BMJ: Issue 6 March 10: Focus on “CFS” and XMRV

BMJ: Issue 6 March 10: Focus on “CFS” and XMRV

Shortlink: http://wp.me/p5foE-2PQ

The 6 March issue of the BMJ includes seven XMRV and “CFS” related items.  There is also a Podcast which can be listened to on the BMJ site or downloaded here:

http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome/ 

The section on CFS and XMRV is 4.25 mins in from the start.

Contributions in the Podcast from Professor Simon Wessely on “CFS”, XMRV and the WPI paper, references to UK XMRV studies, the recent Dutch XMRV study and contribution from Jos W M van der Meer, professor of internal medicine, Department of Internal Medicine, Radboud University Nijmegen Medical Centre and Nijmegen Institute for Infection, Inflammation, and Immunity.

BMJ 6 March 2010 (Vol 340, No 7745)

http://www.bmj.com/current.dtl

1 Editor’s choice: ‘Let’s proceed with caution’ by Fiona Godlee.
Free full text: http://www.bmj.com/cgi/content/full/340/mar04_1/c1266

2 Editorial: ‘Chronic fatigue syndrome and human retrovirus XMRV’ by Simon Wessely and Myra McClure (p489)
Free full text http://www.bmj.com/cgi/content/full/340/feb25_1/c1099

3 Letter: ‘More than defeatism greets patients with ME’ from Stephanie Munn (p495)

4 Letter: ‘Severely affected, severely neglected’ from Charles Shepherd (p495)

5 Observations/Medicine and the media: Science, chronic fatigue syndrome, and ME by Cathie Sudlow (p510)
Extract: http://www.bmj.com/cgi/content/extract/340/mar03_3/c1260

6 Research highlights: Chronic fatigue syndrome and XMRV – reasons why the BMJ fast tracked the Dutch XMRV study and critical comments about the media publicity that accompanied publication of the Science paper in October 2009 (p516)

7 Fast Track Research: Prevalence of XMRV in patients with chronic fatigue syndrome in the Netherlands: retrospective analysis of samples from an established cohort (summary of key points (p520)
Free full text: http://www.bmj.com/cgi/content/full/340/feb25_1/c1018

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FOIs and questions to Imperial College, London re XMRV testing

FOIs and questions to Imperial College, London re XMRV testing

Shortlink: http://wp.me/p5foE-2NL

Update @ 21 February

The following request for information has also been submitted:

To: Imperial College London, Freedom of Information Office

Re: XMRV testing available via ICL Molecular Diagnostics Unit (MDU)

21 February 2010

I would appreciate acknowledgement of this request for information.

A revised notice on the website for the MDU states:

“The MDU offers XMRV testing for research purposes only. If you are a researcher who is interested in XMRV testing, please contact the unit with an outline of your requirements.

“There has been some confusion around the availability of the XMRV test, for which we apologise. We would like to clarify that it is only available as part of an ethically approved research project. We emphasise that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.”

On 6 February, The ME Association had published a notice on its website stating that it had been informed that an earlier announcement about XMRV testing on the MDU website:

“did not apply to people with ME/CFS, or suspected ME/CFS”

and that the test related only to:

“the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday.”

Although it has since been clarified by ICL that the XMRV testing being made available through the MDU is for researchers only, confusion persists over which diseases/conditions this test is being offered for.

I request the following information under the FOI Act:

1] For what diseases/conditions/study domains is the XMRV test being made available to researchers?

Sincerely,

etc.

 

The following requests for information under the Freedom of Information Act have been submitted to Imperial College, London and are published with permission. Information has also been requested direct from the Molecular Diagnostic Unit, Imperial College London. This issue will be updated when requests have been fulfilled.

Submitted by: Kim LeMoon
Date: 08 February 2010
Receipted: 09 February 2010

To: Imperial College London Freedom of Information Officer

Re: Request for information under FOIA in respect of all ongoing research projects or scheduled research projects relating to XMRV (Xenotropic murine leukemia virus-related virus) detection via blood samples, tissue samples or any other methods of detection

I should be pleased if receipt of this request for information could be acknowledged, together with the date by which a response will be provided.

