UK News on XMRV from the ME Association and Co-Cure

by Cinda Crawford on January 6, 2010

in Announcements,Chronic Fatigue Syndrome

me-logoFor more news about what is happening in the UK on the subject of XMRV and CFS, Chronic Fatigue Syndrome, ME/CFS and more, check out this link at the ME Association. You’ll find all of their published and up-to-date research articles. You may want to bookmark this page and visit it often (like you do the Health Matters Show!).

co-cure
Also, as published by Co-Cure:

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 MEA (a.k.a. ME Association) 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 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:

1 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.

2 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.

3 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.’.

BBC NEWS ITEM: http://news.bbc.co.uk/1/hi/health/8441491.stm

I encourage you to keep up-to-date and informed with specific news threads through Co-Cure. I know it’s not necessary that all of us be at the knowledge level of scientists, but if you don’t stay informed, you may miss something important. (Note: you can sign up for their “digest” threads and receive one email a day on your requested subject.)

Happy hunting,
Cinda Crawford, host of the Health Matters Show

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{ 2 comments… read them below or add one }

1

Hip 01.06.10 at 6:51 pm

One of the co-authors of this study, Simon Wessely, has a vested interest in the outcome of such virus studies. Simon has staked his entire academic career on the (ludicrous) idea that diseases like chronic fatigue syndrome / myalgic encephalomyelitis are caused by purely psychological factors. Simon makes his money from the psychiatric business, after all.

Therefore Simon Wessely would be the last person you would want in a study like this: if he finds the virus in CFS patients, he shoots himself in the foot, and his career may never recover. So I wonder just how hard he looked for this XMRV virus.

The odd thing is, the authors declared in this study that they have no competing interests: not true! It is very much in the interest of Simon Wessely to not find this XMRV virus.

He should have declared that his whole career depends on not finding the virus.

2

Cinda Crawford 01.06.10 at 7:25 pm

Dear Hip,

Thanks for your words of wisdom. One of my Facebook friends just sent me this reply/ rebuttal/ answer from WPI.

Since it’s important and not all people have a Facebook account, here it is in entirety. Let me know if you have any other thoughts about this important research work.

Thanks, Cinda

Official Statement from the Whittemore Peterson Institute Regarding UK Study
FOR IMMEDIATE RELEASE

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

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.

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