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UK Gov response to lyme testing petition

Discussion in 'Lyme Disease and Co-Infections' started by sarah darwins, May 25, 2016.

  1. sarah darwins

    sarah darwins I told you I was ill

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    A while back there was a petition on change.org asking the British government to:

    Develop accurate NHS tests and effective treatment protocols for Lyme disease

    Today the Department of Health issued a formal response to it. I can't see any reason not to reproduce it in full here:

    Link to petition and response: https://petition.parliament.uk/petitions/113475
     
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  2. duncan

    duncan Senior Member

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    So, the response to the petition is "Piss off", but with a smiley face and a cup of warm cocoa?
     
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  3. Valentijn

    Valentijn Senior Member

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    I thought it sounded more like a "fuck off, crazy whiners", though I'm not much good at being polite.
     
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  4. sarah darwins

    sarah darwins I told you I was ill

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    Well, perhaps we shouldn't complain. We only have to wait another two and a bit years before we get some new guidelines. Probably.
     
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  5. duncan

    duncan Senior Member

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    There will likely be a preview of the new NICE guidelines when the IDSA publishes theirs this October.
     
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  6. Large Donner

    Large Donner Senior Member

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    The whole reply is based on the notion that lyme disease is just a little tic bite that gives you a rash for a week or so and you can get cured with a weeks worth of antibiotics and that GPs can manage this condition based on the NICE guidelines completely ignoring the issue or chronic lyme.

    means.....

    "We can therefore completely dismiss the issue of chronic lyme"
     
    Last edited: May 25, 2016
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  7. duncan

    duncan Senior Member

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    Pretty sure NHS testing is C6-centric. The testing is calibrated around three species. Any species or strains outside of that calibration might not get picked up.

    I am fond of the C6 because if you test positive, and stay positive, then it's really hard for them to deny you've Lyme, even after treatment. But many people I respect for their knowledge of Lyme say the C6 in the UK is too insensitive to the strains appearing there. For instance, a year or two ago a new strain that is specific to Scotland was discovered. And species like B miyamotoi - which is sweeping across North America AND parts of Europe, will not be revealed with conventional testing.
     
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  8. msf

    msf Senior Member

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    ´We are not aware of any evidence that very large numbers of cases are undiagnosed and untreated´ (my italics).

    To paraphrase Hitchens (because I can never remember the exact quote), anyone who says this can already be discounted from the debate.
     
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  9. Large Donner

    Large Donner Senior Member

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    This statement is a proven fraud in itself. One can say, "we do not agree with presented evidence that x, y or z is the case" ...... one can say "it has been disproved that x, y or z is the case" etc ......but to claim that they are not aware of any evidence that lyme is under diagnosed proves that they have no desire to collect accurate figures on the prevalence of a disease.

    Once someone has presented such evidence to you it is evidence full stop. It's a different matter to say "that is weak evidence", but to blatantly ignore the evidence or to go out of your way not to search for prevalence diagnosis and misdiagnoses is the only qualifying reason to make such unqualified statement as...

    They prove by the wording of that statement that they have no desire or believe they have a duty of care, to try to seek out the evidence themselves.

    As long as we put our fingers in our ears and cover our eyes there is no evidence.

    So now the next step is quite simple and that is to present them with the evidence and ask them if they are previously on the record as ever having disputed the validity of that evidence.

    If they have never disputed the evidence previously on the record they cannot now claim suddenly that the evidence has no validity without an open and public independent investigation.

    If they have ever disputed the evidence previously then their original statement is a lie.
     
    Last edited: May 25, 2016
  10. msf

    msf Senior Member

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    I like your logic, @Largedonner, but unfortunately NICE (moronic acronyms and treating ME patients badly seem to go hand in hand in the UK) doesn´t have a great record of acting logically.
     
  11. sarah darwins

    sarah darwins I told you I was ill

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    Gawd, yes, we lead the world in moronic acronyms. Sometimes it's like being in a giant kindergarten.
     
  12. Large Donner

    Large Donner Senior Member

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    True. But the response is from the Department of Health. I'm not sure though what responsibility they have on determining prevalence statistics of diseases. One would think that they or some body under them does have such a responsibility, so to claim lack of awareness of evidence for or against such a dispute is disingenuous.

    Watch this space for feck all to happen though. :meh:
     
  13. msf

    msf Senior Member

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    I think that body is NICE, but I may be wrong.
     
  14. meandthecat

    meandthecat Senior Member

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    Not Interested in Collecting Evidence.

    NICE is such a hideous acronym, conjouring up all the things one was supposed to be as a child, for the convenience of others. It also carries with it disappointment being the name of a cheap biscuit, a substitute for the real thing..
     
  15. Large Donner

    Large Donner Senior Member

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    [​IMG]
     
  16. meandthecat

    meandthecat Senior Member

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  17. sarah darwins

    sarah darwins I told you I was ill

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    Didn't he just win Britain's Got Talent?
     

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