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Online Conference - Federal Framework for Lyme Disease (Canada)

Discussion in 'Other Health News and Research' started by ScottTriGuy, May 6, 2016.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Four years after a Bill was tabled, a Law was enacted forcing the (previous) Federal government to take action on Lyme Disease.

    The Federal Framework for Lyme Disease Act and subsequent Conference (from May 15th to 17th) is the result of those advocacy efforts. I believe the (new) Minister of Health, Dr. Jane Philpott, will give the opening address.

    Canadian ME patients have made Minister Philpott (through Policy Advisor Dr. Jesse Kancir) aware of the need for a Federal Framework for Myalgic Encephalomyelitis.

    The Lyme Conference may be instructive for our ME advocacy actions. There may also be science informative to our illness.

    The Lyme Conference is being held in Ottawa, but also available free online from the comfort of home - first step is to complete this simple pdf form:

    http://healthycanadians.gc.ca/disea...deral/alt/registration-enregistrement-eng.pdf

    And then email pdf as attachment is to this address:

    LymeDiseaseConference-ConferenceMaladieLyme@phac-aspc.gc.ca

    They will then send an email confirmation to you.
     
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  2. shannah

    shannah Senior Member

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    Did anyone watch any of the conference tonight?
     
  3. shannah

    shannah Senior Member

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    About 100 members of the public shared their experiences with Lyme disease at Old City Hall as part of Day 1 of a conference to develop a federal framework on Lyme disease.



    Wilson gave opening remarks at the conference, praising Green party Leader Elizabeth May and other MPs who were responsible for the introduction and approval of Bill 442 in December 2014. The law calls for a federal framework on Lyme disease, focusing on better surveillance, best practices, education, and awareness and research.
    Wilson said his foundation and other stakeholder groups were never included in the discussions about Lyme disease until Bill 442 forced it upon the Public Health Agency of Canada.



    Dr. Gregory Taylor, the chief public health officer of the Public Health Agency of Canada, provided some context on the controversy around the country’s handling of Lyme disease before giving his opening remarks.

    “When you get (Lyme disease), your body produces antibodies to the organism to kill it off. So we look for those in the blood, and our lab in Winnipeg does that work,” he says.

    However, diagnoses can differ from lab to lab, he said. Taylor said what his lab uses in the interpretation of findings are the same standards as used at the Centers for Disease Control and Prevention in the U.S. and in Europe.



    The conference, which continues Monday and Tuesday, will include presentations from medical professionals who will be addressing the three main pillars of Lyme disease: surveillance, diagnosis and education and awareness.


    http://ottawacitizen.com/news/local-news/lyne-disease-sufferers-share-their-stories-at-conference
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    More evidence of systemic failures in our healthcare system.
     
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  5. duncan

    duncan Senior Member

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    Those three main pillars of Lyme disease slated for discussion don't seem to include treatment.
     
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  6. shannah

    shannah Senior Member

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    You're so right! How can that be? Pillars - not including treatment! How hilarious ... and sad all at the same time!
     
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  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Zhang is saying need 3 antibiotics to eradicate lyme (sounds similar to HIV treatment, except a cure) - cites in vitro studies.
     
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  8. duncan

    duncan Senior Member

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    Zhang, Embers and Lewis - in separate efforts - also suggest pulsing as a necessary treatment component.
     
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  9. shannah

    shannah Senior Member

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    I was on triple combination antibiotic therapy for years, changing combinations every 6 weeks. Still sick. Still deteriorating.
     
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  10. duncan

    duncan Senior Member

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    Yeah, I'm thinking there is a reason they are not touching treatment - persisters being one, cross-species infections being another.

    Somebody came out recently with what appears to be a genus-level test...cannot remember. This is the kind of thing you hope they cover in the diagnostics talk, but somehow I doubt it.
     
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  11. maple

    maple

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    Those who are able to listen in to these sessions, please keep us posted.
     
  12. Justin30

    Justin30 Senior Member

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    Canada is failing its citizens I am not just saying this because I have ME..but this goes for Lyme Disease, OI , Autoimmune diseases and more....

    I used to love being Canadian and am ashamed to be at this point.....the lack of care and support is beyond acceptable.....
     
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