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Canadian Petition: Make ME Research A Mandate Priority

Discussion in 'Petitions' started by shannah, Apr 30, 2016.

  1. shannah

    shannah Senior Member

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    Please sign and circulate. Show Canadians the same support that they show the international community.

    To: Dr Jane Philpott, Minister of Health,
    Justin Trudeau, Prime Minister

    Dear Minister Philpott,

    Over 400,000 Canadians are living and suffering with myalgic encephalomyelitis (ME). About 25% of people with ME are severely affected and home or bed bound. As you know, ME is a chronic, complex, multi-system disease. You may not know that zero funding has been allocated to biomedical ME research this year. Zero.

    Canadians living with ME are in dire need of investment in biomedical ME research. We are looking toward the new government and new Minister of Health for your leadership for our neglected disease.

    Some group always falls into the cracks of the medical system. We are that group. We are over 400,000 Canadians and we are sick - yet we have no medical specialists, no biomedical researchers, and no treatment options.

    Why is this important?
    Recent international ME research are discovering biomarkers (natural killer cells, cytokines). Off label medications (Ampligen, Rituximab) are proven effective in substantial numbers of ME patients. The National Institute of Health (NIH) has announced a ramp up in support of ME funding. Now is the time for fair ME funding of $10 million to ramp up and roll out research.

    We have seen quick and decisive action by this government over the Syrian refugee crisis. Canadians living with ME also need quick and decisive leadership to deal with this domestic crisis.

    https://my.meaction.net/petitions/m...&source=facebook-share-button&time=1458738792
     
    L'engle, Mij, panckage and 6 others like this.
  2. A.B.

    A.B. Senior Member

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    I think it would be best to avoid exaggerating the Ampligen and Rituximab findings. They have not been truly proven to be effective, and not in "substantial" numbers, at least in a clinical trial context. In my opinion, consider changing the wording here. You could give more room to the IOM report, conclusions and Collin's plans to increase funding.
     
    Justin30, Mary, TiredSam and 6 others like this.
  3. shannah

    shannah Senior Member

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    Thanks for your thoughts @A.B.

    I'll alert @ScottTriGuy to this thread. It's his petition and it looks to me like he chose his words carefully.
     
    Justin30, ScottTriGuy and *GG* like this.
  4. *GG*

    *GG* Senior Member

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    Concord, NH
    Yes, and a 10 page PDF is available.

    GG

    Edit: Well it was a good thing. I gave 5 copeis to my Uncle who lives in Alberta, and perhaps my uncle in Quebec got a copy? He's not good with English though. Could not find a copy of the CCC, had a Tiger on the front, was in French. Guess I could look for it online now :)
     
    Last edited: Apr 30, 2016
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada
    Thanks for the heads up - I wrote that draft months ago but did not release to the public, so I'm not sure how it got out there - I'm editing now.
     
    Mij, Justin30, L'engle and 1 other person like this.

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