Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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My Response from the UK Secretary of Health on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by VillageLife, Sep 24, 2010.

  1. VillageLife

    VillageLife Senior Member

    United Kingdom
    I emailed Andrew Lansley UK Health Secretary about 3 weeks ago, informing him about the XMRV conference and asking him if he would be attending the XMRV conference in the USA.
    Here is the reply I got today,

    Dear Madam,

    Thank you for your email of 6 September to Andrew Lansley about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalopathy (CFS/ME). I have been asked to reply on Mr Lansleys behalf.

    I can assure you that the Department of Health is giving serious consideration to the recent findings on XMRV. The National Expert Panel on New and Emerging Infections will shortly be considering all the available scientific data and their risk assessment will be used to evaluate any threat to public health and to inform decisions on further research that may be required.

    The Department of Health agrees with the World Health Organizations classification of CFS/ME as a neurological condition of unknown cause. It has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained. What is important is that CFS/ME is a genuine and disabling illness and can have a profound effect on those living with the condition. The Department is committed to the provision of high quality care for people with CFS/ME and continues to acknowledge the importance of research into CFS/ME.

    Thank you once again for taking the time to write to the Department.
    Yours sincerely,

    Lisa Quarrell
    Customer Service Centre
    Department of Health
  2. Min

    Min Guest

    That sounds hopeful (unless it's double speak for 'we are getting the weasels to cover this up as fast as possible because we don't want to fund testing and treatment')
  3. eric_s

    eric_s Senior Member

    Switzerland/Spain (Valencia)
    "Customer Service Center"

    I like citizen better. But it's good they agree with the WHO's classification.
  4. Enid

    Enid Senior Member

    Wow ! and jolly well done too. Is the tide turning at last - fresh people at the helm perhaps. Great news.
  5. Sherby

    Sherby Sherby

    London UK
    Thanks for that Villagelife

    Just had a look at their findings. Myra McClure is on the Subgroup!
    National Expert Panel on New and Emerging Infections
    Meeting of Subgroup on Xenotropic Murine Leukaemia Virus-Related Virus
    Summary of Discussion
    7 May 2010

    Subgroup members
    Professor Andy Hall (Chair) National Expert Panel on New and Emerging Infections
    Dr David Brown Health Protection Agency Virus Reference Department
    Professor Myra McClure Imperial College London
    Professor Tim Peto University of Oxford
    Dr Falko Steinbach Veterinary Laboratories Agency
    Dr Jonathan Stoye National Institute for Medical Research
    Professor Richard Tedder Health Protection Agency Virus Reference Department
    Professor Jonathan Weber Imperial College London
    Agency Assessor
    Mrs Maggie Tomlinson Department of Health
    Ms Julia Granerod Secretariat to the Advisory Committee on Dangerous
    Ms Charlie Mirrielees Department of Health
    Miss Georgia Ladbury Health Protection Agency
    Dr Dilys Morgan Health Protection Agency
    Professor Will Irving Member of the National Expert Panel on New and
    Emerging Infections
    Dr Philip Minor National Institute for Biological Standards and Control
    Professor Greg Towers University College London

    And their findings

    Monday 21st June 2010

    4.1 A subgroup of this Panel was convened on 7 May 2010 to look at the
    current scientific evidence and assess the potential risk to public health from
    XMRV. The Panel was provided with the briefing paper used at the
    subgroup meeting, the minutes of the meeting, and published papers on the
    detection of XMRV in prostate tissue and the blood of CFS patients. A
    member of the XMRV subgroup presented the current knowledge about the
    virus to the Panel, and informed Members that the subgroup had reached
    the following conclusions:

    XMRV can infect humans but there is currently no evidence that it
    causes human disease;

    development of a robust diagnostic tool to accurately detect
    infection is a priority for further investigation of this infection

    further work is required to investigate tissue tropism and
    pathogenicity, epidemiology of infection and whether this infection is
    of any public health significance

    on the evidence before the group, no public health action is
    required at this time.

    4.2 The Panel members supported the conclusions and recommendations
  6. justy

    justy Donate Advocate Demonstrate

  7. Sasha

    Sasha Fine, thank you

    What a bizarre letter, given the actual facts of the case.

    Great, thanks, DoH...

    Not by the DoH, they haven't; quite spectacularly not, in fact, despite endless years of begging for research by desperate PWC...

    ...and provides precisely zero, as we can all attest (GET, anyone?)...

    ...while not actually ever doing any biomedical research itself.

    The fact that the DoH feels obliged to lie its head off in this way indicates, I hope, that it now feels under pressure. If one didn't know the actual situation in the UK for the past 20 years, one would think from this letter that the DoH has been pouring millions into biomedical research on all these possible different causes and despite its heroic effects has drawn a blank, while nevertheless showering proper medical treatment, for our symptoms at least, on profoundly disabled patients. What a load of horseshit. :(
  8. julius

    julius Watchoo lookin' at?

    Sounds like a typical PR / BS response to me.
  9. Wonko

    Wonko Senior Member

    The other side.
    it is - they've been using the same basic letter for years - make all the right noises but then proceed on their merry way regardless
  10. garcia

    garcia Aristocrat Extraordinaire

    Very patronizing and useless reply.
  11. leela

    leela Slow But Hopeful

    Couchland, USA
    On the lighter side of things, I cannot imagine how difficult it must be to move through life with the name
    Lisa Quarrell! "Lease-A-Quarrel." Heehee "I've come for an argument."
  12. Cloud

    Cloud Guest

    Wait a minute! Did she say the department of health agrees with the WHO that ME/CFS is a Neurological condition? This is from the UK department of health? I'm sitting here sputtering not sure how to respond to that.
  13. Angela Kennedy

    Angela Kennedy

    Essex, UK
    Yeah. The government subscribe to the WHO ICD-10. A few years ago government reps (and a WHO collaborating centre in the UK) were spreading misinformation that ME/CFS was classified as a psychiatric disorder by WHO and were called to account by the Countess of Mar and others. They HAD to confirm their acceptance of the WHO neurological classification of ME/CFS.

    In the great scheme of things it means little - just business as usual. It was an important 'victory' - correcting misinformation- though. But we see here how it's used for spin and nothing else.
  14. twopenneth


    The Department of Health agrees with the World Health Organizations classification of CFS/ME as a neurological condition of unknown cause. It has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained..

    The WHO description of ME/CFS includes a post viral causal factor. the DoH statement is misleading. I do not see any of the other alleged causal links in the W.H.O description of ME/CFS as suggested by the DoH.

    My guess is that the causal factors they mention are probable consequences of the persistent retroviruses and years of neglect by the DoH.

    Myalgic encephalomyelitis code G93.3. The alphabetic index contains other terms, such as chronic fatigue syndrome, that WHO considers synonymous or clinically similar.

    G93, Other disorders of brain, in Chapter VI, Diseases of the Nervous System, and created a new code G93.3, Postviral fatigue syndrome, a condition which was previously in the symptom chapter of ICD-9.
  15. Cloud

    Cloud Guest

    Then why is the psych propaganda still accepted as truth in the UK? Why is Wessley still considered the final word on ME? Why are NICE guidelines being followed, and why are CBT & GET considered the treatment of choice? Why is the UK health department supporting and paying for ME clinics that treat it as a psych disease if they have been called to account on the WHO classification of a neurological disease? What am I missing here?
  16. Min

    Min Guest

    You're missing the enormous amount saved by both our National Health Service and by private health insurance firms if they don't have to pay for testing and treatment.

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