disease causing ability) of XMRV in ME/CFS. In the meantime, there seems little point in people with ME/CFS spending large sums of money in arranging private tests for XMRV. And in our current state of uncertainty it would not be appropriate for doctors to start prescribing antiretorviral treatment to people with ME/CFS."

"Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome."
Erlwein O et al. Public Library of Science/PL0S ONE open access journal: January 2010 http://www.plosone.org/article/info%...l.pone.0008519
 

Cort

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XMRV Buzz on Imperial College Findings

XMRV Buzz From Phoenix Rising on the Imperial College XMRV Study
http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx

The First XMRV Replication Study Published - and its a doozy. Originating from the Imperial College and with patients supplied by Simon Wessely, the study found zero (that's zero!) evidence of XMRV in 186 CFS patients. Here's a link to an article by the BBC and a link to the original paper

The basics of the study were that they looked at a lot of patients (186) who were quite ill (only 19% working), had high rates of disability, about 50% of which had infectious onset. They all met the standard CFS Criteria (1994 Fukuda) and they did not have a major psychiatric condition. (I'm unclear if depression is excluded or not). The researchers did not test healthy controls. They had a positive sample of XMRV to ensure that they could find the virus.

Remarkably, they didn't find the virus in any of the samples - a similar finding to an earlier German study that failed to find XMRV in any prostate cancer samples. These studies underline how complex situation these efforts are. Earlier the CFIDS Association noted that the German study did not adequately replicate the original XMRV prostate cancer study. Now Dr. Vernon of the CFIDS Association asserts the same is true with this Imperial College study.

In a CFIDS Link report Dr. Vernon stated that this study 'should not be considered a valid attempt to replicate the findings" of the Science Study. Basically she listed a series of methodological questions that could have interferred with the Imperial College Researchers ability to find the virus. Most of these will fly right over most of our heads but they include:

collecting the virus in different kinds of collection tubes
the DNA from the patients was extracted and purified in a different manner
they used different amounts of DNA to amplify their assays
they looked at different parts of the genome
tthey ran the PCR under different conditions

Based on Dr. Vernon's experience working with PCR any of these could have affected the results. She didn't say that they did but that they could have. She then pointed to a larger much more rigorous study that the Department of Health and Human Services is engaged in. (Both Dr. Vernon and Dr. Mikovits are part of a team overseeing that study). Since that study will involve multiple laboratories coming up with a standardized test first that study will take longer to finish. She did say that the CFIDS Association is urging that the DHHS study is completed as expeditiously as possible. She, also, like Dr. Klimas urged patients to be prepared for conflicting results'

"The U.S. Department of Health and Human Services Blood XMRV Scientific Research Working Group is conducting a rigorous study to detect XMRV. Multiple laboratories will standardize methods to optimize sensitive detection of XMRV proviral DNA and viral RNA and then, once methods are standardized, these same laboratories will test coded panels of blood samples obtained from healthy blood donors and CFS patients. We look forward to the results of this study and urge that it be completed expeditiously, especially in light of this report from the U.K. In the meantime, be prepared to read about more studies with conflicting findings. Rather than simply accept or dismiss new information, we will help make sense of why discrepant results occur."

It sounds like this study will most likely be the gold standard for XMRV study. It may, more than any other study, be the one that validates does not validate the Whittemore Peterson Institute's findings.
 
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Dang, wish I knew what McClure's "hints" were about other negative findings.

It is kind of interesting that the Koch-Institut took down their statement and then made kind of a strange statement as to why. It could be that they got negative PCRs and then did serology and got positives. Or it could be a bureaucratic snafu where one manager approved posting the statement, but a higher manager later found out about it and thought it was a bad idea -- that it might inappropriately bias other workers, or whatever.
 

Cort

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WPI Response to Imperial College Findings

FOR IMMEDIATE RELEASE
Frankie Vigil
R&R Partners for
Whittemore Peterson Institute
775-336-4555
frankie.vigil@rrpartners.com

Official Statement from the Whittemore Peterson Institute Regarding UK Study


The Whittemore Peterson Institute (WPI) has reviewed the paper entitled “Failure to Detect the
Novel Retrovirus XMRV in Chronic Fatigue Syndrome.” This study did not duplicate the
rigorous scientific techniques used by WPI, the National Cancer Institute and the Cleveland
Clinic, therefore it cannot be considered a replication study nor can the results claim to be
anything other than a failure not just to detect XMRV, but also a failure to suggest meaningful
results.

