Petition 'Open Letter to the Minister of Health of Canada' re ME Crisis and Epidemic Numbers

Discussion in 'Advocacy, Contests and Events' started by shannah, Sep 16, 2017.

  1. shannah

    shannah New Member

    Hi Everyone,

    Please sign, share and 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 so much.


    Dear Health Minister Petitpas Taylor,

    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

    Myalgic encephalomyelitis is:
    • A serious complex multi-system neuroimmune disease
    • Occurs in sporadic and epidemic forms
    • Believed to be caused, like poliomyelitis, by enteroviruses
    • First identified in 1934 - initially called ‘atypical polio’
    ME disables and kills:
    • About 25% so ill they are housebound or bedridden
    • Severely ill cannot stand or sit up or speak
    • Require a dark room, no sound, no visitors, and a feeding tube
    • Average age of death is 56 years old
    Recent ME research:
    • People with ME are in a “hypometabolic” state
    • Has found “something being released in the serum” of people with ME
    • Biomarkers identified: “Remarkably, 17 cytokines were associated with severity”
    (Mis)Treatment of ME patients:
    • Harmed by contraindicated treatment
    • Lowest quality of life
    • Highest poverty - often denied disability benefits
    • Highest food insecurity - too ill to shop or prepare food
    • Lowest research funding - by far - due to systemic bias

    Ampligen is medication for ME:
    • Only one medication, Ampligen, approved for ME in other jurisdictions
    • Millions Missing Canada is collaborating with a Canadian physician and Hemispherx Biopharma, the makers of Ampligen, to bring it to Canadians with ME.
    • Quote from Canadian who received Ampligen in another country:
    I was completely bed bound and requiring 24 hour nursing before my treatment with Ampligen. On Ampligen, I was back to full time study and also able to exercise.
    • Ampligen used by more than 1,200 people in 93,000 doses
    • Most effective within the first eight years of illness. Every year that goes by shuts door to hope for thousands of ME patients.
    We, the undersigned, are demanding Health Minister Petitpas Taylor:
    • Initiate an emergency response as was done with H1N1, SARS, and Zika, to protect and treat Canadians
    • Invest in ME research, at least $88 million is missing each year
    • Fast-track access to Ampligen medication

    Minister Petitpas Taylor, only you have the power to stop the harm, fund the research, and start the treatment.

    Sincerely,
    Millions Missing Canada
    The National ME/FM Action Network
    The ME/FM Society of BC

    CC: Prime Minister Justin Trudeau; Caroline Pitfield, Director of Policy, Health Canada; Dr. Siddika Mithani, President, PHAC; Dr. Teresa Tam, Chief Public Health Officer, PHAC; Dr. Graham D. Sher, CEO, Canadian Blood Services; Dr. Roderick McInnes, Acting President, CIHR; Marilyn Desrosiers, Manager Business Development, CIHR; Nathaniel Erskine-Smith, MP Beaches-East York

    * “chronic fatigue syndrome” - a misnomer, burdened with a negative psychological connotation, is often conflated with the official World Health Organization term ‘myalgic encephalomyelitis’, describing the muscle pain and inflammation of the brain and spinal cord.

    Video clip and more at:
    https://www.change.org/p/health-min...open-letter-about-sharp-increase-me-diagnosis
     
    JustAmanda and Seanko like this.
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