I request the following information under the Act:

Project Supervisors:

Project title:

Laboratory supervisor:

Clinical supervisor:

1] Any Identification or Reference code assigned to Project

2] Project’s Public Title; Project’s Scientific Title

3] Study hypothesis/rationale (where applicable)

4] Ethics approval and any reference numbers attached to this approval

5] Study design

6] Countries of recruitment; Centres of recruitment; Other methods of recruitment

* Through what means will prospective participants be recruited?

7] For what diseases/conditions/study domains are patient samples to be collected?

* Through what means will control samples be assembled?

8] Participants – inclusion criteria

9] Participants – exclusion criteria

10] Target number of participants

11] Patient information material: please provide copies of any patient information material

12] Anticipated start date

13] Anticipated project completion date

14] Sources of funding

15] Sponsor details

Re: Addendum To Previous Request for information under FOIA in respect of all ongoing research projects or scheduled research projects relating to XMRV (Xenotropic murine leukemia virus-related virus) detection via blood samples, tissue samples or any other methods of detection

I should be pleased if this addendum is processed together with my first request that was sent earlier today 8 Feb 2010.

Please acknowledge receipt of both requests along with a Reference Number, and the date by which a response will be provided.

In addition to the earlier request that was made today, I request the following information under the Act:

1] Principal Investigator(s):

2] Names of Project Collaborator(s):

3] Names of Collaborating Institution(s):

From 27 Jan 2010 until 8 Feb 2010, XMRV Detection Testing was offered for £200 by the Molecular Diagnostic Unit via the Imperial College London website. On 8 Feb 2010, the information was removed from the website and replaced with this notification:

We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.

Please provide answers to the following questions:

4] Why was the Molecular Diagnostic Unit charging £200 if the XMRV Diagnostic Testing is to be carried out as part of an ethically approved research study?

5] Why was the XMRV Diagnosic Test being advertised to referring medical practitioners (GPs or hospital doctors) if the testing is being carried out as part of an ethically approved research study?

6] If the XMVR Diagnostic Test was not being offered for people who are concerned that they might have CFS, or who have been diagnosed with CFS, what patient population was the test intended for?

Submitted by: Richard Dagg
Date: 09 February 2010
Receipted: 10 February 2010

To: Imperial College London
Freedom of Information Officer

Re: Request for information under FOIA in respect of Molecular Diagnostic Unit XMRV Test

Please acknowledge receipt of this request along with a Reference Number, and the date by which a response will be provided.

From 27 Jan 2010 until 8 Feb 2010, XMRV Detection Testing was offered for £200 by the Molecular Diagnostic Unit via the Imperial College London website.

Please provide information regarding the exact testing methods employed in the test offered including, but not limited to the following:

1) blood sample volumes and processing
2) does the test use a molecular plasmid control in water or a positive blood sample
3) primer sequences and amplification protocol used

From Stephen Ralph via Co-Cure

09 February 10

[CO-CURE] ACT: Questions for Dr Steve Kaye and Professor Simon Wessely at Imperial College

It was recently announced that the test offered on the Imperial College website for XMRV in relation to CFS/ME and prostate cancer was now being withdrawn with immediate effect.

Imperial’s excuse for withdrawing the XMRV test from their website for “CFS/ME” and prostate cancer was because it wasn’t meant for patients and that it was only meant for “an ethically approved research project.”

Well, if this was the case then where does that leave all the other tests it offers on its website?

http://tinyurl.com/ylpmnq3

STI’s for £40 (each),

HCV genotyping for £100,

HBV for Genotypic Drug Resistance costing £100,

HTLV (costs covered by the NHS) and

HIV-1 (costs covered by the NHS)

Question 1 – Was this test that Imperial was offering (on the same basis as all the other test above) the same test used for the recent Imperial/PLoS One study?

