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Millions Missing for ME Canada: developing persistent & consistent campaign

Discussion in 'Millions Missing Campaign' started by ScottTriGuy, Jun 28, 2016.

  1. Kati

    Kati Patient in training

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    Re: class action type of lawsuit, the problem falls in the jurisdiction of health care delivery (provincial) and what Canada is responsible for. I do not think but I maybe wrong, that CIHR is forced to research everything. The problems surrounding are complex and are here due to so many factors: trivialization of disease by physicians, the fact we do not belong to any medical specialty, the fact that international science hasn't been able to find a biomarker, the social stigma, and we are not all dropping dead or requiring hospitalization. We are truly invisible.

    Personally I think lobbying and increased visibility would be more effective than lawsuit at this time. And I am so glad there is another Millions Missing event coming up.
     
    Last edited: Jul 7, 2016
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  2. Kati

    Kati Patient in training

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    Here is a response to the Millions Missing campaign from Liberal MP Hedy Fry:

    Thank you for writing to my office with regard to support for those suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). I appreciate hearing from constituents, as it keeps me grounded and helps me focus on your priorities, as your Member of Parliament.

    Our new Liberal government, through the Canadian Institutes of Health Research (CIHR), contributes to the research agenda for conditions such as ME / CFS and fibromyalgia (FM).
    The CIHR’s Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA) supports the creation of a national network for translational research in ME/CFS in the current fiscal year. This network will assist in capacity building and offer an a forum to discuss ideas and to share best practices. In addition, this will provide the infrastructure required to undertake therapeutic and diagnostic clinical studies in Canada. Further, this network will set the stage for future international collaborations.

    From the very beginning, the CIHR-IMHA has engaged, and continues to engage, with patients and patient advocates through a Knowledge Exchange Task Force (now known as the CIHR IMHA Research Ambassadors), which envisioned the development of a new and innovative approach to link researchers and key stakeholders, many of whom suffer from chronic diseases.

    Currently, CIHR-IMHA is also participating in a James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. This partnership’s goal is to solve the unanswered questions on the management of adult fibromyalgia from patient, caregiver, and clinical perspectives, and then prioritize those questions that the participants find to be most pressing. Given the known overlap in FM and ME/CFS symptomatology, this partnership shall hopefully help us to better understand and manage ME/CFS too.

    Further information about this work can be found on the CIHR’s website: http://www.cihr-irsc.gc.ca/e/49106.html.

    Once again, thank you for writing to me about ME/CFS. I appreciate the opportunity to present some of the concrete actions being taken by our government. Please do not hesitate to write again should you have any further questions, on this topic or any other.
    Sincerely,

    Hon. Hedy Fry, PC, MP
    Chair, Pacific Liberal
     
    Last edited: Jul 10, 2016
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  3. shannah

    shannah Senior Member

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    Bogoroch and Associates, in downtown Toronto, make regular presentations to Fibro and ME groups. Don't know if they would be the right fit but they are familiar with the health challenges people with these conditions face.

    If they aren't the right fit, perhaps they can recommend a firm that would be. Free consultations.

    http://www.bogoroch.com/
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Awesome - its on my to-do list for tomorrow.
     
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  5. shannah

    shannah Senior Member

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  6. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks @shannah - those are quite instructive for our challenges - I wonder if the lawyer got a (meaningful) response from the Minister - and if the lawyer actually launched a lawsuit - I note the lawyer himself has Lyme - I'll reach out to him next week for a chat.
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    I know this is an old thread. I just reread a bit here.
    Will anything be happening in Canada or Ontario for the Millions Missing Campaign for May 12th?

    Also, I know of another lawyer in Toronto who deals with disability and has attended a lecture by Byron Hyde in Toronto. He mostly deals in disability claims/wrongful dismissal but might also do class action.

    Hugh Scher http://www.lostjobs.ca/

    Also, since I'm here--a Thank-you to all who contribute to getting things done. I wish I could help. I hope as time goes on we might find more here who are able to contribute and help since it's difficult for us all.
     
    Last edited: Mar 16, 2017
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  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Thanks for the referral @Snowdrop I believe he's on the Action Network's Board or affiliated some how.

    Yes, we do need to build capacity for advocacy, as you know, there is only so much the sick and disabled can do - we need some more 'healthies' to make bigger, faster gains so if you know of any...
     
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