Scottish CMO: "Looking for XMRV is not a worthwhile exercise"
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.
As the Alter/Lo paper nor the blood donation ban has made not a whiff of an appearance in the national media , where exactly could things be spun.
After finally reading all the reports I can fully understand hoverfly's anger because it looks like we have been left to spin upon the middle digit of someones hand.
Whether or not the guidelines are worse or better than NICE, is really missing the point IMO.
THREE MAIN POINTS.
1) The guidelines are based largely on full blatent lies, ie. 'based on best available evidence' - NOT.
No metion of XMRV or a retrovirus - shhhh, they got away with it.
2) They refer to CFS/ME as 'the illness'. But CFS/ME is NOT 'an illness', as it includes many various biomedical and psychological illnesses, including the one that is supposed to be up for discussion, ie. ME.
The guideline are therefore completely and provably unscientific.
3) Ten years ago, the main stated aim of the CPG was to work towards a centre of excellence.
The five years wasted, discussing and endlessly debating these guidelines, has been a massive diversion from this stated priority.
From thier point of view, thier cunning plan has worked a treat, ie. five whole years talking shop, with no positive outcome, no progress, and the small matter of very ill patients having thier time wasted, and believing that members of parliament are actually paid by taxpayers to represent them, not the medical/insurance/pharma industry.
Once again corruption has been accepted as normal.
I didn't mean to sound as if I was criticising anyone in particular, or had any great plan ready to swing in to action.
It was a bit of an irrelevent ramble related to me thinking about the way the Esther Crawley organisation is able to present itself.
I'm guessing you are too ill too make your presense felt in Edinburgh ?