Question 2 – Was the test different and if so – how was it different?

Question 3 – As all the other tests (shown above) are still available under the same framework then regardless of whether or not such tests are only available via requests from GP’s or Specialists – opposed to being offered direct to patients; why was the XMRV test removed?

Question 4 – If the answer to Question 2 was “No” and it wasn’t different then where does this leave the credibility of the PLoS One/Imperial study?

Question 5 – Was the Imperial test removed from the website because it was inherently unreliable? (Go back to Question 4)

Readers wanting answers to these question need to contact Dr Steve Kaye who was cited on the Imperial website as being the contact for the XMRV test (now withdrawn)..

http://wwwfom.sk.med.ic.ac.uk/resources/543939B5-003D-4709-B6EC-238FC0D5502F

Email: steve.kaye@imperial.ac.uk
Tel: 020 759 43917 (direct)

FAO Dr Steve Kaye
Molecular Diagnostic Unit,
Imperial College London
4th Floor, Medical School Building
St. Mary’s Hospital
Norfolk Place
London W2 1PG

I have asked Dr Kaye these questions and so far I have not received a reply.

Sincerely,

Stephen.

http://www.meactionuk.org.uk

Imperial College MDU modifies its XMRV clarification notice

Imperial College, London, Molecular Diagnostic Unit (MDU) modifies its XMRV clarification notice

Shortlink: http://wp.me/p5foE-2Mz

It has come to my attention, today, that the “notice of clarification” posted on the webpages of Imperial College Molecular Diagnostic Unit (MDU) has been modified since first published, last Monday.

The notice now reads:

XMRV testing 

The MDU offers XMRV testing for research purposes only. If you are a researcher who is interested in XMRV testing, please contact the unit with an outline of your requirements.

There has been some confusion around the availability of the XMRV test, for which we apologise. We would like to clarify that it is only available as part of an ethically approved research project. We emphasise that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.

For reference, the notice published on Monday, 8 February had read:

XMRV testing

We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.

Note that neither notice clarifes for which diseases/conditions/study domains this XMRV test facility is being offered.

Nor does the Molecular Diagnostic Unit confirm the information put out by the ME Association on Saturday, 6 February, that the test “…only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.” 

The ME Association has not been prepared to disclose the source of this information.

http://tinyurl.com/MEAonICLXMRVtest

ME Association

6 February 2010

Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS. It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.

ME Association not prepared to confirm source of XMRV “prostate cancer” test information

The ME Association is not prepared to confirm the source of its XMRV “prostate cancer” test information

Shortlink: http://wp.me/p5foE-2Ll

On 6 February, the ME Association put out the following notice:

 http://tinyurl.com/MEAonICLXMRVtest

“Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS. It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.”

Note no source for this information.

This morning, Imperial College, London, took down its XMRV Testing webpages and published this notice:

Imperial College London  XMRV Testing Notification

XMRV testing

We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.

Note no “full clarification” and no explanation of the specific purpose for which this test is intended  – only that it is “only available as part of an ethically approved research project” and that Imperial College is “not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.”

So, a test for detection of XMRV in what, precisely?

On Sunday, I emailed Tony Britton, ME Association Press and PR, with a request that the ME Association clarifies the source of its information that:

“It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.”

No response.

A few minutes ago, I telephoned Tony Britton for clarification. Mr Britton says he is not prepared to “reveal his sources”.

I asked Mr Britton if he would confirm or deny whether the information came directly from Imperial College.  He will not.

I asked Mr Britton if he would confirm or deny whether the information came directly from Professor Simon Wessley.  Again, Mr Britton was not prepared to confirm or deny, and abruptly terminated the call.

Given the paucity of information contained within the notification issued by Imperial College, this morning, speculation if rife.

The ME Association is evidently not prepared to be transparent.  How then, without knowing the source, can we decide whether this information might be relied upon or not?

Perhaps in future, if the ME Association is unwilling to provide verifiable sources for information such as this (which is in the public interest) it should think very hard about whether it should be prepared to put that information out in the first place.

