G
George
Guest
Alice1 rocks! Big licks and a tail wag
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Dr. Yes
Shame on You
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- 868
Couple more points..
No, neither of those UK papers, nor others, should be allowed to get away with the "healthy controls" nonsense, but most of all not with the statement that this study "contradicts" or "discredits" the WPI study. It CANNOT because it was not a true replication attempt! Using different criteria and different protocols, etc means it is NOT what scientists call a "replication study" (a fundamental part of experimental science).
from Levi:
This certainly seems orchestrated, based on the speed and tone of the articles coming out. It's frightening to think what we may be (and always have been) up against.
No, neither of those UK papers, nor others, should be allowed to get away with the "healthy controls" nonsense, but most of all not with the statement that this study "contradicts" or "discredits" the WPI study. It CANNOT because it was not a true replication attempt! Using different criteria and different protocols, etc means it is NOT what scientists call a "replication study" (a fundamental part of experimental science).
from Levi:
I PM'd Jenny Spotila a little while ago with the concerns raised to that effect on this thread. I suggested a joint press release with Dr. Vernon and at least one other respected specialist, such as Dr. Klimas. A response from the CAA alone will (incorrectly) be seen as lightweight by airheaded or co-opted journalists, I fear.
This certainly seems orchestrated, based on the speed and tone of the articles coming out. It's frightening to think what we may be (and always have been) up against.
"New Scientist" has a history with Wessely-many will remember this from March:
http://www.newscientist.com/article/mg20126997.000-mind-over-body.html
http://www.newscientist.com/article/mg20126997.000-mind-over-body.html
Oh yeah, it's orchestrated and always has been.
The truth is hugely expensive.
Billions of dollars are at stake in disability, treatment, litigation...
If we hadn't been fecked over so long we would not be so expensive but we were and we are. They aren't going to roll over and start writing cheques.
Truth will out.
Cort
Phoenix Rising Founder
- Messages
- 7,390
You have a point: this thread is now #1 on Google - XMRV and Imperial College
Yeah, crazy that you suddenly become the purveyor, huh?!
You gonna pull 'em? Don't want to make it too easy for those who wish us ill.
peace out
G
George
Guest
Bingo!
Give the man a prize!
Remember earlier we were wondering why anyone would make such rash statements? It's the "DeFreites Feint", Dr. Reeves hands are tied right now but not Wessley and group. This is a rather pathetic attempts to halt things. Here are dozens of "articles" slamming the WPI study, advising patients not to get tested, asserting that patients were getting retro viral treatments from Doctors. That there are "other" (unspecified) studies can't replicate either????t This is disinformation at it's best.
Butttttttt. . . There is no stopping the train. There are dozens of studies going on right now that are not going to just shut down because of a misinformation campaign. And there are Pharma companies hungry for profits that are not going to let this stand in their way either. There are a lot of Retrovirologist who need something to do, studies to fund because the HIV money is drying up. This really could end up being a gambit that backfires all over Wessley. Of course I notice his name is neither first or last. I imagine he will Wessel out of it some how. (grin)
Give the man a prize!
Remember earlier we were wondering why anyone would make such rash statements? It's the "DeFreites Feint", Dr. Reeves hands are tied right now but not Wessley and group. This is a rather pathetic attempts to halt things. Here are dozens of "articles" slamming the WPI study, advising patients not to get tested, asserting that patients were getting retro viral treatments from Doctors. That there are "other" (unspecified) studies can't replicate either????t This is disinformation at it's best.
Butttttttt. . . There is no stopping the train. There are dozens of studies going on right now that are not going to just shut down because of a misinformation campaign. And there are Pharma companies hungry for profits that are not going to let this stand in their way either. There are a lot of Retrovirologist who need something to do, studies to fund because the HIV money is drying up. This really could end up being a gambit that backfires all over Wessley. Of course I notice his name is neither first or last. I imagine he will Wessel out of it some how. (grin)
Cort
Phoenix Rising Founder
- Messages
- 7,390
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 investigator’s 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.