The scientific methods used by WPI are very exact and require specific techniques to ensure
accuracy. Differences in techniques employed by Erlwein et al. not only explain their failure to
replicate the WPI study, but also render the conclusions meaningless. These differences
include, but are not limited to the following:

1) blood sample volumes and processing;
2) patient criteria/population differences;
3) number and type of tests done to assure accurate results, including white blood cell
culture;
4) use of a molecular plasmid control in water versus a positive blood sample; and
5) different primer sequences and amplification protocol used to find the virus, which
were not validated by a clinical control.

The WPI study was published after six months of rigorous review and three independent lab
confirmations, proving that contamination had not taken place and that infectious XMRV was
present in 67 percent of CFS patients diagnosed according to the Canadian and Fukuda criteria.
In contrast, this latest study was published online after only three days of review. Significant
and critical questions remain as to the status of patient samples used in the UK study as those
samples may have been confused with fatigued psychiatric patients, since the UK has relegated
“CFS” patients to psychiatric care and not traditional medical practices.

“Little is known about the prevalence of XMRV world-wide, much less the incidence of XMRV
in ME/CFS or prostate cancer” emphasizes Dr. Judy Mikovits. “WPI and its NCI collaborators
are actively engaged with international research teams to investigate these important questions.”
WPI does not recommend the use of anti-retroviral drugs that have yet to be proven to be
effective in treating XMRV infection.

However, several large pharmaceutical companies have
expressed interest in developing anti-retroviral and immune modulating drugs that will
effectively treat XMRV associated diseases.

WPI looks forward to the results of other scientific groups around the world, serious about
replicating its scientific results, by using the same techniques as WPI and its collaborators. The
fact that XMRV was detected in 67 percent of the CFS samples in the U.S. study determined a
significant association between XMRV and CFS, demanding a much more serious inquiry by
responsible health agencies around the world as to the cause of this debilitating disease.
-###-
Whittemore Peterson Institute

The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge,
and effective treatments to patients with illnesses that are caused by acquired dysregulation of the
immune system and the nervous system, often results in lifelong disease and disability. The WPI is
the first institute in the world dedicated to X associated neuro-immune disease (XAND), and other X
associated diseases, integrating patient treatment, basic and clinical research and medical
education.
 

Summer

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Cort I put the response in it's own thread, but I'll be happy to delete it. I was afraid some members won't see it within the thread. :O)

ETA: Can't delete a thread, so if you or a mod feel it should not be in it's own thread, please delete. :O)
 
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George

Guest
No equivication there (grins)

I have to say the response was impressive. Wessley/McClure took direct swipes at the WPI so I'm not surprised to see the WPI put them firmly in their place.

I think the response was appropriate, considering the snide "discussion" section of the Wessley/McClure paper I think the response was civil.

Significant
and critical questions remain as to the status of patient samples used in the UK study as those
samples may have been confused with fatigued psychiatric patients, since the UK has relegated
CFS patients to psychiatric care and not traditional medical practices.
I was a little surprised that they came right out and made the above statement. I mean these guys don't need to get involved in the politics of CFS/ME in another country. Eventually they'll be the winners anyway. But it was really nice to have them say it on behalf of all of the UK patients and well. . .patients everywhere who have been "redefined".
 
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gerwyn morris

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gerwyn morris

If the Wessely semi structured interview was in fact used then the diagnostis is based on the oxford criterea. This unvalidated subjective approach might meet some of the Feduka criterea but definately not all.They certainly dont meet the Canadian diagnostic criterea and are therefore a different patient group.The results of the interviews have not been published so we dont know what symptoms were reported or more importantly recorded.Are we to take WESSLEYS, word especially considering his known bias.Why on earth are psychiatrists involved in virology?Why is the methodology different and why are the diagostic criterea different if they were genuinely attempting to replicate the study published in Science by the Whittmore institute?.I know that psychiatrists are medically qualified but are they scientists?Unless I,m much mistaken they are not Virologists

Gerwyn Morris BSc LLB
 
G

George

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Welcome to the Boards

You may want to read "The fight is on. . ." Which covers all of your questions, eventually. (grin)
 

fresh_eyes

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Really a not-bad article Kati linked to, above, (thanks, Kati!) highlighting the competition between scientists and the suspense of it all:

Scientist Smackdown: Is a Virus Really the Cause of Chronic Fatigue Syndrome?

