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

[CJB]

Anyone who doesn't want to look into the XMRV thing or doesn't want to pay benefits only has to reference the IC paper. That is it's value.

 

[Gerwyn]

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.

There are real problems with PCR in terms of false negatives and lack of reproducability of results in the same sample There is a growing body of work concerned with environmental polymerase inhibition

 

[Gerwyn]

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 f

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Suddenly this test was mysteriously withdrawn and eventually after some embarrassing silence it was said to be withdrawn because it was suitable for "research purposes only".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

PCR is notoriously innacurate in whole blood samples surely a prof of virology would know that

 

[MEKoan]

Joy,

I'm sure you are disappointed but, of course, you know how he looked for it. He got the relevant samples, held them up to a really bright light, gave them a shake and said: nope, I don't see any XMRV here!

When in doubt, read Gerwyn!

 

[_Kim_]

Hi there,

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

Are you kidding?

There have been almost 1400 replies and almost 70 THOUSAND views of The Fight is on...Imperial College XMRV Study

And then there are the numerous threads on Wessely, The Daily Mail, Sophia Mirza, Lynn Gilderdale, MRC, etc. etc. etc.

 

[rebecca1995]

Contamination

It's absurd that skeptics keep trotting out the contamination issue. Dr. Mikovits has already addressed this at length in two public presentations, including the one on ProHealth.

Even Dr. McClure doesn't think the Mikovits' positives resulted from contamination. From Cort's Q & A with her:

(4) You noted your rigorous attempts to preclude contamination. Does this suggest that contamination from a murine leukemia virus could have effected Lomdardis results?

It is far from clear that this was a problem in the Lombardi paper. Indeed, their sequencing data (given in the supplementary data to the Science paper) would argue against it. We highlighted our own conditions because it was right to give a clear insight into how the experiments were carried out.

 

[usedtobeperkytina]

Seems this guy only reads the studies on the surface. Public statements from spokesperson for the IC study insinuated contamination.

Mikovitz in her talk (available for this guy who is big in ME / CFS in Scotland can see online) explained why theirs could not be contamination. Also, she said CDC guy found it wasn't contamination. This guy is not keeping up too well is he?

And again, you got to do it right, with all the many variables, to get their results. And "Science" required more than PCR, and the study paper showed they found it with more than PCR.

Remember, it wasn't just WPI, it was NCI and CC.

From a public relations standpoint, it would be good to have a positive replication study published soon. But even if we don't, I am pretty confident.

As was asked, let's see him get his negative findings published in "Science".

Tina

 

[starryeyes]

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

Oh thank you. I kept thinking "Collatoralized Mortgage Obligations".

 

[Herbiv4]

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

"Everything in your post has been discussed here with great intelligence and insight."

How do these two sentences have anything in common?

 

[froufox]

Hahaha laughed hard at that one Katie!!! Lets hope the air freshens up soon eh?? lol

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

 

[Katie]

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

"Everything in your post has been discussed here with great intelligence and insight."

How do these two sentences have anything in common?

It's called a sense of humour.


But in all honesty, if any study in the UK found XMRV but the CDC does not, then the research will grind to a halt. We have no influence on the major stage, certainly not the influence required to carry a viral pathogenisis theory through a tide of psychiatrists and CBT/GET obsessives. The Scottish CMO support does not matter, things will not change independently here as we are too far gone down the psych route, we are reliant on a paradigm change being intiated from the US. Even Dr Kerr is getting funding from the US to circumvent our biased MRC. Our hope lies across the ocean. If anything I take heart in this powerlessness. While we remain in our failing system bounced around by therapists and alternative therapies while researchers toy around with PACE and FINE, it could all come to an end with a crushing blow if the Whittemore Peterson Institute continues to follow its remit to discover the cause of ME and a treatment or cure for it. I hope that everyone else takes heart in the fight that continues in the US and that most of the powers that be over here will fade away much like they did for people with MS when the time comes.

There's still a lot we can do from our position in the UK but we cannot change how we are treated clinically. Old ideas can be swept away but a vacuum cannot be left behind, hopefully the new ideas to fill the minds of future CMO's will be ones that leads to treatment and improved quality of life for all of us. For now I'm sticking to helping anyway I can, namely getting my XMRV results and getting my blood and tissue into studies if I'm positive, and anything that pops up along the way activism-wise.

Katie

 

[_Kim_]

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

"Everything in your post has been discussed here with great intelligence and insight."

How do these two sentences have anything in common?

Use the quote function or at least attribute the quote to the member who posted the text you are quoting.

I do not understand what your point is. What are you asking?

If you are trying to be sarcastic, stop.

Sarcasm is a form of personal attack and is considered a violation of the Forum Rules.

 

[thefreeprisoner]

I think the confusion may have arisen because Katie said "everything in your post has been discussed here" and perhaps Herbiv4 thought 'here' meant 'this thread'.
However, if you know 'here' means 'the Phoenix Rising forums' even a cursory look round would prove that she is entirely correct.