So who is the ME Association acting as a spokesperson for?

And why is Imperial College not prepared to be transparent about the purpose of this test?

Important statement from Imperial College, London (XMRV Detection Testing)

Important statement from Imperial College, London (XMRV Detection Testing)

Shortlink: http://wp.me/p5foE-2Li

(Please note that all the pages for the XMRV Testing were off line at 11.15am GMT)

Imperial College webpage:

Imperial College London  XMRV Testing Notification

XMRV testing

We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.

The Prof Wessely XMRV Detection Test exchanges

The Professor Wessely XMRV Detection Test exchanges

Shortlink: http://wp.me/p5foE-2KS

This report may be reposted provided it is published in full, unedited and https://meagenda.wordpress.com is credited as the source.

Compiled by Suzy Chapman  |  7 February 2010

On 4 February, it was widely reported around the internet that the Molecular Diagnostics Unit, Imperial College, London, is now offering XMRV Detection Testing. All the available information on this £200 test, as it currently stands on Imperial College website, is published in this posting:

Complete text of Imperial College, London XMRV Detection Testing web pages (06.02.10)

In January, a study published by PLoSOne, and led by Prof Myra McClure of Imperial College, had reported that its authors found no evidence that XMRV is associated with CFS in the UK.

The study concluded:

“Based on our molecular data, we do not share the conviction that XMRV may be a contributory factor in the pathogenesis of CFS, at least in the U.K.”

and

“XMRV or MLV sequences were not amplified from DNA originating from CFS patients in the UK. Although we found no evidence that XMRV is associated with CFS in the UK, this 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.”

On 5 February, a member of the ME community, Fiona Verity, contacted Professor Simon Wessely, one of the co- authors of the paper: Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS One. 2010; 5: e8519Full paper

Prof Wessely is acknowledged in the paper as having been responsible for “providing samples and associated data from a well characterised and valuable cohort of subjects.”

[Cohort = 186 patients (62% female, age range 19-70, mean 39.6±11.3 years) from consecutive referrals to the CFS clinic at King’s College Hospital, London.]

On 5 February, the ME Association issued this position statement:

ME Association  |  05 February 2010

XMRV testing at Imperial College, London

Imperial College, the research centre in the UK that has found no evidence of XMRV infection in any of the blood samples from people with ME/CFS that they have looked at, has announced that their Molecular Diagnostics Unit is now offering their method for XMRV testing to the public: Imperial College announcement

 MEA POSITION STATEMENT

Until we have the results from more replication studies the link between XMRV and ME/CFS remains speculative and unproven. We do not therefore believe that there is any point in spending money on an expensive blood test which is not, at present, going to act as either a diagnostic marker or an aid to management. And any laboratory offering this test to the public has an ethical duty to make these points clear.

We would, however, be interested to hear from anyone in the UK who does decide to have an XMRV test.

The latest MEA summary on XMRV can be found here

A summary of the Imperial College research which looked for XMRV in ME/CFS can be found here

We hope that the situation regarding XMRV and ME/CFS will become clear once results from the other replication studies appear in the scientific journals over the coming months.

On 6 February, the ME Association published this notice: http://tinyurl.com/MEAonICLXMRVtest

“Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS. It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.”

The ME Association does not specify the provenance of this information.

When Imperial College does publish a clarification I will post an update at the top of this posting.

There has been much confusion about the purpose of this test and the patient population(s) that might be referred for it.

Questions have also been raised around the specific testing methods being used in relation to XMRV and its possible association with prostate cancer or suspected prostate cancer. Other laboratories have found XMRV in prostate tumour and tumour-associated tissues only, not in whole blood samples as specified by Imperial College. (References [1], [2] and [6], Imperial College website text.)

Ms Verity has very kindly given permission to publish in full the email exchange between herself and Professor Wessely.