An estimated three in 1,000 people suffers from the mysterious affliction chronic fatigue syndrome. Those people were probably enthusiastic in October when a team of U.S. medical researchers released a study arguing that not only is the syndrome real (some doctors dismissed it as purely psychological “yuppie flu”), but also that they’d connected it to a specific virus. DISCOVER covered the hubbub after the paper came out in the journal Science.

But now, in a study in PLoS One, a British research team has cast doubt on the American team’s findings, saying there’s no conclusive link between the virus and chronic fatigue syndrome, which is also known as myalgic encephalomyelitis.

The U.S. team’s findings sounded robust when they came out. They found the murine leukaemia virus-related virus (XMRV) in blood samples of 68 of 101 patients diagnosed with chronic fatigue syndrome. Just eight out of 101 healthy “controls” drawn at random from the same parts of the US also tested positive, suggesting that XMRV played a key role in triggering the condition [The Independent]. When the scientists from Imperial and Kings colleges in London attempted to replicate these findings, however, they found nothing of the sort. Of the 186 people with the syndrome that this team tested, not one showed signs of XMRV, or of any related virus.

Study coauthor Myra McClure of the Imperial College also criticized the U.S. team and the journal Science for rushing the findings into print in October. “When you’ve got such a stunning result you want to be absolutely clear that you are 1,000 per cent right and there are things in that [previous study] I would not have done. I would have waited. I would have stalled a little” [The Independent], she said.

As for the new study conducted in London, McClure declared: “We used very sensitive testing methods to look for the virus. If it had been there, we would have found it…. We are confident our results show there is no link between XMRV and CFS, at least in the UK” [The Guardian]. But the U.K. team says its contradictory findings could have resulted from differences in patients. According to the new study, the discrepancy “may be a result of population differences between North America and Europe regarding the general prevalence of XMRV infection, and might also explain the fact that two US groups found XMRV in prostate cancer tissue, while two European studies did not.”

Though McClure and her colleagues can’t say for sure how they and the Americans came to such different results, they wanted to put a stop to the rush of patients who started seeking antiretroviral treatments for chronic fatigue after the Science paper came out in October (XMRV is a retrovirus, like HIV). They say potent antiretroviral drugs should not be used to treat CFS because there is not enough evidence that this is necessary or helpful. The drugs may do more harm than good, they say [BBC News].

This might throw a wrench into the plans of Judy A. Mikovits, the lead author of the U.S. paper, to go ahead with antiretroviral testing. But the “avalanche of subsequent studies” that one medical researcher predicted to The New York Times after Mikovits’ paper is sure to continue.
 

Kati

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Really a not-bad article Kati linked to, above, (thanks, Kati!) highlighting the competition between scientists and the suspense of it all:

.[/B]

No problem Fresh Eyes, just defending the territory, that's all, and making sure articles are beng replied to.:Retro wink:
 

fresh_eyes

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No problem Fresh Eyes, just defending the territory, that's all, and making sure articles are beng replied to.:Retro wink:
Hi Kati - hope I didn't come across like I was disagreeing with you, because I wasn't at all. I agree, the response from WPI is still totally needed - just wanted to point out that this article did not drink the Wessely kool-aid as much as others I've seen thus far. :Retro smile:
 

MEKoan

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... this article did not drink the Wessely kool-aid as much as others I've seen thus far. :Retro smile:
True! It's kinda shocking when someone actually seems to have a nuanced take, huh? I had to read it twice just to make sure I was seeing what I thought I was seeing: reason.
 

Kati

Patient in training
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Hi Kati - hope I didn't come across like I was disagreeing with you, because I wasn't at all. I agree, the response from WPI is still totally needed - just wanted to point out that this article did not drink the Wessely kool-aid as much as others I've seen thus far. :Retro smile:
Not at all Fresh_eyes, and right now I am too sick to read the entire articles- I just scan- and noticed WPI was as quick as wind to respond to it. You guys are all great advocates and I am very proud to belong to this forum. It is a lifeline to me. Thank you.