A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
Discuss the article on the Forums.

The ME Crisis: Meeting Date Set for Ottawa

Discussion in 'Action Alerts and Advocacy' started by shannah, Mar 16, 2017.

  1. shannah

    shannah Senior Member

    ME Crisis 1.jpg

    Meeting for ME: The Myalgic Encephalomyelitis Crisis in Canada to be Discussed

    Patients and Advocates Connecting With Ottawa Officials

    The meeting to discuss the Myalgic Encephalomyelitis crisis in Canada will take place with Minister of Health Philpott’s Director of Policy on March 23rd.

    Over the coming days, in anticipation of the meeting, we will be featuring letters, or portions of letters, on our facebook page. These are written by several Canadians seriously ill with ME, who are fed up with the treatment and non-treatment they’ve been receiving for far too long now. Their letters will be presented during this meeting.

    Each person with ME has their own unique story. Each story of ME has its own unique perspective. Yet each one also represents tens of thousands of other Canadians all across this country living and struggling with their own personal daily battle with ME.

    We’ll hear from a person, severely affected by ME, whose seemingly endless fight with their insurance company has been a living nightmare. We’ll hear from a young person on her way to fulfilling her dreams at university only to have them abruptly interrupted and snatched away by ME.

    We’ll hear from a programmer and a partner in a successful company who has been robbed of his career, business, livelihood and independence – all by ME - and now must rely on family members for help.

    We’ll hear from a long term severely ill sufferer and what it’s like for those who have been sick with ME for more than a quarter of a century with this disease and how, in all that time, they’ve watched and waited, quite unbelievably, while nothing has changed in terms of government intervention and support for ME.

    We’ll hear from a mother who lost her son to this disease and a daughter who lost her mother to ME.

    Throughout the stories you will hear common themes of trauma, ignorance, and the many deficiencies in, and betrayals of, the health care system - with no help in sight for this ME crisis, and only silence from health care officials.

    You will also see people of courage, optimism, hope - people transcending incredible pain, loss and hardship to face each new day with ME.

    We’re encouraging Canadians with ME and their loved ones to let Minister Philpott know how excited and hopeful we are about this meeting to stop the harm, start the research and start the treatment by sending her messages of gratitude and thanks via Facebook, Twitter and email.

    Send your own positive message or share one of ours found below.

    Sample Messages To Send Out:

    For Facebook: @janephilpott

    Go directly to Minister Philpott’s page, tag her, and post this message:

    Jane Philpott Thanks so much for meeting with patients and advocates from the ME community about the Myalgic Encephalomyelitis crisis in Canada. We are looking forward to your help in getting us access to medications like Ampligen and antivirals.


    For Twitter: @janephilpott

    Thanks for meeting about the ME Crisis in Canada. Looking forward to solid productive solutions for us @janephilpott #MyalgicE #pwME


    For EMail:

    Dear Minister Philpott,

    Thank you so much for meeting with ME patients and advocates to discuss the crisis in Canada affecting over 400K Canadians severely ill with Myalgic Encephalomyelitis.

    We very much look forward to your help to stop the harm of contraindicated treatment and start the research with fair funding.



    Comment at:


    View attachment 19929
    Last edited: Mar 17, 2017
    Anabel, PatJ, concepcion and 16 others like this.
  2. Old Bones

    Old Bones Senior Member

    For "Old Fossils" like me who aren't on social media, here's another way to contact Health Minister Philpott:

    Contact information
    70 Colombine Driveway,
    Tunney's Pasture
    Postal Location: 0906C
    Ottawa, Ontario
    K1A 0K9
    Telephone: 613-957-0200
    Fax: 613-952-1154

    I composed a letter describing the devastating losses those with ME endure, and comparing the diagnosis and treatment available for recognized illnesses vs the complete abandonment of ME. Just sent it by fax, and will follow-up with the paper copy via "snail mail" tomorrow.
  3. shannah

    shannah Senior Member

    Excellent @Old Bones
    I can post the entire message for those who don't get on social media.
    Kati likes this.
  4. TigerLilea

    TigerLilea Senior Member

    Vancouver, British Columbia
    Sorry, I couldn't read the original post. I don't know if you used bold but I found it very hard to read and I don't usually have that problem on this forum. :(
    shannah and Valentijn like this.
  5. shannah

    shannah Senior Member

    I'm glad you mentioned something @TigerLilea .

    I merely copied and pasted and ran quickly away, noticing something seemed odd but not pausing long enough to realize it had copied over with the bold formatting. :)

    PatJ likes this.

See more popular forum discussions.

Share This Page