From: Fiona Verity
Sent: 05 February 2010 16:57
To: Zielona, Olga
Subject: F.A.O Prof Wessley please forward

Dear Professor Wessley,

I am aware that the XMRV test is to be made available for purchase. I am concerned about this and would be grateful if you would read the following email that I have sent to ME agenda (below). I hope you will understand that there are many very vulnerable people aware of the research into an illness that is crippling their lives. Whilst you and your colleagues I am sure have their best interests at heart I fail to see why you are now offering this test to CF/ME sufferers and furthermore they will be charged.

Your own research failed to detect the XMRV virus yet you are going to sell this test for £200 to the very people that your research results concluded will not have this virus. I feel I must have misunderstood the thread of all this somewhere and I hope you will take the time to reply; my main question at this point is, do you expect the XMRV virus to now be detected in these tests perhaps through a different approach, if so what will you be doing with the findings and if not is there a benefit to be had by those paying and having the test?

Your advice is keenly awaited.

Thank you

Fiona Verity MSc

5th February 2010

To Whom It May Concern,

As I understand it the research for the connection between CF and XMRV virus tests according to Kings College were inconclusive. Furthermore, it appears questionable that this UK study can be compared with the major research and findings carried out in the US, as the exact conditions were not replicated and therefore one would expect different outcome measures. From what I understand it the very approach offered by Kings College for the process/testing of XMRV is flawed in-as-much as their controls do not replicate the procedures and protocols applied in the US therefore suggesting that King’s College research would fail to detect the XMRV virus.

Needless-to-say I am concerned that you are now making this same XMRV test available to ME/CF patients because it appears that this will be wasting their money – unless of course the testing approach has been altered to replicate US study and test? Secondly if the test is the same as that used in Kings College’s initial research then these results from the new tests paid for by CF/ME sufferers will go further to ‘falsely’ supporting inconclusive outcome result of Kings College’s own research.

I urge you therefore to look further into the matter so as not to afford a disservice to those you wish to assist i.e. ME/CF sufferers not to mention the devastating consequences of supporting research that could indeed be harmful to further much needed research in the field.

However, if I have misunderstood any element of this I look forward to an explanation at your earliest convenience.

Your faithfully

F. Verity MSc

 

From: Wessely, Simon
Date: 5 February 2010 18:26
Subject: RE: F.A.O Prof Wessley please forward
To: Fiona Verity

Thank you for your inquiry re the announcement from Imperial College that they are offering a diagnostic test for XMRV

I understand that this is not intended for people who know they have CFS or are concerned they might have CFS

I can see that this is not clear from the announcement though, but it seems this was an oversight which is going to be speedily corrected

I hope this clarifies matters

Simon Wessely

Professor Simon Wessely
Vice Dean, Institute of Psychiatry,
Head, Department of Psychological Medicine,
Director, King’s Centre for Military Health Research,
King’s College London

Imperial College website content as it stood at 6 February 10

Complete text of Imperial College, London XMRV Detection Testing web pages

Shortlink: http://wp.me/p5foE-2K1

Complete text of Imperial College, London XMRV Detection Testing web pages

Complete text of Imperial College, London XMRV Detection Testing web pages

Shortlink: http://wp.me/p5foE-2K1

Today, 6 February, the ME Association has published the following statement

“Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS. It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.”

On 5 February, Professor Simon Wessely’s office had responded to an enquirer that it was Professor Wessely’s understanding that this Imperial College test “is not intended for people who know they have CFS or are concerned they might have CFS”, that he could see that “it was not clear from the announcement”, that “it seems this was an oversight which is going to be speedily corrected” and that he hoped this clarified matters.

Professor Wessely was a co-author of the January 2010 paper: Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS One. 2010; 5: e8519.  Full text PLoSOne paper

This study, led by Prof Myra McClure of Imperial College London, found no evidence that XMRV is associated with CFS in the UK.

Professor Wessely is Vice Dean, Institute of Psychiatry, Head of Department of Psychological Medicine, Director, King’s Centre for Military Health Research, King’s College London. Since Professor Wessely is employed by the Institute of Psychiatry, it is unclear why he has taken it upon himself to act as a spokesperson for the Molecular Diagnostics Unit, Imperial College, London.