Rachel xx

 

[MEKoan]

Rachel,
Ah, that makes a great deal of sense of something that made no sense to me!

Hi Herbiv4,
Hang around and get to know people by reading their old posts. There are tons of threads covering your concerns and this board is graced by some incredibly knowledgeable, experienced and committed UK activists.

 

[Orla]

Scottish CMO error

I got this from someone who wrote to Prof. Simmonds, who the Scottish CMO mentioned in his original letter.
Here is the reply from Prof. Simmonds, and original quote mentioning him from the CMO is below that.

---------------------

Dear XXXXX

Thanks for the clarification. The email from Harry Burns represents
advice he received from the Scottish Consultant Virology Group. It is
wrong, however, on the crucial point that you highlighted in your email.

We have only screened samples from the general population and from small
groups of individuals at risk from HIV-1 or HCV infection. These were
obtained from the Medical Research Councils tissue samples archive
organised by Professor Jeanne Bell in Pathology, University of
Edinburgh. I would stress that we have not tested any kind of samples
from CFS sufferers, nor indeed do we have access to them.

Any investigation of this issue would require prospective collection of
patient-consented samples from CFS sufferers and controls along with
ethical approval from the local ethics committee, drawing up adequate
case definitions etc.

Although the issue has been discussed in outline
amongst the clinical virologists and Infections Disease physicians in
Scotland, a specific aetiological investigations is not being actively
pursued given the negative findings from the Imperial study. We are
however, continuing to monitor the situation and will review the
decision if new data come to light.

I am copying this email to Harry Burns so that the statement he made
about testing might be corrected in future.

Yours sincerely

Peter Simmonds

And yet, here is the quote from the CMO letter -

"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."

 

[MEKoan]

Orla,

Many thanks for this!

To my mind, this exposes a pretty egregious error on the part of Harry Burns.

Again, thanks!

 

[Adam]

Misinfomation

Thanks for this Orla.

Three interesting points emerge.

!. The misinformation in the original communicationby the Scottish CMO. How could someone misunderstand what Proff. Simmons said?

2. The reluctance (perhaps understandable) of the Scottish virologists to undertake any research given the Imperial study negative 'find'.

3. The influence of Wessely et al.

 

[sproggle]

I got this from someone who wrote to Prof. Simmonds, who the Scottish CMO mentioned in his original letter.
Here is the reply from Prof. Simmonds, and original quote mentioning him from the CMO is below that.

---------------------

Dear XXXXX

Thanks for the clarification. The email from Harry Burns represents
advice he received from the Scottish Consultant Virology Group. It is
wrong, however, on the crucial point that you highlighted in your email.

We have only screened samples from the general population and from small
groups of individuals at risk from HIV-1 or HCV infection. These were
obtained from the Medical Research Councils tissue samples archive
organised by Professor Jeanne Bell in Pathology, University of
Edinburgh. I would stress that we have not tested any kind of samples
from CFS sufferers, nor indeed do we have access to them.

Any investigation of this issue would require prospective collection of
patient-consented samples from CFS sufferers and controls along with
ethical approval from the local ethics committee, drawing up adequate
case definitions etc.

Although the issue has been discussed in outline
amongst the clinical virologists and Infections Disease physicians in
Scotland, a specific aetiological investigations is not being actively
pursued given the negative findings from the Imperial study. We are
however, continuing to monitor the situation and will review the
decision if new data come to light.

I am copying this email to Harry Burns so that the statement he made
about testing might be corrected in future.

Yours sincerely

Peter Simmonds

And yet, here is the quote from the CMO letter -

"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."

Makes you wonder if one such mistake has been made regarding this important information, what other misinformation is out there?

If the scottish virologists are taking the IC studies findings as being conclusive maybe one of our scientific brains could highlight the wholes in their testing.

Also I'm sure the positive UK samples would be of great interest to them once they've been given, and if they would accept, the relative information to do with the WPIs study being verified independantly as not due to contamination.

Jan xx

 

[starryeyes]

I would stress that we have not tested any kind of samples
from CFS sufferers, nor indeed do we have access to them. Prof. Simmonds

Yay Orla! This is great news for all of us.

 

[Mithriel]

The more I think about it, the better it seems for testing and studies to be put on hold until the WPI has perfected a repeatable test.

Especially in the UK, every negative study is going to be used to consolidated the psyches position. It is frustrating because negative studies are to be expected as any new discovery is teased out. If people were looking for a new primate, you would get groups unable to find it until its habits and lifestyle were worked out.

XMRV seems to be a very unobtrusive virus - I think of it like the quiet one sitting in the corner while other types are big and noisy. This very quietness could be the reason it can sneak in and cause so much devastation to our systems for so little to see. No big response of the immune system, no rapid destruction of organs just nothing working efficiently anymore.

A proper replication study using fresh blood from patients with post exertional exacerbation of symptoms tested by validated techniques I will believe, even if it is negative - though I might cry a bit :Retro smile:

Mithriel