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

Discussion in 'General ME/CFS News' started by Orla, Feb 13, 2010.

  1. CJB

    CJB Senior Member

    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.
  2. Gerwyn

    Gerwyn Guest

    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
  3. Gerwyn

    Gerwyn Guest

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

    MEKoan Senior Member


    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!
  5. _Kim_

    _Kim_ Guest

    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.
  6. rebecca1995

    rebecca1995 Apple, anyone?

    Northeastern US

    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:

  7. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    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".

  8. starryeyes

    starryeyes Senior Member

    Bay Area, California
    Oh thank you. I kept thinking "Collatoralized Mortgage Obligations". :rolleyes:
  9. 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?
  10. froufox

    froufox Senior Member

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

  11. Katie

    Katie Guest

    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.

  12. _Kim_

    _Kim_ Guest

    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.
  13. 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
  14. MEKoan

    MEKoan Senior Member

    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.
  15. Orla

    Orla Senior Member

    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."
  16. MEKoan

    MEKoan Senior Member


    Many thanks for this!

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

    Again, thanks!
  17. Adam


    Sheffield UK

    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.
  18. sproggle

    sproggle Jan

    Teesside, England UK

    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
  19. starryeyes

    starryeyes Senior Member

    Bay Area, California

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

    Mithriel Senior Member

    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:


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