Scottish CMO: "Looking for XMRV is not a worthwhile exercise"

Orla

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Letter from Scottish CMO Harry Burns to Convener of
Scottish Cross Party Group on ME

XENOTROPIC MURINE LEUKAEMIA VIRUS (MLV) – RELATED VIRUS (XMRV)

I have now had comments back from Scottish virologists. Clearly, your
enquiry stimulated significant discussion amongst the group.

They tell me that although they would very much like to be involved in
looking for an effective cause for chronic fatigue system, they believe
that recent publications looking for XMRV DNA in patients with CFS is
not a worthwhile exercise. I understand thet Prof. Peter Simmonds has
already looked for evidence of XMRV in stored samples from CFS patients
and has been unable to find any evidence of this infection. I understand
it has previously been claimed that the virus has been associated with
prostate cancer but again could not be found in two recent European
studies.The virologists tell me that contamination of chemicals with
mouse DNA is frequent and not always recognized,
and the weight of evidence is now building up to suggest that the paper
recently published by the research group in the USA may well have
suffered from from problems of contamination.

The Scottish virology group remains willing to be involved in potential
investigations to
Link CFS with a viral infection in the future, should suitable
candidates emerge.

I am sorry this does not appear to be the answer to this difficult
complex condition.

Kind regards.
 

kurt

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If the Scottish Cross is interested in helping us, maybe they should read the CFS research literature. There are plenty of viral leads to follow besides XMRV. Are they interested in HHV infections? In activation of HERVs? Or in RNasL issues?
 

Orla

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Hi Kurt, they've probably been reading the British Medical Journal too much!

I forgot to write that the CMO acrynomn stands for Chief Medical Officer, just in case those outside of the UK were wondering about what that stood for.

Orla
 
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They're like a load of ostriches the weasels have told to stick their heads in the sand.
 
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The Scottish Chief Medical Officer's views on XMRV

Quote from the Scottish Chief Medical Officer - Harry Burns....

"looking for XMRV DNA in patients with CFS is not a worthwhile exercise"

http://www.meactionuk.org.uk/Scottish-CMO-Letter-February-2010.htm

Details of Dr Harry Burns can be found here

http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/17914

Details of Professor Peter Simmonds can be found here

http://www.virology.ed.ac.uk/research/Simmonds.htm

His e-mail address is:- peter.simmonds@ed.ac.uk


Me thinks that these people need and education....

I have posted this to the WPI and I hope they respond in some way.
 

Esther12

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Sounds bad for the XMRV link. Good to know though.

I wonder why the WPI keep sounding so sure - they must be keeping tabs on replication attempts? I guess Wessely etc always sound really sure too.
 

Andrew

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They are overlooking a couple things. First, XMRV is not a mouse virus. It is only like a mouse virus, and came from a mouse virus, but it has never been found in mice. Therefore, mouse contamination is not likely. Also, if it were contamination, why then is it much more often found in samples of sick people.
 

Esther12

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Maybe he's right and it's the WPI which need educating.

If he's hearing negative things from the current replication attempts, I understand why he'd think that it's not worth looking for XMRV in CFS patients at this point. Maybe the WPI will have significant new evidence for him, or maybe they're wrong and he's right.

I don't think we should put all our eggs into the XMRV basket at this point. It would be nice if he'd follow up on his professed willingness to do other types of research though.
 
G

Gerwyn

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Quote from the Scottish Chief Medical Officer - Harry Burns....

"looking for XMRV DNA in patients with CFS is not a worthwhile exercise"

http://www.meactionuk.org.uk/Scottish-CMO-Letter-February-2010.htm

Details of Dr Harry Burns can be found here…

http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/17914

Details of Professor Peter Simmonds can be found here…

http://www.virology.ed.ac.uk/research/Simmonds.htm

His e-mail address is:- peter.simmonds@ed.ac.uk


Me thinks that these people need and education....

I have posted this to the WPI and I hope they respond in some way.
mouse dna is not infective the wpi virus was infective in human cells they have not read the study That sounds like Mclure by proxy!
 

MEKoan

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I am struck by the fact that the concerns of those who fail to be able to find XMRV are always addressed by Mikovits, et al, while those voicing the concerns just go on and on saying the same old thing.

Simply saying we cannot find it without addressing Mikovits' concerns about their methods is incredibly careless, arrogant and irresponsible. But, if you simply say something often enough, it becomes "accepted wisdom".

If not for private funding from the Whittemore family, and all other generous donors, this would swiftly go the way of Defritas' work.
 

Lily

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I think that by simply saying they can't find it, there's a finality to it that is so extremely dismissive that has more impact. Almost says "this is so silly we aren't going to waste our time"....
 
K

Katie

Guest
No big deal. Frankly, a Scottish study isn't going to be make or break for us, we need the Americans and the CDC. The doubters can only be vanquished that way if XMRV does prove to be the answer in any shape or form. These people in a position to help us have been sat with their fingers in their ears singing "la, la, lah I'm not listening, la la laaaa" for decades. We've just got to hope that the few who are listening, curious and ethical will give XMRV the fair hearing it deserves.

The Scottish CMO is but a fart in the breeze, along with the entire UK based fartfest, they smell bad but it will pass.
 

garcia

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The Scottish CMO is but a fart in the breeze, along with the entire UK based fartfest, they smell bad but it will pass.
LOL, Katie you say it like it is!