____________
Suzanne D. Vernon, PhD, earned her doctorate in virology at the University of Wisconsin at Madison and worked in public health research on infectious diseases at the U.S. Centers for Disease Control and Prevention for 17 years before joining the CFIDS Association of America’s staff as scientific director in 2007. She has more than 70 peer-reviewed scientific publications on topics including human immunodeficiency virus, human papillomavirus, cervical cancer and chronic fatigue syndrome. Dr. Vernon has initiated and participated in numerous international and multidisciplinary research collaborations and she now leads the CFIDS Association’s research program. The CFIDS Association of America is the nation’s largest philanthropic supporters of CFS research.
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 investigator’s 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.
____________
Suzanne D. Vernon, PhD, earned her doctorate in virology at the University of Wisconsin at Madison and worked in public health research on infectious diseases at the U.S. Centers for Disease Control and Prevention for 17 years before joining the CFIDS Association of America’s staff as scientific director in 2007. She has more than 70 peer-reviewed scientific publications on topics including human immunodeficiency virus, human papillomavirus, cervical cancer and chronic fatigue syndrome. Dr. Vernon has initiated and participated in numerous international and multidisciplinary research collaborations and she now leads the CFIDS Association’s research program. The CFIDS Association of America is the nation’s largest philanthropic supporters of CFS research.
Cort
Phoenix Rising Founder
- Messages
- 7,390
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-cfids-association-of-america/me-association-statement-about-uk-study-of-xmrv-in-me/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 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:doi/10.1371/journal.pone.0008519
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-cfids-association-of-america/me-association-statement-about-uk-study-of-xmrv-in-me/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.
"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:doi/10.1371/journal.pone.0008519
Hysterical Woman
Senior Member
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- 857
- Location
- East Coast
Cort posted this on the Imperial College thread
http://www.facebook.com/notes/the-c...eed-for-robust-replication-study/270023985538
CFIDS Assoc. response on their FB page. Didn't know if it was posted here too, sorry if duplicate.
Maxine
http://www.facebook.com/notes/the-c...eed-for-robust-replication-study/270023985538
CFIDS Assoc. response on their FB page. Didn't know if it was posted here too, sorry if duplicate.
Maxine
Cort
Phoenix Rising Founder
- Messages
- 7,390
XMRV Buzz From Phoenix Rising on the Imperial College XMRV Study
http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx
http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx
K
_Kim_
Guest
HEALTHY CONTROLS??
Okay, I'm stuck on this one. McClure talked to the reporter and mentioned healthy controls, yet there is no mention of this in the published paper.
Is it possible that they did find XMRV in some of the healthy controls? And then they chose to omit this from the findings so that they could claim that "we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the U.K."?
K
_Kim_
Guest
Maxine, the statement from SV has been posted, HOWEVER...this is what I found as the last comment on that discussion.
Hysterical Woman
Senior Member
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- Location
- East Coast
G
George
Guest
pant, pant, pant (tongue is lolling)
I'm tired I've been at this for like 4 hours. I think I'll go to bed and snuggle down all nice and comfy with my furry babies. Cause in the morning I'm getting up and drafting an e-mail including Dr. Vernons reply and I am going to send it not only to the idiots who have swallowed the Wessley BS whole but to every reputable news outlet my little brain can think of.
I hope every body does the same.
We have three things that Dr. DeFreites didn't have in 1991
1.- the internet
2. - a really well done, water tight study and
3 - an organized group of really pissed people
(grins) looking forward to tomorrow. . .
I'm tired I've been at this for like 4 hours. I think I'll go to bed and snuggle down all nice and comfy with my furry babies. Cause in the morning I'm getting up and drafting an e-mail including Dr. Vernons reply and I am going to send it not only to the idiots who have swallowed the Wessley BS whole but to every reputable news outlet my little brain can think of.
I hope every body does the same.
We have three things that Dr. DeFreites didn't have in 1991
1.- the internet
2. - a really well done, water tight study and
3 - an organized group of really pissed people
(grins) looking forward to tomorrow. . .
Cort
Phoenix Rising Founder
- Messages
- 7,390
This is not lighting up the media yet; its mostly articles from the UK. I added the CAA's, MEA's and My report - to give fuller coverage. It'll be interesting to see how the US media shows up particularly the New York Times.
shannah
Senior Member
- Messages
- 1,429
Whittemore Peterson Institute Facebook Page just announced:
"We have been working on a response all day with PR. I will publish as soon as I get the authorization to do so"
"We have been working on a response all day with PR. I will publish as soon as I get the authorization to do so"