There has been much confusion about the purpose of this test and the patient population(s) that might be referred for the test. Questions have also been raised around the specific testing methods being used in relation to XMRV and its possible association with prostate cancer or suspected prostate cancer. Other laboratories have found XMRV in prostate tumour and tumour-associated tissues only, not in whole blood samples as specified by Imperial College.
(References [1], [2] and [6], Imperial College website text)

As the Imperial College webpages are anticipated to be updated next week in order to address the lack of clarity, I am publishing, for the record, copies of all text currently available on the Imperial College website that relates to the offering of this test.

—————

All text and Word document accessed on 06.02.10

http://tinyurl.com/XMRVDetectionTesting

This is Google’s cache of  http://tinyurl.com/XMRVDetectionTesting as the web page appeared on 27 Jan 2010 16:00:45 GMT.

Imperial College, London
Faculty of Medicine

XMRV Detection Testing

Scope of the test
Infection with the newly discovered retrovirus xenotropic murine leukaemia virus-related virus (XMRV) has been associated with prostate cancer [1, 2] and chronic fatigue syndrome (CFS) [3]. No causal link between infection and any human disease has been proven and the association between XMRV and prostate cancer or CFS remains controversial [4-6]. Indeed, in a study in our own laboratory of 186 patients with well-defined CFS we failed to detect the virus in any sample [7].

Test details (top of page)
The test uses the polymerase chain reaction (PCR) to detect XMRV provirus (the DNA form of the viral genome) in peripheral blood mononuclear cells. The limit of detection of the method is one XMRV proviral DNA copy in 105 cells. The test includes controls for non-specific inhibition of PCR to avoid false negative results. The method is a fully validated in-house method. A summary of the validation is available from the Unit Manager.

Reporting results (top of page)
The results will be reported as “XMRV detected” or “XMRV not detected”, the test is not quantitative at present.

Turnaround time (top of page)
We aim to issue reports within two weeks of receiving a sample. Details of samples and sample shipment are given on the user instruction page [weblink]. Please note we can only accept test requests and samples from medical practitioners (GPs or hospital doctors) we will not accept test requests directly from patients.

Charges (top of page)
The current charge for testing is £200/sample.

Complaints (top of page)
If you are unhappy with the service provided by MDU or if you wish to make suggestions on how our service can be improved, please contact the Unit Manager.

References (top of page)

1.Urisman A, Molinaro RJ, Fischer N Plummer SJ, Casey G et al. (2006) Identification of a novel gammaretrovirus in prostate tumors of patients homozygous for R462Q RNaseL variant. PLoS Pathog. 2: 211- 225.
2.Schlaberg R, Choe DJ, Brown KR, Thaker HM, Singh IR (2009) XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumours. Proc Natl Acad Sci U S A. 106: 16351-6
3.Lombardi V, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS et al. (2009) Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 326: 585-589.
4.Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H et al. (2008) Prevalence of human gamma retrovirus XMRV in sporadic prostate cancer. J Clin Virol. 43: 277-283.
5.D’Arcy FR, Foley A, Perry L, Marignol L, Lawler M et al. (2008) No evidence of XMRV in Irish prostate cancer patients with the R462Q mutations. European Urology 7 Suppl: 271
6.Hohn O, Krause H, Barbarotto P, Niederstadt L, Beimforde N et al. (2009) Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients. Retrovirology 6:92.
7.Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS One. 2010; 5: e8519.

—————

This is Google’s cache of http://tinyurl.com/XMRVuserinstructions as the web page appeared on 6 Feb 2010 19:11:36 GMT.

http://tinyurl.com/XMRVuserinstructions

First time users

For routine testing, the required sample is one 4.5ml EDTA Vacutainer of whole blood.

Each sample must be accompanied by a Request Form. This can either be the form provided by MDU or your own form. If it is the latter it must contain the following details:

•  patient clinic number (not the patient’s name)
• date of birth
• sample date
• reason for requesting the test

Samples should be couriered or mailed to MDU on the day of collection if possible.

