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

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