May all the fart-faces get their come-uppance one day soon.
 
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Hi there,

I didn't realise that people here do not really seem to be aware of what's going on in the UK.

At this time the official position of the UK and Scottish Governments is one of being "in denial" of XMRV.

There was a study published in PLoS ONE by Imperial back in January but they used a PCR test and different methods to find 0% of patients and healthy controls positive for XMRV.

Not only that but the patients they were given were carefully selected for them by Professor Simon Wessely - no doubt to ensure a 0% outcome.

Not long after this, Imperial started offering the test they had devloped for XMRV through their website. This commerical test cost 200 and was offered on the same basis as other tests for HIV, HTLV and STI's amongst others.

Suddenly this test was mysteriously withdrawn and eventually after some embarrassing silence it was said to be withdrawn because it was suitable for "research purposes only".

This seriously implies that the test Imperial used for the Imperial/PLoS ONE study was and is unreliable. Their study is thus also now open to many legitimate questions.

They did not use the tests that Lombardi used - telling people reading PLoS ONE that their test was good enough when Judy Mikovits has already said that PCR testing for XMRV in CFS/ME is being phased out for a better culture tests not yet available in the UK.

The fact that the WPI/Lombardi study found 3.4% of healthy controls positive for XMRV is another important factor indicating that the 0% TOTAL outcome in the UK Imperial study was a failure of their tests and methodology.

The Imperial test was based on whole blood samples and a PCR method that is no longer being used in the States because the culture method is more reliable and more sensitive.

Also, in the States the Lombardi team cultured concentrated white blood cells making the concentration far higher than using whole blood. And they chose patients known to be seriously ill and not those who are usually able to attend out-patient appointments at a department of psychiatry.

Professor Simon Wessely et al are desperate to ensure that 0% of people in the UK have XMRV because anything else begins the end for their cold grip on the CFS/ME community.

In the coming weeks the Medical Research Council will publish the PACE Trial study - costing millions of pounds.

For details of the PACE Trial read Magical Medicine: How to make a disease disappear by Professor Malcolm Hooper and specifically Section 4 and Conclusions towards the end.

http://www.meactionuk.org.uk/magical-medicine.htm

The UK is a corrupt country when it comes to CFS and ME.

It was corrupted 20 years ago when the mental health movement found a way to exploit their beliefs on vulnerable patients still waiting for hard science to catch up and help them.

The powers that be here right now are desperate to dismiss XMRV because just now the mental health movement is building it's empire of CBT and Graded Exercise.

The problem for them is - they built their empire on shifting sands.

Those sands have now shifted but it's going to need the writing on the Wall from the USA and elsewhere to finally push Wessely and his cronies aside.

I hope this puts some perspective on things for those who are new to UK ME Politics.

The Chief Medical Officer for Scotland will, I am sure, have to eat his own words given time.

Stephen.
 

Mithriel

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The work was done in Edinburgh, home of Michael Sharpe of "the undeserving sick of our society" fame. He probably supplied the samples.

Mithriel
 

joyscobby

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Scotland not the Brave

Letter from Scottish Chief Medical Officer Harry Burns to

Convener of Scottish Cross Party Group on Myalgic Encephalomyelitis.

February 2010


XENOTROPIC MURINE LEUKAEMIA VIRUS (MLV) – RELATED VIRUS (XMRV)

I have now had comments back from Scottish virologists. Clearly, your enquiry stimulated significant discussion amongst the group.

They tell me that although they would very much like to be involved in looking for an effective cause for chronic fatigue syndrome, they believe that recent publications looking for XMRV DNA in patients with CFS is not a worthwhile exercise.

I understand that Professor Peter Simmonds has already looked for evidence of XMRV in stored samples from CFS patients and has been unable to find any evidence of this infection. I understand it has previously been claimed that the virus has been associated with prostate cancer but again could not be found in two recent European studies.

The virologists tell me that contamination of chemicals with mouse DNA is frequent and not always recognized, and the weight of evidence is now building up to suggest that the paper recently published by the research group in the USA may well have suffered from problems of contamination.

The Scottish virology group remains willing to be involved in potential investigations to link CFS with a viral infection in the future, should suitable candidates emerge.

I am sorry this does not appear to be the answer to this difficult complex condition.

Kind regards,



Of course as you can imagine I am particularly disapointed with this. This is my initial reponse but not doubt will not be my last.

However, If Professor Peter Simmonds has realy studied this where is it published. Are his findings open to scrutiny on method as well as choice of cohort? Show the evidence.

The question of mouse contanination in the WPI study has been ruled out and answers to the accusation has been asnwered from many at many level including outwith the study.

They have a suitable candidate in me would they be willing to truely investigate this. I would do so if the WPI approve their methods.

I will be looking into this further.

Joy
 
K

Katie

Guest
Hi there,

I didn't realise that people here do not really seem to be aware of what's going on in the UK.
What on earth gave you that impression? We've been dissecting, discussing and tackling all UK related news and issues and their place in the wider context since the XMRV link broke. You should read some of the threads here but then the very, very long ones would eat up days at a time. Everything in your post has been discussed here and with great intelligence and insight.
 
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Doesn't Professor Michael Sharp work at The University of Edinburgh? Where Professor Peter Simmonds is also based. ;)