If it is not possible to ship the sample the same day it can be kept in the refrigerator (not freezer) and shipped the next day or can be shipped the following Monday if taken on Friday.

The shipper is responsible for packaging the sample according to current guidelines for shipment of pathology specimens.

First time users

If you are using the service for the first time please contact the Unit manager, Dr Steve Kaye, to discuss your requirements and answer any questions you may have.

Email: steve.kaye@imperial.ac.uk
Tel: 020 759 43917 (direct)

Delivery address

FAO Dr Steve Kaye
Molecular Diagnostic Unit,
Imperial College London
4th Floor, Medical School Building
St. Mary’s Hospital
Norfolk Place
London W2 1PG

Test Request Form

http://tinyurl.com/XMRVTestRequestForm or

http://wwwfom.sk.med.ic.ac.uk/resources/543939B5-003D-4709-B6EC-238FC0D5502F/

Open Word document here on ICL site: ICL Test Request Form

Open Word document here on ME agenda: ICL Test Request Form

Text of Request Form

Imperial College London

MDU
Molecular Diagnostics Unit
Imperial College London
Jefferiss Trust Laboratory, St Mary’s Campus, Norfolk Place
London W2 1PG
Tel. +44 (0) 207 5943 917

Please send one 4.5ml EDTA Vacutainer to: Dr Steve Kaye, Molecular Diagnostics Unit, 4th floor Medical School Building, St. Mary’s Hospital, Norfolk Place, London W2 1PG.

The shipper is responsible for packaging the sample in accordance with current guidelines for the shipment of pathology specimens.

Note we will only accept requests from doctors or clinics, not directly from patients.

Patient details (sticker)

Clinic number_________________________ Sample date________________________

Date of birth_________________________

Reason for request:

Request from/report to: Doctor_____________________________________

Centre/Clinic________________________________

Address____________________________________
____________________________________
Tel___________________email_________________

Announcement about XMRV testing at Imperial College, London

Announcement about XMRV testing at Imperial College, London

Shortlink: http://wp.me/p5foE-2JV

ME Association  |  06 February 2010

IMPORTANT UPDATE – SATURDAY 6th FEBRUARY

Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS.

It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.

A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.

Dr Charles Shepherd

Hon Medical Adviser, MEA

ME Association position statement: XMRV testing at Imperial College, London

ME Association position statement: XMRV testing at Imperial College, London

Shortlink: http://wp.me/p5foE-2JL

Following an extraordinary move by Imperial College, London to offer testing for XMRV infection at £200 a pop (ICL must be very confident their test will return no positives), the ME Association issues a position statement:

ME Association  |  05 February 2010

XMRV testing at Imperial College, London

Imperial College, the research centre in the UK that has found no evidence of XMRV infection in any of the blood samples from people with ME/CFS that they have looked at, has announced that their Molecular Diagnostics Unit is now offering their method for XMRV testing to the public: Imperial College announcement

MEA POSITION STATEMENT

Until we have the results from more replication studies the link between XMRV and ME/CFS remains speculative and unproven. We do not therefore believe that there is any point in spending money on an expensive blood test which is not, at present, going to act as either a diagnostic marker or an aid to management. And any laboratory offering this test to the public has an ethical duty to make these points clear.

We would, however, be interested to hear from anyone in the UK who does decide to have an XMRV test.

The latest MEA summary on XMRV can be found here

A summary of the Imperial College research which looked for XMRV in ME/CFS can be found here

We hope that the situation regarding XMRV and ME/CFS will become clear once results from the other replication studies appear in the scientific journals over the coming months.

Imperial College London to offer £200 XMRV test

Imperial College London to offer £200 XMRV test! 

