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Help share our petition: Open Letter to Canadian Health Minister re Epidemic of ME

Discussion in 'Action Alerts and Advocacy' started by ScottTriGuy, Aug 8, 2017.

  1. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    We are putting loads of media and public pressure on Health Minister Philpott with our Open Letter to her and you can easily help us by signing and sharing our petition on Facebook, twitter, etc.

    We are demanding an emergency response to the Canadian ME epidemic + the missing $88 million in research funding + access to medications including Ampligen:

    https://www.change.org/p/jane-philp...increase-me-diagnosis?source_location=minibar

    CTV, a national broadcaster, will air a piece on their evening news tonight. Will add the link here when available.

    Here is the start of the Open Letter:

    Epidemic?

    The medication Ampligen needs to be fast tracked

    OPEN LETTER TO HEALTH MINISTER DR JANE PHILPOTT

    Another myalgic encephalomyelitis epidemic?

    Blood borne? Researchers find “something being released in the serum

    Dr Byron Hyde: myalgic encephalomyelitis is an “analog to poliomyelitis

    37.6% increase in diagnosis - over 560,000 Canadians ill

    25% housebound or bedridden

    Where is the emergency response?

    Dear Health Minister Philpott,

    Canada has the highest myalgic encephalomyelitis rates (ME) in the world at 1.9%

    • More than 560,000 Canadians living with ME in 2015
    • A 37.6% increase over the previous year
    • The previous (recorded) Canadian ME epidemic was in 1984
    • Ampligen is the only medication approved for ME in other countries
    ...

    Thank you!
     
    Hip, Nielk, slysaint and 14 others like this.
  2. Skycloud

    Skycloud Senior Member

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    I'm in the UK - are signatures from non-canadian residents wanted?
     
    Tally and ScottTriGuy like this.
  3. Chris

    Chris Senior Member

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    Scott, good for you--maybe, just maybe, Minister Philpott will notice. Where did you find the new statistic? I suspect the increase in RF emissions as at least partly responsible for the apparent increase, as I suspect it in the also rising incidence of Alzheimer's and Autism Spectrum disease. Martin Pall has written on this--as you may remember, a good many years ago he wrote a book "Explaining Unexplained Diseases" (approx title?) which had a major impact on some ME researchers, including Paul Cheney.
     
    concepcion and ScottTriGuy like this.
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    For sure, and thanks for mentioning that - the more of a global response, the more pressure our Health Minister will feel, so yes please sign and share with your UK folks too.
     
    bspg, Tally, Mary and 3 others like this.
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    We were forwarded an email thread where Statistics Canada confirmed the 2015 data that is not yet public.

    Seemingly someone at Stats Can or Health Canada decided that an extra 150,000 Canadians with ME in one year was not significant. Why bother to investigate when we can just say it was a 'content change' to our survey. Its only that fake disease of those lazy good for nothings.

    But now they seem to be trying to say that because they changed the question slightly in 2015 (basically instead of just 'Have you been diagnosed with chronic fatigue syndrome?', they also added something like 'Its a complex illness, sometimes called myalgic encephalomyelitis').

    The inference being that 38% of people with me/cfs said 'no' to the cfs question because they have 'me'. We all know the 2 terms are joined in literature and in the minds. So that argument just isn't possible.



    Even if it was the case, that means that since at least 2003, Statistics Canada have been missing 38% of Canadians with ME in their data collection, raising serious questions of their competency.

    If Stats Can contention of a question tweak as the reason for the 38% increase, it would also mean that instead of Health Canada condoning the harm and neglect of 410,000 Canadians with ME since at least 2003, they have been unconscionably neglecting 560,000.

    No matter which way you cut it, Health Canada has, and continues to fail, Canadians with ME.

    Shameful.
     
    Skycloud, Jan, Chris and 3 others like this.
  6. joeblow604

    joeblow604

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    Thanks for all your hard work @ScottTriGuy Looking forward to the news tonight.
     
    Snowdrop and ScottTriGuy like this.
  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Thanks - I got word from the producer that it will be on the 11pm news (unless something big gets it bumped...damn that Trump).
     
    bspg and concepcion like this.
  8. Mary

    Mary Senior Member

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    Southern California
    And U.S. too I presume? well, actually, anyone anywhere, right? :)
     
    Skycloud likes this.
  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Yes, US and every where can sign. Thanks!
     
    bspg and Mary like this.
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Trump's 'fire and fury like the world has never seen' has bumped us from the news tonight.

    Just our luck, WW III breaks out and preempts our media coverage.
     
  11. halcyon

    halcyon Senior Member

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    On the plus side the mutual assured destruction will take care of our ME problem.
     
  12. *GG*

    *GG* Senior Member

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    Concord, NH
    Oops, I agree with @halcyon :(

    GG

    Done btw.
     
    bspg and ScottTriGuy like this.
  13. bspg

    bspg Plant Queen

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    :cry::cry::cry:

    I signed too.
     
    shannah and ScottTriGuy like this.
  14. NelliePledge

    NelliePledge plodder

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    signed:thumbsup:
     
    shannah, bspg and ScottTriGuy like this.
  15. shannah

    shannah Senior Member

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    As a result of the unexpected shuffle in the Canadian cabinet, a new federal Health Minister was appointed on August 28, 2017.

    The new Minister of Health Ginette Petitpas Taylor has a social work background and we can only hope her training and experience better equips her to act for the ME community than that of her predecessor who was a physician.

    The petition was updated immediately following the announcement reflecting the change.

    Help reach those who aren't on social media so they can sign the petition too. Forwarding the information and link to your family, friends, caregivers and support groups would be greatly appreciated.

    Just a reminder that international signatures are welcomed.

    Thanks.


    https://www.change.org/p/health-min...increase-me-diagnosis?source_location=minibar
     

    Attached Files:

    perrier, Joh, panckage and 2 others like this.
  16. shannah

    shannah Senior Member

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    Petition Update

    The petition is now available in French. The total number is sitting at a little over 2500 signatures.

    We've been slowly finding avenues to reach beyond our own ME community on social media. Now if we could only find ways of reaching those with ME who aren't on social media at all. Any suggestions?

    Just a reminder that international signatures are welcomed and appreciated.

    Thanks

    English: https://www.change.org/p/health-min...open-letter-about-sharp-increase-me-diagnosis

    French: https://www.change.org/p/minister-o...a-ministre-de-la-santé-madame-petitpas-taylor
     
  17. Nielk

    Nielk

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    Signed and shared.
     
    ScottTriGuy and shannah like this.
  18. shannah

    shannah Senior Member

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    @Nielk
    Thanks so much!
     
    Nielk likes this.
  19. perrier

    perrier Senior Member

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    The minister needs to speak with Byron Hyde, or to see Unrest.
    Great job you are doing.
     
    ScottTriGuy likes this.
  20. shannah

    shannah Senior Member

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    @perrier

    Yes to all of the above suggestions.

    For the time being, the new Minister of Health who took over at the beginning of September is busy being briefed by various branches of government and making introductory rounds with organizations.

    We have a group of advocates up her way who would love to organize a screening for the parliamentarians and health officials up in Ottawa. However, they've discovered (like so many of us) that their good intentions are far exceeding their resources to pull it off! :)
     
    ScottTriGuy and perrier like this.

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