1. Guest, the 'News in Brief' for the week beginning 16th November 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, NICE have published their draft guideline for ME/CFS, click here to read about it.
    Dismiss Notice

Patient Submissions to The Canadian Pain Task Force

Discussion in 'Advocacy Action Alerts' started by brf, Feb 28, 2020.

  1. brf

    brf Established Member (Voting Rights)

    Messages:
    79
    Likes Received:
    452
    Location:
    Canada
    The Canadian Pain Task Force is asking for your input to help the Government of Canada better understand and address the needs of the millions of Canadians who live with pain.

    This, of course, means people with ME too!

    With reported figures as high as 94% of our ME community experiencing pain as part of their illness profile, this is a critical issue for our patient population and crucial that our patient population be represented in this important process.

    Our needs have never been recognized or included in a national pain plan before. Let's make sure they are this time around!

    There are several ways to participate as outlined below. Please take a few minutes to think about what you want our government to know about your chronic pain. An important point to include would be that, while exercise may be beneficial for some pain conditions, it is definitely contraindicated for ME.

    Millions Missing Canada is submitting a document on behalf of Canadian ME patients and there has been strong representation from ME advocates at some of the formal meetings. But a few voices is not enough. We need LOTS of voices!

    As part of the questionnaire, it asks what you think and how the situation can be changed, so it would be good to be prepared.

    For those with ME, we want:
    • pain practitioners to be educated about our illness;
    • appropriate modalities only administered;
    • exercise recognized as being contraindicated for ME and even being potentially harmful;
    • LDN to be included as a recommendation which brings pain relief for many with ME.

    It's only when our voices are heard that we can expect change to happen. There's nearly 600,000 of us.

    Please make the effort to participate and share widely if you see the messages on social media.

    Thanks so much.

    Additional information, the Questionnaire and an Outline of how to submit your personal experience can be found here at this link. The Questionnaire can be filled out in stages and your work can be saved to continue at a later time. https://www.letstalkhealth.ca/pain?tool=survey_tool#tool_tab

    Further details as to how to participate by mail or email can be found here.
    https://www.canada.ca/en/health-can...uEP9ki1CogD5zrQlKLMKcPgV-lYtOQAFMHTpNTKZmHs1A
     
  2. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
    650
    Likes Received:
    3,389
    something of a double edge sword since pain clinics are swallowing the psyche approach as in accept ignore and go away .
     
    Invisible Woman, ScottTriGuy and brf like this.
  3. brf

    brf Established Member (Voting Rights)

    Messages:
    79
    Likes Received:
    452
    Location:
    Canada
    The Pain Task Force in Canada seems to be leaning towards exercise and CBT, which is why it's so important right now to let them know the needs of those with ME are different.
     
  4. Lilas

    Lilas Established Member

    Messages:
    8
    Likes Received:
    73
    I absolutely agree brf. I filled out the questionnaire, clearly testifying that psychosocial strategies have no effect on my moderate to severe chronic pain. I specified that the government should put money on biomedical ME research and pharmacotherapy.

    PS: Excuse me for spelling mistakes, english is not my first language...
     
  5. brf

    brf Established Member (Voting Rights)

    Messages:
    79
    Likes Received:
    452
    Location:
    Canada
    Awesome @Lilas

    This is a golden opportunity for our community. With strong representation from ME advocates at recent meetings of the Task Force, we already have their ear. We just need to increase the volume now, so to speak.

    Thanks so much.
     
  6. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    662
    Likes Received:
    5,982
    Location:
    Toronto
    Done.
     
    Invisible Woman, Gigi300 and brf like this.
  7. brf

    brf Established Member (Voting Rights)

    Messages:
    79
    Likes Received:
    452
    Location:
    Canada
    Awesome — thanks @ScottTriGuy.
     

Share This Page