Shortlink: http://wp.me/p5foE-2Jx

Entry Word: chutzpah
Function:
noun
Meaning:
also chutzpa or hutzpah or
hutzpa
shameless boldness — see
EFFRONTERY

Having published, last month, in PloS One, that a study led by Prof Myra McClure (Imperial College London) and Prof Simon Wessely (King’s College London) found no evidence that XMRV is associated with CFS in the UK, Imperial College London is now offering a £200 XMRV test.

Related material:

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Abstract and links for full paper: http://wp.me/p5foE-2Bd
Media coverage Round up 1: http://wp.me/p5foE-2Bj
Patient organisation responses Round up 2: http://wp.me/p5foE-2BA

Imperial College London News Release PDF: Imperial College London News Release XMRV

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Otto Erlwein¹, Steve Kaye¹, Myra O. McClure¹*, Jonathan Weber¹, Gillian Wills¹, David Collier², Simon Wessely³, Anthony Cleare³

1 Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary’s Campus, Norfolk Place, London, United Kingdom, 2 Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry (King’s College London) De Crespigny Park, Denmark Hill, London, United Kingdom, 3 Department of Psychological Medicine, Institute of Psychiatry, King’s College London, Camberwell, London, United Kingdom

Imperial College London XMRV Detection testing

Scope of the test

Infection with the newly discovered retrovirus xenotropic murine leukaemia virus-related virus (XMRV) has been associated with prostate cancer [1, 2] and chronic fatigue syndrome (CFS) [3]. No causal link between infection and any human disease has been proven and the association between XMRV and prostate cancer or CFS remains controversial [4-6]. Indeed, in a study in our own laboratory of 186 patients with well-defined CFS we failed to detect the virus in any sample [7].

Test details

The test uses the polymerase chain reaction (PCR) to detect XMRV provirus (the DNA form of the viral genome) in peripheral blood mononuclear cells. The limit of detection of the method is one XMRV proviral DNA copy in 105 cells. The test includes controls for non-specific inhibition of PCR to avoid false negative results. The method is a fully validated in-house method. A summary of the validation is available from the Unit Manager.

Reporting results

The results will be reported as “XMRV detected” or “XMRV not detected”, the test is not quantitative at present.

Turnaround time

We aim to issue reports within two weeks of receiving a sample. Details of samples and sample shipment are given on the user instruction page [weblink]. Please note we can only accept test requests and samples from medical practitioners (GPs or hospital doctors) we will not accept test requests directly from patients.

Charges

The current charge for testing is £200/sample.

Complaints

If you are unhappy with the service provided by MDU or if you wish to make suggestions on how our service can be improved, please contact the Unit Manager.

References

1.Urisman A, Molinaro RJ, Fischer N Plummer SJ, Casey G et al. (2006) Identification of a novel gammaretrovirus in prostate tumors of patients homozygous for R462Q RNaseL variant. PLoS Pathog. 2: 211- 225.
2.Schlaberg R, Choe DJ, Brown KR, Thaker HM, Singh IR (2009) XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumours. Proc Natl Acad Sci U S A. 106: 16351-6
3.Lombardi V, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS et al. (2009) Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Science 326: 585-589.
4.Fischer N, Hellwinkel O, Schulz C, Chun FK, Huland H et al. (2008) Prevalence of human gamma retrovirus XMRV in sporadic prostate cancer. J Clin Virol. 43: 277-283.
5.D’Arcy FR, Foley A, Perry L, Marignol L, Lawler M et al. (2008) No evidence of XMRV in Irish prostate cancer patients with the R462Q mutations. European Urology 7 Suppl: 271
6.Hohn O, Krause H, Barbarotto P, Niederstadt L, Beimforde N et al. (2009) Lack of evidence for xenotropic murine leukemia virus-related virus (XMRV) in German prostate cancer patients. Retrovirology 6:92.
7.Erlwein O, Kaye S, McClure MO, Weber J, Wills G, Collier D, Wessely S, Cleare A. (2010) Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome. PLoS One. 2010; 5: e8519.

Test Request Form

Open Word document here on ICL site: ICL Test Request Form

Open Word document here on ME agenda: ICL Test Request Form